3 4 DEMENTIA FRIENDLY COMMUNITIES 4 · Dementia Friendly Communities Consumers Forums across metropolitan Adelaide for people living with dementia, their carers and families to discuss

Dementia Friendly Communities Report of Conversations Consumers Forums 2013 2

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DEMENTIA FRIENDLY COMMUNITIES 4

CREATING DEMENTIA FRIENDLY COMMUNITIES AND ORGANISATIONS 6

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OUT AND ABOUT 8

LIVING INDEPENDENTLY (AT HOME) 15

Prepared by

Phil Saunders

Policy Officer

Alzheimer’s Australia SA

Published by

Alzheimer’s Australia SA

27 Conyngham Street, Glenside SA 5065

Telephone: 08 8372 2100

www.alzheimers.org.au

© Alzheimer’s Australia SA

ABN 36 236 331 877

ISBN 978-0-9872055-3-7

For information and advice contact

the National Dementia Helpline

1800 100 500 (NDH is an Australian Government initiative)


In late 2013 Alzheimer’s Australia SA held three

Dementia Friendly Communities Consumers Forums

across metropolitan Adelaide for people living with

dementia, their carers and families to discuss what

was required to create dementia friendly

communities.

Participants were asked about their experiences living

with dementia ‘out and about’ in the community and

living with dementia ‘at home’. They were invited to

outline the actions to make their region dementia

friendly, which would make a difference to them

personally.

Participants outlined what they would like to see

happen, in community attitudes and in practical

assistance.

One hundred and thirty seven people attended the

forums in northern, southern and central locations.

CONSUMERS FORUMS

Drawing on the Lived Experience

People living with dementia, their families and carers

are an integral part of informing the development of

services that best meet their needs. Regular

consumers forums provide a means for these people

to share their experiences with others on particular

topics.

Through these conversations, participants discuss

what is happening to them and what could be done to

support them. This provides Alzheimer’s Australia SA

with the best picture possible in its representation of

their lived experiences and needs.

The Forum Opportunity

Forums are an opportunity for participants to

network, discuss particular topics, raise issues

important to them and offer practical solutions for

service delivery across the wider service sector and

for Alzheimer’s Australia SA itself.

Sharing, Learning, Challenging

At each forum Alzheimer’s Australia SA provides an

update of it’s consumer engagement and policy

advocacy activities. A guest speaker tells their story

of living with dementia.

Following presentations, participants are invited to

share their experiences on the particular forum’s

topic.

Forum discussions are built on informal

conversations based on open-ended questions within

the core agenda. This results in a broad range of

responses, with extensive sharing of information and

experience between participants and a large number

of recommended actions.

Complementing the conversations are Comment

Sheets for the participants, giving them an

opportunity to provide written responses which

further explore the verbal conversations.

A report of each forum session is provided to forum

participants to progress local conversations.

Attendance at Creating Dementia Friendly Communities Forums

Date Location People Living

With Dementia Carers

Consumers

Not Stated

Service

Providers Total

21/11/2013 Northern Adelaide 12 15 2 2 31

28/11/2013 Southern Adelaide 14 24 1 2 41

05/12/2013 Western and Eastern

Adelaide 13 38 10 4 65

Totals

39 77 13 8 137


Barrie Anderson

Caring for a partner with Alzheimer’s is not easy. It

exposes our weaknesses, prejudices and our

failures.

If the illness is prolonged it consumes our time and

energy and drains financial resources.

But if the Confucian tradition is true that we are not

born fully human, but only become so by cultivating

ourselves and our relations with others, then caring

is potentially one of the best experiences to bring out

humanity.

Change

At the outset of my wife Grace being diagnosed with

Alzheimer’s we decided we would seek all the help

we could get so as to make Grace’s journey less

stressful. We needed to navigate the system

successfully. We also decided that I would walk in

Grace’s shoes.

As a carer I needed to accept change, be

enthusiastic in everything I did, stay positive and not

get angry, become more sensitive, interpret body

language, become a better communicator, learn new

skills, socialise, maintain a sense of humour and

maintain a good sleep pattern in order for us to

complete Grace’s journey from our home to

residential care.

In the context of this a vital link in our journey was

that of respite care.

Living Independently

It was this part of our journey where I first

experienced living independently. The experience of

handing over the care of Grace to other people

initially I found difficult, as I felt I was doing a good

job in looking after Grace.

