Intel EIRE Health Innovation Lab: WhoCaresfortheCarers Ethnography, 2011

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EXPERIENCERESEARCHFINLAND | INDIA

HOTHOUSE2011



p. 2

contact

WHO CARES FOR THE CARERS: Insights to Design for Health Innovation

by Han Pham , Anamika Debnath and Anna Kulonena Hothouse 2011 project for Intel | Swisscom | Brightsolid | Fjord

MSc Design EthnographyUniversity Of DundeeNethergateDundeeDD1 4HN ScotlandAugust 2011

http://www2.idl.dundee.ac.uk/desethno/

Han Pham, [email protected]

Anamika Debnath, [email protected]

Anna Kulonen, Finlandanna@persoona.



I.

INTRO

III.PLACE &

PEOPLE

IV.

ETHNOGRAPHICINSIGHTS

V.

OPPORTUNITYMAPPING

VI.

DESIGNAPPLICATION

VII.

CONCLUSIONS

II.RESEARCHDESIGN

VIII.

THANK YOU

IX.

APPENDIX

06 abstract

07 introduction

08 MSc design

ethnography

09 hothouse 2011

10 clients

13 focus

14 need for research

15 questions17 research plan

17 methods

20 eld topline

20 nland snapshot

21 india snapshot

23 research matrix

28 1 - basics

29 2 - afnitizations

36 3 - synthesis

39 ethnographic

liquidity

40 ethno-speak 41 process map

42 tips & tricks

43 4 steps to

actionable

design research

44 design for the

present: service

mapping46 discussion

47 service map

closeup

48 design for the

future: system

mapping

53 phase: who

58 phase: coping

63 phase: crisis69 phase:

commuinity

78 phase: self care

85 conclusions at a

glance

88 design for thepresent: insights

96 design for the

future: insights

96 design principles

97 building on intel

99 thank you

102 bios

106 bibliography

108 question guide

112 participant list

t a b l e o

f C O N

T E N T S



“

...”

“Right now in the UK, thereare 6 million amily carers

who are unpaid, saving theNHS 87 billion GBP a year ...

Tere’s very little support orthese people. What happens

i this network went away?”

I. I N T R O D U C T I O N



p. 5

WHAT IFthe world

listenedbetter...

what would welearn?

IINTRO



p. 6

IN

BRIEF

“…whatever be her external demeanor, she is being destroyed

internally. Her brain is being destroyed internally which is not

understood by those who are allowing it to happen because she is

so convincingly natural that you won’t understand. Till the time

one day I found that she cannot read what you call clock. She can-

not dial the telephone.”

– Brigadier Bhattacharya

ABSTRACT

“Right now in the UK, there are 6 million family carers who are unpaid, saving the NHS 87 billion GBP a year (close to the equivalent of the whole NHS budget).

There’s very little support for these people. What happens if this network went away?” (Personal communication with Dr. David K. Prendergast, June 8th, 2011)

Leinbach (2002) proposes that designers, and by extension researchers, are not in the business of creating products but rather in the knowledge transfer business.

In his view, design is a service that generates and transfers knowledge. Therefore design management is ultimately knowledge management and intellectual

capital is the totality of human brainpower assets of an organization.

In this report, we share how a small-scale, multi-site, ethnographic research project over a limited three-month time frame during the summer of 2011 led to

the development of both insights and new opportunity mapping frameworks to understand how to design usable products and services for the expressed and

observed needs of informal caregivers within India and Finland. In particular, we highlight our design research methods and how they helped us move from ob-

servations to business-ready contexts that provided relevant, salient, appropriate and actionable design scenarios for digital technology.

Our research was conducted on behalf of Intel’s Health Research and Innovation group, the Technology Research for Independent Living (TRIL) Centre, and the

University of Dundee Hothouse 2011 cohort which included our additional educational partners Swisscom, Fjord and brightsolid. The research was conducted in

Finland, India and the UK, using a mixed methodology to study the lived experiences of informal caregivers across our eld sites, as well as the support systems

(civic, community, personal, formal or informal, in-person or online) that are emerging and evolving to “care for the carers,” and examined how these coping

strategies may be supported, improved or augmented, individually or through the community, through the culturally appropriate use of digital technology.

This report provides direct insights, stories and perspectives of the current expressed and observed caregiver needs and coping strategies within a design eth-

nographic framework to actualize those insights into clear design opportunities. The concept of ethnographic liquidity, or the ability to deliver value within and

across an organization of multiple stakeholders and diverse backgrounds was a driving focal point of our work. The following report is designed to strike a bal -

ance between a deep social science grounding and a design-forward style in order to facilitate the necessary knowledge transfer for the research (and our

participants’ voices) to be successfully understood, engaged and championed throughout the design process, leading to new ways of understanding, translat-

ing and amplifying the original perspectives shared to design not only for the present, but to help imagine the new health technologies of the future.

IINTRO



p. 7

hello.

THE BOOK, MASSIVE CHANGE, (MAU, 2004) BEGINS WITH AN ILLUMINATING PROPOSITION:

“The twentieth century will chiey be remembered by the future generations not as an era of political conicts or technical inventions, but as an age in

which human society dared to think of the welfare of the whole human race as a practical objective.” – Arnold J Toynbee, English historian (1889-1975)

During the course of our Hothouse 2011 research project, which aimed to understand how to better design for the lives of caregivers within and across two verydifferent cultures, we also received some incredibly practical advice from our client and mentor, Dr. David K. Prendergast of Intel on how to balance complexity,

partial truths and need for certainties:

“ …You need to interrogate concepts like healing. Likewise you are going to have to gure out when / how to represent (or not) the resultant complexity or

partial truths that you will encounter during ethnographic eldwork to an audience that loves ‘hard facts’ conciseness, and certainties. There’s loads of ways

to do this - to make them smile, cry, or preferably both – just don’t bore them!” (Thank you, David.)

At once researchers within an academic setting and consultants to a multinational corporate partner, we knew we needed to strike a balance to succeed. The

histories of anthropology and business have both encountered an interesting task of balancing (and battling) dualities: evaluating and valuating cultures and

ideas; navigating (and indeed elevating) either objectivity or subjectivity; observing and being observed.

The introduction and development of the area of design ethnography presents a more humanistic, exploratory methodology for gaining insights into the

convergence of business, anthropology and design. It is a eld that is rising in prominence along with new, collaborative methods of design – variously called

design thinking, user centered design, co design and more. This simultaneous emergence allows for some possible, innovative areas of convergence where

the principles of design ethnography may help organizations (and designers) bring insights “home” from the eld as well as drive new ways of designing and

community-building through the organization and give rise to a more equitable and culturally-relevant model of co-design.

This summer, our motley team of design researchers navigated the ooded streets of Kolkata, an ash cloud in Dublin, riots in both India and London, and a few

surprise emergency rooms visits in the name of research we loved, and, about.. well, love. Informal caregivers live an incredibly rich and complex life caring for

others in a way that is often rooted in actions that are constant and unseen. We were grateful to be allowed into the lives of those we met, and allowed to see,

and to share what we witnessed. - Anna, Anamika and Han

iINTRO



p. 8

UNIVERSITY OF DUNDEE’S MSC DESIGN ETHNOGRAPHY: BRIDGING PEOPLE AND DESIGN

The rst thing many of us are asked when they nd out we are studying in Scotland is: “Why DUNDEE?”

It’s an easy answer. The University of Dundee’s Masters of Science in Design Ethnography, established by Dr. Catriona Macauley, was founded in 2009 as the rst gradu-

ate program in the world in this area. As a joint program between the School of Computing and the Duncan of Jordanstone College of Art and Design, we were given

a literal 24-hour access pass to think about the intersection of technology, culture, design and business.

Entrepreneurs collided with product designers; a professor of fashion design rubbed shoulders with IT specialists and former journalists – and we were asked to imagine

the next wave of design research – one that was not only rapid but rigorous, creative but grounded.

As suggested, the advantages of a people-centered approach extend beyond the eld to leverage real-world benets within business. According to Gobe (2002),

“Corporations with EI (Emotional Intelligence) have an imaginative and innovative culture turned toward people, exemplied by the extra steps they take in

knowing well and serving well the communities in which they operate.”

These “extra step” evinced by the ethnographic process can be as simple as dening the problem within the problem for companies interested in placing their products

within a relevant social (and consumer) context:

“[Ethnographers] help reframe questions to make cultural implications implicit within the research questions: “What are the unmet needs in spray cleansers”

becomes “What does clean mean today?” “What are the values of home that are embodied by cleaning habits, routines, and preferences?” (Denny, 2002).

The application of understanding of materiality to the broader personal and social context is not new; its modern practitioners continue a tradition of uniting the tan-

gible with the intangible. Tilley (2001) shares an example of a researcher in Indonesia using material goods as a medium to eliciting personal narratives:

When Hoskins was interested in recording personal life histories in Sumba, Indonesia, she found that the only way in which it was possible to elicit this information was

to get people to talk about things. Talking about things was a way of constructing, materializing and objectifying the self, for things contain and preserve memories,

embody personal experiences. The betel bag contained ancestral words, the spindle was a lost husband, the drum evoked female receptivity to a male voice.

Both design and ethnography seek to be evocative and informative, ideally coupled in an insightful and relevant way that can illuminate and better how we live andrelate to each other and our world. According to Flow, an interactive design consultancy, theoretical research has two main aims – the validation of existing knowledge

and the acquisition of new knowledge (Flow, 2009).

Using “design ethnography” -- principles and techniques taken from social sciences such as sociology, anthropology and psychology – to inform design decisions, busi-

ness can nd design solutions that are applicable in the real world, with a sustainable context outside of laboratories and meeting rooms.

IMSc

DesignEthnography



p. 9

HOTHOUSE SUMMER 2011 - RISING TO THE CHALLENGE

This summer, ve clients – Intel Health Research and Innovation in Ireland, Intel Experience and Interaction Labs in the US, Swisscom in Switzerland, and brightsolid and

Fjord in the UK – chose to sponsor and share research under the theme of “Mobile. Migrant. Communities.” It’s an unusual step to waive non-disclosure agreements in

the name of collaborative innovation.

According to Merholz, P., Schauer, B., Verba, D., and Wilkens, T. (2008), all researchers for the American design consultancy Adaptive Path, “Ethnography isn’t right

for every organization or project. True ethnography is quite difcult and requires training, and is resource and time intensive. In the right situation they can provide

enormous insights… but ethnography is overkill for many projects. Making effective use of ethnography or other research methods requires a certain amount of

organizational readiness.”

This suggests that ethnographers’ emerging role within modern business and design contexts is not simply within the eld – their exploratory nature, intellectual adaptability

and people-focused facilitative skills are as relevant within an organization.

Squires and Byrne (2002) emphasized the shift from the original long-term, academic orientation of ethnographic research to its applied emphasis in today’s corpora -tions.

“Although the most famous published ethnographies took years of prolonged eldwork, most of these new ethnographies are done in weeks and never pub -

lished – they are conducted for public and provide organizations that need to learn and act quickly. Unlike academic investigations, applied ethnographic

analysis cannot end with descriptions or explanations. They must draw out the implications of cultural insights and offer practicable guidelines for future ideas,

plans, policies, organizations, activities, products, services, and images. Participants must become aware of, and capable of, challenging their own cultural

assumptions. In essence, the people who create these breakthrough ideas must be able to break through their own cultural limitations and set new ones, for

both themselves and those for whom they are creating. No single group of professionals can operate alone in such an ambitious effort.”

Five clients, fteen graduate students, one theme – while each team pursued individual angles on the shared focus on “mobile, migrant, communities,” we knew it

would not have been possible alone to bridge people and design.

As Dr. Macaulay wrote, the Hothouse model can provide a critical practice-based laboratory in a time when “the need for innovative, grounded thinking about

business and design challenges and opportunities is growing, [while offering]… creative new ways for industry and academia to collaborate on experience research

into cutting-edge, wide-ranging, business and design challenges and opportunities.”

We hope the following study on informal caregiving experiences within India and Finland offers a chance to practice not only ethnography, but to evoke the

actionable connections that can make it design-relevant.

IWhat is

Hothouse?



p. 10

BACKGROUND ON TRIL & THEIR RESEARCH -FOCUS

Our research team worked closely with the respected research and design team of The Technology Research for Independent Living (TRIL) Centre, a high prole re-

search collaboration on ageing research. Founded in 2007 it is a multimillion Euro collaboration between Trinity College Dublin, University College Dublin, Intel & GE

Healthcare.

According to Intel (2007),

“The ultimate goal of Intel’s healthcare research is to understand the needs of the next generation of healthcare consumers and caregivers, and to invent

the next generation of systems to support them. By helping consumers to become more proactive in managing their health, and providing caregivers (both

formal and informal) with the tools and information they need to deliver care in any setting, from the home to the hospital, Intel hopes to play an important

role in addressing the needs of the coming age wave.

Technology is not a magic bullet, but we believe that it could be an integral part of the solution to the emerging global healthcare crisis.”

ICLIENT:INTEL



“

...”

he need to tackle the

challenges is urgent. In2002, 10 percent o the

world’s population was

60 years o age or older.

By 2050, that percentage

will more than double to

21 percent, or nearly two

billion people...

I I. R E S EA R C H D E S

I G N



p. 12

WHAT DO YOU LEARN when you’re the frst

guest allowed inside

in 3 years?

IIRESEARCH

DESIGN



p. 13

RESEARCH FOCUS

Our study examines the experiences of informal (family) caregivers using a comparative approach between India and

Finland. In doing so, we would like to understand what forms of support networks and communities, whether formal or

informal, are emerging and evolving to provide support and nurture well-being among the caregivers and how these

coping strategies may be supported, improved or augmented, individually or through the community, through the cul-

turally appropriate use of digital technology.

IIRESEARCH

DESIGN



p. 14

NEED FOR RESEARCH - NOW AND FUTURE

During our study, we worked with caregivers and

medical professions supporting caregiving across a

wide variety of scenarios. However, a majority of our

participants were in caregiving situations for adults

over 60. The needs of family or informal caregivers

and the elderly is situated at an important intersec-

tion of demographic trends that can either save

(or cost) governments an enormous sum if not ad-

equately anticipated and addressed.

According to Intel (2008):

“The need to tackle the challenges is urgent. In

2002, 10 percent of the world’s population was 60

years of age or older. By 2050, that percentage will

more than double to 21 percent, or nearly two bil-

lion people.

As the elderly population increases, so will the in-cidence of chronic disease. In the United States,

while 25% of the overall population has multiple

chronic conditions, 67% of those over age 65 have

two or more chronic illnesses. These illnesses are

costly. Today, on average, as much as half of all

healthcare spending in developed countries goes

to treat diseases and conditions of the elderly.

Cost is not the only concern. As the elderly popu-

lation is increasing, the pool of healthcare profes-

sionals is shrinking worldwide.

At Intel, we believe that new technologies, de-

signed with an explicit focus on the needs of older

adults, as well as their clinicians and family caregiv-

ers, can help to meet the challenges of an aging

global population. Such technologies could ease

the burden on strained healthcare systems while

providing peace of mind and meaningful engage-

ment for the aging population. Our research into

the technology needs of the aging is focused on ad-

vancing personal health technologies, improving care

in clinical environments, and promoting standards

and policies that enable innovation and interoper-

ability across the healthcare ecosystem.”

Like Intel’s the Global Aging Experience Study,

which was to deepen “understanding of the myriad

social and cultural differences in people’s subjective

experiences of aging and health” and “… to chal-

lenge prevailing assumptions about what it means

to grow old and to identify strategic opportunities

for appropriate technologies and services for older

people,” our study focused on the personal, col-

lective and cultural implications of how caregivers

cope and, in understanding those subjective experi-

ences, to position ourselves to understand the points

of intervention that are open, and waiting, for design.



p. 15



p. 16

KEY

questionsKEY QUESTIONS – RESEARCH FOCUS:

• What is the nature/ontological status of family/informal caregiving within Finland and India?

• What is the lived experience of being a caregiver in two very different cultures (population, geography,

economy, government policy, healthcare systems, etc).

• “Who cares for the carers” within these cultures?

• Who is the primary caregiver? Is s/he hidden/visible? Why and how?

• Who else shares the experience of caregiving? Why? How is caregiving shared, if shared?

• What coping strategies (individual, psychological, emotional, family-, community-based) are available?

Missing? Emerging?

• What’s good and bad about current lived experience of carers?

• What do carers want to change about their current lived experience?

• How do organizations as opposed to individual carers view and/or address all of the above?

IIRESEARCH

DESIGN



p. 17

RESEARCH PLAN, TIMELINE

A research team of three conducted research over three weeks (June 20 – July 10) in Finland and India. To facilitate access and in-depth

context, each eld site beneted from a native speaker/citizen as eld lead during the full three week period (Anamika Debnath in India

and Anna Kulonen in Finland). The third researcher, Han Pham, was the team research lead facilitating connections and collaboration

across sites. (Note: This structure takes advantage of the natural strengths of the cultural and linguistic makeup of the team, while pro-

viding a strong team management and support base to mitigate the risks in approaching the eld.)

Our Finland research focused primarily in Helsinki and Tampere – the former as the location of nationally-focused caregiver supportand the latter as a regional/local base for gaining access to individual caregivers. Within India, our research focused in Kolkata for

organizational and individual access to caregivers and caregiving support programs, while an additional arm will explore the online

network emerging in and connected to Bangalore.

RESEARCH METHODOLOGY

Our work began with an exploratory review of literature on mobility, mutual aid and social support systems, caregiving, dementia,

and aging. In the eld, our ethnographic techniques included open-ended interviews in person and online, individually and in groups,

observations, participation in caregiver trainings and homesite visits at sites within India and Finland. Our recruitment was aided by

medical professions and community-based organizations supporting caregivers who opened their networks to us, allowing us to

interact with more than 30 participants during our eldwork, ranging in age from 35-95. However, the majority of our participantswithin India were caregivers or medical professionals supporting elder care and Alzheimer’s care.

While we were fortunate to collect both video and photographs, in addition to audio interviews and written notes, the sensitive na-

ture of our participants’ caregiving experience necessitated a careful and sensitive approach which allowed for numerous breaks in

communication to allow for caregiving, or simply to listen as stories were revealed and shared for the rst time in decades. A through

content analysis process also allowed us to develop a shared understanding across the use of four languages in our research, and the

development of subsequent knowledge transfer tools aim at continuing the longevity of the research within our client organization.

IIRESEARCH

DESIGN



“

...”

he interesting shits in

culture, values, economics

and population, have cre-

ated a tremendous market

potential or inormal care

related solutions in India.

he population o 60+

persons is in steady rise,

reaching estimated 114

million people in 2015 and

187 million in 2030.

I I I. P LA C E + P E O P

L E



p. 19

IN 2050, India will

have 16 million of

the world’s 100 million

people aected by

dementia.

IIIPLACE +PEOPLE



FIELDSITE TOPLINE: FINLAND & INDIA

In the near future both developed and developing coun-

tries will face a rise in the population of older persons. At

the same, there’s a severe shortage of health care workers

worldwide, which reached 4.3 million in 2006. These trends

– caused by migration, brain drain, withering of the joint

family system (specically for India) and increased life ex-

pectancies in the last century – predict a worldwide rise in

the ‘informal’ unpaid care by family members.

The interesting shifts in culture, values, economics and pop-

ulation, have created a tremendous market potential for

informal care related solutions in India. The population of

60+ persons is in steady rise, reaching estimated 114 million

people in 2015 and 187 million in 2030. The life expectancy

in India has risen from 37.9 years to 66 years during the last

60 years. (United Nations, 2011)

In recent times, Indian society is witnessing a gradual but

denite withering of the joint family system due to this mo-

bility and migration. With the breakdown in traditional sup-

port systems and shortage of adequate healthcare, an

increasing number of elderly require home care by family

members with or without the support of professional care-

givers. In India, professional care-giving is not yet a well-de-

ned concept. Culturally, family members have stepped in

to take care of anyone with a degenerative illness. How-

ever the specic needs and concerns of family caretakers

and their employed caregivers is still an emergent area of

knowledge.

Finland on the other hand has over 20 years history of for-

mal caregiver recognition and support. Finland’s rapidly

aging population and 39th longest life expectancy in the

world will create an enormous drain to country’s relatively

advanced community healthcare system. It is estimated

that the demographic dependency ratio (number of chil-

dren and elderly per 100 persons in working age) will reach

74 percent by the year 2035. Currently informal caregivers

are saving over 1 billion Euros of Finnish governments funds

annually. (Statistics Finland, 2009)

FIELD SITE DESCRIPTION: FINLAND

Finland is a Nordic country with total population of 5.4

million people (United Nations, 2011), 5.2 million mobile

phones and 1.8 million saunas (Visit Finland, 2011). Finland

has an average population density of 16 inhabitants per

square kilometer (United Nations, 2011), which is the third-

lowest population density of any European country (Wiki-

pedia, 2011). According to the 2009 statistics, a round 92

percent of Finns have a mobile phone and 83.5 percenthave an Internet connection at home.

Finland has a highly industrialized mixed economy with a

per capita output equal to that of other European econo-

mies such as France, Germany, Belgium or the UK. Overall

short-term outlook was good, and GDP growth has been

above many EU peers. (Wikipedia, 2011)

The life expectancy at birth in Finland is 79.3 years, and ac-

cording to the 2010 records the proportion of population

over 60 years old is 25 % (United Nations, 2011). According

to Statistics Finland, the demographic dependency ratio

(number of children and elderly per 100 persons in working

age) was 51% in 2009, and it’s estimated to grow to 74% by

the year 2035 (Statistics Finland, 2009).

The history of caretaking

Finland’s constitutional law denes the basic rights of all

the citizen, one of which is the right to social security (19§).

According to the constitutional law, everyone who’s not

capable to obtain the security, which a life worthy of a

human being would demand, is entitled to the necessary

livelihood and care. (Kaivolainen et al., 2011)

The history of caregiver’s support systems and transforma-

tion from institutional care to supporting home care is rela-

tively short in Finland. The term “caregiver” has established

in the 1990s and rst act regarding family caregiving came

into effect in July 1993. (Kaivolainen et al., 2011)

Up until the year 1970, adult children had the lawful re-

sponsibility to take care of their elderly parents and par-

ticipate, for example to the costs of institutional care. From

the 1970 legislation this responsibility was already removed,

and in 1977 also the responsibility of taking care of your

spouse was removed from the marriage legislation. This

meant that municipalities became the lawful caretaker of

its residents. (Kaivolainen et al., 2011)

Current landscape of caregiving

Finnish legislation denes that caregiver is someone who is

a kin or kith of the care receiver, and who has made the

ofcial caregiving agreement with the patient’s municipal-

ity. In the year 2009 there were about 36,000 ofcial care-

givers in Finland. However, according to the Caregiving

Survey conducted in 2008 by Taloustutkimus Oy, many of

the Finnish family caregivers don’t acknowledge of being

a caregiver. Majority of caregivers is thus outside the ofcial

support systems, even though they would be entitled to it

based on the demanding nature of their care situation.

(Kaivolainen et al., 2011). It has been estimated that there

are over 300,000 family caregivers in Finland (Omaishoita-

jat ja Läheiset –Liitto ry, 2010).

Caregivers with the ofcial caregiver agreement are enti-

tled to monthly monetary support from their council as well

as variety of social and health care services, such as meal

service, home care service, caregiver rehabilitation, day

care activities, and short term institutional care. They are

also entitled to have three holidays per month.

The national caregivers association, Omaishoitajat ja

Läheiset –Liitto ry, was established in 1991 and it’s purpose

is to provide support and operate as an advocate for the

Finnish caregivers. It provides support, counseling, educa-

tion, development programs, guide materials and support-

ed holidays for its members. (Kaivolainen et al., 2011)

The association has a broader denition for the caregiv-

ers, and it doesn’t limit it’s members to those entitled to the

ofcial support. According to the association caregiver is

a person, who takes care of their kin or kith, which due to

an illness, disability or other special need can’t cope from

everyday tasks independently. Omaishoitajat ja Läheiset –

Liitto ry has 70 local associations. (Kaivolainen et al., 2011).



FIELD SITE DESCRIPTION: INDIA

India, ofcially the Republic of India is a country in South

Asia. It is the seventh-largest country by geographical

area, the second-most populous country with over 1.2

billion people, and the most populous democracy in the

world. India is one of the oldest civilizations in the world with

a kaleidoscopic variety and rich cultural heritage.

India’s population as on 1 March 2001 stood at 1,028 million,

out of them 532.1 million males and 496.4 million females.

According to provisional results of Census 2011, India’s

population grew to 1.21 billion in 2011. India accounts for

a meagre 2.4 per cent of the world surface area of 135.79

million sq km. Yet, it supports and sustains a whopping 17.5

per cent of the world population (www.india.gov.in). In

1950 only 5.4% of the population was aged over 60 years,

but in 2010 the number rose to 7.6%. (United Nations, 2011)

In 2010, Alzheimer’s and Related Disorders Society of India

(ARDSI) estimated that 3.7 million Indian people aged over

60 have dementia , out of which 2.1 million women and 1.5

million men ( “The Dementia India Report 2010”).

According to the International Monetary Fund, India’s

nominal GDP for 2010 was US$1.538 trillion and its estimat -

ed GDP for 2011 is US$1.7 trillion, making it the tenth-largest

economy in the world. In terms of purchasing power par-

ity (PPP), India’s economy is the fourth largest in the world

at US$4.06 trillion. With its average annual GDP growing at

5.8% for the past two decades, and at 10.4% during 2010,

India is also one of the fastest growing economies in the

world.

India’s base of 81 million Internet users is the world’s fourthlargest; yet just 20 percent of India’s urban citizens are con-

nected to the Internet (Source: Internet World Stats, 2010).

Even though typical Indian consumers have no Internet

access, they consume an average of 4.5 hours of it daily

across ofine channels such as television, DVDs, and CDs ,

while they use mobile phones predominantly for voice ser-

vices (Retrieved from https://www.mckinseyquarterly.com/

Can_India_lead_the_mobile-Internet_revolution_2746).

The History of Caretaking

Traditionally, in India, the most common form of family

structure was the joint family. The extended family consist-

ed of at least two generations living together and this ar-

rangement was usually to the advantage of the elderly as

they enjoyed a special status and power. Part of the value

system of traditional Indian society was the veneration of

elders. Parents in particular were held in the greatest re-

gard. Taking care of parents in their old age was regarded

as a sacred duty of children and failing to pay back ‘Pithru

Rina’ (lial debt) would have dire consequences in after-

life. In fact, Indian religious literature, the epics, folklore and

tradition, all reect this value system (Bhat & Dhruvrajan,

2001).

In India, family have always stepped in to take care of any-

one with a degenerative illness and female members have

taken responsibility of the day-to-day care-giving. Formal

paid care-giving is yet to be accepted widely, especially

among the poor and in rural areas.

