Lived experiences of Iranian family member caregivers of persons with Alzheimer’s disease: caring as ‘captured in the whirlpool of time’

CARER PERSPECTIVES

Lived experiences of Iranian family member caregivers of persons with

Alzheimer’s disease: caring as ‘captured in the whirlpool of time’

Elham Navab, Reza Negarandeh and Hamid Peyrovi

Aims and objectives. This study aimed to understand the experiences of Iranian family caregivers of persons with Alzheimer’s

disease.

Background. Increasing rate of Alzheimer’s disease along with the ageing population has made this disease an urgent public

health challenge worldwide. As non-professional caregivers, family members play a significant role in delivering care to elders,

most of whom have one or more chronic diseases. Family-based caregiving has expanded with the encouragement of non-

institutionalisation but at the same time creates challenges for caregivers.

Design. A qualitative study was conducted using Heideggerian hermeneutic phenomenology.

Methods. Eight Iranian family caregivers of persons with Alzheimer’s disease were interviewed. Interviews were audio-taped

and transcribed; data were analysed by Van Manen’s methodology.

Results. One of the most important themes that emerged was ‘captured in the whirlpool of time’, which also contained the

subthemes of ‘reminiscence of past’ and ‘being afraid of the future’. Family caregivers frequently remembered their common

past experiences when interacting with their loved ones with Alzheimer’s disease, as though travelling with him/her to the past.

Furthermore, caregivers continually compared the past abilities of their relative with their present condition, which resulted in

feelings of loss and regret. Further, the unpredictable nature of Alzheimer’s disease created fear about the future deterioration of

the condition and caregivers’ future suffering.

Conclusions. The findings demonstrated the necessity of providing continuous education and support for family caregivers of

persons with Alzheimer’s disease.

Relevance to clinical practice. Nurses are among front-line professionals who are in a position to support and provide infor-

mation for family caregivers of persons with Alzheimer’s disease.

Key words: dementia care, Iran, nurses, nursing, phenomenological hermeneutics, qualitative study

Accepted for publication: 31 August 2011

Introduction

The ageing of the population has led to the increasing number

of persons with Alzheimer’s disease (AD) as an important

public health challenge (Cohen 2000). AD affects about 6% of

the population aged over 65 (Ferri et al. 2006). The increase

in the number of ‘oldest old’ will significantly affect the

number of persons suffering from AD (Alzheimer’s Associa-

tion 2010). Informal family caregivers are the main source of

care for persons with AD. Family members are providing

more care for longer periods of time than ever before (Cohen

1999). In the contemporary healthcare system, there is an

Authors: Elham Navab, MSc, PhD Candidate, School of Nursing

and Midwifery, Tehran University of Medical Sciences; Reza

Negarandeh, PhD, Associate Professor, School of Nursing and

Midwifery, Nursing and Midwifery Care Research Center, Tehran

University of Medical Sciences; Hamid Peyrovi, PhD, Associate

Professor, School of Nursing and Midwifery, Tehran University of

Medical Sciences, Tehran, Iran

Correspondence: Reza Negarandeh, Associate Professor School of

Nursing and Midwifery, Nursing and Midwifery Care Research

Center, East Nosrat St., Tohid Sq., Tehran 1419733171, Iran.

Telephone: +98 21 66421685.

E-mail: [email protected]

� 2012 Blackwell Publishing Ltd

1078 Journal of Clinical Nursing, 21, 1078–1086, doi: 10.1111/j.1365-2702.2011.03960.x

increasing emphasis on home-based health care, which is

related to the need for long-term care and the prevention of

high costs for the family and the healthcare system (Health

Canada 1997). For persons with AD, living at home may

improve the care they receive; however, it may increase

responsibilities for the family members. Functional decline,

forgetfulness and communication problems resulting from AD

can lead to misunderstandings between the patients and their

caregivers. Moreover, these problems cause inability in

persons with AD to properly cooperate with their caregivers

(Wangblad et al. 2009). Caring for persons with AD is not

only a heavy physical workload, but also creates psycholog-

ical suffering for family caregivers (Thomas et al. 2002).