Has living independently affected my life? Yes. The

change first started with Grace going into respite

care. The process started with periods of short-term

respite accommodation for Grace. Initially it was half

day placements, with subsequent placements

becoming longer, until the final stage of our journey

with Grace being placed in residential care.


Obtaining respite care can be an extremely stressful

task. It was easier to get low care respite as against

seeking high care respite. There are nowhere enough

respite centres especially for high care placement.

Secondly, many of the residential care providers offer

accommodation, often in blocks of up to 21 days.

Being cynical I think they offer this arrangement as it

cuts down on paperwork.

I needed to progress from short term placements for

Grace to ones of greater length as we progressed

toward placing Grace in residential care.

Thirdly, respite is very expensive and a drain on

expenses. In our journey through the respite stages

we sought help from a number of providers. Without

exception all met our needs and expectations fully.

I now live independently. Living independently has

opened up my life.

It has enabled me to reconnect with groups and

organisations that I was part of before I took on the

caring role. I have made new friends.

I have joined a choir. The choir allows carers to find

their voice in singing, as well as providing an

increased awareness in the community about caring

and being cared for.

I’ve joined a number of carer support groups. The

value of these groups is that they have expanded

outwards and formed social groups. Friends now

meet on a regular basis for coffee and chat.

Creating Dementia Friendly Communities

Dementia friendly communities will firstly recognise

the experiences of individuals living with dementia

and best provide assistance for individuals to remain

engaged in everyday life in a meaningful way.

What paths should we pursue to achieve these

communities?

We should start with what is currently in place, the

existing respite and residential care establishments.

We need to encourage residents to go out into the

community to enjoy meals at local restaurants and

hotels, to visit child care facilities and to attend

sporting fixtures.

Next, we need to get actively involved in education.

We need to start with our children, starting with

those in kindergarten, then primary and high schools.

We need to teach them about dementia and the

stigma surrounding dementia.

We need to involve politicians of all persuasions to

bring to their attention the seriousness of the

problems associated with dementia.

There needs to be clear recognition in training care

workers that ‘aged care’ is quite different to

‘dementia care’. There is a need to recruit and train

more pastoral care workers, working in the

community as well as in respite and residential care.

We need to use technology to address safety and

security concerns in the home, looking particularly at

sensors for movement, falls and doors, along with

medication reminders, smoke alarms and other

environmental sensors.

We need to develop and maintain programs that:

Support people in the early stages of dementia,

covering topics such as symptoms and

diagnosis, adapting to change, practical

strategies, looking after yourself and planning

for the future.

Provide an opportunity for people living with

dementia and their families to enjoy time

together with entertainment and refreshments,

including play groups in residential care.

Provide volunteers to support people living with

younger onset when they shop.

Promote activities such as swimming and

walking groups for interacting in the community.

Provide affordable group housing in community

settings.

Presentation to Dementia Friendly Communities

Consumers Forum, Southern Adelaide,

28 November 2013.

Barrie Anderson

Barrie cared for his wife Grace who has dementia. Grace is

now in residential care.

Barrie is a member of the Alzheimer’s Consumers Alliance

SA and the Alzheimer’s Australia SA Residential Care

Consumers Reference Group.

Barrie has been the carer representative on the Network

Reference Group at Norman House, the organising

committee for the 2010 Carers Conference and is a

member of the Caring Choir.


David and Sue Anderson

A Dementia Friendly Community is a city, town or

village where people with dementia are understood,

respected, supported and feel confident they can

contribute to community life. Definition from the Alzheimer’s UK website

Living Strategies

I hope to be able to convey to you some of the

thoughts and experiences that I have had, and

continue to have, as I move along the journey of

dementia.

My condition has been very stable for some time but

in the last few years my wife and I have recorded

significant changes in my ability to cope and deal

with everyday living.

Together we have developed and put in place what I

call “living strategies” that I have found to be a basis

of moving through life, while striving to deal with

challenges and issues that confront me.

I have voluntarily dropped or reduced some activities

that form part of everyday living and some I seek

assistance with, mainly from my wife, if I am

considering attempting some that I may need help in

completing. Obviously some, like using power tools,

repairing or maintaining the house and vehicles are

definitely now done by others or professionals.

We have adopted an approach to life where my

condition is closely monitored and controlled from

medical intervention, while an attitude of striving to

remain self sufficient and seeking support and

assistance only when necessary has been a means

of keeping as much independence as possible for us

both.