But with growing urbanization and depending on the avail-

ability of jobs, children are moving out of the extended

family set-up, leaving ‘empty nest’ behind and establish-

ing their own nuclear families. In the absence of traditional

caregivers, due to the disintegration of the joint family and

women moving out of the household, the elderly and ill

have become a vulnerable group, needing care and at-

tention.

Current landscape of caregiving

The National Policy on Older Persons (NPOP) was an-

nounced in January 1999 to reafrm the commitment to

ensure the well-being of the older persons. The Policy en-

visaged State support to ensure nancial and food secu-

rity, health care, shelter and other needs of older persons,

equitable share in development, protection against abuse

and exploitation, and availability of services to improve

the quality of their lives. Primary objectives of the policy in-

cluded:

• to encourage individuals to make provision for their

own as well as their spouse’s old age;

• to encourage families to take care of their older family

members;

• to enable and support voluntary and non-governmen-

tal organizations to supplement the care provided bythe family;

• to create awareness regarding elderly persons to help

them lead productiveand independent live.

Central Sector Scheme of Integrated Programme for Older

Persons (IPOP) is being implemented since 1992 with the

objective of improving the quality of life of senior citizens by

providing basic amenities like shelter, food, medical care

and entertainment opportunities and by encouraging pro-

ductive and active ageing through providing support for capacity building of Government/ Non-Governmental

Organizations/Panchayati Raj Institutions/ local bodies

and the Community at large. The Scheme has been made

exible so as to meet the diverse needs of older persons

including reinforcement and strengthening of the family,

awareness generation on issues pertaining to older per-

sons, popularization of the concept of lifelong prepara-

tion for old age, facilitating productive ageing, etc. The

Scheme has been revised w.e.f. 1.4.2008.

Besides increase in amount of nancial assistance for exist-

ing projects, several innovative projects have been addedas being eligible for assistance under the Scheme. Some

of these are:

• Maintenance of Respite Care Homes and Continuous

Care Homes;

• Running of Day Care Centres for Alzheimer’s Disease/

Dementia Patients,

• Physiotherapy Clinics for older persons;



• Help-lines and Counseling Centres for older persons;

• Sensitizing programmes for children particularly in

Schools and Colleges;

• Regional Resource and Training Centres of Caregivers

to the older persons;

• Awareness Generation Programmes for Older Persons

and Care Givers;

• Formation of Senior Citizens Associations etc.

National Institute of Social Defence (NISD), is an

autonomous body under the Ministry of Social Justice

and Empowerment, Government of India , runs a series

of Programmes/Certicate Courses to educate and train

persons who can provide care to older persons in the family

and community settings. The Institute is also carrying out

orientation programmes in several regions of the country to

generate awareness among senior citizens on the welfare

facilities/programmes available for them and also sensitize

government and non-government functionaries on special

needs of the elderly. However, there is no state-support or

mention of care-givers in any of the national policy yet.

Different organizations and individuals run support networks

for care-givers. A few organizations also formally train

students for care-giving. The chapters of ARDSI in India, a

few NGOS like ‘Sathi’ in Ahmedabad, a few hospitals like

NIMHANS and individuals like Ms. Swapna Kishore provides

information and support for care-giving in India.

p. 22



research MATRIX





“

...”

Tis psycho-social context

is important to design: a de-

sign solution or a particular

need may be adept at tech-

nically resolving it, but it

isn’t valuable and actionablei it alls outside the rame-

work o what the caregiver

perceives as an available and

appropriate option...

I V. E T H N O I N S I G H

T S



p. 26

THEMES #1 – PRE-CONTENT

ANALYSIS

THEMES #2 - AFFINITIZATION

THEMES #3 – SYNTHESISDESIGN SCENARIOS

IVETHNO

INSIGHTS



p. 27

THEMES

#1THEMES #1 – PRE- CONTENTANALYSIS

Our initial content analysis and coding

focused on the following themes, which

represented the basic research focus

question areas.

We refer to these initial themes as the“universe of the caregiver”; understanding

the permutations of the various relationships

the caregiver must negotiate helps us

understand the interconnectedness of

coping strategies and challenges as well as

the people and networks that impact and

are impacted by the caregiver.

Of particular note is C3_Coping, which

we originally identied as a relationship

between the caregiver and their own

needs. As revealed later in our servicedesign map, subsequent analysis showed

a dual relationship in coping strategies that

required an awareness of both caregiver

needs as well as care receiver needs, and

how, why and when one took priority over

the other.

C1_WHO. (Caregiver-Caregiver)- WHO

Caregivers

Primary caregiver

Shared caregiving

Resources

C2_WHAT. (Caregiver-Care receiver) -

WHAT & HOWWhat they do for care receiver

Nature/Status-- of caregiving

Role of caregiving

Caregiving tasks or concerns

Burden

C3_COPE. (Caregiver-Self) – COPING *

Coping

Recovery

Gaps

Obstacles

C4_CULTURE (Caregiver-Culture) - CULTURE

Culture

Perceptions

Denitions

C5_COMMUNICATION (Caregiver-External/

Communication) - COMMUNICATION

Communication

Sharing

Support

Family

Technology

C6_COMMUNITY (Caregiver-Community) -

COMMUNITY

Networks

Community

Peers

C7_QUALITY (Caregiver-Self) - QUALITY OF

LIFE

Identity of caregiver

Quality of Life

C8_ENVIRONMENT(Caregiver-Environment)

- ENVIRONMENT

Place, Space

C9_FUTURE (Caregiver-Future) FUTURE

Change (current or desired)

Expectations

IVETHNO

INSIGHTS



p. 28

THEMES

#2THEMES #2 - AFFINITIZATION

Further content analysis revealed 21 new thematic areas. What we see

developing is a stronger view of the multiple relationships within a particular

theme, including the importance of pre-existing relationships.

The layering of relationships hints at the reality that understanding coping

strategies also requires an understanding of how caregiving is not only

individually perceived and acted upon, but how it is socially and culturallyconstructed. This psycho-social context is important to design: a design solution

for a particular need may be adept at technically resolving it, but it isn’t

valuable and actionable if it falls outside the framework of what the caregiver

perceives as an available and appropriate option.

These 21 themes also begin to lead to both the caregiver continuum of

experience as well as the wider social system in which they operate. For

example, during our research we understood how culture can affect

caregiving and caregiving roles, but also began to note instances in which

culture was being (re)made either within individual caregiver families (for

example, in India where paid caregiving attendants were permitted to eat at

the same table as the family, even though it was socially uncomfortable for thecare receiver, because it ultimately promoted the care receiver’s health) or

by medical organizations which were able to break down cultural and gender

hierarchies in caregiving through the development of innovative community

care models.

We revisit these 21 themes, and develop them into design insights using

participant’s trigger stories, in our future section on opportunity mapping and

design applications.

In the following descriptions, we use “Type” to describe whether participants

across our eld sites generally perceived the category as a “barrier” (an

obstacle to caregiving) or a “bridge” (a resource).

Key: CG = Caregiver | CR = Care Receiver

01. NEW CG IDENTITY & AWARENESS

Type: Barrier

Relationships: CG - Self, CG-Society

Acknowledging caregiving identity

This thematic area eventually formed the rst phase on our service design map

and it applies to both the acknowledgement of the primary caregiver role,

as well as the realization of peripheral caregivers they are also in a caregiving

role. We understood from our participants it is difcult for caregivers to both

acknowledge and accept their caregiving role due to a variety of factors: We

heard “Care is invisible because it’s expected;” that although there are somelegal denitions of caregiving available, there is little consensus; that most

caregivers don’t realize they are a caregiver; and although many people know

someone who is in a caregiving situation, there are few known resources.

Acknowledgement and acceptance plays a crucial role in understanding the

research question, “Who cares for the carers” because, as one participant told

us, “there is no care [for caregivers] if caregiving is not acknowledged.”

IVETHNO

INSIGHTS



p. 29

02. PRE-EXISTING RELATIONSHIPS.

Type: Barrier/Bridge

Relationship: CG - Care Receiver (CR)

The effect of prior relationship dynamics

on CG

We heard form our participants caregiving

can transform, and sometimes reverse,previous relationship roles, which is difcult

to cope with whether it’s children caring

for parents or spouses caring for each

other within a changed marital context.

While many of our caregivers had different

responses and adaptation to their

eventual caregiving role, the condition

of the previous relationship between the

caregiver and care receiver (prior to the

onset of the caregiving situation) seemed

to play a role in adaptation and coping.

For example, a strong prior relationship

created opportunities to revisit positive

memories as “fuel” to for patience and

understanding to cope with the present.

Likewise, we found that a prior history

with other family members also affected

the caregiver identity and coping; in one

situation we observed, the caregiver’s

incentive to be an involved caregiver for

her mother was driven in part by a desire

to compensate for her father’s treatment

of her mother.

03. CARE AND CAREGIVING.


Relationship: CG - Care Receiver

The role of the CG

What the CG provides for the CR

This thematic area addresses how

caregivers perceive their role. Whilecaregivers may share many of the same

day-to-day routines, how they perceive

their role affects both the care offered as

well as the quality of the caregiver-care

receiver relationship. Most caregivers

perceived themselves as “guards” more

than “guardians” – in charge of mediating

the immediate environment to ensure

their care receiver’s safety and comfort.

One interviewee mentioned her role as

“balancing protection and exposure.”While few of our participants were

comfortable or open about voicing

negativity regarding their role, many

considered themselves interpreters of the

care receiver’s experience. They are often

constantly caring for and assessing the

care-receiver’s needs, and, in cases where

communication is compromised, gauging

the state of mind of the care receiver

without feedback.

In some unique cases, caregivers were

able to consider the care-receiver as

another partner in caring. For example,

although care receivers may face some

limitations due to their particular situation,

some caregivers sought to actively involve

their care receiver, and acknowledged

the impulse of the care-receiver to

maintain a sense of self-dignity, self-

esteem, and “the need to be needed.” In

one case, a husband caring for his ailing

wife said although she may have limits,

he wants to make her feel as if “she has

no limitations” and always made sure that

“she is always in a drawing room; not in

a corner.” In another scenario, the care

receiver was able to maintain their self-

dignity through their own bank account,

although their responsibility for taking care

of the account was limited. This ability to

create avenues for the care-receiver’s

continued involvement in their own care

created a motivating and rejuvenated

relationship between the carer and care-

receiver.

04. FELLOW CG.

Type: Bridge

Relationship: CG - Other CG

Who can share caregiving

In asking who are the caregivers, we

understood that even in cases where the

primary caregiver felt as if “there is no

one else,” caregiving rarely happened

in isolation. Secondary, tertiary and other

caregivers included other caregivers

(found in peer support groups), community

professionals (in one case a communitycaregiver was able to prevent the

double suicide of a spousal carer and her

husband in India), a trio of sons who took

care of their mother at her own residence

although they lived in different cities and

countries, grown nephews who helped a

mother care for her son (their cousin) when

the rst generation (her husband, her sister,

other others) did not assist in caring, even

a dog functioned as a fellow caregiver by

alerting one participant to emergencies.

In another case, a caregiver came from

a surprising case – a father became a

caregiver for his son’s girlfriend’s father,

learning a special form of Indian singing to

comfort the care receiver.

There is an exciting new space inconsidering who the “peers” on a

caregiver peer network could potentially

be. In many cases across both eld sites,

there were available extended family

members who could help in caring but

the primary caregiver considered them

“on hold caregivers” – to be called upon

in emergencies. In addition, support for

caregivers often came from long distance

guides – an aunt who could be called

to coax a care receiver into eating or a

sister who could provide guidance over

the telephone. Furthermore, the caregiver

identity is a robust one – in both Finland

and India, former caregivers continued to

play an active (if not more active) role in

the caregiving community even after the

end of their caregiving responsibilities.

One of the most interesting examples of

fellow caregivers for dementia patients

was observed in India. A synchronized

collection of staff and volunteers at a

community daycare center created a

“swimming pool of care” which

bathed patients in a constant

stream of attention, touch,

support, and conversation in a

way that overcame dementia patients’

aversion to unfamiliar situations and

people.



05. REALITY & ESCAPE: SUPPORT.

Type: Bridge

Relationship: CG - Other CG

How others provide support to CG

This area examined what type of support

caregivers seek from fellow carers when

they reach out. Interestingly, we found

there were many communication barriers

within a families that prevented carers

from sharing their experiences, let alone

asking for support with caregiving duties. In

more than one case, in both Finland and

India, sharing was limited to the immediate

family even though an extended family

may be abundant and close by. For

example, while a participant may not be

comfortable with sharing experiences with

brother or sisters-in-law or step children, a

close blood-relation (such as a sister) feltsafe enough to share.

In addition, we found that most of our

participants weren’t seeking complex

solutions: they wanted practical advice

(for example how to get better benets

to obtain better diapers or tips on how

to get their care receiver to eat) or just a

chance not to be a caregiver (a few of

our participants were involved in caregiver

support groups who talked about anything

but caregiving; another caregiver foundsupport in her 6-year-old daughter with

whom she could simply share a pizza and

go to the library).

An interesting question that arose from

one of our participants is the variable

of group size in efcacy of peer support

groups. A Finnish participant and program

manager mentioned how a peer support

group (in person) was not as successful

because of too few participants; is this

valid across all in person groups? How do

numbers chance the experience of online

support groups?

06. CG BURDENS - 24/7.

Type: Barrier

Relationship: CG - Self; CG - CR

What CG need to cope with; burden of

CG

This area encompasses what caregivers

perceive as burdens. Interestingly, during

our research, this was an area that was

difcult for caregivers to share. Eventually

we heard that participants need to cope

with questions of “why me?” (feelings

of unequal caregiver sharing within

families); physical exhaustion; job loss or

job transition due to caring; emotional

difculty in making decisions for kin (in

one instance, a participant needed to

damage his wife’s teeth in order to feed

her); emotional strain of role reversals

in parental caring; lack of the ability to

consider a future while a care receiver;

social isolation from previous family, friends

and neighbors; blurring of roles (oneparticipant shared that a 24 hour role as

caregiver, nurse, wife and housekeeper

can be confusing and draining).

We learned that most of our participants

experienced some feeling of loneliness

and despair; often were so committed to

the daily routine of caregiving they found

it hard to detach or distract themselves;

and found it difcult to ask for help for fear

of judgment they were not capable.

We understood that “grief” or “grieving”

was a continual and ongoing process not

only after caregiving, but also during it.

Caregivers needed to cope with losing

their former identity, jobs, friends, homes,

networks, dreams, relationships and more – Caregivers often shared a desire or hope

for a sense of stability, and often focused

creating stability simply within the day-to-

day demands of caregiving – and found it

hard to look further than the home.

07. CG SILENCE

Type: Barrier

Relationship: CG - Society; CG-Family; CG-

Culture

Barriers to communication and sharing by

CG

Silence as a theme was tied to other

themes: both the conditions which

surrounded caregiver acknowledgement

or acceptance, as well caregiver burdens.

Caregiver identities were often hidden or

blocked by cultural stigma and critique

(in Finland for accepting social benets;

in India out of cultural values of familial

responsibilities). We heard that “saints

don’t complain”, reecting a large

emphasis in India on the cultural duty of

caring and the cultural taboo of both

complaining or celebrating (praising)

yourself to acknowledge the work and

difculties in being a carer. Caregivers

felt there was little room to negotiate

with families or institutions; one caregiver

in Finland described applying for benets

as a “battle” and “humiliating”; several

caregivers in India said there was “no

negotiation” of their roles or duties. The

different experiences of caregiving/care

receiver inside the home versus outside the

home (for example, some care receivers

can maintain “natural” “social grace” in

public, which can obscure the interactions

that occur privately) often caused a

conict between the carer, care receiver

and the public.

Silence was tied closely to the ability to

ask for help – caregivers found it difcult to

express the need for help, of resentment,

or the effect of caregiving. Silence as a

positive tool is revisited later in the theme

of CG/CR New Perceptions.

08. CULTURAL HIERARCHY & VALUES

Type: Barrier

Relationship: CG - Society; CG-Family; CG-

Culture

The effect of dynamics of culture and

values to CG

Culture appeared to be an obstacleto caregiving and caregiving resources

in both eld sites and was particularly

apparent in the experiences of our Indian

participants. Divisions between gender

and family roles created a rupture in

asking for and giving help. For example,

despite an older sister close by, one

caregiver felt unable to ask for help,



p. 31

stating “ the young can’t complain.”

Other caregivers described the Indian

outlook on complaining or withholding

caregiving as a “sin”. Respect for the

elderly created difculties in negotiating

care for older care-receivers as parental

authority conicted with caregiver

authority. Moreover, as described in our

design case scenarios, gender played

a limiting role in caregiving – instead of

being able to enact direct caregiving,

women caring for men (especially older

relatives) needed to employ “begging”

their father to eat whereas a son would be

able to spoon the food directly. Likewise,

a granddaughter needed to team up with

her aunt in order to provide co-care in a

way that circumvented limiting gender

barriers.

09. ORGANIZATIONS & BUREAUCRACY.

Type: Barrier

Relationship: CG - Organizations, CG-

Policy, CG- State support

Hurdles and barriers to receive support

from organizations

While Finland has a socialized health care

system and has acknowledged/provided

support for caregivers for close to twentyyears, our participants shared the

existence of bureaucracy that hindered

caregiving support. For example, while

nancial and programmatic support is

offered to caregivers, there is a substantial

number that do not take advantage of

the available resources, either because

of the inappropriateness of the solution

(for example, while caregiver holidays

are offered; 2/3 of those eligible do not

use them) or social stigma that limits the

acceptability of such support.

Looking forward, some of our Finnish

participants expressed concern at the

privatization of health institutions, which

added additional stress. Our participants

shared that, due to privacy concerns,caregiving organizations often did not

coordinate with each other – which

provides an opportunity to help streamline

and connect communication across

support organizations. While there were

numerous support organizations in place

for carers, at the local, regional and

national level, Finnish carers still looked to

their peers for practical support on how to

navigate the Finnish system; for some of

the participants, there was a lack of trust in

the established system since they felt they

needed to “ght” to get support.

10. MEDICAL ROLE

Type: Barrier

Type: Relationship: CG - Medical

professionals

The role of medical professionals to

provide info and support to CG.

When our participants talked about the

medical profession, many spoke of the

lack of information they received from

doctors. In some cases, care givers shared

that doctors “assumed caregivers weren’t

knowledgeable”; in other cases the

doctors had incomplete information about

the caregiving experience within the

home and so therefore advice received

from medical professions who may

specialize in institutional caregiving could

not be applied within a homecare setting.

A positive situation involving medical

professionals occurred when a participant

interacted with doctor “residents” who

seemed more willing to share as they,

too, were in a learning mode; in addition,

a participant mentioned doctors were

more willing to interact with caregivers if

caregivers came “prepared for answers.”

11. MEDIA & PUBLICITY

Type: Barrier

Relationship: CG - Publicity, CG - media ,

CG - society

The dynamics between ‘role’ and ‘image’and it’s effect on the relationship with

media & publicity.

As there is a lack of awareness around

caregiving within India, there appears

to be low visibility for caregivers within

the media. One participant shared that

when she has been interviewed for the

media, in her opinion, the media tends

to sensationalize the story by looking for

the “sob story” – in addition, she felt themedia portrays caregivers as incapable of

resolving the situation individually without

the intervention of institutions. In contrast,

our Finnish participants shared a current

increase in public media coverage and

positive perception around caregiving.

However, this positive publicity comes at a

cost: for example, one of our participants

shared that the national caregiving

organization asked local chapters to avoid

complaining publicly; therefore, there is

some question as to ability for caregivers

to fully share the breadth and range of

their experience in public and the media

without compromising the current goodwill

toward caregivers.

12. VERBAL COMMUNICATION.

Type: Barrier

Relationship: CG - Care Receiver (CR),

CG- Society,

Communication changes during

caregiving and can often be both a

resource and a stressor. In many cases,

subtle shifts in language reected the

caregivers use of language to copethrough linguistic distance. For example, it

was observed that many caregivers, when

asked how they were doing, often replied

with how their care receiver was doing. As

one participant shared, the shift from “I to

We” often signaled oncoming burnout as

caregivers were dening their lives through

the care receiver, causing a difculty

in addressing the often different needs

between the two individuals. Likewise,

ex caregivers whose care receiver haspassed away, often refused to directly

refer to the death, rather stating

the change in caregiving duties

“My caring ended 1.5 years ago.”



13. NON VERBAL COMMUNICATION.

Type: Bridge

Relationship: CG - Care Receiver (CR),

CG- Society, CG - Other CG

‘Touch’ and gestures replace words;

sharing without words.

In many of the caregiving relationships weobserved, former verbal communication

relationships underwent a change, in

many cases due to the condition of

the care receiver. The dependence on

earlier communication habits in a limited

communication capacity can be stressful

for both parties; in many cases, especially

with dementia, the care receiver could

not offer the same level of verbal

connection and in fact, as one participant

told us, “words can get in the way.” We

learned that “silence can be an art”

which “takes practice” and can be a tool.

For example, non verbal communication

– from silence to touch – can provide

reassurance and connection when

words fail. This was especially poignant as

caregivers shared they longed to “pour

your heart out to someone” but were

unable to do so. It may be the non-verbal

mediums of communication may provide

a prompt for both care receivers and care

givers to connect.

14. CG AND SELF: WELLBEING.

Type: Bridge

Relationship: CG - CG, CG - Self

When asked about their hopes for the

future or how they care for their own

wellbeing, our participants found it hard

to comprehend how to answer. Self

care for caregivers was important to the

overall wellbeing of both caregiver and

care receiver, but not necessarily top of

mind until other immediate priorities were

addressed. When caregivers did share

their coping strategies for self care, we

learned it was diverse: writing, exercise,

acupuncture, pizza with a loved one,

lighting a sauna, a motorcycle ride,

learning to sing a Rabindra rainy season

song to their care receiver. Coping

strategies for self-care vary widely.

However, one thing that was common

across participants was that self-care and

personal hobbies often needed to be

let go in order to care. Time consuming

hobbies were especially not possible to

maintain. Diversion from caregiving was

often mentioned; often the all day and

all night concerns of caregiving was hard

to turn off mentally. One of the prime

catalysts for caregivers to think about their

own care or the future was a changein their own health, which would lead

more successfully to a revaluation of the

caregiving situation.

15. CG & CR: NEW PERCEPTIONS.

Type: Bridge

Relationship: CG - CR, CG-Family, Ch-

Society

How new perceptions are being created

between CG & CR.

We understood that the care receiver and caregiver relationship is constantly

changing over time. The most successful

adaptations involved a new way of

perceiving the care receiver. In some

cases, the caregiver was able to nurture

this new way of perceiving the caregiving

relationship on their own (in one case, an

elderly spousal caregiver shared how he

no longer had a loving wife but a wife that

had become his loving granddaughter

due to her mental deterioration) and

in other cases, the support of fellow

caregivers may provide the mental and

emotional distance to perceive new

possibilities within caregiving. In Finland,

we met a lively spousal caregiver in her 50s

who was also a newlywed. One and a half

years into her new marriage, her husband

suffered a stroke. This positive, energetic

woman was faced with the anger at

the couple losing their future and didn’t

know who to direct the anger toward as

it could neither go toward her husbandor herself. Eventually, she was determined

to “nd the silver lining” in caregiving. This

perception of the “silver lining” is at the

heart of the way in which a repreception

of the caregiving relationshio can

provide a renewed sense of purpose and

connection as it changed the magnitude

of expectations. In ARDSI Calcutta, a sign

on the door reads “dementia is a human

experience, not a disease.” The ability

to perceive the human experiential and

interactive quality of caregiving beyond a

rota of duty included caregivers’ learning

how to turn a blind eye in a positive way,

how to care for the care receiver from the

inside out by placing less emphasis on how

the care receiver may act externally, and

relishing the small moments of caregiving

instead of the milestones.

16. SOCIAL INCLUSION

Type: Bridge

Relationship: CG - Society/Community

How the role of peer support can provide

visibility

We found that due to their caregiving role

often leads to a withdrawal from social

networks on the part of the both the

care giver and care receiver, including

a change in involvement in work and

community. This may be due in part

due to external parties, such as former

colleagues or friends, who reduce their

association with the caregiver and also

a decision by the caregiver in order

to provide more care and stability for

the care receiver. However, the abilityto stay connected to the society is

crucial to build the care giver’s identity

beyond the caregiving role. In many

cases, caregivers found more time to

become involved within the caregiving

community after their caregiving role

ended. For others, the presence of a

caregiver support organization allowed



p. 33

a larger presence and visibility within

society. Support organizations served as

icebreakers for strangers to connect and

share their experiences; blogging offered

others a public role beyond caregiving

even though physical movement was

limited; and peer support groups not only

helped alleviate the feeling of isolation

for caregivers, but also provided a more

robust, collective presence and voice in

society.

17. (RE) MAKING CULTURE

Type: Bridge

Relationship: CG - Culture

Emerging cultural behaviors

We observed within India, there are

subtle but compelling shifts within cultural

structures. Although there are still strong

limitations to caregiving by gender,

bloodline, and social status, family

needs are changing. We heard from

our participants that although many

felt uncomfortable sharing caregiving

experiences beyond the immediate

nuclear family, much less strangers,

new community support organizations

are creating spaces for non-family

members to help share in the caregivingexperience. Likewise, within family care

environments that employ paid care

attendants, families are including paid

care attendants in daily activities – such

as eating together at the same table.

Although this may be disturbing for the

care receiver, especially if they are of an

older generation, some caregivers are

choosing to break through those cultural

boundaries in order to provide a better

care environment (for example, by seeing

the paid care attendant enjoying the

meal, the care receiver may learn to

enjoy the meal). In other situations, we

learned that not only families are breaking

up and migrating apart, but the shared

intergenerational home is changing both

because the children are moving away

and because the parents are learning to

appreciate their own home environment

– in more than one example, although

it would have been easier for the adult

children to care for their parent within

the same household, their parents would

actually choose to live apart and enjoy

the familiarity and independence of their

own home. Other female participants

acknowledged the limitations imposed

by gender, but creatively learned toprovide gendered co-caregiving (for

example between a young daughter

and her older aunt for her grandfather)

in order to combine their strengths (for

example, while the aunt had more

authority due to age, the granddaughter

could speak more freely). Likewise,

although the gender barrier in touch

may be signicant enough to prevent

a daughter from physically helping her

grandfather, some organizations, such as

staff and volunteers at ARDSI Calcutta

are liberally using consistent touch

(on the arm, leg, shoulder, back) to

reassure and guide care receivers, even

though this may traditionally be taboo.

Interestingly, the daycare observed at

ARDSI Calcutta still faces some gender

barriers in caregiving – all of their clients

are male. The staff shared that although

some caregivers enroll their female care

receivers into the daycare center, they

often drop out for a variety of reasons

due to the mixed-gender environment.

In some cases, the often older female

care receiver is unaccustomed to being

outside of the home in the company

of non-relative males; in others a male

spousal caregiver may not be used to the

idea of someone else caring for his wife

or being comfortable with his wife outside

the home.

18. ORGANIZATIONAL NEEDS

Type: Bridge

Relationship: CG - Organizations, CG-

Policy, CG- State support

The need from/for appropriateorganizations to support care-giving.