Iran is one of the ancient countries in the Middle East,

representing more than 2500 years of civilisation. Its popu-

lation is about 70 million, 5Æ2% of whom are aged over

65 years and the life expectancy is 71 years at present. More

than 95% of the Iranian population is Muslim (Iranian

Government Statistics website, http://www.amar.org.ir;

accessed 21 August 2010). Iranian culture emphasises altru-

ism and strong family ties as two basic values. This makes

Iranians feel more committed to relatives, especially when a

member experiences an illness. These characteristics of

Iranian culture make the experience of giving care to a family

member a unique one. Currently, there may be nearly 212,000

people living with dementia in Iran (M Salehi, Iran Alzheimer

Association, Tehran, Iran, personal communication). Despite

the large number of persons with AD in Iran, there is just one

organisation to provide services and support, because there

are obstacles to funding and organising such foundations. The

Iran Alzheimer Association (IAA) is the only voice for people

with the various forms of dementia, most notably persons

with AD and their caregivers. The IAA, located in Shahrak

Ekbatan in the western part of Tehran, Iran, was founded in

2001 and registered as a non-governmental organisation. The

association is engaged in the following activities: rising public

awareness, clinical and rehabilitative activities and other facet

of activities such as counselling and education. However, at

present, only caregivers living in the western area of Tehran or

near the IAA are able to access these support services; other

Iranian caregivers are without outside support.

Family caregiving can be a satisfying experience, but it can

also create a range of physical, emotional and financial

demands that place family members at risk for negative

outcomes (Wu et al. 1999). Relatives and other people closest

to the person with dementia take on the greatest responsi-

bilities (Kitwood 1999), and the experience can be described

as devastating and burdensome (Butcher et al. 2001). Also,

the experience of caregiving is deeply cultural-dependent

(Hinton 2002). Several studies have mentioned how contex-

tual and cultural factors influence caregiving experiences

(Salguero et al. 1998, Foley et al. 2002, Kabitsi & Powers

2002, Boggatz & Dassen 2005, Pinquart & Sorensen 2005).

For example, Salguero et al. (1998) have reported that the

Guatemalan caregivers had lower levels of perceived health,

higher levels of burden and more informal supports than the

US counterparts. Pinquart and Sorensen (2005) have reported

in their meta-analysis that ethnic minority caregivers had

stronger filial obligation beliefs and provided more care than

the white caregivers. They also have reported that the Asian-

American caregivers used less formal support than the white

caregivers and African-American caregivers had lower levels

of burden and depression than the white caregivers. It seems

that contextual variables, tradition and ideology, social

resources, stressors and coping strategies influence on care-

giving experiences.

Respect for old people seems to be very important in

Iranian culture. However, there are limited support services

for Iranian families caring for a person with AD. Therefore, it

is important to understand the experiences of caregivers, as

well as discover the family members’ feelings, difficulties and

any possible rewards. To date, there is no literature available

on Iranian families practicing home care for persons with

AD. This article focuses on illuminating the most important

aspects of experiences of Iranian family caregivers when

caring for a family member with AD.

Methods

This qualitative study was conducted using a hermeneutic

phenomenological approach. A qualitative approach was

chosen because it describes lived experiences, gives meaning

to them and increases the understanding of human experi-

ences (Burns & Grove 2007). As many researchers have

mentioned (Van Manen 1996, Creswell 1998, Patton 2002,

Struebert & Carpenter 2003, Grbich 2007), the results of

phenomenological research reveal meaning embedded in

experiences. The nature of language and meaning in life

experiences can be considered in depth (Heidegger 1962).

The lived experiences of family caregivers of persons with AD

are highly subjective and can be deeply understood by a well-

designed qualitative approach. Van Manen (2001) suggests

six research activities for conducting hermeneutic phenome-

nology research, which are used in this study:

Activity 1: Returning to the nature of the lived experience. To

make sense of a certain aspect of human existence, the

researcher is committed to deeply question the phenome-

non under study.