Neither of us are willing to let the disease disrupt our

lives as much as it can if a “sit back and try nothing”

approach is adopted. Yes, there are plenty of things I

cannot do now, however it has been proven that

there is plenty that I still can do.

It is on this attitude towards living the best we can

that our determination is based.


Challenges and Difficulties

People living with dementia and their carers talk

about the challenges and difficulties they experience

with technology, shop service, bank dealings and

service, post offices, using transport, going on

holidays, maintaining social contact and enjoying

hobbies and interests.

These things are taken for granted by most people

and form an everyday part of a person’s life until they

are confronted with the deterioration in their abilities

with dementia.

Carers bear the brunt of the responsibility to assist

the person living with dementia to achieve the most

basic functions.

A person living with dementia’s attitude, personal

characteristics and behaviour are also often

misinterpreted by society, thus adding to the

challenges and difficulties.

“It’s a lonely and frustrating disease.”

A person living with dementia can feel trapped and

cut off from everyday life, feel let down by the

community, feel like a burden, so they avoid getting

involved with community life.

Creating Dementia Friendly Communities and

Organisations

Dementia friendly communities must recognise that

a person living with dementia is living in a slightly

different world and that the speed of society and its

processes is sometimes beyond that person’s

comprehension and capabilities.

To become really dementia friendly, communities

have to be educated to truly understand the

differences between the ‘normal’ world and the

‘dementia’ world.

Only then will society move on to become accepting

and understanding of this disease and reflect all

facets of this development.

A Dementia Friendly Community Will

Show a high level of public awareness and

understanding of the disease and of the person

living with dementia.

Be inclusive of the person living with dementia.

Help improve the person living with dementia’s

ability to remain independent.

Assist the person living with dementia to have a

choice and control over their lives.

Empower the person living with dementia to

have high aspirations and feel confident,

knowing that they can contribute and participate

in activities that are meaningful to them.

Key Areas for Communities Working Toward

Becoming Dementia Friendly

Identify key partners and stakeholders in

business and services.

Increase knowledge and understanding of

dementia.

Challenge the stigma and myths of dementia.

Work with local services and businesses.

Work together to establish and increase

opportunities for people living with dementia

and their carers.

Work together to increase empathy and support

(eg local council and local community

opportunities).

Presentation to Dementia Friendly Communities

Consumers Forum, Western and Eastern Adelaide,

5 December 2013.

David Anderson

David Anderson was diagnosed with Younger Onset Dementia in 2001.

David was satisfactorily treated for colon, kidney and

bowel cancer in June 2010.

David has been a speaker at a number of state and national

conferences and forums, as well as media interviews.

David is a member of the Alzheimer’s Consumers Alliance

SA. He has been a consumer member of the Alzheimer’s

Australia National Younger Onset Dementia Reference

Group.


LIST A COUPLE OF EXPERIENCES

YOU HAVE HAD LIVING WITH DEMENTIA

‘OUT AND ABOUT’

IN THE COMMUNITY

“A person living with dementia is living in a

slightly different world and the speed of

society and its processes is sometimes

beyond that person’s comprehension and

capabilities.” David Anderson

HIGHLIGHTS

Retail staff lack understanding and become

impatient with people living with dementia

Lack of transport options

Complaints about taxi and bus drivers

Distress caused by long waiting times at medical

centres and hospitals

Practical difficulties finding and getting services

and support

Different levels of support from family members

People living with dementia getting lost when

going out

Shopping and Banking

Participants spoke about the person with dementia

having increasing difficulties with shopping and

banking. They were “losing the ability to remember

the reason for shopping” and “forgetting some

shopping items”.

For one person living with dementia it was “liking

routine, the same shops in familiar surroundings”.

Another person loaded extras into the trolley, so that

their carer said that “we collected more biscuits than

we ever needed”. Another was “taking sticky labels

with him to place on the gift to write the names of

who he has bought presents for”.

Participants observed that staff in retail shops and

banks showed a lack of understanding or recognition

regarding communication with a person living with

dementia.


Supermarket checkouts were regarded as “too fast

and not helpful”. Staff were observed becoming

impatient when people living with dementia were

“trying to sort out money”, “working out whether

change is correct“, or were having difficulty with

what they were trying to say.

Family members were taking on advocacy roles

when shopping to “protect” the person living with

dementia, or who, according to the person living with

dementia, were “always with me”.

Others noticed that the person they were caring for

was “being taken advantage of (by local shop

keepers) selling her things she did not need, even on

credit which she did not have”.