Organizational needs is the broad

category addressing how future

organizations will need to be structured in

order to address the needs of caregivers.

One consideration that needs to be taken

into account is that care institutions have

a negative connation in both Finland and

India – caregivers from both countries

shared how they did not want to placetheir care receiver into an institution. Within

India, there are 80 million elderly whose

needs are not homogenous. At the same

time, 2/3 of those needing help with caring

cannot afford to hire additional support,

which heightens a need for public or

community care options. Financial and

mobility constraints suggests that future

medical institutions will need to move

care support from clinics to the home –

novel community care solutions in Goa

helps address social isolation, caregiver

burden, and youth unemployment by

training and employing community carers

to work directly within communities and

caregiver homes to provide support and

objective assessment of caregiver needs.

Moreover, our participants echoed a need

for multidisciplinary teams that could help

them understand and navigate the many

complexities of caregiving, and a desire

for a mixed ofine/online approach (some

felt online resources were useful for initial

information gather, but in person support

allowed a deeper connection).

19. CONNECTION CATALYSTS.

Type: Bridge

Relationship: CG - Other CG, CG - Society

Situations, methods and behaviour

furthering CG connections.

Connection catalysts is a term used to

refer to how community organizations

can initially welcome caregivers and

help caregivers connect by breaking

the ice. Some organizations in Finland

create a space for caregiver wellbeingby providing a venue and opportunity for

caregivers to physically separate

themselves from the caregiving

environment. Other catalyzing

activities were simpler – poems and

rejuvenating images of nature triggered

conversation and reection, handicraft

activities such as making kettle holders



p. 34

from recycled coffee packets helped

caregivers keep busy and ease into new

friendsips. The presence of a sympathetic

“outside eye” provided an opening for

caregivers to open up in a way that may

not be possible individually. One of the

major impacts of support organizations

on caregivers is the providing a positive

perception of caregivers.

20. SPACE & OBJECTS

Type: Bridge

Relationship: CG - Environment; CG-CR;

CG - Self

Use of spaces and objects for coping and

comfort

We learned that caregivers and care

receivers depend on the ability to have a

stable, controlled environment. Not only

are caregivers familiar with the obstacles

or resources a familiar object can offer,

care receivers also become reliant

upon the familiarity of place, space and

things. For dementia patients, even the

introduction of a new towel or chair can

be disconcerting. One participant shared

how his father loved his wool cap so much

they were only able to sneak it away

to be washed when he was sleeping.Small changes in environment could spell

comfort (the presence of fresh owers in

water as a welcoming gesture; the use

of locks inside and outside to provide

peace of mind the care receiver could

not wander into trafc) or disturbance.

Familiarity of space was poignant

especially in dementia-care situations in

which sometimes both the caregiver and

care receiver may feel like strangers in

their own home. In one example, a care

receiver thought that her husband was

a stranger and tried to push him out of

the home. We heard more than once,

within these very dynamic situations,

familiarity counts. For dementia care,

where familiarity with the physical space

may be difcult due to change over time,

a chance to connect with old haunts

may be important both for emotional

wellbeing but also to help the caregiver

understand the old habits and needs the

care receiver may regress to. Play objects

may serve as a useful tool in helping both

care giver and care receiver connect and

communicate.

21. TOUCH & TECHNOLOGY


Relationship: CG - Other CG; CG-CR; CG-

Communication

CG and CR needs and preferences on

communication.

We found that technology was an

underutilized area for our participants. It

was rarely mentioned as resource. In a

few cases, in particular for our participantsinvolved in online community building, the

internet was seen as a resource – but only

as a starting point, and acknowledged

to be insufcient, both due to the lack

of culturally appropriate resources or

because of access. Some participants

acknowledged the potential of the

internet as a connection tool, but it was

rare. Other participants voiced concern

that there would be a “touch gap” in

online networks, or a negative effect from

the inability to be physically co-present.

There appears to be an opportunity

for technology to address some of the

situations addressed in the earlier theme

areas, although most participants did

not immediately consider technology as

an immediate solution. In the cases of

dementia caregiving, technology solutions

would need to account for the needs of

the care receiver for familiar (non-novel)

objects if planned to be used by the care

receiver. For example, although the ability

to turn on or off a TV, or read a clock, may

disappear for some care receivers, other

very simple actions (a light switch) may

remain over time.



p. 35

THEMES#3

THEMES #3 – SYNTHESIS - DESIGN SCENARIOS TO SERVICE MAP

Key: CG = Caregiver | CR = Care Receiver

There has been a signicant amount of great work done on studying the

vertical relationship between the caregiver and care receiver, or the caregiver

and the health system/medical professionals.

In our study, we were interested in beginning to think more horizontally across

caregivers and their peer networks, and how those forms of support and

information sharing may possibly lead to the design of the world’s rst social

tele-health system that is able to address the needs of families as populations

become more spread out.

One of our insights, aside from the dual nature of caregiving needs, was the

understanding the need to work alone, and at times to work together, and

why.

Many of our caregivers experienced some form of isolation; almost all

expressed some desire for more support or information in varied areas. Most

expressed the fact that when they began their caregiving experience, there

was little readily-available information to help them navigate their new role; for

many, it still is ad-hoc learning.

What’s interesting is the proposition that this process of individual learning and

coping is, in some ways, useful to the eventual growth of a caregiver and the

connection to the community… if adequately facilitated by the availability of

support resources when the caregiver is ready to ask for and accept help.

Our service design map identies needed design interventions at various stages

of the caregiver experience – some are individual and home-centred; others

facilitate organizational support; still other interventions are needed to deepen

caregiver connections outside the home.

Below is a rough sketch of the emergent phases of caregiver needs that arose

as we continued our synthesis of the data. We explore these rough ideas in

more rened detail in the subsequent Design Applications section.

01. ACKNOWLEDGEMENT (OF DISABILITY/ILLNESS/SITUATION; OF CAREGIVER)

How to understand the problem/situation?

How to address guilt, fear, helplessness, or hopelessness?

How to resolve conict between CG and CR?

How to address conicting cultural perceptions or stigma?

Examples from research:

• doors (Ovet) Merja

• lack of information (swapna, ravi)• Medical diagnosis

• Unavailability of any other option

IVETHNO

INSIGHTS



p. 36

02. ACCEPTANCE (OF IDENTITY)

How to nd the silver lining beyond

despair?

How to share the caregiving

condition externally, early and

positively?


• “Baby on Board” - Laura’s ability

to let people know about her

daughter

• Satu’s anger at losing her

dreams

• Accepting the responsibility

(e.g. India: of the oldest son/

respecting the orders of older

sibling (Dr. Dey/Janet). Finland:

marital responsibilities (Lake

Group, M2) )

• Accepting the changing status/role reversal (Ravi, Hema, Brig.)

• Accepting the new roles (e.g.

Satu: from newlywed to cleaner,

cook, nurse, lover, etc..., Brig.,

Ravi- from paid job being self-

employed consultant)

• The effect of pre-care

relationship (Dr. Dey, Devi with

her grandfather, Minna)

03. DAY TO DAY COPING (CARE RECEIVER

NEEDS)

How to create a safe environment...

on the go?

How to create a chain of support?


• Laura nding her baby daughter

crawling on a frozen lake during

a visit to family

• Devi’s bathroom crisis

• Teeth or food (Brig)

• Facing the music around the

clock (Brig)

• Dementia Dance ( ARDSI

observation)

04. CRISIS (TRIGGER POINT TO SEEKING

HELP)

How to not snap?

How to address a caregiver

snapping?

How to forecast a snap?

How to create stretchability and

resilience?


• Rubber band effect (Liisa)

• Blinders (Lake Group)

• Hoover vs birds (Lake Group,

Sirpa M.)

05. OUTREACH (TO FIND/ENGAGE WITH RE-

SOURCES)

How to nd resources?

How to communicate caregivers

need help?

How to provide help that will be

utilized by caregivers?


• Suicidal caregiver (Nilanjana)

• Support organisations allow

strangers to connect (CG

Leisure Group, Rehab camp;

Ilkka&Liisa, Holidays Sirpa O.,ARDSI Nibedita)

• Online information ( tech-savvy

in india, younger demographic

in Finland)

06. NEW RESOURCES/COMMUNITY

How to break the ice and connect?

How to understand effectiveness of

support?

How to enjoy the moment?

How to prioritize the small moments?

How to distract yourself?

How to get practice tips?

How to nd/create/engage new

caregivers?

How to feel you did the right thing?


• Laugh Indicator

• ARDSI

• CG Leisure group• Diaper talk, kettle holders, nice

shoes

• Community Care in GOA

• Music

07. REDEFINING RELATIONSHIPS (WITH THE

CARE RECEIVER/ SECONDARY CAREGIVER)

How to allow CR to live with dignity,

visibility?

How to create a new relationship

between CG and CR?

How to create a space for familiarity...

with places and experiences that no

longer exist?

How to introduce a sense of play

instead of duty?


• Devi and her grandad picking

her up from elementary school

and now college

• Memory journeys and water

buckets

• Stacking toys

• Singing Rabindra songs• Childhood memories

08. PERSONAL SPACE AND WELLBEING (OF

SELF CG)

How to create personal space?

How to encourage CG to take

action for own wellbeing?


• Stairs

• Sauna (Lake Group, Minna)

• Exercise buddy

• Distraction (German

soap operas, music

(Minna), books (Ravi))

• Blogging



“

...”

During a presentation o

our work at the London

Design Council just two

weeks aer the end o our

feldwork, we were ap-

proached by several key

people who asked us how

we were able to produce

such an advanced level o

work and analysis in such a

short period o time.

V. O P P O R T U N I T Y

MA P



p. 38

“THE DATA HAS TO FLOW

FOR THE DATA TO BE ACTED ON

IF THE DATA IS NOT ACTED ON, WE HAVE NO WORK

IS UTTERLY USELESS”

VOPPORTUNITY

MAP

GATHERING DATA IN AND OF ITSELF



p. 39

KNOWLEDGE

TRANSFER

DEVELOPING INSIGHTS AND TOOLS FOR KNOWLEDGE TRANSFER

It’s not enough to simply produce research. Design ethnographers (or design researchers) face an added requirement of work that is actionable.

Plowman, Prendergast & Roberts (2009) wrote compellingly on the heightened value (and requirement) of research within a commercial context: ethnographic liquidity.

“Within the context of industry, ethnographic research has different demands placed on it and different gauges are used to assess the relative success or failure

of an ethnographic project. A key demand placed on ethnographic research in this new context is that of immediate relevance. Equally, multiple stakeholders

expect the research to be actionable. The term actionable refers to the requirement that the research must be problem-directed and result in an analysis that

produces results that are easily consumed, understood, and acted upon by other stakeholders in an enterprise (for example, research that produces engineering

requirements leading to product specications).

[T]he impact of ethnographic research in the context of large organizations, and beyond, can often be impaired by issues of circulation. Creating outputs that

travel well is all important to developing what we call ethnographic liquidity, that is, the ability of research to be converted into something of value by its audi-

ences.

Therefore, another way of thinking about the actionability of ethnographic research is through the lens of liquidity. If research activity and its output is liquid, it is

readily exchangeable. The research creates debate, is able to inform existing activities, and creates the basis for new endeavors. Liquid research will perform

different functions for different members of an organization, because it is multivalent and contains different layers of utility. For example, engineers and designers

might focus more on design principles as a means of guiding their work. Marketing may take more note of needs and compelling ways of telling their business story.

In short, the best ethnographic research in an industrial context is research that has continued resonance and meaning. In essence, there are two competing de-mands placed on ethnographic liquidity. First, the research must be conceived and conducted to meet current organizational objectives. Second, the research

must have prolonged and ongoing relevance for the organization.” (p. 35-36)

This section introduces the opportunity mapping tools that our research team developed for ethnographic liquidity, in order to contextualize the research beyond an anthro-

pological audience and to make it more accessible and clear to other audiences within the company, whether design or marketing.

The subsequent section, “Design Applications,” will explore in-depth the individual stories introduced in this overview.

VOPPORTUNITY

MAPPING



p. 40

ETHNOSPEAK GLOSSARY

VOPPORTUNITY

MAPPING

(informal/family) Caregiver (CG): Refers to non-professional individuals who provides care for afamily member or other close person who cannotcope on their own due to illness, disability or other special need for care

Care receiver (CR): Refers to the individualreceiving care from the caregiver

content analysis: The review of data to identifythemes, insights or trends. A content analysismethod may also include coding, which isidentifying and organizing data into speciccategories

harvest session (group based analytic workingsession): Content analysis performed within a

group setting to deepen understanding across theresearch team

themes: refers to the basic categories developedeither pre-coding or in the initial phases of contentanalysis (note: this differs from what Intel generallyrefers to as themes, which we call insights – seebelow).

Insights: specic key ideas within thematiccategories

Trends: Patterns of knowledge, behavior, or ideaswithin or across insights

Bridges: A term used during system mappingwhich refers to categories that are understoodor perceived as bridges, or coping resources, by

participants across the research poolBarriers: A term used during system mappingwhich refers to categories that are understood or perceived as barriers to coping or caregiving, byparticipants across the research pool

improvisation to innovation: A term used toconnote the opportunity of individual strategies for coping which can lead to innovation, if scalable

ethnographic liquidity: The ability of researchto be converted into something of value by itsaudiences

opportunity map: A tool used to frame research for design relevance

service design map: A type of opportunity mapthat identies a user journey across time space; inour work, used to convey experiences relevant todesigning for present needs

system design closeup: A detail visualization of a

key story on the service design map that providesmore context on the needed design scenario

system map: A type of opportunity map thatrevisits the user journey by mapping actions,behaviors, barriers and perceptions acrosssystemic categories

design principle: A guiding characteristic ofrecommended design qualities or objectives

design concepts: Proposed design solutions to a

given scenario



p. 41

VOPPORTUNITY

MAPPING



p. 42

TIPS AND TRICKS

During a presentation of our work at the London Design Council just two weeks after the end of our eldwork, we were approached by several key people

who asked us how we were able to produce such an advanced level of work and analysis in such a short period of time.

In reection, here are some of the considerations that allowed us to do so:

• ETHNOGRAPHIC LIQUIDITY: From day one, we were aware of the needs of our multiple stakeholders (the client, our university, the wider Hothouse co-

hort, our participants) and consistently spent time identifying the core purpose and audience for each stage or work or piece of output. Imagining

who would be interested in a particular piece of work – and how to better engage someone into being interested – kept us on our toes to be concrete

and specic.

• COMPARTMENTALIZATION: Research is often many sprints within a marathon of work. To maintain momentum and stamina, the team needed to learn

to compartmentalize not only our work but also our thinking. Like any process – it’s important to understand what type of mental perspective is needed.

While we may have individual inclinations, we learned to keep pace together – when we were coding, we focused on being objective, specic, and

accurate in order to overcome the natural complexities of data across cultures and languages. When we were in the middle of synthesis, we learned

to champion storytelling rather than stories – we couldn’t fall in love with any particular narrative, but rather learned to see how individual narratives

were stronger in relationship (whether complementary or in contrast).

• DYNAMICS: We identied natural leads and found ways to augment their strengths – while we had eld leads who were the native researchers within acountry, it was also important to have an objective project lead that travelled and managed across sites. This signicantly helped with compartmen -

talization and efciency – in order for the team to focus on one step at a time, it was necessary to have one team member looking ahead strategically

to understand how to lay the groundwork for success at the next stage. Native and non-native researchers worked together to ensure that we weren’t

cultural tourists, but to also make room for the valuable insights of “cultural strangers”.

• FLEXIBILITY: We plan, and plan room to allow for natural disasters, participants changing, and new opportunities in the eld. Even for client calls and re-

search designs, we planned and practiced for ideal scenarios as well as had backups scenarios ready. Often, eldwork made us resort to solutions be-

yond our range of plans, but the process of anticipating change made us more resilient. Most importantly, during analysis, the ability to embrace both

digital and analog methods of content analysis led to the development of our opportunity mapping tools which helped us place massive amounts of

data within an accessible and clear information design strategy.

• ENERGY AND LABOR: We didn’t believe in unnecessary paperwork. We had a saying that something should not only have enough validity to stand on

its own feet, but also be able to move far enough to start a conversation across the room. In this way, we developed not only a timeline tool to help

understand day-to-day research activities and objectives across Finland and India for our internal team, but also created successful communication

tools that sparked the imagination and objectives of our client.

• FUN: We embraced the fact that we were a former journalist, a fashion design professor and a serial entrepreneur. This often meant very diverse, and

sometimes challenging, perspectives, but also created a constant sense of fun and surprise about what we each would bring to the table (or what

our research would bring to us).

VOPPORTUNITY

MAPPING



p. 43

4 STEPSDESIGN

RESEARCH4 STEPS TO ACTIONABLE DESIGN RESEARCH

1. Relevant > What is relevant to the audience you are designing for?

2. Salient > What/who is on their mind? When is it on their mind?

3. Appropriate > What solution (individually, culturally or otherwise) ts and why? What doesn’t t?

4. Actionable > What is the trigger point to engage someone from understanding the possibility of an appro-

priate solution… and adopting it?

VOPPORTUNITY

MAPPING



p. 44

graphic TITLE

p. 44

CARER SERVICE MAP



p. 45

SERVICE

MAPBENEFITS

SERVICE DESIGN MAPPING

USER JOURNEY. Identify relationships of experiences across time-space for business exploration

PLOT KEY DATA POINTS:

• Key phases

• Individual stories/needs

• Prominent business opportunities

SERVICE DESIGN MAP – DESIGNING FOR THE PRESENT:

Benets:

• Connects relationships across time-space (“marathon”)

• Identify triggers for action

• Maintains the Integrity of individual needs/voice

• Provides a clear emphasis on design needs

VOPPORTUNITY

MAPPING

INSIGHT:“In care-

giving,design isa package

deal”



p. 46

FRAMEWORK AND RATIONALE: DISCUSSION

Our team was tasked to understand three things during our

study:

• WHO are the carers?

• HOW do they cope?

• WHAT is culturally appropriate?

In particular, the question of how do caregivers cope was

signicant in our desired outcome – to understand the role

of technology in strengthening, augmenting or innovating

these coping and support strategies.

Interestingly, an initial aim of our research was to identify

and understand how to improve caregivers’ own

wellbeing, health and quality of life. However, when we

directly questioned caregivers, whether in Finland or India,

with questions relating to their well being, their own plans

or hopes for themselves and their futures, we were often

met with confusion… or a blank stare. As one participant,a professional trainer offering rehabilitative courses for

caregivers, noted: when you ask a caregiver how they are

doing, they will often reply with how the care receiver is

doing.

If you look at our service map, we had hoped to identify

strategies for self care of the caregiver. However, although

this may be relevant for the caregiver, it isn’t immediately

relevant. In fact, it’s often the last thing on their minds.

In order to design appropriately and well for caregiver

needs, designers need to understand it’s a “package

deal”. Just as caregiving is often rarely done in complete

isolation, it’s also difcult to separate the needs of the

caregiver from the needs of the care receiver – it’s an

important nuance to eventually be able to do so, but the

two needs are often entangled and competing.

“It went on like that, but what I want to say is this,

every doctor in a village or whatever it is, he has

done an MBBS (Bachelors of Medicine and Surgery)

course. If this little thing is there that he understands

this much that the caregiver and the Alzheimer’s

patient is a package. Both are interacting during

the 24 hours and all that. So the mental health of

the caregiver is as important as the condition of the

patient whichis what you are treating.”

– Brigadier Bhattacharya, a spousal caregiver in

Kolkata, India

Our analysis, as represented in the service design map,

show two continuums of need: caregiver (CG) needs and

care receiver (CR) needs. Often, one is more salient than

the other, even if both are present. There are times when

the needs are mutually shared and benecial (the center

line).

The service design map not only identies what is relevant

(in fact, every point on the map is relevant), but more

importantly, when they are salient. This service design map

shows the phases (we’ve identied acknowledgementand acceptance, coping, crisis, community, and self

care) in which particular needs are top-of-mind for the

caregiver. The subsequent opportunity mapping tool, the

service design close up, identies the context of these

trigger needs, which leads to an understanding of what

solution may be appropriate and actionable.

It’s useful to note that developments in later phases, such as

the peer support and information sharing in the community

category, may substantially impact the caregiver-care

receiver (CG-CR) relationship in the coping phase to allow

for new coping strategies, which, if successful, additionally

impact the ability and opportunity of the caregiver to

consider self-care strategies.

An important insight from our research was that although

caregiver self-care was a prioritized original research focus,

the opportunity, appropriateness, and actionability of self-

care strategies isn’t generally salient until after the prior

needs in the service map have been met or resolved.



p.47

SERVICE MAP CLOSE UP.

BENEFITS

SERVICE DESIGN MAPPING - CLOSEUP

USER JOURNEY. – IDENTIFY DESIGN NEED THROUGH KEY STORY

CONTECT INSIGHT IN BRIEF: Clarify participant context and design

scenario for each trigger area; suggest intervention

Provides:

• Design Scenario

• Current Context

• Major resources (bridges) & barriers

• Needs

• Associated research insights from afnitizations



p. 48

SYSTEM MAPDESIGN FOR THE FUTURE

The questions are changing:

• Who will be the carers?• How will they cope?

• How is culture changing?

SYSTEM MAPPING – DESIGNING FOR THE FUTURE

USER JOURNEY WITHIN SYSTEM CONTEXT – PRESENT OPPORTUNITIES

TO FUTURE TRENDS

CONTEXTUALIZE participant experience within wider social system toidentify opportunities to augment, strengthen or design for future in-novation

Provides a view of improvisation vs innovation (what is scalable):Design at the…

1. Individual

2. Community

3. Future

SYSTEM DESIGN MAP>>

Revisit individual narratives, in context, by plotting detailed, indi-vidual participant design scenario, resources and actions within thelarger system:

• Major forces/concerns based on content analysis

• Inter-relationships within the system

• Patterns of perception: Barriers vs Bridges

• Potential for innovation: Where former barriers are being

bridged – what could be, if scalable.

DESIGN FOR THE FUTURE| SYSTEM DESIGN MAP| “Bath”

“BATH”

(HP08)

DEVI, 20GRANDFATHER, 84

CG

IDENTITY

MEDIA

PUBLICITY

CG

SILENCE

PRE-EXIST

RELATIONS

CGIVING

DEFINITION BURDENS

FELLOW

CG

CG-CR

PERCEPTN

PEER

SUPPORT

VISIBILITY,

INCLUSION

ORG &

BURCRCY

MEDICAL

ROLE

NEW ORG

NEEDSCONNCTNCATALYST

CULTURAL

HIERARCHYREMAKING

CULTURE

CG WELL-BEING

NONVRBL

COMMVERBAL

COMMSPACE &OBJECTS

TOUCH &

TECH

CGIDENTITY

MEDIA

PUBLICITY

CG

SILENCEPRE-EXIST

RELATIONSCGIVING

DEFINITIONBURDENS

FELLOW

CG

CG-CR

PERCEPTN

PEER

SUPPORT

VISIBILITY,INCLUSION

ORG &

BURCRCY

MEDICAL

ROLE

NEW ORGNEED

CONNCTN

CATALYST

CULTURAL

HIERARCHYREMAKINGCULTURE

CG WELL-

BEING

NONVRBLCOMM

VERBALCOMM

SPACE &

OBJECTSTOUCH &

TECH

P A R T I C I P A N T P O O L

P E R C E P T I O N

S

B R I D

G E S

( C U R R E N T

+ F U T U R E )

Broken chainof support.

(IN) Cultural gender barrierspreventing caregiving.

(C , F) Spaces and itemsfor safety and dignity at

home and on the move.

(F) Cultural hierarchies changing:

guestioning authority, adapting

Western norms.

B A R R I E R S

( C U R R E N T )

X

Uparticipant pool perceives

theme as a bridge

participant pool perceives

theme as a barrier

U U

U U U

U

U

X X X

XX

X

X

X X

Poor safety design of doors.

(C, F) Establishing constant chain of

support and safety (from domestic

help to neighbourhood aunts).



p. 49

FRAMEWORK AND RATIONALE: DISCUSSION

Designers and business needs to respond dynamically to

changes that are occurring at a rapid pace as well as to

large-scale changes that may be moving incrementally

but meaningfully toward a massive potential shift in user

context.

DATA IS NOT KNOWLEDGE – both the service design map

and the system map facilitates the ability to recontextualize

existing data into multiple scenarios – design for the present

and design for the future.

In the system map, we revisit the individual user journey

around a particular need in detail, mapping the participant

actions, behaviors, and perceptions against a larger social

system (the 21 themes we identied during our afnitization

that seemed to be generally present for caregivers across

our research).

Within the system map, we present four additional levels of

information:

• The rst level is the general perceptions of theparticipant pool: Did the participant pool generally

perceive a thematic category as a barrier (a

challenge or obstacle to coping) or as a bridge (a

resource enabling coping)?

• The center area focuses on the participants whose

experiences directly intersected with the identied

need/trigger (such as safety).

• Within this central area is the next level of information,

which is what the individual participant(s) perceived

as a current barrier while trying to address this

specic need/trigger; the accompanying text

specically describes these barriers.

• Following this is the third and fourth layers of

information, which identies and describes

present and future bridges enabling coping by

either circumventing, mitigating or addressing the

previously identied barriers.

As more needs and courses of action are mapped over and

against each other, it becomes more apparent not only

high-trafc thematic categories that require intervention,

but also helps relate courses of action, networks, obstacles

and resources.

By paying attention to where an individual improvised

solution is able to turn a generally perceived “barrier” (1st

level of information) into a bridge, we begin to notice

opportunities for future innovation, if the individual solution

is scalable.

PERCEPTION IS EVERYTHING

Discussion

In Finland, we learned that 2/3 of the caregivers who were

eligible for state0funded caregiver holidays never used

them. As one of our team members astutely noted, it’s

not enough to simply provide a solution – it’s important to

provide a solution that will be used.

In the following section, we carefully detail some key

experiences of caregivers, how they were able to address

them, and how they weren’t – hopefully providing a view

on present and future opportunities to design relevant,

salient, appropriate and actionable solutions.



“

...”

She was the only woman in

a room ull o white hair o

spousal carers, who did nothave white hair…… she had

long, long brown hair. She

just seemed very comort-

able to be in her own skin.We came to know much

later that like the rest o the

participants she was also

a spousal carer but unlike

them she was a newly-wed.”

V I. D E S I G N A P P L I C

A T I O N S



p. 51

DATA is

not

knowledge

VIDESIGN

APPLICATIONS



p. 52

graphic TITLE

p. 52

CARER SERVICE MAP



p. 53

PHASE 1

ACCEPT

WHO IS THE CAREGIVER

Satu was a participant at ‘Lake Group’, a remedial course for family caregivers ; “she was

the youngest woman in that room, the only woman in a room full of white hair of spousal

carers, who did not have white hair…… she had long, long brown hair. She just seemed

very comfortable to be in her own skin. We came to know much later that like the rest of

the participants she was also a spousal carer but unlike them she was a newly-wed.”