Activity 2: Investigating the lived experience. Searching lived

experience material everywhere in the life world.

Carer perspectives Lived experiences of Iranian caregivers of persons with AD


Journal of Clinical Nursing, 21, 1078–1086 1079

Activity 3: Reflecting on the essential themes that characterise

the phenomenon. In this activity, the researcher reflects on

the lived experience to grasp its special significance.

Activity 4: Writing activity. The researcher describes the

phenomenon through the art of writing and rewriting.

Performing research in a phenomenological sense is to

bring something thoughtfully to speech most commonly

through writing.

Activity 5: Maintaining a strong and focused relationship to

the phenomenon. The researcher fully, not superficially,

understands the phenomenon.

Activity 6: Balancing the research context by considering the

parts and the whole. This requires stepping back frequently

to look at the whole, while checking the contributions of

the parts in producing the total (Van Manen 2001).

Participants

Participants were recruited to the study based on purposive

sampling (Morce 1994). The main criterion for inclusion was

the experience of caring for a family member with AD, the

phenomena under the study (Evans & Hallett 2007). Other

inclusion criteria were the ability to communicate verbally

and willingness to participate in the study. Family caregivers

of persons with AD who had been registered with IAA were

contacted by the first author. The information about the

study was given to the family care givers and they were asked

whether they would like to participate in the study. All of

them (n = 8) agreed to participate in the study. An appoint-

ment was scheduled for conducting the interview. The

participants included seven women and one man aged

between 25–67 years (Mean = 48Æ75, SD 15Æ42). Three

participants had university education, three of them had

completed secondary education and two participants had less

than secondary education. Participants of this study were five

daughters who provided care for their mothers, two women

who cared for their husbands and one man who cared for his

wife, with a length of caregiving between 1–11 years

(Mean = 4Æ37, SD 3Æ29). All of the participants were primary

caregivers, and they occasionally have been supported by

other family members in their caregiving roles.

Data collection

Semi-structured interviews were conducted with the primary

research question, ‘What is the meaning of caring for a family

member with Alzheimer’s disease?’ The participants were

asked to tell their stories in their own words based on their

lived experiences. The researcher delved into participants

responses using questions such as, ‘When you mention …

what do you mean? Could you give an example about that?

Would you please explain more?’

Initially, the researcher met with every participant in the

IAA location. The interviews, which were carried out in

the participants’ homes and in the IAA, lasted between

63–115 minutes. Five participants were interviewed during

single sessions and three participants were interviewed during

two sessions. At the end of interviews, the researcher thanked

the participants for sharing their experiences and scheduled

the next interview, if any. On the same day of the interview, the

researcher transcribed the tape recording and reviewed it

repeatedly with frequent stops. Overall, 11 interviews with

eight participants were performed and the interview process

continued until no new theme emerged. The interviews were

performed, audio-taped and transcribed by the first author in

the native language of the participants and the interviewer,

which is Persian. Each interview was transcribed verbatim by

Jet Audio Lyric Maker and then converted to Rich Text

Format for MAXQDAMAXQDA software (VERBI GmbH, Marburg,

Germany), which was also used to facilitate data management.

Ethical consideration

The study was approved by the ethics committee of Tehran

University of Medical Sciences. All participants were

informed in writing and verbally about the study and gave

written consent before engaging in the interview. Participants

were able to terminate their participation at will. The

researcher served as a contact person for all participants,

via telephone and e-mail, for questions or new information.

Also, the identities of the participants and their interviews

were kept confidential with a number-based identification

system.

Data analysis

Analysis of data was followed by activities 3–6 of the

methodology suggested by Van Manen (2001).

Hermeneutic reflection

Each transcription was read several times, and a short

description was written using a holistic approach. Thematic

trends and particularly essential or revealing information

were noted using a phenomenological approach. The selec-

tive approach was used to isolate thematic statements. The

researchers read the transcripts several times and asked what

statement(s) or phrase(s) seem particularly essential or

revealing about the caring experience described by the family

caregivers. The researchers highlighted these statements and

treated them as thematic statements. After general themes

E Navab et al.