Difficulties in shopping centres included shops’

dependence on personal identification numbers

(PINs) to get services and the noise and movement.

“Too fast and not helpful.”

There were concerns about “leaving our person on a

seat in the shopping centre - will they run away?”.

“Lots of doors and perhaps not enough signage”

lead to more disorientation, with it being “hard to

find your way back once you have got to

somewhere”.

Transport

Participants spoke about the lack of available

transport options - “if I can’t take him, who/where?”

and spending “half the day driving my husband to

and from the day care centre” prior to using taxi

vouchers.

There were a number of complaints about taxi

drivers, including drivers being abusive, with “a total

lack of understanding toward people living with

dementia”.

Taxi drivers were ‘cheating’ the person living with

dementia by overcharging, taking more travel

vouchers than they should, denying being given a

travel voucher, giving foreign coin as change and

accepting money as a ‘tip’.

One participant spoke of the example of the day care

centre which banned the use of taxis and bought a

bus for collecting clients, due to complaints about

taxi drivers.

Medical Appointments

One participant spoke about their family member,

now living in a nursing home, for whom the GP

“does not do a comprehensive job because they do

not have notes from the nursing home and doesn’t

know what is actually happening to the person and

the person living with dementia has difficulty with

communication”.

“Be aware of dementia when treating for

non-dementia issues.”

Other concerns included the person living with

dementia “losing the ability to tell health practitioners

my own health conditions”.

Doctors and nurses needed to be aware of dementia

when treating for non-dementia issues. People living

with dementia were reported as being embarrassed

when doctors asked questions as part of an

“assessment” that they could not do, for example

maths problems.

Having to wait for long amounts of time when

practitioners were running late also created

problems.

One participant spoke about having “to change from

a large medical centre to a small family practice, so

that mum could cope with going to the doctor

(because) the large centre did not have the time or

patience to deal with mum”.

Hospitals

Participants regarded hospitals as “very confusing”

for people living with dementia, who become “very

distressed” during hospital stays.

Examples of difficulties with hospital stays included

the patients living with dementia unable to ring the

bell.

One public hospital moved the person living with

dementia three times from ward to ward “causing

deterioration in the dementia”.


One participant experienced difficulties getting the

person they cared for into a private hospital, with

several private hospitals “rejecting him saying they

could not cater for dementia wandering because of

safety concerns”, even though the family had had

private hospital cover for 35 years.

“The family needed to advocate, as nurses

were not understanding of dementia.”

Another spoke about her experience in an

emergency department,

“Dementia patients go to the bottom of the list, as a

low priority. Triage had no understanding of dementia

and we would always be made to wait four to five

hours with nothing to do. This meant no lunch or

leaving my mother alone, hoping she would not

wander. It caused difficulties with toileting. I couldn’t

go to the toilet in case we got called up and missed

our consult. Mother could understand that others

arrived after us and were seen much sooner.”

Local Councils and Services

Participants experienced practical difficulties finding

services and support, with carers becoming

“exhausted and finding blocks when looking for

services” with “difficulty understanding what

services are available”.

They were concerned that they could not get help

until a diagnosis of dementia was made. Then the

person living with dementia needed to “be fit

enough to be able to attend help meetings”.

One carer spoke about the person living with

dementia enjoying “being out and seeing the sights”

but being unable to view anything because “fences

often obscure the view from the car at parks,

reserves and along the coast yet (he) does not want

to or is not able to leave the car”.

Participants from culturally and linguistically diverse

backgrounds spoke about their difficulties in finding

day care service because of language difficulties.

One said that they “translate everything for him”,

whilst another complained that the “worker told my

dad to speak English”.

Toilets

Participants spoke about the difficulty in finding

unisex toilets in parks and other public places so that

the carer could go into the toilet with their partner.

Toilets with more than one exit also created

problems.

Family

A number of participants found acceptance and

support from family members. This could, however,

vary from family member to family member.

Relatives living further away were observed to have

an approach that centred on pathologies rather than

what ‘normal’ behaviour was possible.

Participants were also concerned that other people

tended to “talk to the carer rather than the person

living with dementia”.

One way families could help was with technology,

but “writing down instructions can be confusing”.

Residential Care

Concerns with residential care included the side

effects and cost of anti-psychotic drugs. The

transition between living at home and in secure care

was “very difficult”.