When our researchers asked the participants, if any one wanted to volunteer for a follow-

up interview, Satu immediately raised her hand and exclaimed that “I am going to beselsh and say that I’d be happy to this interview.”

Satu is a 56 years old Finnish woman who had to become a spousal carer within a year of

her marriage. Her husband has four grown up daughters from the previous marriage – the

youngest is about 36 years. Satu has a grown up daughter as well. All the daughters live

relatively far, so she is the primary caregiver of her husband from October 2010 onwards.

She was very very angry in the beginning as she realized that all her cherished dreams

were about to fall apart.

“At the very beginning I noticed, that I was really angry and I started wondering

who am I angry to. Like of course I wasn’t angry to (my husband), he cant help it.

I can’t be angry to myself, since I can’t help it either. Then I realised that I was an-

gry, when I had… Or WE had… Somehow built that life in a way like, “okay, thenwe’ll get married, then we go to that and that trip, then we do this and that, then

we watch this and that”. So we got loads and loads of plans and all those plans

we’re made assuming we’d both stay healthy and in the same condition… And

then when (my husband) suddenly got sick and we had to re-think everything…

And before I adjusted to that, like “alright, this is how it is, we didn’t go there, we

didn’t go there or there. Probably can’t go there either, but maybe we could go

to a summer cottage once (my husband) learns to walk again. There we can go”.

It took her some time and re-thinking to see the silver lining in the new situation , accept

the new role positively and dream new dreams for herself and the her husband.

“And I thought about that, took a pen and paper in front of me and started

thinking, “there’s no damn way there’s just negative sides in this, there has to be

something good into this as well.” Like think! And then I realised, somehow I just

realised that (klicks her ngers): “Yay! This is the rst time in our lives we have time

for each others 24 hours a day. I don’t have to go to my shift work; (my husband)

isn’t doing his things……., So now we have lot of time together and we can do

things we both like! (…) So even if it seemed like there was a lot of negative things

there at the beginning, now it seems there’s something positive about this as well.

Maybe the scale might even be in balance...”

Brigadier Bhattacharya is an Eighty-six years old spousal care-giver from Kolkata, India; his

wife was affected by Alzheimers in 1994 although it was formally diagnosed in 1996. He

still regrets and blames himself for his ”lapse” in observing and acknowledging the signs of

the disease.

“In hindsight, I realized that it was just that in my subconscious mind, I was totally

unable to accept that Sukla could ever have any mental impairment. Not a per-

son like her!”.

Today he accepts care-giving as the ‘mission” of his life and writes in the preface of his

book that “… care giving of Alzheimers patients need not be ‘struggling through

the storm only’, but, it is possible to enjoy a bit of ’dancing through the rain’ as

well.”

VIDESIGN

APPLICATION

DESCRIPTION OF PHASE acknowledging new responsibility able to maintain



DESCRIPTION OF PHASE

ACKNOWLEDGEMENT & ACCEPTANCE

Our eld research shows that caregivers take time to

acknowledge and accept their loved ones are affected

with degenerative illness and need full-time care. They

also take time to accept their care-giver status.

During our research, we found out that in Finland, the

nature & status of care-giving is too broad to dene, - “…..

it doesn’t have to be a relative... Either in their own home

or then at the home of the one they’re taking care of...

Someone who has the overall responsibility of the caring.

It’s a really broad term. Caregiver can be the one who

visits daily to take care of some errands, so that the client

copes in their home, but they can also be the kind of 24/7

clients who need treatment all the time, so it’s really broad.

I see it as a really broad term.” In Finland a lot of informal

caregivers choose not to have a formal agreement with

their municipalities, although they are entitled to a lot of

support and benet from their respective municipalities.

They nd it very difcult and sometimes “disgusting andhumiliating” to navigate the bureaucracy and seek help

from authorities.

In India, traditionally family members step in to offer

care-giving and ‘senility’ is accepted as part of normal

aging process. So the nature of care-giving is often not

acknowledged even by the extended family. Caregivers

often nd it difcult to share either the condition of the

care-receiver or their own situations with the extended

family and friends due to lack of awareness and perceived

stigma attached with dementia . Our research highlights

that in India even medical professionals tend to not givemuch importance to the care-givers’ needs.

New caregiver status often leads to accepting and

acknowledging of new identity within family, work-

environment and community; thus this phase can have

a number of possible design intervention moments.

Some of the main caregiver needs in this phase include:

acknowledging new responsibility, able to maintain

positive outlook, connect with the new reality and nding

acceptance internally and externally.

WHY THE ORANGE CIRCLE IS RELEVANT?

As mentioned earlier, this phase offers a lot of opportunity

for design intervention. Malla Heino introduced our

researchers to a new program developed by the

organization Omaishoitajat ja Läheiset –Liitto (“Caregivers

and Close Ones – Association, Helsinki, Finland), which is

a coaching program named ‘Ovets’ or ‘Doors’ to help

those new to care-giving.

“….. this project is designed to coach ….. those

carers who have just become aware that they

are in a caregiving situation. And this tries to

empower them and give them some basic

information about caring, about services, but also

about how to care about themselves. …. this is

one way of empowering them to give them hope

for the future.”

The design opportunities emerge both in recognizing and

preventing the barriers to hinder the acknowledgement

and acceptance of the role positively and facilitating the

process. Early and effective interventions could lead to

effective management of the care-giving situation and

signicant wellbeing of the care-giver. The main question

The Baby on Board story evokes is: “How to design convey

the condition/status of the care-receiver to the outside

world positively and with dignity?”



p. 55

PHASE 1 ACCEPTING

ZOOM IN ON ‘BABY ON BOARD’ “ Immediately on diagnosis of BARRIERS and the care receiver in the main stream



p. 56

ZOOM IN ON BABY ON BOARD

Next we are going to zoom into one de -sign-intervention moment in this phase“Baby on board”.

“Baby on board”- HOW to make caregiv-ing public+positive EARLY?

Laura is a Finnish mother and the infor-mal caregiver of her 7-year-old disableddaughter along with her husband. Her family includes another daughter aged 6.

Laura’s and her husband chose a homein a suburban neighbourhood shared byother families with small children;

“As I start walking towards the inter-

viewee’s home, I walk across the

play ground. There are swings, a

slide and a sandpit there. Few toys

are lying around as well, though

there are no children playing out-

side: a plastic bucket and a truck.The area appears to be preferred by fami-lies with small children. There are strollers

and small bicycles almost on every yard Ipass.”

The ease of a child playing outside is notso simple for Laura’s daughter as she hasa tendency to run away. Laura has beenable to create an informal chain of sup-port around her by sharing informationabout her daughter’s condition with her friends; her openness and sharing with oth-ers early prevents misunderstanding:

“Another people in Laura’s support net-work are her friends and the doctors. Lauraalso says that she tells about her daugh-ters condition to new people in really early

stage, so that they don’t have to wonder why her daughter is a bit different.”

Brig Bhattacharya from Kolkata, India

tried to create a similar invisible support

network around her ailing wife, from the

moment she was diagnosed with demen-

tia. He writes in his book that:

…. Immediately on diagnosis of

Dementia of the Alzheimer’s type

in Sukla’s case, I informed all rela-

tives and friends and colleagues

…….Over a period of time, I real-

ized that we should throw an invis-

ible protective cordon around her,

without her knowledge, so that she

did not suffer from rejection and

humiliation at any time. This did notmean isolation but full exposure to

her existing world, without having

to suffer from any misunderstand-

ing. She should feel that she be-

longs to the mainstream, is wanted

by all around her and should have

as much say as before, regard-

ing things happening around her.

A difcult process, but it must be

strived for.”

NHS in UK provides the expectant moth-ers with a badge saying “Baby on Board”,which helps the pregnant woman, con-vey her medical condition non-verballyto strangers and society at large withoutfeeling awkward and embarrassed. Alsoit allows strangers to offer her assistancelike seats in a crowded bus or tube withoutbeing too personal. It is wonderful way toshare a ‘delicate and vulnerable’ physicalcondition positively though an appropri-ately designed object.

How can we design something similar toconvey care-receiving/care-giving status

non-verbally to others?

ASSOCIATIONS

The design opportunities of for this situationemerge both in recognizing and prevent-ing the barriers and strengthening and fa-cilitating the bridges

BARRIERS

The barriers creating obstacles for ‘Thebaby on Board’ scenario are related to:

• New caregiver identity: Caregiv-ers encounter problems in recognizing andaccepting their new role, re-dening their care-giving identity and conveying thesame appropriately to the larger society.

• Caregiver silence: Caregivershave difculties in recognizing and admit-

ting their new care-giving responsibility un-til much later.

• Media: Media can create a dis-torted picture of care-giving and society’sexpectations. For example, Swapna men-tions that in India newspapers prefer topublish the problems faced by the care-givers, instead of how they cope and sur-vive.

• Cultural Hierarchy & Values: In In-dia, an offspring is expected to take careof the parents and often a family member is actively or passively chosen to take theresponsibility of care-giving. In a lot of cas-

es, care-giving becomes a shocking anddifcult reality for the primary caregivers,especially for male spousal caregivers.

• Caregiver + care-receiver newperceptions: Caregivers nd it difcult toidentify the new role of care-giving andoften they need to cope with non-accep-tance and mis-behaviour of the care-re-ceiver.

BRIDGES

Bridges creating the opportunity spaces in

‘The baby on Board’ scenario are:• Caring + caregiver: This allows anopportunity space is to help caregiversevaluate and decide what is important inthe relationship with the care-receiver andre-congure the relationship.

• Visibility & Inclusion: It will help toshare the condition/situation to larger soci-ety and integration of both the care-giver

and the care-receiver in the main-stream.

• Caregivers’ Wellbeing: It will rein-force the support system to provide overallwell-being to the caregiver.

• Fellow care-givers: Caregiversneed to identify fellow caregivers andseek support from them

• Medical role: To dene what is es-sential support both the patient and thecaregiver and provide assistance and sup-

port• Touch & Technology: It presentsa lot of business opportunities to createdevices and systems of support to createan ‘invisible cordon’ of safety and conveycare-giving/care-receiving status.

HOW TO MAKE CAREGIVING

PUBLIC+POSITIVE EARLY?

COMMUNICATION SCENARIOS:

>> TO SELF

>> TO CARE-RECEIVER>> TO SOCIETY

CONNECTED ASSOCIATIONS

>> Self awareness and acceptanceof identity

>>care-receiver as a fellow ‘care-giver’

>> Invisible safety through technol-ogy

>> From ‘stigma’ to positive sharing

>>Sharing care-giving with ‘periph-eral ties’



p. 57

PHASE 1 ACCEPTING



p. 58

PHASE 2

COPE

BRIEF SYNOPSIS OF STORIES

In this phase we have four stories.

“Bath” explores an experience in India, in which 20-year-old Devi (HP08) was a caregiver

for her grandfather. In this story, the grandfather falls while in the bathroom, and because

of cultural and gender issues, Devi is unable to help him.

“Frozen Lake” is the story of Laura (AK10), who lost –and then found – her 7-year-old dis-

abled daughter crawling on a semi-frozen lake in Finland.

“Teeth” is the story of Brigadier Bhattacharya (AD03) who is the caregiver to his wife, who

has dementia. He describes his pain at ruining “her beautiful smile” when he and his paid

care attendants unwillingly needed to shove a spoon in her mouth in order to feed her

during a prolonged case of lockjaw.

“A ride of granddad” revisits Devi and her grandfather, and represents another type of

coping – how caregivers attempt to help the care receiver maintain a sense of identity,

normality and possibility. In this story, Devi shares how her grandfather, a successful busi-

nessman, used to rearrange his schedule to be available to pick her and her brother up

from school everyday when they were young. Devi’s grandfather has dementia today,

and, although he does not remember his daughter’s relationship to him, he still continues

to ask his driver to pick his granddaughter up from school – even though she is now in

college. They share a relationship, and a need to be needed, that remains robust even

through the onset of dementia.

RATIONALE OF WHY ORANGE CIRCLE IS RELEVANT

We chose to zoom into the interrelated stories of “Bath” and “Frozen Lake” because they

show two different, but common, scenarios caregivers face: the need to provide safety

for their care receiver both within the home environment and away from it.

In Bath, Devi’s family lives in Bengaluru, a major city, but on the outskirts near a small vil-

lage. Their home is an apartment complex with little personal interaction with other care-givers. This is a shared caregiving situation, with Devi’s parents as the primary caregivers,

Devi and her eighth-grade brother as secondary caregivers, and Devi’s aunt (who lives

separately) as a tertiary caregiver.

This situation occured in their home apartment. Safety is often a concern and the fam-

ily often worries about the grandfather running out. They have locks inside &outside the

home. They also tell of another incident where the grandfather locked them out and they

were able to get access using a ladder.

”He slipped in the bathroom the other day and the only person that was home

was me. So how am I to – there was just no way of me to help him out in such a

situation... So I have to, we have a driver. We have a trusted driver actually. My

dad was out at that time, I was able to nd the driver and get him in, but

other than that I would be helpless. He would just be stuck inside. And it

would have been a very dangerous situation.”

VIDESIGN

APPLICATION



p. 59

PHASE 2

COPE


During our eldwork, we often found our interviewees were most comfortable beginning

any discussion of caregiving with a detailed description of the care receiver’s daily rou-

tines. Whether for spousal caregivers caring for care receivers who had experienced a

stroke or parental caregivers for those with dementia, the consistency and familiarity of a

routine was essential. We learned coping either could entail the difculties of the constant

attention required in maintaining the daily routine, or to handle exceptions that deviated

from them. Often, primary concerns revolved around two key areas: eating and safety.

In our time with our participants, we learned that most caregivers could recite the types

and amounts of food their care receiver was able to eat, including the time – to the

minute – that would be required to feed the care receiver. We learned about the scares

associated with a care receiver declining food because of preference or illness, and the

triumphs associated with being able to creatively come up with a nutritional substitute

that could keep the care receiver alive. We learned about one care receiver’s propensity

for salted Lay’s and two bananas at lunch, as well as the fact it took one and half years of

experimentation to get him to resume eating bread.

Likewise, many of our caregivers cited care receiver safety as a primary concern – both

Laura, a caregiver for a young disabled daughter, and Devi, a twenty-year old secondary

caregiver for her beloved 84 year old grandfather, spoke less about being guardians than

“guards”.

Originally, we had wanted to explore coping strategies related to the quality of life for the

caregiver; instead we found that these immediate basic requirements of coping with the

care receiver needs were the most salient for daily coping.

VIDESIGN

APPLICATION



p. 60

PHASE 2 COPING

In Frozen Lake, Laura’s family lives in a the shores had already melted but The ability to address these safety CULTURAL IMPLICATIONS



p. 61

y

suburb of Tampere, a major city, in a single

family home in a community shared by

other families with small children. Laura

shares caregiving with her husband as

she has a disability; the couple also have

another daughter, aged 6 who helps

watch her sister. Laura’s mother sometimes

babysits.

There are strollers and small bicycles almost

on every yard our researcher passes.

There’s a busy main road nearby, but the

row houses are positioned in a way that

creates a sheltered yard between the

houses. There’s a children’s playground in

the yard, where there are swings, a slide

and a sandpit there.

The ease of a child playing outside is not so

simple for Laura’s daughter.

“So we have to keep an eye on

her constantly, since she’s running

away from the door and the gate

and where ever she can… So it’s

pretty constant… Guarding her.”

Although their home has many locks

and gates inside and outside the home

for safety, this situation occurred outside

when they were visiting Laura’s in-laws,

who live on a farm near a lake.

“So for 5 minutes Laura thought

that her oldest daughter was with

her husband and her husband

thought she was with Laura. And

they found her crawiling on the icy

lake… It was April or something, so

y

there was still ice on the lake… And

she was crawling there on the ice

in her overalls.”

“… If she gets in the water and

under the surface, she doesn’t

know how to get up, since she has

no sense of direction… So it was a

wonder she didn’t drown there…”

DESIGN SCENARIOS

Currently, the caregivers in these scenarios

are aided by certain “bridges” that aid the

provision of safety – these include a chain

of support that caregivers can call on for

help, a system of physical locks that limit

mobility, constant attention to the care

receiver, and, in the case of Devi, the

intermittent presence of paid staff.

At the same time, there are persistent

barriers that serve as obstacles to

caregiving, which include stigma around

the caregiving situation, the need to be

away from the home for work, gender

and cultural barriers that limit caregiving

actions, social requirements, and lack of

communication between caregivers.

The design opportunities lay in not just

creating a safe environment for the

care receiver, but to do it exibly. – in

homogenous scenarios in which both

the care receiver and the care giver are

at home together, mixed scenarios in

which the caregiver needs to leave the

care receiver at home temporarily, and

scenarios, like Frozen Lake, where both

parties are outside the home.

y y

scenarios can signicantly impact the

caregiver’s mobility and connection

to society. Without these certainties in

place, everything from declining social

connection or the inability to participate in

work can occur.

HOW TO CREATE SAFETY, FLEXIBLY:FLEXIBLE SAFETY SCENARIOS:

>> AT HOME: CG & CR

>> MIXED: CR HOME | CG AWAY

>> AWAY: CG & CR

CONNECTED ASSOCIATIONS (PULL FROM

AFFINITIZATION) OR VOICES FROM THE

FIELD

>> Gendered Co-Caregiving

>> Remote Care

>> Reassuring touch

>> Daughter begs, son spoons

>> Community Care

>> Familiarity Counts

>> Light switches are simple

So why could Devi not help her

grandfather?

As Devi’s father, Ravi, explains:

“Ok, I take care of him in some

respects because he’s a male

and I have to I am of the same

gender and the opposite gender,

they can not do anything. But you

have to see the society to contrast;

the contrast is that the relationship

versus gender contrast. Because

he’s a male and I’m a male directly

related to him so my caregiving

would go a little more.”

While Devi, and also Devi’s aunt and

mother, may have limited caregiving

authority due to gender and social status,

we have also learned they use teamwork in genered co-caregiving, where Devi

will call upon her aunt to talk to her

grandfather over the phone in order to

lend her more authority, and how Devi’s

position as a youth and a granddaughter

also allows her more leniency in speaking

directly to her grandfather.

PHASE 2 COPING



p. 62

PHASE 2 COPING



p. 63

PHASE 3

CRISIS

CRISIS: SEEKING HELP


According to Kristi Kanel (2011), crisis can either be developmental or situational. Devel-opmental crisis take years to develop and normally occur in transition phases as peoplemove from one life situation or role to another. Situational crisis can emerge when un-expected and extraordinary events occur that a person has no way of controlling (e.g.crime, death, illness or community disaster). (Kanel K., 2011)

We dene caregiver’s crisis phase as the phase they reach the limits of their strengths – thebreaking point. They realize caregiving situation cannot continue as it is, and start to seek for and – most importantly – are willing to accept external help. In this phase caregiversare forced to turn their focus on themselves and their own coping.

Kanel continues: “In a midst of a crisis, a person is more receptive to suggestions andhelp than he or she is in a steady state.” The opportunity in crisis lies in whether a per-son receives external help. Through crisis intervention he/she can stabilize a higher, moreadaptive level of functioning, which leads to growth, insights and developing new copingskills. The danger is, that without help a person stabilizes lower level of functioning or worse

– nonfunctioning level, which may lead to fatal solutions: suicide, homicide or psychosis.(Kanel K., 2011)

Also caregiver crisis can be approached both as a danger and opportunity, thus thisphase is full of possible design intervention moments. Some of the main caregiver needs inthis phase include: loosing tension, distracting, connecting and nding joy.

SYNOPSIS OF STORIES

In this phase we introduce you to four different stories: Rubber Band, Laugh Indicator, TheHoover/Blinders and Kettleholder.

• RUBBER BAND (AK02) story gives us a vivid metaphor of the mental stage Finnish care-givers are when applying to caregivers’ rehabilitation. We will dive into the details ofThe Rubber Band story later.

• LAUGH INDICATOR (AK02)story tells us how laughter can be used as a metric in re-habilitation process. According to caregivers’ rehabilitation instructor Anne’s experi-

ences, typical caregiver attending to the rehabilitation course has already passedthe limit of exhaustion. During the rst few days they are tired and introverted – mighteven behave aggressively and be dissatised. But once the exhaustion cedes, hu -mour, laugh and joy usually step into the picture.

• THE HOOVER/BLINDERS (HPAK01, AK04) story evokes a question: how to distract fromcaregiving? In Finland, we had a chance to observe a peer support session discussionon a caregivers’ rehabilitation camp. While encouraging the participants to prioritize,the instructor shares a personal story on how she managed to control her own eager cleaning habits and leave her hoover alone. As for The Rubber Band story, we will alsozoom into the details of The Hoover/Blinders story later.

• KETTLEHOLDER (AK07) is a story based on research observations on how caregiversreach for their peers. While observing a caregivers leisure day organized by the localchurch, we notice that the interactions between former and current caregivers canbe facilitated by activities, such as handcrafts – in this case: making kettleholders outof old coffee packages.

RATIONALE, OF WHY ORANGE CIRCLE RELEVANT

Next we are going to zoom into two stories about the caregivers’ crisis phase: (1) The Rub-ber Band and (2) The Hoover/Blinders.

As mentioned earlier, crisis can be either a danger or an opportunity. Rubber band mo-ment introduces us the idea and nature of tension. Tension can either push a persontowards solutions and creativity, or pull him/her at the edge of individual strengths. Thedesign opportunities emerge both in recognizing and preventing the pulling factors and

exploiting and facilitating the push effect. Early and effective interventions of pulling mo-ments on the other hand, could lead to signicant societal savings. The main question TheRubber Band story evokes is: “How to design for tension as an advantage?”

The Hoover/Blinders story encourages us to challenge and question our initial as-sumptions. Before conducting the research we asked ourselves: “What kind ofinformation are caregivers lacking, what more should be provided?” Our studyin fact suggest that even though there are lot of barriers preventing the access to rel-evant information in both countries, in some scenarios caregivers might benet more fromdistraction, information ltering and evaluating tools. The Hoover/Blinders story makes usponder “How to distract from caregiving?”

VIDESIGN

APPLICATION

PHASE 3 CRISIS



p. 64

PHASE 3 CRISIS

(1) “RUBBER BAND” - HOW TO DESIGN FOR changed situation/relationship and do not realize the personal holidays and distance to patient and offer three



p.

65

TENSION AS AN ADVANTAGE?

Anne is a woman on her 40s who runs an occupational

health care surgery at a Finnish rehabilitation center. She is

also one of the instructors of the caregivers’ rehabilitation

course. Anne has witnessed many caregivers applying

and arriving to rehabilitation, and describes us the triggers

for seeking help by using a metaphor of a rubber band:

“Many times people come here when they already feellike they can’t take it any more at all. Many times they

describe they feel like a spring or a rubber band, which

is about to snap. When they’ve reached the limits of their

strengths. That’s what this is quite a lot about.” (110620_TR_

FIN_AK02_v2.pdf, 16, 00:17:29)

Anne describes us the situation, where caregivers start to

turn their minds away from their patients and realize they

need to apply for external help.

This moment has also been described in our other

encounters, for example in India by Mrs. Nilanjana

Maulik (AD02), who provides counseling and advices for caregivers of dementia patients. She shared a story of a

nightly, heart stopping phone call from a suicidal caregiver

who saw no other way out. Breaking point made her seek

help.

In another participant story, Swapna Kishore’s (HPAD03)

case, tension and social isolation led to establishing one

of the largest and most signicant online resources on

dementia and caregiving in India. Swapna’s case is also

an example of the coping strategies applied, when there

is a gap in care and support systems provided.

DESIGN SCENARIOS

The design opportunities of the crisis phase emerge both

in recognizing and preventing the pulling factors and

exploiting and facilitating the push effect.

The pulling factors – or barriers – creating the danger

scenarios in The Rubber Band Scenario occur, when

caregivers are not acknowledging or accepting the

burden it exposes them to.

Many times caregivers are unable to share the burden due

to:

(a) their own expectations like Janet (HP11), who

felt she could not complain about the burden, since she

thought she was too young to complain.

(b) family relationships like Minna (AK09), who feels

she has to make sure not to burden her husband too much.

(c) cultural values and expectations, which also

contribute to the caregiver silence and are pulling them to

the limits of their strengths. Perfect example of this was our

participant Dr. Prasun Dey (AD07).

Opportunities lie in redening the caregiver – care-receiver

relationship, which can ease the burden and caregiver

tension. E.g. in Satu’s (AK11, AKHP01) case the self-

knowledge she gained from the caregivers’ rehabilitation

camp made her redene her relationship to her care-

receiver husband. Our research suggests that to aid the

processing of the crisis, the caregiver should be detached

from his/her patient and home environment. This is what

the concept of Finnish caregiver rehabilitation course relies

on.

In breaking point caregivers also start looking for new

support and are more receptive of accepting help and

advices. Help and tertiary caregivers can be found

from surprising places as professor Chakraborti’s (AD08)

story showcases. He became the tertiary caregiver of a

gentleman through a girlfriend of his son. Tension can be

used as a connection catalyst, it can make you reach for

your peers or other support networks, as usually happensin caregivers’ rehabilitation (HPAK01, AK02, AK03) or it can

make you contribute to the community, if there’s no one to

turn to (Swapna, HPAD03).

When designing for crisis intervention, designers should try

to maintain an extremely holistic view. Solutions have to be

applicable in caregivers’ everyday life, and in many cases,

address both caregiver and care receiver. For example

in Finland they have identied the caregiver’s need for

monthly holidays for all the ofcial caregivers. Yet only 1/3

of caregivers entitled to holidays use them. Why? Because

of the problems in temporary care system. They either

cannot nd a temporary care for their patient or are afraid

that his/her condition will get worse there (Merja, AK06).

Providing holidays is therefore just a part of solution.

HOW TO DESIGN FOR TENSION AS AN ADVANTAGE?

CONNECTING & DISCONNECTING SCENARIOS:

• Tools to connect with self

• Tools to disconnect from CR

• Ways to connect to community

ASSOCIATIONS:

• Balancing CR protection and exposure

• “On hold” caregivers

• Anger of losing dreams

• Fear of judgement creating tension

• CGs own health as a trigger to re-evaluation

PHASE 3 CRISIS



p. 66

PHASE 3 CRISIS

(2) “THE HOOVER/BLINDERS” – HOW TO



DISTRACT FROM CAREGIVING?

Sirpa (AK04, AKHO01) is trained nurse on her 40s, who

is running a peer support meeting for a handful of

spousal caregivers on a caregivers’ rehabilitation course

in Finland. She is a regional manager of the national

caregivers association and has developed a certain

approach to leading these types of peer group sessions.