1080 Journal of Clinical Nursing, 21, 1078–1086

were identified, they were clustered and similarities between

texts were identified. Finally, cluster of themes were merged

and classified. Interpretation of the interviews involved

moving back and forth between the whole and parts to

allow understanding, comparison and critical reflection on

the text.

Hermeneutic writing

Collaborative analysis was performed by presenting pre-

liminary findings to co-researchers for discussion. Free

imaginative variation was used to differentiate and verify

essential and incidental themes. To achieve depth, the infor-

mation was analysed at length.

Maintaining a strong and oriented relation

The researchers empathised with the participants and used

the experience to interpret, explain and understand caring for

a family member with AD.

Balancing the research context by considering parts and

whole

During research process, the researchers ‘stepped back’ fre-

quently and several times looked at the whole and context

given and analysed how each part contributed to the total

(Van Manen 1990).

Trustworthiness

To meet the criteria of a rigorous study, we conducted all

activities based on our initial research design. The trustwor-

thiness of qualitative research is based on four criteria:

credibility, transferability, dependability and conformability

(Lincoln & Guba 1985). In our study, credibility was

facilitated by presenting preliminary findings to a group of

expert faculty in research methodology at a seminar. When

the researchers considered some activities to improve cred-

ibility, dependability was addressed. Transferability would be

judged by the audience based on the overall description of the

findings. Further, audit trail and evidence that supported

interpretations and dependability were provided. In addition,

the descriptions of themes were returned to some participants

for member checking.

Results

The main theme ‘Captivity in the whirlpool of time’ included

two subthemes: ‘reminiscence of the past’ and ‘fear of the

future’. In our study, the family caregivers of persons with

Alzheimer’s disease frequently recalled past circumstances

and compared them with the present conditions, leading to

feelings of guilt, sorrow and fear. These family caregivers

experienced not only sorrows and regrets from the reminis-

cence of the past, but also fear of the future, because they

were afraid of the inevitable worsening of the loved one’s

condition and their own future suffering. This destructive

cycle, along with constant futile comparisons, is continual

during care and leads to depletion of the caregivers’ energy

and an intensification of negative mental states.

Reminiscence of the past

The caregivers participated in our study stated that their

loved one with AD dwelled on the past and relived events

with places or people from the past. As these caregivers and

the persons with AD were relatives and shared many

common experiences, the caregivers also relived memories

of the past, which brought up sorrow and pain.

Participant No. 3 says, ‘My mother asks many questions.

Most frequently she remembers the past and thinks that the

past is now…when I take care of her it seems that she brings

me into the past with her…’

Participant No. 5 states: ‘My wife constantly thinks about

the past and asks about that time. Sometimes, she mentions

something or someone and I cannot remember them… I think

about the past inadvertently, in order to be able to answer her

questions… I feel sad… but I have no other option’.

These caregivers often reflected on the past abilities and

conditions of their loved one and compared them with the

present abilities; however, dwelling on the past and making

such comparisons created nothing but worry and sorrow. On

the other hand, the fading off the person with AD and the

caregivers’ past experiences was much painful associated

with a world of languish and sorrow for caregivers.

Participant No. 3 tearfully states, ‘My mother’s acts and

behaviors have changed a lot compared with the past.

Previously, she was a reasonable, authoritative woman…but now she forgets everything. She even does not remember

whether she has eaten or not. She cannot speak well and she

forgets what she wanted to say. I compare who she is now

with who she was in the past and feel sorrow. I think of the

good days we had then but now I constantly feel sad’.

Participant no. 5, who takes care of his spouse, says, with

sadness, ‘I always compare our past with how it is now. How

she was then...But now… she is different from whom she was

before. She was very active. For example, she wove the

carpets of our home, with her own hands…but now… look at

her situation’.