Going Out

A major issue for participants in going ‘out and about’

was the forgetfulness of the person living with

dementia where the person living with dementia

“forgets some destinations, the route and the reason

for the outing”. This could result in the person

“getting completely lost”.

As one participant explained,

“He got lost the other day when we went to the

barber, found his way home, but he was rattled. He

is losing the ability to process information from the

street directory to plan trips.”

Buildings had confusing signs. For example, exits

had a running man, but toilet doors also have a man.


The result of behavioural problems included only

being able “to go to one or two places where she

felt OK” and when the person living with dementia

became aggressive or was screaming.

Other difficulties arose with restaurants being noisy

and crowded places. The person living with dementia

becoming separated from their carer going through

security at airports also caused difficulties with

behaviour.

“Going out is only possible because the

carer is around.”

Participants spoke about movies being an enjoyable

experience for people living with dementia, even

though they might not remember it afterwards.

Problems with going to the movies were reported as

when the person with dementia needed to leave the

cinema in the dark.

Reliance on Carers

People living with dementia spoke about their

reliance on their carers “for everything”, including

making appointments and understanding the

problems and symptoms being experienced.

Other

Participants expressed concerns that disability group

homes were not geared to dementia care, with the

“lack of understanding” being “frustrating and sad;

there is exclusion making people feel stigmatised”.

People living with dementia were observed to be

confused about Australia’s different time zones

when trying to contact interstate relatives.

Positive Experiences

Whilst many participants raised concerns, a number

had found their local shopping centres positive and

supportive, finding “most shop and office people are

very tolerant of my wife’s problem”, “everyone at

(the local) shopping centre looks after my husband”.

These positive experiences were a result of “the

shop keepers coming to know the person living with

dementia and allowing her to take her time” or

familiarity by the person living with dementia “with

the area because we have been living there for 30

years”.

One participant spoke about their experiences living

in a small town where “we find it is dementia

friendly, everybody smiles and speaks to you and if

you are in need of help someone would be there”.


LIST THREE ACTIONS

THAT WOULD MAKE YOUR REGION

DEMENTIA FRIENDLY

“Dementia friendly communities will

recognise the experiences of individuals

living with dementia and best provide

assistance for individuals to remain

engaged in everyday life in a meaningful

way.” Barrie Anderson

HIGHLIGHTS

Dementia education for retail staff and taxi and

bus drivers

Care rooms in shopping centres

Education packs for geriatricians to give to

people on diagnosis

Emergency departments giving people living with

dementia priority

Community support driven by councils with

dementia activity centres and ‘buddy neighbours’

Encouragement of community groups to include

people living with dementia

Community education about dementia to begin

at school

Practical help for carers

Shopping and Banking

Participants offered a range of actions to make

shopping experiences dementia friendly including

action taken at government level to accept

(companion) dogs in shops and hospitals etc along

the guidelines of Guide Dogs for the Blind.

Shops, cafes and libraries could hold a ‘seniors day’.

Dementia education of supermarket and retail staff,

as part of their training, could result in them receiving

a dementia friendly tick.

Shopping centres could assist by providing forums

within their centres “where people could assist with

shopping decisions”. A supervised care room “so

that the carer can get on with shopping and business

without worry” would also be helpful.

Transport

Participants recommended better training for taxi

drivers and community bus drivers.

They wanted support for day care centres to

purchase their own vehicles.

Parking drop off zones at GP clinics and other

medical facilities would enable the carer to take the

person living with dementia safely inside, prior to

parking the car.

Bus stop numbers should be provided for people

travelling by bus to forums, education, medical

appointments and going out generally, for example to

the movies, “as not everyone drives”.


Senior parking near shops and facilities should be

organised by councils and shopping centres. People

living with dementia and their carers “should not

need a disability car park sticker”.

Participants wanted greater assistance with transport

for people living with dementia to be provided by

service agencies and the government to provide easy

access to services.

Medical Appointments

Participants observed that “medical practitioners

who can relate to the condition is essential”.

Visits to medical practitioners could be improved by

receptionists “slowing down so that the person living

with dementia can understand and answer

questions”.

“The pace of society needs to be slower to

find time with the person living with

dementia.”

The medical profession needed more training, in

particular involving communication with the person

living with dementia’s family.

Geriatricians could have an education pack to give

out to clients when diagnosed with dementia “to

help clients access services”.

Hospitals

Recommendations to make hospitals aware and

more caring about patients living with dementia

included “appropriate areas for people living with

dementia”.