She uses poems and peer quotes, and shares personal

experiences to evoke conversation. Today she is

encouraging the participants to prioritize, evaluate what

is important and do less. She decides to share a personal

story on how she managed to control her own eager

cleaning habits and leave her hoover alone:

“I have to tell you one story about cleaning,

since I’ve always been very eager to clean. And

I’ve tried to reduce it now… But for me that al-

ways been the kind of, that I can see the results

of my work immediately, whereas in my job it’s

not immediately that obvious. And then when I

got married… I only got married few year ago…

So my mother in law then gave me my husband’s

essay, which he had written on 7th grade and the

topic of the essay was “My Best Summer Holiday”.

And there was a sentence that said “It would be

lovely to sometimes wake up to the birds’ sing

and not to the sound of my mom hoovering”. So

she gave it to me, since she knew I was an ea-

ger cleaner. Now every time I ‘m about to start

hovering I think about that birds’ sing and that’s

a way for me to leave that hoover alone some-

times.” (110620_TR_FIN_AKHP01_AK_V1_C1.pdf,

7, transcript, 00:11:45)After a moment of shared amusement, Sirpa continued

to explain how important it is to identify what is essential

and what can be done less – especially when spousal

caregivers have usually ended up doing all the tasks

their spouse used to do for the shared household. He

also encourages to think where certain norms come

from, are they setting expectations for themselves or is it

a neighbour or a relative who is giving these orders.

DESIGN SCENARIOS

The design opportunities of the crisis phase emerge both

in recognizing and preventing the pulling factors and

exploiting and facilitating the push effect.

The barriers creating obstacles for coping in The Hoover/

Blinders scenario are related to caregivers accepting

their limits, re-dening their caregiving identity and

exhaustion, and recognizing what’s important.

Media and publicity can also be a barrier by creating

a distorted picture of caregiving and society’s

expectations. For example in Finland the national

caregivers association is trying to manage the public

face of caregiving by requesting the local branches

not to appear in media as complainers. Thanks to the

strategy, caregivers are highly respected in Finnish

society, but what are the individual costs? Do you feel

able to complain, when others around you do not?

Design opportunity space is to help caregivers evaluate

and decide what is essential and what they can turn

a blind eye to. Caregivers need to identify what isessential for their patients wellbeing, how to nd balance

between pre-care and current tasks, and what things

they can overlook to gain more time for themselves. They

would also benet from tools and methods providing

distraction.

HOW TO DISTRACT FROM CAREGIVING?

DISTRACTION SCENARIOS

- distract from self

- distract from patient

- distract from the society’s expectations

ASSOCIATIONS

- Detaching from home

- Music: moment of relaxation

- Clean home means you’re not struggling

- Flip side of social graces

- Cultural burden: respect the elderly

PHASE 3 CRISIS



p. 68

PHASE 3 CRISIS

VI



PHASE 4COMMUNITY

COMMUNITY: SUPPORT


We dene caregiver’s Community:support phase as the phase in which caregivers seek and receive different kinds of support from the community. Our eld research shows thatit may be in the form of rehabilitation course, information from fellow caregivers, formalcounseling or new forms of assistance in day-to-day coping.

Caregiving involves many stress triggers: acceptance of the changing nature of care-giving, changes in the family dynamics, household disruption, nancial pressure, and the

sheer amount of physical work involved. It can also trigger a host of difcult emotions, likeanger, fear, resentment, guilt, helplessness, and grief.

As the stress piles up, frustration and despair take hold and burnout becomes a very realdanger. Family caregivers are most prone to burnout which can damage both physicaland mental health; the demands of care-giving can be overwhelming, especially if thecaregiver feels that they have little control or no control over the situation.

“ I feel like a bird in a cage and a prisoner in my own home. Tiredness and exhaus-

tion take me over gradually and unnoticed. I can’t identify or admit it before I’m

burned out. I suffer from insomnia and memory cuts, the joy of life disappears, and

my head buzzes like a bee hive.” (110621_FO_FIN_AKHP01_AK_v1_c1.pdf)It is essential for stimulation and sustenance of the caregivers that they receive appropri-ate and adequate support from not only family & friends but also community.

In Finland, the state has a strong policy framework to support informal caregivers. Reha-bilitation courses, Leisure day activities and counselling sessions for family caregivers areregularly organised and strictly regulated by governmental organisations

“Caregivers’ rehabilitation courses start with an institution period, which means staying 9 days in a spa/holiday resort/other type of rehabilitation center. ……Institution period provides caregivers a secession away from home and from their everyday life. It brings clarity and with the help of professionals they can startto identify difcult issues. The period aims in gaining both physical and mental

strength and offering peer support.” ( 110620_FN_FIN_AK02_AK_v1_c1.pdf)

Our research suggests that in support groups, caregivers are encouraged to share their problems with professionals and fellow care-givers; they are not only offered professionalhelp and suggestions, but they too are also able to help other caregivers. Most impor-tantly, the caregivers feel better knowing that there are other people in the same situationespecially if they’re dealing with the similar type of care-giving.

“A few years ago, I saw attending a ‘support group’ meeting as a sign of weak-ness, as an activity that would be a waste of time at best, and a negative eventotherwise. How very wrong I was. Many of us attending may be overwhelmed,but then there are others who have found ways out, and help us with suggestions.

There is no judgment, no criticism–we understand each other in a way that de-es description. Participating in the meetings gives us an opportunity to feel weare not alone in facing the problems, it gives a sense of perspective, and oftena new insight. Each meeting moves us ahead.” (090104_IN_HP03_Blog_Support-grps_HP_v1_c1.pdf)

In India, the nature and importance of care-giving at times are not acknowledged evenby the family members:

“….the pain of it is not acknowledged by anyone. And acknowledgment is a veryimportant part because it drives people into isolation when there is no acknowl-edgement.” (110630_TR_IN_HPAD03_HP_v1_c1.pdf)

There are only a handful of organisations that support to caregivers. For example, fewARDSI chapters organise monthly meetings for caregivers but the efforts are sporadic andirregular. Also most caregivers are not aware of different kind of supports available tothem. A few individuals, organizations, and medical institutions have started to offer someonline and ofine support in the last three years.

VIDESIGN

APPLICATION

SYNOPSIS OF STORIES for……...” (110704_TR_FIN_AK09_AK_V1_c1.pdf)Saara a Finnish wom

“I know that music therapy has a tremendous im-

t t d ff t th ll b i d th



1. NICE SHOES, DANGEROUS SHIRTS (AK07)

CG Leisure Group is a summer leisure day organized for caregivers by the church and the national caregivers as-sociation, Omaishoitajat ja Läheiset –Liitto, in Tampere,Finland. On the day of our observations, four former care-givers, two organizers on behalf of the church and onlyone current caregiver were participating. Our researchersfound out that the meetings aren’t structured any way -the leisure day usually consists of making some handicraft,spending time outdoors, bathing in sauna , swimming inthe lake and barbequing sausages on the camp re. Themeeting provided the caregivers an environment to relaxand the ex-caregivers did not talk about any care-givingrelated topics at all.

One of the ex-caregivers included Saara ( who was par-ticipating for the rst time and the only one with a currentcare-giving responsibility ) in the group by choosing to talk about the colour of her shirt:

“ F4( one former caregiver) agrees and comments

that Saara(F7) is wearing a very dangerous co-

loured shirt. She tells that she was wearing the same

colour the other day and wasps were all over her.”(110629_FO_FIN_AK07_AK_v1_c1.pdf)

We call this a ‘nice shoes’ effect where something as trivialas the colour of the shirt was used as a ‘connection cata-lyst’ instead of any anecdotes or experience of caregiving.Our researchers found that the ex-caregivers did not men-tion anything related to care-giving at all except Saararaised her concerns related to her mother’s diaper use.

2. DIAPERS (AK07/AK09)

Minna is a 51-year-old Finnish woman taking care of her 84-year-old mother. She herself has been a hairdresser andentrepreneur for 34 years, but is currently on a disability

pension because she can’t strain her right arm anymore.

Minna doesn’t have the ofcial caregiver agreement withthe city council, even though she would be entitled to themonthly monetary support from the government. Minnahas managed to negotiate 3 pull-up diapers a day fromher council even without the ofcial caregiver status:

“I’ve already got negotiated 3 pairs of pull-up

diapers a day, which the municipality is paying

Saara, a Finnish wom

an in her 70s’ is thecaregiver of her 96-year-old mother. Shewas a participant in the CG Leisure Groupas mentioned inthe story above. Here she met four ex-caregivers and twochurch staff for the rst time. After a couple of hours whenSaara was comfortable enough, she asked the next par-ticipant about how to get better monthly payments andafter a moment of awkward silence the ex-caregivers re-sponded and shared information about the use of diapersas a criteria for better payment:

“F7 tells they use diapers, but not the ones coun-

cil provides, since her mom doesn’t like those. She

has to pay for the diapers herself. N4 tells her that

nowadays council gives better diapers as well and

suggests N7 should try to convince her mother to

try them again.”This particular story highlights the importance of receivinginsiders’ information from fellow care-givers; as caregiversin Finland often navigate through complex bureaucraticprocess, these information provide them valuable guid-ance and support.

3. SING (AD08)

Prof. Prafulla Chakraborty (AD08) in Kolkata, India becamea tertiary care-giver to Mr. Dutta, her son’s girlfriend’s father in a very unusual situation. He narrated the context to our research team:

“She came back to attend to her father

leaving high salary, good amount. Her brother lives

downstairs with wife and children, but the most piti-

able thing she said, they don’t even speak about

father’s condition, not to speak provide money

and all those stuff. And this girl, Rajashri, she’s ask-

ing me every now and then, “Uncle, what shall Ido? My brother is misbehaving with my father,

even obstructing doctors and counsellors to come

to enter into my house.”

In this situation Prof. Chakraborty became a tertiary care-giver to this gentleman and his care-giving responsibility in-cludes entertaining and engaging him by singing songs inhis “harsh” voice:

pact, tremendous affect on the well being and the

satisfaction of the members. Sometimes it so hap-

pened that Mr. Dutta plunged in a deep slumber

or deep sleep when I am singing that song. And he

loves to hear those songs which are old, old Rabi-

ndra Sangeet, not new. Very colloquial very com-

mon, this kind of... Now this is rainy season going on

so I used to sing rainy season songs. In this way, I

give little bit of help.”

This moment signies the importance of contextual ‘con-nection catalysts’ which can be used to relate to care-re-ceivers in an engaging way. Being in the same generationand social group with Mr. Dutta, Prof. Chakraborty foundout a novel way to help the care-receiver.

4. CHILDHOOD: WATERBUCKET, GAMES, TOILET (AK03,HPAD03, AD02, HPAD12)- HOW TO DESIGN FOR THE FUTURETHROUGH CHILDHOOD?

‘Waterbucket’ is a story based on research observationsabout how care-receivers remember even the smallestdetails from their childhood. While explaining to caregiv-

ers how to prioritize and focus on the care-receiver, theinstructor at Lake Group Rehabilitation course recollectedher own experience as a nurse for a dementia care home.She narrated how evocatively dementia patients couldrecollect their childhood memories in great detail and howmemory-journeys could be a source of joy for both care-giver and the care-receiver:

Swapna Kishore(HPAD03) chose childhood games to keepher mother engaged and entertained; to her surprise shefound out that her mother liked to play the games. Shealso used simple games as a tool to make the attendantsunderstand her mother’s condition:

“I had started “playing games” with my

mother; the attendants saw my mother struggle

with the same simple six-piece jigsaw every day,

and began understanding the nature of the prob-

lem” (retrieved from http://swapnawrites.word-

press.com/?s=attendants&searchbutton=go%21)

Simple games associated with their childhood memories can entertain dementia care-receivers for hours end. In our group observations we found

out that in ARDSI Kolkata centre, the day-care patients areprovided with soft toys simple game and drawing books to

your loved one.” (110710_FO_IN_HPAD12_HP_v1_

1 df)

problems they have, but they don’t know how to

l k ft th T W h 3 7 illi l



p. 71

provided with soft toys, simple game and drawing books tokeep them entertained:

“Everything in the center was carefully

ordered, with careful consideration to create

a homey, vibrant, colorful environment which

included books, toys, posters and photos of

the community of the center.” (110710_FO_IN_

HPAD12_HP_v1_c1.pdf)

Brig. Bhattacharya mentioned during the interview that hecould take care of his wife only because he was familiar with her childhood memories:

“You are maintaining her quality of life and then

as you go along and she is not able to take on

much, then you realize that you have to go back

and apply in a receding manner the ‘reminiscence

therapy’….. the brain recedes in there, backwards

to the childhood. And to identify how, when, what

stage of the brain is it now, what is the mental age,

and if you are able to speak something which she

can take or can relate to, she is very comfortable.

…..At one time.....at an advanced stage the

comfort stage maybe only…. only fairy tales. Still

we all... it will be perhaps some nursery rhymes she

has heard when she was only a child.” (110628_TR_

IN_AD03_AD_v1_c1.pdf)

5. “DEMENTIA DANCE/ SWIMMING POOL OF CARE ”(HPAD12)

In ARDSI Kolkata, our researchers found that they make theexperience of care-giving visible, prominent, celebratoryand inclusive and focus on dementia as a humanexperience:

“There is a (handmade poster) in a small box (

on the handmade wall-magazine) that describes

“Dementia Dance” which includes: “Do not

argue; accept the disease; Nurture your physical

and emotional health; Creative problem solving

methods to be used; Enjoy the moment with

c1.pdf)It seems that the patients oat in a ‘Swimming pool of care’;there is a constant ow of care for and around them:

“…..All clients were acknowledged and interacted

with – the staff were aware of their smallest

movements and needs, often shadowing them

and partnering together to help a client.” (110710_

FO_IN_HPAD12_HP_v1_c1.pdf)

6. COMMUNITY CARE (AD01, AD11) - HOW TODESIGN TO BREAK DOWN FAMILY/CULTURE?

To solve the problem of growing number of patients ofdementia and lack of adequate medical resourcesexperts have suggested “community care”, a new modelof intervention aimed at improving the quality of life ofhome-based dementia care-receivers and their carers, byenhancing their caregiving knowledge and skills, providingemotional support and maximizing care-giving resources .

Dr. Indrani Chakravorty(AD01) stressed on the importanceof the concept especially as traditional structure andvalues are undergoing transformation in India :

“….. women are considered as the primary care-

giver all over the world and because of the eman-

cipation of women, they are working in jobs out-

side. That means that the aged are left alone at

home. That is a real problem we are facing and

that is why we are now stressing up on this ‘com-

munity care’ concept.” ( 110713_TR_IN_AD01_AD_

V1_C1)

Dr. Amit Dias (AD11) stresses that novel conceptlike “community Care” is important for India for a number

of reasons:

“Because one, most of the people with

dementia live with their families and so building

institutions may not be the solution for them. One,...

families will not want to put their loved ones in an

institution because, one, of the stigma, and they

still want to look after the elderly with whatever

look after them. Two, …. We have 3.7 million people.

So, how many institutions can they come up with

even if you think you’re going to put them in an

institution? Three, everyone, even abroad, people

are trying to deinstitutionalize people. Institutional

care is very expensive, one, and not very high

quality. If we can ..... have the families look after

people with dementia in a better manner, improve

the quality of care, I think that is the best solution.For a country like us, I think family care is important.”

WHY THE ORANGE CIRCLE IS RELEVANT?

This phase offers a lot of opportunity for design interven-

tions through understanding and using ‘memory- journey’

and ‘community care to create systems and services to

support the wellbeing care-givers and the care-receivers.

To understand the phase holistically, one needs to under-

stand the dynamics of relationship of the care-giver and

care-receiver through the lens of community support.

The design opportunities emerge both in recognizing andpreventing the barriers to community support that hinder

the wellbeing of the care-giver and care-receiver and

facilitate the process of supporting them positively. Espe-

cially, it is important to understand how “community care”

and “memory journeys” can provide answers not only in

the present but in the future as well.

PHASE 4 COMMUNITY



p. 72

PHASE 4 COMMUNITY

ZOOM IN ON “CHILDHOOD: WA-TERBUCKET GAMES TOILET”

The game had to be simple enough

in terms of its rules and visually and

• Caregiver Burden: Caregivers

have difculties in accepting the loss of

lot of business opportunities to create sim-

ple technology based devices and prod



p. 73

TERBUCKET, GAMES, TOILET

Next we are going to zoom into one design-

intervention moment in this phase “Child-

hood: Waterbucket, Games, Toilet”.

“CHILDHOOD: WATERBUCKET, GAMES,

TOILET”- HOW TO DESIGN FOR THE FUTURE

THROUGH CHILDHOOD?

‘Waterbucket’ is a story based on narrationby the instructor of Lake Group Rehabilita-

tion Course; she described how dementia

patients could recollect their childhood

memories evocatively in great detail and

how memory-journeys could be a source

of joy for both care-giver and the care-

receiver:

“I worked in a dementia care home

for a while as well… Was that when

a person can’t travel any more or

even visit their home, then memory journeys are very nice! ..… One

can go as far as to the childhood

home, and what was there on the

yard and what was there when

you opened the house door, what

can you see there… And people

remember many things, starting

from a water bucket……they even

remember smells and that feeling…

They remember the sun on the skin.”

Swapna Kishore(HPAD03) chose to keep

her mother engaged and entertained by

using childhood games:

“At the toy shop, as I

looked around for board games

I could play with my mother, the

shopkeeper was most helpful. ……

in terms of its rules and visually, and

it should work well with two players.

Finally, I got us a Snake and Lad-

ders………By the time I suggested a

game to her, I was quite apprehen-

sive. I gave her the rst turn, rolled

the die for her, moved her token (I

simplied some rules). I took my turn.

Her turn. Mine. She climbed a fewladders. She smiled…..”.

The staff of ARDSI Kolkata mentioned dur-

ing our group observations that as the

care-receivers start losing the memory of

their adult life and recede to the memory

of their childhood, they forget how to use a

western toilet (which is usually a habit most

Indians learn as an adult) and revert back

to the childhood habit of using an Indian-

style toilet.

ASSOCIATIONS

The design opportunities emerge both

in recognizing and preventing the barri-

ers and strengthening and facilitating the

bridges:

BARRIERS

The barriers creating obstacles for ‘Child-

hood: Waterbucket, Games, Toilet’ scenar -

io are related to:

• Pre-existing Relationships: Caregiv-

ers often feel lost when they cannot reach

the depth of the early memories of the

care-receivers. This problem is more com-

plex when an offspring provides care for

his/her parents.

have difculties in accepting the loss of

the known human personality and a loved

one. It also becomes very difcult to un-

derstand the memory journey, especially

when they when language prociency of

the care-receiver is severely hampered.

• Cultural Hierachy & Values: In In-

dia, an offspring is expected to take care

of the parents and often a family member is actively or passively chosen to take the

responsibility of care-giving. They often

nd it difcult to accept the loss of a “par -

ent”. Our research shows that care-giving

becomes a shocking and difcult reality

for caregivers, especially when the care-

receiver no longer recognises them.

BRIDGES

Bridges creating the opportunity spaces in‘Childhood: Waterbucket, Games, Toilet’

scenario are:

• Connection catalysts: opportunity

space is to provide caregivers to under-

stand and evaluate the ‘memory journey’

through connection catalysts and to help

them navigate the care-giving situation

more efciently.

• Space & Objects: opportunity to

create sense of familiarity though aug-

mented use of space and objects

• Non-verbal communication: Fa-

miliarity using “memory journey” as an inspi-

ration can facilitate non-verbal communi-

cation through sounds, sights, tastes, smells.

Textures etc.

• Touch & Technology: It presents a

ple technology-based devices and prod-

ucts to facilitate and capture the “memory

journey” as and when they happen.

HOW CAN WE DESIGN BY UNDERSTANDING

CHILDHOOD?

DESIGN SCENARIOS:

>> ON THE MOVE

>> FOR TODAY

>> FOR FUTURE


>> Redening relationships: role re-

versal

>> Connection through games

>> Familiarity through object, space,music

>> ‘Futurescaping’

>> Adaptive technology to aug-

ment ‘memory journey’

PHASE 4 COMMUNITY



p. 74

PHASE 4 COMMUNITY

ZOOM IN ON “COMMUNITY CARE” • Cultural Hierachy & Values: In India, trained carers

are yet to be accepted at an equal level as family carers

families with dementia with activities of daily liv-

ing and things like that So they will go and visit



p. 75

“COMMUNITY CARE”- HOW TO DESIGN TO BREAK DOWN

(BARRIERS OF) FAMILY/CULTURE?

“Community Care” is an award-winning alternate model

of intervention based on experiments initiated by Dr. Amit

Dias (AD11) in Goa. He argues that:

“….. it (the intervention) had to be community

based since many patients with dementia and

their caregivers were unable to attend health fa-cilities due to mobility difculties and lack of trans-

port. …..This model ensured that more services (for

example, number of visits or medication) were pro-

vided to those who were in greater need.”(Dias,

Dewey, D’Souza, et al. 2008)

ASSOCIATIONS

The design opportunities emerge both in recognizing and

preventing the barriers and strengthening and facilitating

the bridges to improve the quality of life of home-based

dementia care-receivers and their care-givers:

BARRIERS

The barriers creating obstacles for ‘Community Care’ sce-

nario are related to:

• Organisations & Bureaucracy: Caregivers often

feel lost when they cannot navigate the organizational

bureaucracy to seek support for effective care-giving:

“OPD ( Out-Patient Department)….. even the

thought itself will put people off. Seeing a person

with dementia, standing in an OPD, waiting in aqueue …..(where) you will be some 30th in queue.

So that person with dementia will not be able to tol-

erate it. Caregivers will not be able to put up with

the behavioural problems that would arise as a re-

sult of that. So they don’t even want to go to an insti-

tute like that.” (110712_TR_IN_AD11_AD_V1_C1.pdf)

are yet to be accepted at an equal level as family carers

and they are treated differently than other medical pro-

fessionals. Professionals like Mrs. Nilanjana Maulik is trying to

trigger a change of this traditional mindset:

“All I do is inform the (family) carers that you have

to accept this change of mindset. And at the same

time I tell my carers that you’re trained, you tell this

is how it is done. You can.”

( 110707_TR_IN_AD02_AD_V1_C1.pdf)

BRIDGES

Bridges creating the opportunity spaces in ‘’Community

Care’ scenario are:

• Caregivers’ Burdens: Community carers are

trained to support care-givers at their home by augment-

ing their care-giving knowledge and skills , for example

they help elderly caregivers (of the community) who live

alone with the care receiver in day to day care-giving.

• Peer Support: They are also trained to facilitate

networking among caregivers to form supports groups.

• Caregivers’ Wellbeing: This successful intervention

concept has been able to enhance the overall wellbe-

ing of the caregiver by educating them about effective

dementia management , supporting them in day to day

care-giving and providing them with a channel to express

their concerns.

• (Re)making Culture: The community carers not

only support the primary care-givers but also assess

who will be able to share the responsibility of care-

giving among other family members:

“…..we develop these kinds of home care advis-

ers who are non-medical people who are trained

in dementia care, who are trained in dealing with

their problem-behaviors and activities, assisting

ing, and things like that. So they will go and visit

the house, nd out what the home environment is,

nd out who can be the possible caregivers. It’s

usually a job of only one principal caregiver who

does everything for that person. We try to nd out if

somebody else can also chip in and help out in the

care because it’s a long term process.”( (110712_

TR_IN_AD11_AD_V1_C1.pdf)

HOW TO DESIGN TO BREAK DOWN (BARRIERS OF) FAMILY/

CULTURE?

INTERVENTION SCENARIOS:

>> FOR THE CAREGIVER

>> FOR THE CARE RECEIVER

>> FOR THE COMMUNITY


>> ‘From clinic to home’

>> Individualised care within the community

>> ‘Dependency anxiety’ of elders

>> ‘Single window’ access to multi-disciplinary

teams

>> Breaking cultural hierarchy of care-giving

>> Making ‘dementia’ visible

PHASE 4 COMMUNITY



p. 76

PHASE 4 COMMUNITY

CULTURAL IMPLICATIONS - FINLAND VS. INDIA



p. 77

Our study suggests that in Finland a lot of caregivers nd it increasingly difcult to navigate

the bureaucracy and seek appropriate help. About two-thirds of the eligible caregivers

do not avail the facilities available to them.

Minna, a 51 year old Finnish caregiver to her 84 year old mother wishes that:

“If municipalities would have money, they should nd out the caregivers and

send a patrol to their door to nd out their needs, without them having to call to

various numbers. When you’ve already called to ve numbers without anyone

even answering the phone or just giving you yet another contact information,you rather leave it …… So yeah, I’d like to see a patrol just attacking to my door”.

(110704_TR_FIN_AK09_AK_V1_c1.pdf)

It seems that if applied to the context of Finland ‘community care’ intervention model can

solve Minna’s problem. Instead of her calling up different organizations, one community

care-giver can become the ‘single window access’ to available services and multi-disci-

plinary specialists, can come to her doorstep to assess the needs of both the care-giver

and care-receiver and facilitate appropriate solutions to their issues.

However, it needs more research to ascertain if the concept of community care will ac-

tually be able to solve the problems faced by caregivers like Minna in Finland or create

more complexity for them and alienate the care-givers farther from the system.

VI



p. 78

PHASE 5

SELF-CARE

SELF: SELF-CARE AND SPACE


The nal phase is all about the caregiver – obtaining the mental and/or physical space

to focus on their self-care. In the stories above, we have heard about the importance of

distraction – both from personal and societal expectations, and from the actual caregiv -

ing activity as well. From our research we have found out that before reaching the Self-

Care phase, caregivers usually evaluate and re-dene their care-giving relationship and,

either by the help of support networks or self-examination, manage reduce some of the

care-giving burdens. During our research we have witnessed how in this phase caregivers

use space as a coping mechanism and need their peers to reach their individual goals.

SYNOPSIS OF STORIES

Let us briey introduce two stories: The Staircase and Exercise buddies.

The Staircase story is about using physical barriers to create personal space. In Finland

caregiver Minna (AK09), who is taking care of her mother, had build a staircase to her new

home extension. She described that staircase had become her savior, since it allowed

her to escape from the patient time to time. We will be zooming into the details of TheStaircase story later.

The story of Exercise buddies suggests, that caregivers need their peers – not only in re -

ection and mental support – but also as motivators in physical self-care. One of the

local chapters of the national caregivers’ association at Tampere, Tampereen Seudun

Omaishoitajat, has established a new project called PETRA, which aims to further caregiv-

ers’ physical health by coaching and peer supported exercising. The idea is to pair up

caregivers to exercise together and also offer health education and professional help.

RATIONALE, OF WHY ORANGE CIRCLE RELEVANT

The Staircase story is about the use of space as a coping mechanism. The idea of care-

giver’s space evokes interesting questions and possible design opportunities:

• What kinds of design needs does co-residence create?

• Does the management and maintenance of space provide comfort to a care-

giver?

• How can we design separate physical or psychological spaces?

• What does the future caregiving space look like in India as a result of urbaniza-

tion?

DESIGNAPPLICATION

PHASE 5 SELF CARE



p. 79

PHASE 5 SELF CARE

(1) “THE STAIRCASE” – HOW TO CREATE DISTANCE?