Caregivers in this study often scrutinised the past to find

the cause of their loved one’s illness. They constantly

questioned how their loved one’s illness could have happened




and reflect on how it changed their lives. Also, in stressful

times, caregivers may see such events as punishment for their

own or their loved ones past sins. This starts a cycle of blame

for their perceived failings and they attempt to rectify their

past sins of omission.

Participant No. 5 says, in that regard, ‘For example,

sometimes she defecates or urinates several times and…some

nights I may have to turn on the washing machine twice.

When such events occur, I think, O’ my God! I have not

mistreated anybody in the past, so why must she have this

illness or have such a problem??!!’

Another participant, No. 4, states, ‘Sometimes I take her

out in my car; she always thinks about 50 years ago. She

shouts, insults and annoys me so much that I become

regretful of taking her out. I always reflect on the past and

feel guilt. I say to myself, ‘if, in the past, when I went to work

and was too busy, maybe if I spent more time with her,

perhaps she would not have gotten depressed and so perhaps

it was me who made her ill’.

Participant No. 8 tearfully states, ‘She wakes up in the

morning and asks me where my father is. I don’t know what

answer to give since my father died 15 years ago. I become

truly annoyed at explaining this to her. Because it seems that

these memories repeat for me, too, everyday. When my father

died, we did not let our mother come to the hospital and see

him. Now, sometimes I think that since my mother didn’t see

that scene, she still thinks that my father is alive, or perhaps if

we had let her to see my father’s corpse then, now she would

not act this way, I don’t know…?’

Caregivers who participated in this study often blamed

themselves if there was a delay in the diagnosis of illness for

their loved one, resulting in feelings of guilt. In most interviews,

as well as in the supportive sessions of the Alzheimer

Association, caregivers frequently mentioned that their family

member was ill long before showing clinical symptoms;

caregivers may feel guilty for not having been aware of the

AD in their loves one. Therefore, in our participants’ experi-

ences the delay in diagnosis causes guilt, regret and self-blame.

In this regard, participant No. 5 says, ‘She has been taking

these drugs (Alzheimer’s drugs) since two years ago. I swear

God that If I had noticed two years ago that she is so, I didn’t

let it to proceed so …. For example, I didn’t let him be lonely.

I didn’t let him sorrow’.

Another participant, No. 6, states, ‘At first it was very

difficult for me to take care of her. I couldn’t believe what

was happening. When I didn’t know what was causing my

mother’s difficulties, it made me angry. I asked, what was the

matter with her? About 18 months ago, when she was

seriously ill, she began hurting herself or beating my father or

was aggressive. The doctors didn’t say what the matter with

her. Perhaps, if I knew what her problem was earlier, I could

have done something for her’.

Fear of the future

According to caregivers who participated in our study, taking

care of a family member with Alzheimer’s disease was

naturally associated with the fear of future; the fear of future

decline of the loved one’s condition and the fear of self

suffering from AD in the future.

Fear of the future decline in the loved one’s health

Affectionate relationship between family members in Iranian

culture results in worrying about each other if illness has been

occurred for one of them. According to our participants,

someone who undertook care of a relative with AD tended to

be more sensitive than someone who had no relationship

to the patient. Thus, a family member caregiver would give a

great deal of physical and emotional energy. They believed

that spending so much time, energy and care while failing to

observe any improvement in the loved one’s condition

because of the progressive and unpredictable nature of the

illness produces fear about the decline of the person with

AD’s condition. Also, the unpredictability of the illness leads

to a future full of fear and ambiguity for them. Additionally,

as caregivers in our study stated, reports of other persons in

more advanced stages of AD caused them to be fearful not

only of their relative’s future but also of their own.

Participant No. 6 says, weeping, ‘She is worse than a child,

since surely a child grows up… but it is not the case for her

and there is the chance of her case deteriorating in the future.

You love someone and see that she is ill, my own life is

jeopardised and I am concerned about my own future – I

don’t know whether my patient remains alive in the current

situation or not. I am always worried… This is a reality

(copious weeping)’.

Participant No. 2, who takes care of her husband, says, ‘It’s

like you have something antique. Like an old vessel or a ring.