Increased medical student and nursing staff

education would included an encouragement to “talk

to patients living with dementia at their level” and for

them to be aware that “being reassuring is not a

‘white lie’”.

Emergency departments needed “triage protocols to

prioritise people living with dementia, rather than

putting them right at the bottom” and “an

emergency care plan for those without an advocate”.

Local Councils and Services

Participants wanted local community support to be

driven by local councils, because “everything starts

with the local council”.

This would begin with every council, their services

and agencies being educated on dementia friendly

communities.

“Everything starts with the local council.”

Participants thought that this would help local

services to be more respectful of people living with

dementia. There would also be a greater

understanding of dementia “in regards to all

infrastructure, for example fence heights at parks

and coastal areas” and an awareness “of the

difficulties different people have in navigating streets

and walkways”.

Council support would then include dementia activity

centres at local libraries and establishment of ‘buddy

neighbour’ schemes for support, particularly for

people living alone with dementia.

The encouragement, acceptance and support of

people living with dementia into community activities

such as sporting clubs, exercise classes and

Christmas parties would assist to “keep mobility,

dexterity and cognitive ability”.

Councils should make sure their staff know about

local services. Participants wanted more council

support with home maintenance, for example, gutter

cleaning, house cleaning and yard maintenance.

One participant recommended that service clubs

could make street safety a project in their different

neighbourhoods.

Aids and Equipment

Participants sought assistance with IT in public

places. They wanted a tag and an app “to know

where the person living with dementia is” and for

“reminders for taking medication and to tell whether

someone has fallen over”.


Going Out

Participants observed that people living with

dementia don’t always have the ability to use a

keyboard, so services should not assume that people

can Google or use a computer to find services,

locations and directions.

Others spoke of the benefits of going to “a friendly

restaurant not noisy just sat and smiled”, “belonging

to a social club with regular entertainment and

outings”, “going out to lunch everyday to meet

people” and social dancing on “most Saturdays”.

Community Education

For the participants, education began with

“involvement with children in school”.

They wanted “educating and awareness in all areas

of community services, for example banks, taxis,

hospitals, public transport, Centrelink, supermarkets”

and the “education for staff of (independent)

retirement villages on living with dementia”.

“Greater community acceptance, respect

and understanding would come through

education.”

The local population could be educated “via

pamphlets about people living with dementia”.

Participants called on Alzheimer’s Australia SA to go

and talk “with the community that the person living

with dementia is part of, for example church, craft

groups, community centres, sporting groups, gyms

etc”.

They wanted Alzheimer’s Australia SA to “contact all

state politicians, taking with them people living with

dementia and carers, to educate and create

awareness and understanding”.

Toilets

Participants sought more unisex toilets in public

places, or greater understanding of their need to use

disability toilets.

Residential Care

Participants observed that “retirement villages need

to be more dementia friendly”.

Greater nursing education placement in residential

care with appropriate activities, for example the

Montessori model of care, would help care workers

gain more understanding of people living with

dementia.

Supporting the Carer

Carers wanted more support for themselves to

undertake their caring role. This included “real help

for carers with housework, shopping, day care and

carers lunch”.

“Information, information, information to

plan ahead and not wait for a crisis.”

As one carer acknowledged, “I should think ahead

more and communicate better and more often”.

One rural carer spoke of her experiences,

“As a carer I receive a great deal of support from

Carers Link Barossa. My wife who has dementia

questioned why she was not getting support for

herself. On exploring this issue we found out that

Alzheimer’s Australia SA offers one on one

counselling although their resources are terribly

stretched. We feel that more resources should be

provided for counselling etc and people made aware

of the services.”

Other

Participants spoke about other supports to assist in

getting ‘out and about’ including increasing the help

“of people in places I go to”, advocates for the

person living with dementia, a Government

companion card for dementia and more appropriate

programs for people from culturally and linguistically

diverse backgrounds.

Participants spoke positively of “the assistance of

men’s sheds, senior citizens, Alzheimer’s social

groups and carers groups that provide solidarity and

interaction rather than so much written information”.


LIST A COUPLE OF EXPERIENCES

YOU HAVE HAD LIVING WITH DEMENTIA

‘AT HOME’

The desire to have people with dementia

living at home with the support of family

carers comes with a wide range of

difficulties, placing both the person living

with dementia and the carer at risk.