Mi i 51 ld i t ki f h 84 ld th Mi h h

In Finland, they also use physical distance as a tool on caregiver’s rehabilitation. The idea

is to detach caregivers from their home environment and their patients to allow them the



p. 80

Minna is a 51-year-old caregiver taking care of her 84-year-old mother. Minna, her hus -

band and her mother recently moved into their current house. It used to be an old sum-

mer cottage build by Minna’s father, but they have fully renovated it. The household also

includes two small dogs, which are very dear to Minna.

When the decision of Minna’s mother moving in to live with them was made, they decid-

ed to build an extension with two extra rooms and a storage room to make more space.

Keeping in mind that the extension was planned and built after the caregiving decision

was made, researcher was very surprised to see a staircase separating the old and the

new part of the house. After all, Minna’s mother mobility had suffered quite a lot due to

the two strokes she has had. She can only walk short distances indoors using zimmer frame

– for longer distances she has to use wheelchair.

After a while Minna revealed that staircase helps her to dissociate from the care-giving

situation regularly and allow her to indulge in some hobbies:

“I just realised that I do have hobbies. So at 6pm every day I have to watch a

tv-series about a German hotel. So that’s a must. But unfortunately lately I’ve

noticed that I’ve missed it quite a few times… But when it’s on I try to fortify my-

self to my room. I have a good situation in terms that I get to be all on my own

down there, so no-one can come here (interviewee gives me a meaningful nod

towards the patient). Since they can’t come here. So this is kind of my kingdomhere.” (110704TR_FIN_AK09_V1.C1.pdf, 12Mid, transcript)

DESIGN SCENARIOS

The Staircase story introduces us, how caregivers have developed individual coping strat-

egies for not to lose the sense of self. In Minna’s case (AK09) the solution was to become

territorial:

“So here is the technical space, but I use it as my wardrobe. It’s not a real ward-

robe, but I wanted to have a space for just my clothes. So that’s something new,

like “my this and my that”. So there needs to be that own territory, so it shows up

as “my… my wardrobe, my this”.(…) All this my room and my tv thing probablyderives from… That kind of that identity of mine is disappearing, so that you have

to be building something all the time, so your mind will stay… I don’t know, why is

that. I’m gonna nd out that reason some day.” (110704TR_FIN_AK09_V1.C1.pdf,

12Low, transcript)

right mindset for reecting and evaluating the situation (AK02, AK03). The Finnish care -

givers’ rehabilitation concept evokes a question: What is the smallest (physical/virtual)

change of scenery that can make a difference in caregiver’s recovery and coping?

Physical barriers are also used in India, where Swapna (HPAD03) lives in same

building, but in separate ats with her mother” and Ravi’s (HPAD07) family had

combined two apartments together:

“We have two apartments combined. One one side we have where my grand-

father lives, his tv and everything and that’s where he primarily stays and the second part, which is, there’s a passage to go to the second apartment, where

there is a study for my mom to take her calls.” (110708_TR_IN_HPAD07_HP08_

HP09_HP_V1_C1.pdf, 28, transcript, 00:57:16)

In Finland we have heard stories how, not only the company of peers, but for example the

company of grandchildren (AKHP01) or a younger non-disabled child (Laura, AK10) pro-

vides energy and joy for caregivers. We have also heard, that though caregivers value

even the inaccurate information provided by their peers (Merja, AK06), the value of a

peer support is not always in information sharing. In fact, Laura (AK10) is a regular mem-

ber of a peer support group, which is aimed for the mothers of disabled children. She

revealed that during the peer group sessions they do not discuss about their children atall. These cases could also be seen as using mental distance for self-care.

PHASE 5 SELF CARE



p. 81

PHASE 5 SELF CARE

CULTURAL IMPLICATIONS - FINLAND VS. INDIA One thing is clear, as our participant Prof. Pra-fulla Chakraborti (AD08) pointed out: there is a



p. 82

Our study suggests there’s an interesting differ-ence between Finland and India in terms ofcaregiver self-care. In Finland, the initiatives aim-ing for caregiver wellbeing have a strong indi-vidual focus (such as caregivers’ rehabilitationcamps and caregiver holidays). In India, whilecaregivers may have desires to nurture individu-al wellbeing, current system is more focused on

how to help the care-givers cope with the dailyactivities of care-giving and how to adapt tothe new ‘relationship’ with care-receiver .

As mentioned above, both in Finland and Indiaphysical barriers between caregiver and care-receiver are used to provide distance. The futureof co-residence seems especially interesting inIndia, where the peoples habitats and residen-tial areas are changing due urbanization. Howcan the reducing amount of physical spacebe replaced, and more importantly, what are

the possibilities emerging from this rural to urbanshift?

And it is not only the caregivers who need pri-vacy and space. Cultural changes in India sug-gest, that also elderly people, the future care-receivers, have started to value their own spaceand privacy and choose to live alone in familiar homes:

“A lot of parents have learned to appreciate own

space. I don’t think earlier parents thought they

would like to live alone, I think now they do. They like

own space and own life, tend to live on own terms.

I have an aunt who needs care but won’t leave out

of her own home; her children live abroad. She likes

her life, Unless you’re totally bedbound and helpless,

you want to live own life and visit your children, that is

a growing trend.” (110712_TR_IN_HP05_HP_v1, 16Mid,

transcript)

little research done for elder care in rural India.Most elder care studies concentrate on urbanIndia and pensioners. As India witnesses migra-tion of more citizens from rural to urban context(not only geographically but culturally as well),a need to understand the rural experience andthe subsequent transformations becomes moreurgent to provide holistic support to caregivers

from different strata of society.

HOW TO DESIGN FOR DISTANCE AT HOME AND ON THE

MOVE?

DISTANCING SCENARIOS:

• Creating distance at home

• Creating distance from home

• Creating distance “to go”

ASSOCIATIONS:

• Urban apartments & increased interac-tion

• Sense of belonging through familiarity

• Touch gap

• Physical distance encourages sharing

• Support groups provide space



“

...”

1. Familiar novelty: Intro-

duce new technology devices

using amiliar orms thatprovide a sense o continu-

ity to ormer traditions and

support quality o lie activi-

ties with minimal disrup-

tion and maximum simplic-

ity.

2. It’s intimate, but it’s

not personal. Make it less

intimidating to let go...”

V I I. C O N C L U S I O N S

VIICONCLUSION



p. 84

Ruth Benedict, anthropologist1887–1948

“The purpose of anthropology

is to make the world safe

for human differences.”

CONCLUSION

DESIGN FOR THE PRESENTe



DESIGN FOR THE PRESENT:

THEMES:

1. CAPACITY WITHIN REACH: Initiatives are focusing on

how ‘community’ CAN provide support, not on what

they can’t provide.

2. MAKING THE BEST OF STAYING AT HOME AND FINDING A

WAY OUTSIDE: Coping is about day-to-day “SURVIVAL”;

care-givers adopt “whatever works”

3. PRIVATE AND PUBLIC PERCEPTIONS OF CAREGIVING:

Care-giving is not bound by one universal denition

(even within a country); it is redened personally and

culturally.

4. CHANGE AND FAMILIARITY: ‘Familiarity’ IS crucial for

effective care-giving.

TECHNOLOGICAL IMPLICATIONS:

• To provide the care-givers with an interactive context-aware device to

provide with information as per the changing requirements of care-giving.

• To provide a secure network of support-advisers or listeners through touch,

voice sensitive devices ( E.g. if a care-receiver falls and the caregiver is

using both the hands to support he or she will not be able to activate/

operate the device with ngers).

• As mentioned by Dr. Indrani Chakravorty from India, domiciliary services

like cooking, cleaning, home maintenance are becoming an increas-

ingly important area to provide support to caregivers, especially elderly

caregivers who live alone with the care-receivers. Technology can play a

major role in augmenting these routine works and help care-givers iden-

tify trusted service providers’. The key is to provide assistance in ways that

the caregivers want without being obtrusive.

• Biosensors that provide continuous, real-time monitoring of vital signs and

other physiological functions combined with motion detectors can be

used to transmit digital reports to the caregivers and alert them about the

need of the patients.

• Smart homes with a range of built-in sensors (e.g., temperature, pressure,

fall detector) that monitor an individual’s daily functioning and provide

prompts for task completion as needed may be used as memory aids as

well as safety measures, especially for patients with a tendency to wan-

der off.

• Intelligent Assistive Technologies that sense and respond to user needs

are adaptable to changing situations and compensate either for physi-

cal or cognitive decits may be used for understanding the needs of the

patients when they cannot express the same in words.

• Smart garments or textiles can be used as sensors to do real-time monitor-

ing outside home to understand the condition and need of the patients.

• Technology –based simple games may help to keep the care-receiver

engaged and caregiver entertained.

• In her book, Alone Together Sherry Turkle describes how ‘sociable robots’

inspired the elderly residents of institutions to talk and how “technology

has become the architect of …. Intimacies”. Similar robots may be used

to inspire sharing by both patients and caregivers.

c o n c

l u s i o n s

a t a g

l a n c

e



DESIGN FOR THE FUTURE:

THEMES:

1. Flexible safety and co-caring scenarios

2. Innovative familiarity

3. Distance and Distraction for Self-Care

4. Navigating bureaucracy swamps

5. Communities in transition.

TECHNOLOGICAL IMPLICATIONS:

• Technology based reporting tool for neighbourhood co-carers. Especial-

ly in the case of dementia care, caregivers might benet extra eyes in

their neighbourhood whenever they have to leave home. Has the pa-

tient exit the building? Has the patient let someone in the apartment? Is

there something extraordinary going on in the neighbourhood that might

trouble the patient?

• Co-carer tracking tool. Especially in the case of gendered caregiving,

people like Devi who couldn’t help her grandfather in the bathroom,

might nd co-carer tracking tool comforting. It would help them to track

trusted male/female co-carers from the neighbourhood to help them in

a case of emergency.

• Memory journeys application. Application to initiate caregiver – care-

receiver communication on care-receiver childhood. Tool to create un-

derstanding, interaction and aid the caregiving as dementia progresses.

• Detaching reminder. An application that allows the caregiver to record

and track his/her stress/frustration level and suggests a mental brake

when the tension gets too high (activates a playlist, uploads a favourite

tv-series, etc).

• Bureaucracy Butler. A personal, Wikipedia of how to navigate the local

caregiving bureaucracies. First hand information from peers to peers.

• Overseas online peer support groups. As our study suggest, the younger

generation of caregivers don’t necessarily turn to their peers just in need

of caregiving related information. They might in fact choose to talk about

everything but caregiving with their equals, and are more likely to ndinformation online. One of our interviewees in Finland suggested (Merja

Purhonen, AK06) that the younger, migrated future caregivers might ben-

et from online peer support groups where they would be able to share

thoughts in their rst language.

c o n c

l u s i o n s

a t a g

l a n c

DESIGN PRINCIPLESe



FOR CARERS

1. FAMILIAR NOVELTY: Introduce new technology devices using familiar forms that provide a sense of

continuity to former traditions and support quality of life activities with minimal disruption and maximum

simplicity.

2. DISTRIBUTED CARE: It’s intimate, but it’s not personal. Help caregivers understand who, what and how

to ask for help to make it less intimidating to let go and reach out.

3. HEALTHY DISTRACTION: Help caregivers understand it’s not always about what they need to do; bal-

anced caregiving also includes understanding what doesn’t need care.

4. BELONGING MOMENT: Provide ways to capture and focus on the present moment

5. POWERFUL SILENCE: Focus on technology that uses and enhances non-verbal communication.

6. MANAGING WATERSHEDS: Provide a way to share hidden watershed moments externally

7. IMAGINED SPACE: Provide a sense of distance, even if only mentally.

c o n c

l u s i o n s

a t a g

l a n c

in depth

conclusionsfollow...

THEVII

CONCLUSIONS



p. 88

THEPRESENT

BUILDING ON INTEL: DESIGN FOR THE PRESENT

During our research in how to understand informal caregivers in Finland and India, how

caregiving is shared, and how caregivers cope, we learned that there is a time for caregivers

to adapt to their caregiving role alone and there is a time in which caregivers work with others

to explore shared coping strategies. In addition, we understood the careful balance caregivers

navigate between exploring solutions for their needs as individuals and also to care for the

care receiver needs.As most of our participants were caregivers for care-receivers over the age of 50, we found it

relevant to revisit the main ndings from Intel’s Global Aging Experience project (Intel (2007)

Intel’s Global Aging Experience project, retrieved from http://www.intel.com/healthcare/).

As we hope to build upon and contribute to the existing body of work within Intel, we’ve noted

where our research applies and adds to the existing body of work and suggest (4) emergent

themes in designing for caregiving in the present:

1. CAPACITY WITHIN REACH: Initiatives are focusing on how ‘community’ CAN provide

support, not on what they can’t provide.2. MAKING THE BEST OF STAYING AT HOME AND FINDING A WAY OUTSIDE: Coping is

about day-to-day “SURVIVAL”; care-givers adopt “whatever works”

3. PRIVATE AND PUBLIC PERCEPTIONS OF CAREGIVING: Care-giving is not bound by one

universal denition (even within a country); it is redened personally and culturally.

4. CHANGE AND FAMILIARITY: ‘Familiarity’ IS crucial for effective care-giving.

CONCLUSIONS

PRESENT THEME CATEGORY 1: CAPACITY

WITHIN REACH

EMERGING THEME FROM “WHO CARES

FOR THE CARERS” 2011 STUDY: Initiatives

are focusing on how ‘community’ CAN

In Finland, although the Rehabilitation

courses are strictly regulated by KELA, the

organizations try to mould the counseling

is an intensely personal and individual

relationship and activity; it was rare

for caregivers to entrust activities such



EXISTING THEME FROM INTEL GLOBAL

AGING EXPERIENCE PROJECT: People

want to focus on what they CAN do, not

what they can’t.

Few people self-identify as either sick or old.

Many people seek out challenges in order

to keep themselves mentally sharp, and

choose not to use canes or other assistivedevices. Still, many people will need

assistance. The key is to provide technology

that people recognize as helping them to

do what they want, rather than reminding

them that they are no longer capable.”

(Intel, 2007)

CARING FOR THE CARERS: We found

that caregivers are both capable and

like to perceive themselves as capable;

it was difcult for caregivers to articulatewhere they needed help beyond some

basic caregiving concerns such as

proper nutrition and feeding techniques

as well as the safety of their care receiver.

On the other hand, within a caregiving

relationship, it was difcult for both the

care giver and care receiver to accept

what was no longer possible for the care

receiver, or for the relationship between

the care receiver and the caregiver. The

shift of identities and capabilities for the

care receiver often posed a dilemma

for the caregiver in how to properly

provide care within the limitations of the

care receiver while maintaining a sense

of normality, dignity and possibility as

much as possible for the care receiver.

are focusing on how community CAN

provide support, not on what they can’t

provide.

To close the ‘treatment gap’ in India, Dr.

Amit Dias has piloted a project to offer

’community care’in which trained youth

from the community provide support in

assessment and care-giving of patients

with dementia. During our interview, Dr.

Dias acknowledged the scarcity of the

available resources but he also highlighted

how this project has been successful to

change perceptions about dementia,

care-giving and family responsibility. He

highlights what ‘community care’ CAN

provide and where government needs to

step in.

Similarly all the experts spoke about lack of

support from government and highlighted

how each of them is providing support

to the caregiver either in personal or

organizational capacity. For example, staff

members of ARDSI Kolkata acknowledges

that people living in the lower strata of the

society cannot access their services but

they also highlighted that they are the only

one providing dedicated day-care solution

to dementia patients in a city like Kolkata.

Swapna searches online and ofine to

provide latest and relevant information on

her website; rather than highlighting what is

not there, she painstakingly documents all

the available resources.

organizations try to mould the counseling

as much as possible to address personal

needs of the participants.

Our participants acknowledged that only

a fraction of eligible caregivers avail the

chance to participate but then they try

to be as effective as possible. They work

under nancial constraints and impendingrisk of privatization but they go beyond

their capacity to make the ‘peer support’

available to the participants, often by

sharing personal experiences.

PRESENT THEME CATEGORY 2: MAKING THE

BEST OF STAYING AT HOME AND FINDING A

WAY OUTSIDE

EXISTING THEME FROM INTEL GLOBAL

AGING EXPERIENCE PROJECT : Aging in

place means more than staying at home.

“The ability to take care of one’s own

home maintenance or gardening, to buy

groceries and prepare meals, to move

about the neighborhood or town—all

of these factors can seriously impact an

aging person’s ability to live a desired life.

Technology can play a major role here—

for instance, by helping communities to

identify and enable trusted providers of

home services, to enable mobility, andprovide increased peace of mind, both

within and outside the home.” (Intel, 2007)

CARING FOR THE CARERS: We found

that the provision of support for the daily

activities above was being explored

by some of the caregiver support

networks we interviewed. Caregiving

for caregivers to entrust activities such

as feeding and providing medication

to others. Providing support for time-

consuming but relatively impersonal

activities such as groceries and

maintenance seem to fall within the

caregivers’ frame of reference of

what is acceptable to receive help

for, so that they may be able to spend

their expertise and time on the more

personal tasks for which they have more

experience and insight.

EXISTING THEME FROM INTEL GLOBAL AGING

EXPERIENCE PROJECT: Healthy aging is

inextricably linked to social participation.

People of all ages aspire to have a sense

of belonging, a legitimate role in the lives

of their families and communities. Aging

adults want to continue to feel useful,productive, and engaged with family and

community, without feeling they are a

burden. (Intel, 2007)

CARING FOR THE CARERS: A focus

on the caregiving role may reduce

the caregiver’s participation in other

external roles and activities, as was

noted by many of our participants. At

the same time, there is an understanding

(and need) by the caregiver for the

care receiver to be able to participatein society, safely. During our research,

we discovered instances where peer

and community models of support

provided caregivers with both practical

and psychological relief to be able to

address and perceive their relationship

with the care receiver in new ways,

which resulted in a more positive

caregiving environment.

seeing beyond their immediate responsibil-

ity and perhaps stop having dreams about

the future altogether In Finland the care

family caregivers cannot escape from the

bulk of their other caregiving duties. Mrs.

Maulik shares the situation of an elderlyEMERGING THEME FROM “WHO CARES FOR



p. 90

EMERGING THEME FROM “WHO CARES FOR

THE CARERS” 2011 STUDY : Coping is about

day-to-day “SURVIVAL”; care-givers adopt

“whatever works”.

Susan Folkman and Richard Lazarus has

dened Coping in psychological terms

as ‘constantly changing cognitive and

behavioral efforts to manage specic ex-

ternal and/or internal demands that are

appraised as taxing’. (E. M. Cummings et

al, Life-span Developmental Psychology

(1991) p. 92). Furthermore, the term coping

generally refers to reactive coping, i.e., the

coping response follows the stressor. Cop-

ing is thus expending conscious effort to

solve personal and interpersonal problems,

and seeking to master, minimize or toler -

ate stress or conict. Coping responses are

partly controlled by personality (habitualtraits), but also partly by the social context,

particularly the nature of the stressful envi-

ronment.(Wikipedia, 2011).

Our research showed that some caregiv-

ers nd themselves virtually homebound

and consumed by care-giving tasks. When

care-giving is prolonged over months and

years as in the cases of patients with de-

mentia or permanent disability, the self-

sacrice particularly becomes harmful.

Caregivers, both in Finland and India rarely

think of their personal wellbeing. As Anne

narrated a lot of caregivers join the Rehab

course only when they are stretched to the

limits like a rubber band. In a lot of cases

care-giving becomes a point of day-to-

day survival; a number of caregivers stop

the future altogether. In Finland the care-

givers are suggested to see beyond the

grind , prioritize and nd joy in life’s simple

moments.

In India, most of the caregivers concen-

trate only in the job of care-giving and they

learn to do it by trial and error and without

any guidance, a lot of times the caregiverscompletely burn out. Added to this is the

societal expectations and lack of aware-

ness, the caregivers nd no acknowledge-

ment from the family or a space to share

their burden.

The care-givers cope by using available

resources effectively in both the countries.

In Finland , Minna uses a staircase, a cup-

board and a particular soap as her cop-

ing tools; other caregivers share with close

relatives living far away and still others writepoems .

In India, where peer support is rare, care-

givers cope by exercising, listening to mu-

sic, writing, blogging and games. Mrs.

Nilanjana Maulik says that she insists that

care-givers carry on with something which

they enjoy, like cooking. Interestingly, most

Indian caregivers are keener to know how

to cope with the different activities related

to care-giving than to focus on their own

well-being.

In India, due to relatively easy availability of

household helps, house-maintenance and

responsibilities like cooking and cleaning

can be shared, yet, due to unavailability

of respite care and trained personnel, most

Maulik, shares the situation of an elderly

caregiver, who could not get an eye op-

erationas there was no one or insitition that

could share her caregiving responsibility for

the 10 days required for surgery and recu-

peration in Kolkata.

PRESENT THEME CATEGORY 3: PRIVATE AND

PUBLIC PERCEPTIONS OF CAREGIVING

EXISTING THEME FROM INTEL GLOBAL AG-

ING EXPERIENCE PROJECT: “Health is not

an objective quality; it’s dened collabora-

tively and culturally.

Health is dened through interactions and

negotiations among various people, in-

cluding informal caregivers, family mem-

bers, hired in-home and medical care

givers, and the elderly themselves—all ofwhom may differ in their assessments of the

elders’ health. Cultural, social and political

systems also shape attitudes and behaviors

related to health.” (Intel, 2007)

CARING FOR THE CARERS: This was

strongly corroborated by our research.

In India, caregivers felt “assigned” their

roles through cultural or family hierar-

chies and were also unable to express

their loved experience to others due

to cultural stigmas and lack of aware-ness around caregiving. Within Finland,

although caregiving is ofcially sup-

ported by the state and is enjoying a

relatively positive “brand”, existing per-

ceptions stigmatizing the use of social

benets acts as a barrier to caregivers

in using such services, even if available.

THE CARERS” 2011 STUDY: Care-giving is

not bound by one universal denition (even

within a country); it is redened personally

and culturally.

Caring is universally shared; people of all

ages understand what it feels like to care

for someone or to be cared for. As Malla,

one of our participants from Finland told us

succinctly and unambiguously, “It is not so

difcult to understand, to understand each

other and this experience. We all take care

of our loved ones.” (110620_FN_FIN_HP02_

HP_v1_c1.PDF, 10B, FN,), AD.

However, we saw many differences in how

participants dene care-giving. In a coun-

try like Finland, which has a long-standing

history of supporting care-givers, Anne nar-

rates that the nature & status of care-giving

is too broad to dene in Finland. She de-

scribes that, “it doesn’t have to be a rela-

tive... Either in their own home or then at

the home of the one they’re taking care

of... Someone who has the overall responsi-

bility of the caring. It’s a really broad term.

Caregiver can be the one who visits daily

to take care of some errands, so that the

client copes in their home…”.(110620_TR_

FIN_AK02_AK_v1_c1.pdf, 5B, TR,).

In our research, we found that notion of

care-giving varied greatly even within Fin-

land A number of caregivers do not rec

bility, cultural perceptions, nancial fac-

tors and societal expectations. We have

come across both bitterness about societal

state of their own health through active

daily monitoring, but to do so in a way that

aligns with their preferred ways of living ”

We found that caregiving may be so life-

transformational that many caregivers

mark progress less by watershed events



p. 91

land. A number of caregivers do not rec-

ognize their regular responsibilities as care-

giving; Anne told us, “Especially amongst

the elderly, there’s a lot of this kind of

caring and nurturing and they don’t talk

about caregiving. So a lot of care-giving

gets done without calling it care-giving”.

110620_TR_FIN_AK02_AK_v1_c1.pdf, 6U, Tr).

Unlike India, the reason is not only lack of

awareness, stigma and acceptance but

lack of clarity from the state about what

care-giving entails and what support (-

nancial or otherwise) they are eligible for.

Finnish caregivers also nd difculty in navi-

gating the bureaucracy. As per the Finnish

law, the state is responsible for care-giving

to individuals and caregivers at least legally

have a choice, but they still provide infor-

mal care-giving to loved ones and cultur-ally do not seek help before they reach a

breaking point.

In India, there is no legal denition or policy

regarding care-giving, although historically

academicians are working in the domain

for a long time. The traditional norms and

values of the Indian society laid stress on

showing respect and providing care for the

aged and ill. Traditionally the care-giving

responsibilities are dictated by blood and

gender hierarchy within the family and

care-givers remain hidden or invisible.

In our research, we found care-givers across

generations and gender are redening the

‘care-giving’ role as per their own choices.

Care-giving is dened through interactions

and negotiations between lial responsi-

come across both bitterness about societal

expectations and willingness from our par-

ticipants to go beyond the dictates of the

society and participate in care-giving.

Devi, a 20 year old engineering student

affectionately shares the responsibilities of

looking after her grandfather along with

her father and does not consider it as a re-

sponsibility but as a reection of “love for

my granddad”. On the other hand, Dr. Pra-

sun Dey narrates that he provided care to

his father for around 18 years out of ‘soci-

etal duty’ not out of affection and “care-

giving is a very very stressful burden”. Oth-

ers, like Brigadier Bhattacharya redened

care-giving to his wife of 54 years as the

‘mission’ of his life, while Professor Chakra-

vorty shared how he is a tertiary caregiver

to his son’s girlfriend’s father and sings famil-iar songs to the care-receiver .

PRESENT THEME CATEGORY 4: CHANGE

AND FAMILIARITY

Existing Theme from Intel Global Aging Ex-

perience Project: “People mark the pro-

gression of aging by watershed events

such as falls, change of residence, or loss

of a loved one.

Monitoring and early intervention are

useful, but people often are in a state of

healthy denial about aging and thus may

not embrace such solutions. Our technolo-

gies must enable people to understand the

aligns with their preferred ways of living.

(Intel, 2007)

CARING FOR THE CARERS: Interest-

ingly, our participants helped us un-

derstand that caregiving may have a

low awareness level simply because it

is both poorly dened and understood

by society and caregivers themselves.

We learned that acknowledgment

and acceptance of the caregiving role

, while crucial, is often gradual. Our

participants told us, “Most caregivers

don’t realize they are in a caregiving

role.” While some caregivers may ex-

perience a watershed event, such as

a stroke, in the onset of the caregiving

role, for others – especially those deal-

ing with dementia – the understanding

of the need for caregiving is often ob-scured as there is a gradual onset of the

disease. While caregivers, in their long

term outlook, may not always seem to

mark the progression of heir experience

trough watershed events – often they

are focused on he everyday cycle of

coping – our service design map does

recognize that “people often are in a

state of healthy denial about aging and

thus may not embrace such solutions”

and so presents the different stages of

acceptance of the caregiving role –

and thereby acceptance of different

forms of help.

EMERGING THEME FROM “WHO CARES

FOR THE CARERS” 2011 STUDY: Familiarity

is crucial for effective caregiving.


than by the ability to maintain a semblance

of stability and continuity. One of the most

valuable opportunities for doing so was by

maintaining the consistency and familiarity

of the home environment.

Our research shows that people want to

live in their familiar surroundings. Even care-

receivers do not accept change of place

easily, even if it adds to their comfort. Ra-

vi’s father did not like to go and stay at his

daughter Hema’s house, although she tried

to provide all the amenities for his care.

Ravi says he is only comfortable in his own

house and “in his own chair”.

As Devashri mentioned a lot of elderly peo-

ple in India are choosing to stay in their fa-

miliar places rather than move in with their adult children as was the traditional norm

earlier. James’ mother chose to stay at her

own apartment instead of moving in with

her sons and she was provided care with

the help of two attendants and remote co-

ordination among the brothers.

The space, interior and décor of the daycare centre of AR-

DSI, Kolkata evokes sense of familiarity through uses of reg-

ular furniture decorative items photographs books and

DESIGN FOR THE PRESENT: TECHNOLOGICALIMPLICATIONS

• Smart homes with a range of built-in sensors (e.g.,

temperature, pressure, fall detector) that monitor an

individual’s daily functioning and provide prompts



p. 92

ular furniture, decorative items photographs, books and

toys. They create a comfortable home environment rather

than creating a look of a medical facility, for example they

use hand –embroidered colourful cushions which create a

cozy home environment. As they cater to mostly Bengali

clients, they have a lot of books as found in any traditional

Bengali household.

In case of dementia, patients tend to regress back to their

childhood memories. For care-receivers of dementia pa-

tients, familiarity with the past of the patient or childhood

memories becomes crucial; otherwise they become un-

able to respond to the care-receiver in their ‘memory Jour-

neys’. Brig. Bhattacharya argues that he could respond

to the different stages of care-giving of his wife as he was

aware of her childhood and adolescent memories and

respond accordingly. Swapna could respond to her moth-

er’s ‘memory journeys’ as she was aware of her past. She

also acknowledges that familiarity in the day-to-day rou-

tine is essential for comfort of the patient with dementia;any change in that may cause discomfort to them.

In Finland, during our research, we found out that patients

with dementia undertake memory journeys especially

when they were unable to travel anymore. They remem-

ber not only visuals but sensory details like smell, sound

and tactile sensations from their childhood. When Minna’s

mother moved in to stay with her, Minna had decorated

her home with her mother’s items and her favourite paint-

ings, to create a sense of familiarity.

Technology is very uid and its development is shaped by

many external factors, especially in regards to assistive and

multimedia technologies. The co-evolution of technology

as per the demands of the care-giving situation needs to be

structured by research frameworks that focus on cultural,

political, economic social and psychological inuences

of that technology in addition to its use, infrastructures,

standards, and development trends.

Technology can be used:

• To provide the care-givers with an interactive

context-aware device to provide with information

as per the changing requirements of care-giving.

• To provide a secure network of support-advisers or

listeners through touch, voice sensitive devices (

E.g. if a care-receiver falls and the caregiver is usingboth the hands to support he or she will not be able

to activate/operate the device with ngers).

• As mentioned by Dr. Indrani Chakravorty from

India, domiciliary services like cooking, cleaning,

home maintenance are becoming an increasingly

important area to provide support to caregivers,

especially elderly caregivers who live alone with the

care-receivers. Technology can play a major role

in augmenting these routine works and help care-

givers identify trusted service providers’. The key is to

provide assistance in ways that the caregivers wantwithout being obtrusive.

• Biosensors that provide continuous, real-time

monitoring of vital signs and other physiological

functions combined with motion detectors can be

used to transmit digital reports to the caregivers and

alert them about the need of the patients.

individual s daily functioning and provide prompts

for task completion as needed may be used as

memory aids as well as safety measures, especially

for patients with a tendency to wander off.

• Intelligent Assistive Technologies that sense and

respond to user needs are adaptable to changing

situations and compensate either for physical or

cognitive decits may be used for understandingthe needs of the patients when they cannot express

the same in words.

• Smart garments or textiles can be used as sensors to

do real-time monitoring outside home to understand

the condition and need of the patients.

• Technology –based simple games may help to

keep the care-receiver engaged and caregiver

entertained.

• In her book, Alone Together Sherry Turkle describes

how ‘sociable robots’ inspired the elderly residentsof institutions to talk and how “technology has

become the architect of …. Intimacies”. Similar

robots may be used to inspire sharing by both

patients and caregivers.

THEVII

CONCLUSIONS



p. 93

THEFUTURE

CONCLUSIONS: DESIGN FOR THE FUTURE

A major future umbrella trend, which stands out from our research, is urbanization and its’ various effects on caregiving in In-

dia. Wall Street Journal released recently a statement from India’s Census Commissioner, saying that for the rst time India had

added more people to cities than to its rural areas. According to 2011 census, 31.16 % of Indian population is urbanized, which

is 3.35 % more than a decade ago. (Lahiri, 2011). In comparison, the urbanization rate was 85 % in Finland and in 80 % in UK in

2010 (CIA, 2011).

India has also added almost 2,800 towns during the last decade (dened either as places that have a municipal administration

of some sort, or as places that have a population of at least 5,000, where the main occupation for adult males is not farming,

and where the minimum population density is 400 people per square kilometer) (Lahiri, 2011).

In terms of caregiving, urbanization opens up interesting future design intervention spaces in terms of:

1. Flexible safety and co-caring scenarios

2. Innovative familiarity

3. Distance and Distraction for Self-Care

4. Navigating bureaucracy swamps

5. Communities in transition.

Lets look at these ve trends more closely...

FUTURE THEME 1: FLEXIBLE SAFETYAND CO-CARING SCENARIOS

constant ow of well-meaning, but many

times inappropriate advice from both kin

and kith. She shares her frustration towardsIn some cases, the future urban caregiv-

i ht l d t l d t t i

patients tend to regress back to their child-

hood habits. For example in India, we heard

about patients who, as their dementia pro-



p. 94

Urbanized apartment blocks create both

possibilities and threats for caregiving and

especially for caregiver coping. One of our

interviewees described us the experience

of living in a densely populated Indian

neighbourhood in Calcutta:

“A lot of apartment blocks together,

(laughs) so people living very closely to-

gether, and guring out exactly what’s

happening. I think it also had a fair number

of women who lived at home, and sort of,

therefore, sort of, the community was very

aware what neighbors were doing and so

on – there was a lot of interaction. Which

meant that you had to be careful of neigh-

borhood aunts, or if dating someone, see-

ing somebody, that all came into it. Lots of

people keeping their watch over you – not

to make it sound frightening, but it was just

a close community.” (110712_TR_IN_HP05_

HP_V1_C1.pdf, 11, transcript, 00:16:17)

According to our research, a majority of

caregiver coping is related to the safety of

the care-receiver and the fact that they

are not able to share the caregiving bur-

den with anyone. In future India’s urban

habitat, could the increased neighbour in-teraction and “neighbourhood aunts” be

used as a resource in co-caring?

Or will there be a lack of privacy and sensi-

tivity outside the individual family unit?

Another interviewee, Swapna, describes

how in India caregivers are also exposed to

and kith. She shares her frustration towards

strangers’ and distant acquaintances’ ad-

vice and admonitions in one of her blogs

“When everyone is an expert”. Swapna

also shares a personal tool/coping strategy

she has developed to evaluate the validity

of the advices:

“Here are the criteria I evolved to handle

this unsolicited ow from people I had not

asked for help, and who barely knew me:

• Are the advisers experts in the area

they are advising on (medical profession-

als, experts in caregiving, in nutrition, exer-

cise, rehabilitation)?

• If they are not experts, do they

even know what my mother suffers from, or

the full list of what I am doing and why?

• If they are not experts, do they

have a stake in my mother’s welfare, and

would they be willing to help implement

what they are suggesting?

• If they are not experts, and if I fall ill

thanks to the workload they are proposing,

will they take over caring for my mother in

the meanwhile, or look after me when I fall

ill?

• If they are not experts, have theyexperienced a parallel situation, and did

they do themselves what they are propos-

ing I should do, and did they remain sane

while doing it?”

(100119_IN_HP03_Blog_EveryoneisExpert_

HP_V1_C1.pdf, 2Up, Blog)

ers might also need tools and strategies

for evaluating and ltering the advice they

receive due to the increased interaction.

Swapna has created her 5-step model as a

personal coping tool, but the need behind

the tool will touch even more of her peers

in the future.

>> TECH APPLICATION IDEAS

• Technology based reporting tool

for neighbourhood co-carers. Especially

in the case of dementia care, caregivers

might benet extra eyes in their neighbour -

hood whenever they have to leave home.

Has the patient exit the building? Has the

patient let someone in the apartment? Is

there something extraordinary going on in

the neighbourhood that might trouble thepatient?

• Co-carer tracking tool. Especially

in the case of gendered caregiving, people

like Devi who couldn’t help her grandfather

in the bathroom, might nd co-carer track -

ing tool comforting. It would help them to

track trusted male/female co-carers from

the neighbourhood to help them in a case

of emergency.

FUTURE THEME 2: INNOVATIVEFAMILIARITY

Another emerging trend relating to urban

caregiving in India, is the idea of familiar-

ity when designing both items and spaces.

Especially in the case of dementia care,

about patients who, as their dementia pro

gressed, couldn’t use Western style toilets

anymore, but preferred the Eastern/Indian

ones, which they used as a child. In terms of

design and development this means that

future designers should understand the

lived experience and reality of rural India.

Familiarity is also used for care-receiver comfort in cases of co-residences. In Fin-

land our participant Minna had decorated

her home with her mothers items and her

favourite paintings, to create a feeling of

home and familiarity, even though their

personal preferences differed a lot. We

have also heard participants saying that

they couldn’t have taken care of their

loved one without spending their whole life

with them.

The shift from rural to urban society cre-ates barriers between generations – chil-

dren and grandchildren taking care of

their elderly relatives might not know the

circumstances they spent their childhood

in. To further both caregiver and care-re-

ceiver well-being they might benet from

tools which help in creating understanding

about the familiarity.


• Memory journeys

application. Application to

initiate caregiver – care-receiver

communication on care-receiver

childhood. Tool to create understanding,

interaction and aid the caregiving as

dementia progresses.

FUTURE THEME 3: DISTANCE ANDDISTRACTION FOR SELF-CARE

FUTURE THEME 4: NAVIGATING BU-REAUCRACY SWAMPS

bureaucracies. First hand information from

peers to peers.

have access to.

Cultural transitions in both countries cast an

i t ti d i h ll if d i i



DISTRACTION FOR SELF-CARE

During our research, we heard both in Fin-

land and India, how caregivers use physi-

cal space and barriers to create occasion-

al distance to the care-receiver. Also the

concept of Finnish caregiver rehabilitation

is based on detaching the caregiver from

his/her home environment, and creating

distance to start reecting and evaluating

the situation.

As cities become more densely populated

and the personal space diminishes care-

givers face the need of creating distance

another than physical way. Can physical

distance be replaced by mental distance?

Can the Finnish rehabilitation concept be

transformed as “to-go” version?

Also, it’s not only caregivers who need the

distance. Already some Indian care-receiv-

ers choose to live on their own instead of

moving in to the caregivers house, due to

familiarity and being used to having their

own space. This indicates the growing

need of distant care solutions in the future.


• Detaching reminder. An applica-

tion that allows the caregiver to record

and track his/her stress/frustration level and

suggests a mental brake when the tension

gets too high (activates a playlist, uploads

a favourite tv-series, etc).

REAUCRACY SWAMPS

Navigating the exhausting bureaucracy

swamp is already the reality of Finnish care-

giving. India however is in a nascent stage

in terms of caregiving, as one of our expert

interviewees described, where the next

necessary step would be governmental

participation. Does “India still have hope”

as one of our Finnish participant stated or

does the governmental intervention in a

country of 1.21 billion people automatically

mean bureaucracy? What kind of support

do the future Indian caregivers need when

balancing between too much and too little

information about governmental policies?

For Finnish caregivers the current solution

seems to be unofcial information – many

times provided by their peers. According to

the Finnish support organisations caregiv-

ers value even the inaccurate information

provided by their peers since, as one of our

participants put it “peer support is the only

kind of information you fully understand”.

Caregivers also struggle with the formal

language used by the governmental orga-

nizations.

The already current bureaucracy issue

opens a space for design interventions – and, according to our research, that space

is about to be even bigger in the future.


• Bureaucracy Butler. The Wikipedia

of how to navigate the local caregiving

FUTURE THEME 5: COMMUNITIES INTRANSITION

The biggest difference between the two

countries in terms of caregiver self-care

is the individualistic vs. collectivistic ap-proach. Currently Finland focuses more

on enhancing caregiver’s self-knowledge

and taking care of their individual needs;

and in India the emphasis is on caregiver

– care receiver relationship. During our re-

search we heard several indications about

how the Indian culture is in transition and

adapting Western, more individual inu-

ences. Cultural hierarchies, authorities and

expectations still sit tight in India, but indi-

viduals are already challenging the cultural

norms (e.g. son questioning father’s author-

ity, paid staff eating with the family).

In Finland on the other hand, we noticed

generational differences in terms of inter-

acting with peer support groups. Whereas

elderly caregivers seemed to appreciate

face-too-face peer interactions and were

encouraged to share their caregiving ex-

periences by their peers reactions and

facial expressions, the younger caregivers

might choose not to share their caregiv-ing situations in peer interactions at all. For

example a group of mothers with disabled

children never spoke about their children in

peer support meetings. For many younger

caregivers, the primary source of caregiv-

ing related information was the Internet,

which elderly caregivers don’t many times

interesting design challenge, if designing

for global markets. When (if ever) will Indian

market be receptive for more individualistic

self-care approaches? How long will there

be a need for design interventions relat-

ing to the burdens of cultural hierarchies?

Should the design solutions in Western so-

cieties already be aimed for the needs oftech savvy generation?


• Overseas online peer support

groups. As our study suggest, the younger

generation of caregivers don’t necessar-

ily turn to their peers just in need of care-

giving related information. They might in

fact choose to talk about everything but

caregiving with their equals, and are morelikely to nd information online. One of our

interviewees in Finland suggested (Merja

Purhonen, AK06) that the younger, migrat-

ed future caregivers might benet from on-

line peer support groups where they would

be able to share thoughts in their rst lan-

guage.



p. 96

DESIGNVII

CONCLUSIONS



p. 97

DESIGNPRINCIPLES

DESIGN PRINCIPLES FOR CAREGIVING

In the earlier chapters, we explored both process and analysis, as well as some concrete design scenarios for implementation. In this nal chapter, we’d like to further explore

design implications for technology with a general view toward some emergent design principles from our research that can help drive the development of future design

concepts to support caregivers in India, Finland and other countries.

Bell, G. & Kaye, J. (2002) wrote, “As researchers working at sites of technology production and innovation—Intel Corporation and MIT’s Media Lab—we nd ourselves

increasingly preoccupied with the question of how one designs, not for efciency, but for experience, affect, and desire. The challenge is to make sense of people’s daily practices so that these practices can meaningfully inform design and innovation.” (p. 3).

This emphasis on “value over efciency,” “understanding the use of objects in context,” and “context as cultural and dynamic” is meaningful and relevant to the realm of

designing to support caregiving. Whereas many caregiving tasks are time-consuming, the prioritized outcome of design is not necessarily to make these tasks more efcient;

rather it is to understand how and why caregivers may actually choose to perform these tasks and its meaning in the development of both their own identity as well as the

renewal and sustenance of their relationship with the care receiver. Likewise, the use of objects in context is important especially for dementia caregivers, for whom even

a minor change in routine, setting or object may substantially disrupt the care receiver’s environment. Finally, ultimately understand the dynamic cultural context can help

understand where individual actions and reactions can be supported or hindered by outside inuences.

For example, even though Finland has an established system of socialized health care and support for caregivers, the bureaucracy can intimidate and dissuade caregivers

from accessing the resources available to them, either because of perceived burden or actual burden, such as repeatedly being assessed when seeking support from

different organizations for the same need. The understanding of how culture is shifting is also important in India. Whereas cultural and gender hierarchies continue to affect

caregiving, it is important to understand how cultural norms are changing to allow for non-family members a greater share in caregiving, or how the lack of research

regarding family caregiving may impact the understanding of what will occur as India projectedly moves from a largely rural to a largely urban population in 40 years.

As mentioned earlier, technology is not imagined to be a magic bullet for the needs of caregivers. Instead, as Intel’s Health Technology Design Principles outline below, it

is essential to create contextually-sensitive products that don’t foster a dependence on technology, but rather augment and complement existing coping strategies. The

following design principles complement Intel’s existing Health Technology Design Principles (Intel (2007) Health Technology Design and Innovation at Intel, retrieved from

www.intel.com) [see sidebar].

INTEL’S Health Technology Design Principles



DESIGN PRINCIPLES FOR CARERS

1. Familiar novelty

2. Distributed care

3. Healthy distraction

4. Belonging moment

5. Powerful silence

6. Managing watersheds

7. Imagined space

1. FAMILIAR NOVELTY: Introduce new

technology devices using familiar forms

that provide a sense of continuity to former

traditions and support quality of life activities

with minimal disruption and maximum

simplicity.

Caregivers often need to carefully control the

care enviornment for stability of care. Routines

and structure matter. In many cases, less is

more. For example, while many Alzheimers

patients may lose the memory of how to read

a clock or use the television, the ability to recall

how to turn on a light switch may remain.

2. DISTRIBUTED CARE: It’s intimate, but it’s

not personal.

Help caregivers understand who, what and

how to ask for help to make it less intimidating to

let go and reach out. Caregivers are extremely

protective of their caregiving role

and despite desiring help, are often reluctant

or unable to ask for support even from family

members. During our study, we found that this

was a barrier not only to receiving help but also

to offering it. We also learned that caregivers

can come from surprising places and that

outside intervention, handled sensitively,

provided enough distance for a change in

shared caregiving to occur. Technologies that

can help caregivers discover and accept this

surprising, often hidden network of diverse

peripheral carers is needed, as well as being

able to help caregivers tease out the nuances

of the types support activities others would be

willing and successful at helping with to address

caregivers’ concerns with sharing their duties.

3. HEALTHY DISTRACTION: Help caregiversunderstand it’s not always about what they

need to do; balanced caregiving also includes

understanding what doesn’t need care.

Caregiving often requires constant attention

and repetitive tasks, that can be taxing if a

caregiver is constantly worrying about too

many small details without the adequate ability

to take a step back. A device to help caregivers

give care could be equally successful helping

to distract them from their concerns (and stress)

as much as addressing them. Whether it is amonitor that notes stress levels and suggests a

distracting activity; a memory book that recalls

positive memories versus future concerns; or

simply music, distraction is not only a tool that

caregivers can use with care receivers, but also

to help provide self-care for themselves.

INTEL’S Health Technology Design Principles

INTEL (2007) HEALTH TECHNOLOGY DESIGN AND INNOVATION AT INTEL,

RETRIEVED FROM WWW.INTEL.COM

Intel’s health technology designers distill design principles from the nd -

ings of ethnographic research into how people interact with their ex-

isting technology devices and environment. These principles drive the

development of design concepts. Following are general principles for health technologies that support independent living:

1. CREATE NON-INTRUSIVE TECHNOLOGY. Intel’s research found that technolo-

gies such as alarms and security cameras are quickly abandoned by users

because they disrupt people’s normal routines and make them feel uncom-

fortable at home.

2. PROVIDE ENOUGH (BUT NOT TOO MUCH) SUPPORT. Help users to accomplish

tasks without making them reliant on technology for things they could do

themselves..

3. BUILD ON EXISTING METAPHORS OF HOW THINGS WORK. People are more

likely to use new technology if it comes in the form of a familiar device, suchas a remote control.

4. KEEP IT SIMPLE. Use one-mode/one function devices when possible (e.g., a

wall-mounted CD player that plays when a user pulls a string).

5. FOSTER TRUST. A device with a well known brand or with independent, third

party certication will have a greater chance of being adopted.

6. ADAPT TO CHANGING NEEDS. As people age and change, so do their

needs (in the case of Alzheimer’s disease, needs can change weekly or

even daily). Technology should adjust in response.

7. DON’T STIGMATIZE. Design devices that anyone, not just an older or disabled

person, might use. (For instance, Intel designers are experimenting with a pill

box and reminder system disguised as jewelry.)

8. FACILITATE, DON’T REPLACE, social connections with technology.

9. FOCUS ON CONCEPTS THAT FOSTER CONNECTION, such as the presence

lamp and the memory bracelet described in this article, rather than tech-

nology that replaces social interaction (e.g., virtual worlds).

4. BELONGING MOMENT: Provide

ways to capture and focus on the present

moment.

6. MANAGING WATERSHEDS: Provide

a way to share hidden watershed moments

externally.



p. 99

While caregiving is often a years-long,

sometimes decades long, involvement that

includes many ups and downs, respite and

recovery doesn’t need to take that long

of a view. We found that small instances

of distraction, enjoyment and reection

were useful as a personal “recharge” thatcould t well within the daily temporal and

mental capacity of caregivers. Likewise,

we found that caregivers are conscious

that care receivers also desire a “need

to be needed.” We found the ability for

caregivers and care receivers to nd a

space for social inclusion, even for a small

moment, was a memorable and uplifting

event that could have effects on self-

esteem.

5. POWERFUL SILENCE: Focus on

technology that uses and enhances non-

verbal communication.

Communication changes during a care

relationship. We noticed silence, in different

forms, becomes more present within the

caregiving environment – variably because

the care receiver can not respond, the

caregiver is unable or unwilling to share,

the caregiving needs creates an inability

to leave the home to engage in social

activities, etc. Designing for silence or to

reinforce and emphasize other non-verbal

forms of communication (such as touch or

play) can increase patience, connection,

and understanding.

We found that caregiving may be so life-

transformational that many caregivers


than by the ability to maintain a semblance

of stability and continuity. One of the most

valuable opportunities for doing so was by

maintaining the consistency and familiarityof the home environment. “Watershed”

moments may have a different proportion in

caregiving. We understood that feedback

regarding even these minute, mundane

efforts could be powerful in providing a

sense of progress and accomplishment for

caregivers.

7. IMAGINED SPACE: Provide a sense

of distance, even if only mentally.

Physical distance and barriers were

employed by caregivers in India and

Finland for coping (stairs to limit care

receiver access to parts of the house,

separate apartments to provide a secure

and quiet work environment). Equally

needed was mental distance. Technology

that can help provide caregivers mental

distance from the immediate and constant

demands of caregiving can also provide

caregivers with the objectivity to better

perceive new opportunities for both their

care receiver and themselves.



“

...”

Dr. David Prendergast and

the members o RIL team

Dr. Catriona Macaulay Kate Saunderson

Hothouse 2011 communi-

ty, including our esteemed

clients at Swisscom, Fjord,Brightsolid, Intel USA and

Intel EIRE

MSc Design Ethnography

class o 2011

V I I I. T HA N K S

For some of you, weTHANKYOU



y ,

understand it took

more than half a centuryto share your stories;

thank youfor allowing us to listen.

T th



p. 102

Together

THANK YOU

All our participants, who shared their lives with us, and our own families.

Dr. David Prendergast and the members of TRIL team

Dr. Catriona Macaulay

Hazel WhiteMike Press

Tom Inns

Fraser Bruce

Dr. Annalu Waller

Kate Saunderson

Hothouse 2011 community, including our esteemed clients at Swisscom, Fjord, Brightsolid,

Intel USA and Intel EIRE

MSc Design Ethnography class of 2011

University of Dundee, Scotland

Omaishoitajat ja Läheiset –Liitto ry

Tampereen Seudun Omaishoitajat ry

Lomayhtymä ry

Spa Hotel & Cottages Summassaari

Kela – The Social Insurance Institution of Finland

Sound engineer Robin Sutherland

Staff -members and day-care patients of ARDSI Kolkata

Staff -members and members of Elderly Day-Care Centre of CMIG Kolkata

MORE INFORMATION

MSc Design Ethnography (http://www2.idl.dundee.ac.uk/desethno/)

Intel Digital Health Group (www.intel.com/healthcare)

Intel Health Research and Innovation (www.intel.com/healthcare/hri)

Center for Aging Services Technologies (CAST) (www.agingtech.org)

Technology Research for Independent Living (TRIL) Centre (www.trilcentre.org)

CONTACTINFO



p. 103

CONTACT/TEAM BIOS

DAVID PRENDERGAST, PHD, CLIENT –INTEL HEALTH RESEARCH AND INNOVATION, IRELAND

David is a Social Anthropologist in the Digital Health Group at Intel and a Principal

Investigator of the Social Connection Strand of the Technology Research for Independent

Living (TRIL) Centre. His research focuses on later-life course transitions, and he has

authored a number of books and articles on aging and health. David utilises ethnographic

research to co-design and iteratively develop culturally appropriate, independent-living

technologies for older people.

Email: [email protected]

ANAMIKA DEBNATH, FIELD LEAD - INDIA

Anamika believes that ‘Fashion’ is a mirror of the time we live in and we are constantly

redening our identities through our choice of garments and accessories. Today’s

globalized world provides more technology-based options than ever before to anyoneand everyone to tell their stories through clothes, the “second skin”. Anamika is currently

an Associate Professor in ‘Fashion Design’ at National Institute of Fashion Technology

(NIFT), India. She has worked with several business organizations as a design professional

prior to becoming a full time academician and coordinated many ‘social developmental

projects’ on behalf of Government of India.


HAN PHAM, TEAM LEAD

Einstein said, “”Information is not knowledge.” I agree. It’s about the knack of context:

the right people at the right time “getting it” so a good idea becomes an actionable

one. As an experience researcher, innovation strategist and speaker, I do my best work

at crossroads: design, business, social change, culture. My work has been featured on

the radio, in magazines, and in the AIGA Design Library in New York. I have been anadvising curator for several California arts organizations and have served on the boards

of Young Women Social Entrepreneurs and Nest-SF, two organizations connecting socially-

conscious inspiration to business.


Twitter: http://twitter.com/designswinger

ANNA KULONEN, FIELD LEAD - FINLAND

Anna’s recipe? Dreaming, being passionate and having fun. Currently Anna is an owner

and service designer of the company Kolmas Persoona, which specializes in service

development and service design. She’s also an owner and board member of

the company Sivupersoona – one of Finland’s biggest providers of sign language

interpreting services. Anna is constantly searching for new experiences,

expanding her knowledge and trying to create change.

Email: anna@persoona.

Linkedin: http://.linkedin.com/pub/anna-kulonen/5/98a/144



“

...”

How are carers are already doing this in India and Fin-

land, ormally and inormal-ly, in person and throughtechnology?

01d. How can digitaltechnology specialists, likeIntel, be responsive to these

emergent patterns ...

I X. A P P E N D I X

IXAPPENDIX



p. 105

WHAT IF

you wanted

more?



what did you read? Bibliography

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August 6 2011.



what did you as? OFFICIAL Question Guide

QUESTION GUIDE

00. TEAM EIRE FOCUS:

mally, in person and through technology?

What are culturally appropriate forms of

coping?

to individual carers view and/or address all

of the above?