HIGHLIGHTS

People living with dementia lose the ability to

undertake the tasks of daily living

People living with dementia experience

frustration and loss of independence

People living with dementia become unable to

control their finances

The serious impact on the lives of carers

Difficulties with services, in particular respite

care

The isolation of people living alone with dementia

Behaviour of the Person Living With Dementia

Participants described their experiences ‘at home’

with the person living with dementia losing things

such as mail and “important paperwork”.

People living with dementia were spending lots of

time doing ‘simple things’ because they were “losing

things and losing thought”. They sorted items and

stored them in different places around the home,

losing items which carers are unable to find.

“Losing things and losing thought.”

Forgetfullness, as one carer explained, included,

“Forgetting to eat and drink, whether he had a

shower, whether he had pulled down the blinds, the

date/time, how to cook, where he put things, how to

put on heating, air-conditioning and change settings

and how to use the telephone.”

Others were “not taking medication” or “not

accepting help from the family because they were in

denial and wanted to be seen as independent and

stoic”.

People living with dementia were observed “sitting

in a dark room, no TV or radio with the blinds down”,

taking “a long time to get dressed, ready to go out”,

and “getting up at 4am, having a shower, getting

dressed and having breakfast”.

They did not look at memory boards, left lights on,

did not lock doors properly and were “not using

dangerous equipment, for example stoves and gas

with flames, properly”.

One carer told how “my electrician husband badly

damaged electrical wiring in our house before I

realised he no longer knew what he was doing”.


Carers were constantly worried about where the

person living with dementia was and what they were

doing. One spoke about “always having to retrace,

where the person with dementia is up to with jobs to

be done, keeping lists etc”.

People living with dementia spoke about their

negative experiences, including with toileting, their

frustration, having no patience, the dementia

“progressing too quickly”, feeling isolated at home,

losing their independence “because things are

thought of for us” and being “excluded by our

carers”.

Participants spoke about the distress and fear of

people living with dementia if they are told they have

dementia.

Finances

Participants observed that financial problems arose

with people living with dementia at home due to

people living with dementia finding it difficult to say

“no” to phone and mail telemarketers who were

“taking advantage”. They were “giving away money

to charities regularly because charities keep sending

letters or calling every week for money”.

One participant said that their bank manager had

reported that “this was a common problem: people

were vulnerable to telemarketing and mail frauds”.

There was similar concern with the easy access of

the newer credit card/debit card pay wave

technology.

Services

One participant was told by a service agency that

“we do not service your area”, but was concerned

that the agency could not then tell them who could

provide the service being sought.

Another observed that “patients living with dementia

don’t always relay the correct information if they

don’t have an advocate present during the

appointment”.

Respite Care

Participants expressed their difficulties with respite

care including “it could take days to confirm the

times the respite care worker was coming and this

made it very difficult to plan appointments”, the

limits of respite care and wanting to know “can a

temporary carer be arranged” during a hospital stay.

Impact on Carer

Carers spoke about the impact on their lives as a

result of caring for someone at home. They talked

about increasing workloads and the impact on their

health. Getting the person ready to go out or to go

away to stay somewhere, “takes twice as long”.

One carer said that “people generally stay away

because they do not understand how to talk to

someone with dementia”. As a result carers

experience extreme loneliness while caring at home.

“Becoming exhausted through lack of sleep

allowed my husband to wander around the

house at night and do dangerous things.”

Another said that as a fulltime carer for about five

years prior to residential care placement they

“suffered loneliness, tiredness and grief; the support

time that was available to me as a carer was too

inflexible to be of real value”.

For some, family members were “in denial” resulting

in “conflict for the family and total confusion for the

person living with dementia”.

Another carer spoke about how hard it was “to get

assistance from neighbours, regardless of any

goodwill they might have, or book appointments for

care workers for things like taking my wife for walk”,

resulting in isolation and confusion.

Living Alone

Participants expressed concern about people living

alone. As one explained,

“Single people with no children who watched their

parents with dementia and cared for them have a

fear of getting dementia themselves and having no

one to care for them, no one to make decisions for

them; being at the mercy of the state.”

One participant spoke about their friend living with

dementia living alone who wakes in the night

disoriented so rings another friend at all hours and

several times some nights. Participants were

concerned at how these people were going to get

help when they woke up disoriented.


LIST THREE ACTIONS

THAT WOULD MAKE YOUR HOME

DEMENTIA FRIENDLY

Participants observed that it was “possible

to live at home and be happy, you need to

know what is available”.