04b. Explain the interview and study

purpose again

a. Project Goal: Ultimately, our goal



p. 109

Our study examines the experiences of

informal (family) caregivers using a com-

parative approach between India and

Finland. In doing so, we would like to un-

derstand what forms of support networks

and communities, whether formal or infor-

mal, are emerging and evolving to provide

support and nurture well-being among the

caregivers and how these coping strate-

gies may be supported, improved or aug-

mented, individually or through the com-

munity, through the culturally appropriate

use of digital technology.

Our research outcomes will be framed

within a business design, service design or

trend forecasting context.

* In the questions below, “carer” or

“caregiver” will refer to family or informal

caregivers.

01. KEY QUESTIONS – OUTCOME:

01a. Who cares for the carers – What

is the context of the caregiver’s needs for

support?

01b. How we can leverage peer sup-

port and innovative forms of community

care to provide extra support for people

who are sick or isolated?

01c. How are carers are already doing

this in India and Finland, formally and infor-

01d. How can digital technology spe-

cialists, like Intel, be responsive to these

emergent patterns of elder health, social

care and rapidly changing social scenari-

os.

02. KEY QUESTIONS – RESEARCH FOCUS:

02a. What is the nature/ontological sta-

tus of family/informal caregiving within Fin-

land and India?

02b. What is the lived experience of

being a caregiver in two very different cul-

tures (population, geography, economy,

government policy, healthcare systems,

etc).

02c. “Who cares for the carers” within

these cultures?

02d. Who is the primary caregiver? Is s/

he hidden/visible? Why and how?

02e. Who else shares the experience

of caregiving? Why? How is caregiving

shared, if shared?

02f. What coping strategies (individual,

psychological, emotional, family-, commu-

nity-based) are available? Missing? Emerg-ing?

02g. What’s good and bad about cur-

rent lived experience of carers?

02h. What do carers want to change

about their current lived experience?

02i. How do organizations as opposed

03. CONTEXTUAL QUESTIONS – GENERAL:

03a. Why do people seek/offer/accept

(peer) support?

03b. Who can offer (peer) support?

03c. Who and what is trusted, and why?

03d. What forms does (peer) support

take and why?

03e. What’s the peer-to-peer transac-

tion – what gets exchanged?

03f. What’s the role of peer support in

caregivers’ well-being?

03g. What are the misperceptions, stig-

mas, and stereotypes posing barriers of ac-

cepting/giving support?

03h. Why and how people feel com-

fortable sharing private & sensitive informa-

tion with others? What is the role of reputa-

tion, risk and trust in peer relationship?

03i. How and why does technology

aid or hinder these relationships?

04. PARTICIPANT QUESTIONS – PROTOCOL

BASICS:

Introductions - A brief, but necessary start

to every interview

04a. Introduce yourself and anyone

else on the call

is to understand caregivers and how we

can improve or augment coping strategies,

whether through technology or otherwise,

that is culturally appropriate. In understanding

how and why possible strategies could work or

not work in different countries; sometimes it’s

important to understand what you shouldn’t doas well.

b. The context of caregiving is very

important— the value of their individual

story to help understand the bigger picture

c. No “right” answers: Often, explor-

atory research can be just to understand

what questions to ask.

04c. Reassure them they can refuse to

answer questions and/or stop interview at

any time

04d. Explain what they will get after (in-

terview transcript for clarication and/or

study outcomes summary?)

04e. Reconrm permission to record;

Ensure you have a signed consent form

04f. Reconrm permission for any multi-

media and what type

04g. Before interview starts do a nal

check recording equipment is working

04h. Take notes

(or what) helps care for the carer? How

do these relationships aid and affect each

other?

05k. How do you maintain quality of

life? For the patient? Others? For yourself?

a. Who helps you maintain quality of

05t. Online: Is there an online commu-

nity for caregivers?

a. To what degree do the available



p. 110

04i. Say thank you and ask for permis-

sion to contact of need any follow up

04j. Feedback – Interviewee reec-

tions on interview (Did they learn something

during the interview? What’s on their mind

now?)

05. PARTICIPANT QUESTIONS – GENERAL

BASICS (ESPECIALLY CAREGIVERS):

Background:

05a. To better understand you, it’s use-

ful to start with your background. Can you

tell me a little bit about yourself?

05b. Can you describe your family?

05c. (If referred) How are you connect-

ed to _________ ?

05d. What does caregiving mean to

you?

05e. Caregiving experience – where

did it start?

05f. When did you begin thinking of

yourself as a caregiver? How? Why? Why

not?

CAREGIVER & CAREGIVER WELLBEING

05g. (Who is the caregiver) Is there a pri-

mary caregiver?

05h. Who else is a caregiver? E.g., Who

a. Note to researcher: This can be

other family members, other individuals,

community members or organizations or

even the individual. mitigate - the family

or communities of individuals? (india - indi-

vidual, writing, psychological)

b. Note to researcher: Psychosocialfactor is very important. Very rarely do

caregivers act purely as individuals. Need

to understand how coping strategies im-

pact each other.

05i. (Why?) How is caregiving shared?

a. What are the burdens and how

they are perceived?

b. Can you tell me of a day in your life

as a caregiver?

c. What is a “good day” for you?

d. Can you tell me about an experi-

ence or time when it was especially dif -

cult?

e. Can you share an experience

where you didn’t know what to do?

f. Can you share an experience

where you needed to ask for help (and

did)? Didn’t? Why? What happened?

g. Who did you ask for help? Whonext? Who can’t you ask for help, but want

to?

05j. (What/how). What are your cop-

ing strategies?

life?

b. What is quality of life? Are there dif-

ferent levels?

c. Why is it important?

FAMILY

05l. Tell me about how you see family?

05m. What is your family’s relationship or

role in caregiving?

05n. How is life different?

05o. What adjustments did you have to

make?

05p. Who has the biggest impact (or

has been impacted)?

COMMUNITY

05q. Is there a caregiving community?

Who is involved? Where does it exist (or

doesn’t)? Why or why not?

05r. Do they consider themselves a

part of this community? Why or why not?

How are they involved?

a. What has been its impact? How

has their life changed?

05s. Online: Have they/do they use

online resources r caregiving? What?

How? Why?

a. Do they combine online and of-

ine resources?

resources meet their needs?

b. How valid are the resources? Why/

How is it (or is it not)culturally appropriate?

05u. Sharing: What is not shared? What

is suppressed? What is suppressed that

needs to be shared? What forms does it

take?

EX-CAREGIVERS

05v. What is it like for you now after the

passing of the person for whom you gave

care? How is it for your family?

05w. How is life different?

05x. What adjustments did you have to

make?

05y. Do you still identify with being a

caregiver?

05z. Do you still take part in the caregiv-

ing community?

06. PARTICIPANT QUESTIONS – ORGANIZA-

TIONAL

give peer support?

06n. How do peer support groups usu-

ally evolve? Why?

INDIA SPECIFIC:

08a. How did you learn how to be a



p. 111

INDIVIDUALS WITHIN ORGANIZATIONS

06a. What’s your role in this organiza-

tion?

06b. Can you share how you came to

work for this organization?

06c. Dou you have any personal expe-rience about caregiving? Could you tell

me about that?

06d. How would you dene caregiv-

ing?

06e. How would you dene the con-

cept of what you/your organization does?

06f. What are the triggers, which make

caregivers come to you/your organiza-

tion? What are the typical stories behind

participation?

06g. Tell me about the structure and

content of your programs/work? Why is it

like that?

06h. What kind of issues are you trying

to address/solve?

06i. What kind of methods do you use?

06j. What are the individual objectives

like (goals for the participants)?

06k. What kind of feedback do you getfrom the participants?

06l. According to your experiences,

what’s the role of peer support in caregiv-

ers’ rehabilitation/well-being?

06m. From your organizational (medi-

cal/professional) perspective, who can

06o. Is peer support an intentional part

of your programs? If so, how do you further

it?

06p. Group meetings: What kinds of

topics caregivers typically discuss during

the group meetings? What kinds of things

do they need to share with peers?

06q. Group meetings: Do people know

each other beforehand? Do peer support

networks establish themselves during the

course/program/event? Do they keep on

existing after the course/program/event?

06r. Gives us a view of an organization-

al advocate (medical professional/expert/

etc) for caregivers: what are the everyday

challenges of caregivers which endan-

ger their well-being and the continuum ofcaregiving

06s. What are the best practices of fur-

thering caregivers well-being?

FINLAND SPECIFIC:

07a. What kinds of initiatives Finnish gov-

ernment supports?

07b. How do they support them? Howhas this changed?

07c. Why does Finnish government sup-

port these types of initiatives?

07d. What are the results like? What are

we missing?

y

caregiver?

08b. How does your culture impact

caregiving?

08c. Does culture offer any challenges

to being a caregiving?

08d. How does culture aid caregiving?

08e. Note to researcher: Examine dy-

namics of shared caregiving within the

family (and other support)

SPACE (FIELD OBSERVATIONS)

09a. How can we better understand

space, movement, impermanence, per-

manence (if you were an architect, de-

signer, dancer, what would you be drawn

toward observing and understanding)?

a. e.g 1. Medicine is usually kept hid-

den. For caregivers, they may be in view to

keep them top of mind. (social mores)

b. e.g 2. ARDSI daycare center is suit-

able for dementia patients who are likely to

wander, to fall

c. e.g 3., Certain daycare centers re-

quire some minimum level of activity from

patient. If the patient degenerates into

lack of movement, then the patient has no

option other than home care.

09b. Perceptions of place and space:

What is taken for granted as a non-care-

giver? What is taken for granted as a care -

giver?



who did you talk to? participant list

COUNTRY FOCUS : FINLAND

01. PARTICIPANT NAME: ANNE

PARTICIPANT LOCATION: Central Finland

03. PARTICIPANT NAME: LAKE GROUP

PARTICIPANT LOCATION: Saarijarvi, Finland

05. PARTICIPANT NAME: SIRPA M.

PARTICIPANT LOCATION: Finland



p. 113

PARTICIPANT ID –NAME: AK02 –Anne (Anonymized)

RESEARCH RELEVANCE:

Anne works as a course instructor for last 4 years

on caregivers’ rehabilitation courses. She’s a registered

nurse and occupational health care professional and has

working experience from both public and private sector.

She started her career in 1988 as a nurse. Anne also has

personal caregiving experience as her mother’s informal

caregiver.

Her job description includes the selection of participants

and running the rehabilitation courses with a multi disciplin-

ary team of other health care professionals – doctor, psy-

chologist, social worker, physiotherapist and dietician.

INTERACTION TYPE:

In-person interview at the her surgery/ ofce in the

holiday resort

02. PARTICIPANT NAME: MALLA

PARTICIPANT LOCATION: Helsinki, Finland

PARTICIPANT ID –NAME: HP02 – Malla Heino

RESEARCH RELEVANCE:

Malla is one of the program managers with 7 years

experience of the main support network and advocate

for Finnish caretakers and their patients – Omaishoitajat

ja Läheiset –Liitto (“Caregivers and Close Ones – Associa-

tion”). She focuses on international programs and is cur-

rently develop the online coaching course.

INTERACTION TYPE:

In-person interview at Omaishoitajat Headquar-

ters.

PARTICIPANT ID –NAME: AKHP01 –Lake Group (Anony-

mized)

RESEARCH RELEVANCE:

Caregiver remedial courses are creative support

initiatives, which aim to further caregivers health and well-

being. The participants of this remedial course are work-

ing as family caretakers on daily basis. The course is aimed

especially for the caretakers who have diseases and/or

symptoms of a possible burnout, which may jeopardize

continuing caretaking. This course was a 9-day off site re-

treat course that will continue with individual support and

training after the program.

“Lake Group” participants are all spousal caregivers over

the age of 50. In this group were 2 males and 3 females led

by a female instructor (also a trained nurse). This course was

offered by one of the largest organizations for caregiving

training in Finland; the group is an independent organiza-

tion that receives funding through the Finnish government.

INTERACTION TYPE: Group observation

04. PARTICIPANT NAME: ILKKA

PARTICIPANT LOCATION: Saarijarvi, Finland

PARTICIPANT ID –NAME: AK03 – Ilkka Raatikainen

RESEARCH RELEVANCE:

Ilkka is the manager of caregivers’ rehabilitationprogramme. Ilkka was also a member of the project group

when the concept of caregiver rehabilitation camps was

developed at the end of the 1990s.

INTERACTION TYPE:

In-person interview at Spa Hotel Summassaari.

PARTICIPANT ID –NAME: AK04 – Sirpa Määttä

RESEARCH RELEVANCE:

Sirpa was the instructor of a peer support group

conversation we had a chance to observe on June 20th

2011. She has been in her current position as a regional

manager for Omaishoitajat ja Läheiset –Liitto (“Caregiv-

ers and Close Ones – Association”) little over a year. Her

main responsibilities are organising and supporting the op-

erations of the 16 local associations and taking part to the

rehabilitation courses organised at her district.

Sirpa is a registered nurse and has also studied social and

health administration. She doesn’t have any personal ex-

perience from informal caregiving, but had her rst en -

counters with caregivers when operating as project lead in

project concentrating on developing palliative care.

INTERACTION TYPE: Follow up interview via phone.

06. PARTICIPANT NAME: SIRPA O.

PARTICIPANT LOCATION: Helsinki, Finland.

PARTICIPANT ID –NAME: AK05 – Sirpa Otava

09. PARTICIPANT NAME: LOCAL ASSOCIATION

PARTICIPANT LOCATION: Tampere, Finland

PARTICIPANT ID –NAME: AK08 – Local Association

11. PARTICIPANT NAME: LAURA

PARTICIPANT LOCATION: Tampere region, Southern Fin-

land



p. 114

RESEARCH RELEVANCE:

Sirpa is the customer service manager of the asso-

ciation organising supported holidays for caregivers. She’s

also in charge of service development and client/partner

cooperation. She offered an insight to understand the na-

ture & dynamics of a Finnish support Initiative.


07. PARTICIPANT NAME: MERJA

PARTICIPANT LOCATION: Helsinki, Finland.

PARTICIPANT ID –NAME: AK06 – Merja Purhonen

RESEARCH RELEVANCE: Interviewee is the organizational

manager and in charge of regional cooperation and the

development of Omaishoitajat ja Läheiset –Liitto (“Care-

givers and Close Ones – Association”)and a former care-giver to her disabled son.

INTERACTION TYPE: In-person interview at Omaishoitajat ja

Läheiset –Liitto’s ofce.

08. PARTICIPANT NAME: CG LEISURE GROUP

PARTICIPANT LOCATION: Tampere, Finland

PARTICIPANT ID –NAME: AK07 – CG Leisure Group

RESEARCH RELEVANCE: CG Leisure Group is a summer

leisure day organized to caregivers by the church and the

national caregivers association, Omaishoitajat ja Läheiset

-Liitto.

INTERACTION TYPE: Group observation in a camp resort.

RESEARCH RELEVANCE: Informal discussion with two

workers and one board member of the TampereenSeu-

dun Omaishoitajat Ry, which is a local branch of the

Omaishoitajat ja Läheiset –Liitto.

Participants are:

1. Orvokki Haavisto- One out of two workers at the

local branch of the Omaishoitajat ja Läheiset –Liitto: Tam-

pereen Seudun Omaishoitajat Ry. Former caregiver of her

mother diagnosed with Alzheimer’s. Mother passed away

in 2006.

2. Kati Haavisto - One out of two workers at the local

branch of the Omaishoitajat ja Läheiset –Liitto : Tampereen

Seudun Omaishoitajat Ry. Project leader in a local project,

which focused on developing and coordinationg caregiv-

ers’ peer support groups.

3. Jaana Väliaho - One of the founders, mem-ber of the board and volunteer of Tampereen Seudun

Omaishoitajat Ry. Former caregiver

INTERACTION TYPE: Informal group discussion.

10. PARTICIPANT NAME: MINNA

PARTICIPANT LOCATION: Southern Finland

PARTICIPANT ID –NAME: AK09 – Minna

RESEARCH RELEVANCE: Participant is a 51-year-old wom-

an taking care of her 84-year-old mother. Minna’s mother has been living with Minna and her husband since April,

but she’s been taking care of her errands longer than that

– about 6 years. Minna has been on a disability pension 2.5

years after working as an entrepreneur and hairdresser for

34 years.

INTERACTION TYPE: Home observation and interview

PARTICIPANT ID –NAME: AK10 – Laura

RESEARCH RELEVANCE: Participant is 38 years old full time

mom, who’s the informal caregiver of her 7-year-old dis-

abled daughter. Laura is on a disability pension because

of a long-term condition. Her family includes a husband

and another daughter aged 6. Laura used to be the of-

cial caregiver of her child, but due to her health condition

the ofcial caregiver status is now on the husband.

INTERACTION TYPE: Home observation and interview.

12. PARTICIPANT NAME: SATU

PARTICIPANT LOCATION: Central Finland

PARTICIPANT ID –NAME: AK11 – Satu

RESEARCH RELEVANCE: Satu is a 56 years old informal

caregiver of her husband. She’s currently off-duty from her

work as a social worker and project manager, to take care

and help her husband rehabilitate from a severe stroke.

The interviewee was one of the participants of the care-

givers’ rehabilitation course, which we had a chance to

observe.


COUNTRY FOCUS : INDIA

13. PARTICIPANT NAME: DR. INDRANI CHAKRAVARTY

formulating care plan for a long-term basis. She is the au-

thor of the rst Bengali Book on ‘Dementia Caregiving’.

INTERACTION TYPE: In-person interview at her residence.

17. PARTICIPANT NAME: DR. PRASUN DEY

PARTICIPANT LOCATION: Kolkata, India

PARTICIPANT ID –NAME: AD07– Dr. Prasun Dey (Anony-



p. 115


PARTICIPANT ID –NAME: AD01 – Dr. Indrani Chakravarty

RESEARCH RELEVANCE: Dr. Indrani Chakravarty has been

working in the domain of ‘Elderly & Care-giving’ for more

than two decades. She has also been part of the team

advising the government on policy issues.

She is the Chief Functionary/Secretary Designed as Director

of Calcutta Metropolitan Institute of Gerontology (CMIG),

a voluntary organization ( founded in 1988) dedicated to

taking care of elderly people. CMIG promotes research in

eld of Gerontology, imparts various types of training to the

care givers as well as senior citizens and renders services to

the downtrodden elderly.

CMIG undertakes training programs as collaborating

Agency of National Institute of Social Defence(NISD), Min-

istry of Social Justice & Empowerment, Government of In-dia. They also conduct training programmes in the area of

“Management of Dementia”.

INTERACTION TYPE: In-person interview at CMIG Day Care

centre.

14. PARTICIPANT NAME: MRS. NILANJANA MAULIK


PARTICIPANT ID –NAME: AD02 – Mrs. Nilanjana Maulik

RESEARCH RELEVANCE: Mrs. Nilanjana Maulik is the Di-rector of Dementia Services and Joint Secretary General of

Alzheimer’s And Related Disorders Society of India( ARDSI).

She is a support Worker and Counseller for Dementia Care-

givers for more than a decade. She offers counseling and

advise to caregivers and family members regarding ap-

propriate care management for patients with Dementia,

15. PARTICIPANT NAME: BRIG. S. P. BHATTACHARYA


PARTICIPANT ID –NAME: AD03 – Brig. S. P. Bhattacharya,

VSM

RESEARCH RELEVANCE: Brig. S. P. Bhattacharya is 86 years

old and is the primary Caregiver to his wife (who is a pa-

tient of Alzheimer’s) for the last sixteen years.

He has written a book titled “In the line of Alzheimer’s:The

mission continues”. He has chronicled his journey as a

caregiver in this book, with the hope that it will support the

future caregivers. This book highlights the importance of

understanding the cultural context for effective manage-

ment of Dementia.

INTERACTION TYPE: In-person interview at his residence.

16. PARTICIPANT NAME: MS. NIBEDITA RAY


PARTICIPANT ID –NAME: AD04– Ms. Nibedita Ray

RESEARCH RELEVANCE: Ms. Nibedita Ray is the project

coordinator of the Dementia-daycare centre at Ankur, AR-

DSI , Kolkata and a community caregiver for last couple of

years.

INTERACTION TYPE: In-person interview at ARDSI Day care

centre for Dementia patients.

mized)

RESEARCH RELEVANCE: Dr. Prasun Dey is a Cultural An-

thropologist and has done extensive research on Indian

elderlies.

He is a former caregiver to his father for 18 years.

INTERACTION TYPE: In-person interview

18. PARTICIPANT NAME: PROF. PRAFULLA CHAKRABORTI


PARTICIPANT ID –NAME: AD08– Prof. Prafulla Chakraborti

RESEARCH RELEVANCE: Prof. Prafulla Chakraborti is a re-

searcher/Academician/ Trainer in the Caregiving domain.

He has also authored the rst ever paper on dementia in

India in 1991.

He is also a tertiary care-giver to a Dementia patient.

INTERACTION TYPE: In-person interview

19. PARTICIPANT NAME: DR. AMIT DIAS

PARTICIPANT LOCATION: Goa, India

PARTICIPANT ID –NAME: AD11– Dr. Amit Dias

materials.

INTERACTION TYPE: Interview via skype

most comprehensive Indian-specic dementia website;

current caregiver and caregiver trainer.

She has been caring for her mother for last 11 years.



p. 116

RESEARCH RELEVANCE: Dr. Amit Dias is the founder secre-

tary of the Dementia Society of Goa and the coordinator

of the 10/66 Dementia research group in India.

Dr. Amit Dias is an epidemiologist and geriatrician by train-

ing and is currently the Asst. Professor at the department of

Preventive and Social Medicine at Goa Medical College.He is also the coordinator of the Medical and Scientic Ad-

visory Panel for the Alzheimer’s and Related Disorders Soci-

ety of India (ARDSI).

He was one of the authors of the National dementia report

that was presented to the Government of India in 2010. He

has a number of publications to his credit in national and

international peer reviewed journals.

His research on interventions for families of people with de-

mentia won the International FMA-ADI prize for being the

best evidence based psychosocial research in 2010.


20. PARTICIPANT NAME: DEVASHRI MUKHERJEE

PARTICIPANT LOCATION: Mumbai, India

PARTICIPANT ID –NAME: HP05– Devashri Mukherjee

RESEARCH RELEVANCE: Devashri Mukherjee is one of four

co-founders of Caregivers Link, a new online/ofine re-

source for caregivers in India.

She has worked with Ashoka: Innovators for the public andhas over two decades work experience in the Indian citi-

zen sector, having been involved in exciting initiatives at

an education resource center, a leading Indian funding

agency, and one of the rst education portals of India.

Her interest lies in creating children’s education material,

and her children’s stories have been published as resource

21. PARTICIPANT NAME: JAMES SINGH

PARTICIPANT LOCATION: Bangalore, India

PARTICIPANT ID –NAME: HP06– James Singh (Anony-

mized)

RESEARCH RELEVANCE: Mr. James Singh is an ex-Caregiv-

er who is connected to Swapna Kishore’s support network.

He and his three brothers offered his mother, who suffered

from Alzheimers, remote care with the help of two paid

caregivers , off and on for ten years, till she passed away.


22. PARTICIPANT NAME: JANET SUNITA

PARTICIPANT LOCATION: New Delhi, India

PARTICIPANT ID –NAME: HP11– Janet Sunita

RESEARCH RELEVANCE: Janet is one of four co-founders

of Caregivers Link, a new online/ofine resource for care-

givers in India.

Janet is a business management professional with over 3

decades of experience in the corporate, banking and so-

cial development sectors. She is currently working with an

NGO as Director Administration and Finance in New Delhi.

She is a former caregiver to her extended family including

her mother, youngest son and sister-in-law.


23. PARTICIPANT NAME: SWAPNA KISHORE


PARTICIPANT ID –NAME: HPAD03– Swapna kishore

RESEARCH RELEVANCE: Swapna Kishore is the founder of

Her site, Dementia Care Notes, contains exhuaustive and

current information on dementia and caregiving in India,

lots of material for caregivers, as well as links for resources.

She has also included (and keep adding to) interviews of

dementia caregivers and experts from India, to give a wid-

er perspective of dementia caregiving in India.

INTERACTION TYPE: Interview at her residence.

24. PARTICIPANT NAME: SHIKHA ALEYA

PARTICIPANT LOCATION: Mumbai, India

PARTICIPANT ID –NAME: HPAD04– Shikha Aleya

RESEARCH RELEVANCE: Shikha Aleya is one of four co-

founders of Caregivers Link, a new online/ofine resource

for caregivers in India.

She is a writer, researcher and communication professional

with two decades of work experience in the corporate

and the development sector and also the television & en-

tertainment industry.

Shikha feels strongly about equality, independence, inclu-

sion and a fair world. She is a consultant with organizations

in the NGO sector and is designing projects of continuing

interest to her related to animals, to children and to our

value systems.

INTERACTION TYPE: Interview via skype.

25. PARTICIPANT NAME: MR RAVI MAHARAJ


PARTICIPANT ID –NAME: HPAD07– Mr Ravi Maharaj

28. PARTICIPANT NAME: KOLKATA ARDSI


PARTICIPANT ID –NAME: HPAD12– Kolkata ARDSI



p. 117

RESEARCH RELEVANCE: Mr. Ravi Maharaj is a current

caregiver who is connected to Swapna Kishore’s support

network.

He is an informal caregiver to his father who is a dementia

/ Alzheimer’s patient since 2006. He also participates in a

subsequent group interview with his family.

INTERACTION TYPE: In-person interview at her residence.

26. PARTICIPANT NAME: MS. DEVI MAHARAJ


PARTICIPANT ID –NAME: HP08– Ms. Devi Maharaj (Ravi’s

Daughter) – Secondary Caregiver (Anonymized)



network.

Ravi’s family as part of an informal caregiving family to his

father who is a dementia / Alzheimer’s patient since 2006.

INTERACTION TYPE: In-person group interview.

27. PARTICIPANT NAME: MRS. HEMA MAHARAJ


PARTICIPANT ID –NAME: HP08– Mrs. Hema Maharaj (Ravi’s

Sister) – Tertiary Caregiver(Anonymized)



network.

Ravi’s family as part of an informal caregiving family to his

father who is a dementia / Alzheimer’s patient since 2006.

INTERACTION TYPE: In-person group interview.

RESEARCH RELEVANCE: The ARDSI Calcutta chapter,

founded in 1999, provides awareness programs, family

counseling, caregiver training, memory screening camps,

and specialized care to dementia patients in their Demen-

tia Day Care Center.

ARDSI Kolkata provides specialized counseling at its ofceand patients’ homes to help family caregivers develop ap-

propriate care plans. They also train family caregivers to

improve their care-skill and hold carer support group ses-

sions.

INTERACTION TYPE: In-person group observation and inter-

view



A HOTHOUSE 2011 EXPERIENCE RESEARCH STUDY

ON INFORMAL CAREGIVING IN INDIA & FINLAND

Documents

Intel EIRE Health Innovation Lab: WhoCaresfortheCarers Ethnography, 2011