With help from Alzheimer’s Australia SA and

other services they could adjust the home

environment “to meet the needs of the

person living with dementia”.

HIGHLIGHTS

Assessing the home to reduce harmful behaviour

and risks

Providing aids and equipment to minimise the

effects of memory loss

Greater and more consistent home support from

local councils

Increasing respite opportunities that meet

individual needs

Advising carers in developing the practicalities of

caring at home

The Home Environment

A first step to assist people living with dementia to

remain at home would involve “someone to assess

the home to reduce harmful behaviour such as

ripping out electrical cords, pressing the wrong

buttons”.

Participants wanted building codes updated to

provide for dementia friendly houses, for example for

passage widths to be able to cope with stretchers

and wheelchairs.

Appliances

Participants wanted appliances such as stoves to be

manufactured to turn off automatically. Occupational

therapists or others trained in understanding

dementia could then be employed to help train the

person living with dementia on how to use these

appliances.

They also wanted the development of dementia

friendly door and gate locks.

Aids and Equipment

Participants spoke about the importance of

appropriate aids and equipment that would enable

the person living with dementia to remain in their

own home and ease the burdens on the carer.

These included voice activated phones, large easy to

read clocks that showed time, day, year and whether

morning or afternoon, simplified voice activated

remotes, memory boards for writing daily notes for

reminders about the daily activities and ‘to do tasks’

and placing chains on wallets.

The installation of level flooring and rails throughout,

in particular in showers, was seen as vital.

Carers spoke about using Webster packs and locked

boxes for medication. They used locked cupboards

for food and keys “to ensure they are not lost or

hidden”. They placed signs and symbols on doors,

drawers and cupboards to identify the room or

contents for the person living with dementia.


Local Community and Services

Participants sought community support “in what is

required to support the carer and the person living

with dementia through support in the home from, for

example, the local council, Alzheimer’s’ Australia SA,

community groups, community centres, Meals on

Wheels and RDNS”.

They wanted “someone to call in each day to check

up with the older person”.

One recommendation, seen as particularly important

for single people, was for a subsidised reliable dog

walking service to allow the person living with

dementia to stay at home with companion and

canine support to be provided by the local council or

through the state Department for Communities and

Social Inclusion.

Care workers on home visits should be “the same

one to visit, not a rotation of different care workers:

trust and understanding can then be built up”.

Respite

Participants sought opportunities for “regular respite

moderately priced and tailored to the needs of the

person requiring care” and “better times and

accessible respite care, for example when the carer

is in hospital”.

“More short term help because the principal

carer is not always fit and well.”

One participant argued that she “could have kept my

husband at home longer with more day care,

however, I was only allowed two days at one centre

and using more than one centre caused great

confusion for my husband”.

The availability of 24 hour respite care, particularly in

country regions, was also required.

One recommendation for respite was for those who

would take over care to compile a list of

requirements for the person living with dementia to

pack when going into respite.

Caring for the Person Living With Dementia

Participants wanted activity around the house to be

“supported and safe”. They sought advice for “all

family members of their responsibilities in the care of

parents”.

They wanted help with strategies so that they could

“have different strategies planned”.

Participants observed the importance of routines,

humour, flexibility, “keeping your cool, to try to keep

emotions under control”.

Friends and neighbours could be advised about the

“family issues” as background to providing support.

“We developed and put in place ‘living

strategies’ as the basis for moving through

life.”

The carer should “try not to correct the person living

with dementia when you can see that they do not

understand what you are trying to get them to do”.

They talked about making life easier ‘at home’ by

leaving reminder notes, “more hugging and

touching”, relatives helping with labelling things and

minimising ‘clutter’ though this was “very hard when

the person living with dementia creates clutter by

accumulating ‘stuff’ and not throwing things out“.

One person explained that they arranged packets of

tablets in groups for the time of day when to take the

tablets. They used reminder phone calls. It was

important, they said, “to have a flexible mind set if it

is OK to take the medication later or miss a dose”.

As one expressed, “I am currently ‘in charge’ but

expect more problems as the years go by”.

Other

Participants observed that the mental health of

patients living with dementia must be recognised as

an absolute priority. Pets and music would be of help

in this regard.

They wanted telephone cold calling to cease.

Documents

3 4 DEMENTIA FRIENDLY COMMUNITIES 4 · Dementia Friendly Communities Consumers Forums across metropolitan Adelaide for people living with dementia, their carers and families to discuss