I say to myself ‘take care of him’ and for that reason I have no

peace of mind at all. I am always filled with dread – for

examples, he snorts at night, but if one night he does not

snort, I tell to myself, perhaps something has happened to

him. I get up to see whether he is breathing or not….’

Participant No. 7, who takes care of her mother, says, ‘For

example, one morning I woke up and heard her calling only

my name. She constantly said, ‘A…?!’, ‘A…?!’ I was scared

that she could no longer speak. But two to three minutes

later, she said the next word. I relaxed and thanked God that

she still speaks. I always expect a decline of the patient’s

E Navab et al.



status. This stress is always with me, that the patient may lose

her abilities and it’s unpredictable’.

Participant No. 6 says, ‘Now I am giving care…but I have

felt despair since… for instance, I hear that other patients

with the same illness got worse with time or lost control of

their urination or bowels, this causes fear in me’.

The caregiver’s fear of developing AD in the future

According to our participants, observing the decline of a

loved one, who at one time was self-supporting and cogni-

sant, caused doubts in the caregiver’s mind about their own

life and health. As they mentioned, witnessing the shift in a

family member from a capable healthy person to someone

who has forgotten, little by little, his own name, his own past

and identity and even his wife and children and needs the care

of others, creates the fear that they too will develop the dis-

ease. The increased fatigue from caretaking will only increase

the fear, compelling the caretaker to constantly dwell on the

possibility of their suffering from AD. It is noteworthy that

the caregivers’ knowledge deficit and limited information

about causes of AD, particularly the role of family history,

contribute to their fear of the disease, especially if the care-

giver is related to the person with AD, such as children who

care of their parents.

In that regard, participant No. 3, who takes care of his

mother, says, ‘Sometimes I get tired from caretaking… I

think it seems that I too sometimes forget things. When this

occurs, really, I think that perhaps I too am suffering from

AD’.

Participant No. 1 says, ‘Sometimes I get tired of giving

care, I get into a bad state of mind. I become pessimist about

myself and everything else. I can’t think well. That is, I am

afraid most of the time, even of my own future. I really am

afraid of the disease and think that it is likely that someday I

will have AD’.

Participant No. 2 indicates, ‘Since I began taking care of my

mother, I fear that perhaps AD will happen to me, too. I am

afraid of it happening to me since it will ultimately affect us’.

The first author has seen repeatedly that caregivers caring

for their ill parents raised questions in several support

sessions, such as, ‘will we suffer from the disease in the

future?’ Or they often asked about the prevention from AD,

which may indicate their fear of suffering from Alzheimer’s in

the future.

Discussion

The expression ‘captured in the whirlpool of time’ encom-

passes the negative consequences of caregiving for the

caregivers of people with AD. The relationship of the

caregiver to the parent or spouse, who afflicted by AD

creates ample stress and pain for the caregiver, especially with

the loved one’s decline from this progressive disease and no

improvement in her/his health. These non-professional care-

givers spend a great deal of time and energy for caring their

loved ones with AD, while they have little information or

support services. Caretaking is not only a physically difficult

work but also creates mental and emotional stress. Caring for

a person with AD is associated with unique stresses such as

depression, fatigue, feeling loneliness, despair and isolation,

possibly leading to suicide and homicide for caregiver (Cohen

2000). Also, Svanstrom and Dahlberg (2004) mention that

caring for people with dementia is living with constant

uncertainty.

In Iranian culture, strong affectionate relationships

between family members, commitment to the family and

loving adults, in addition to social expectations are motiva-

tional factors for caring a family member afflicted by AD. As

mentioned before, respect for older people is important in

Iran because of their supportive role, authority and credi-

bility in family. Iranian people believe that older family

members have unique experiences that are valuable, practical

and useful. These beliefs and strong relationship in the

family are strength point of Iranian culture, which creates

great deal of pressure and stress for the caregivers while

observing their family member weakness and decline related

to the AD.

According to the findings of our study, the caregivers of

persons with AD have strong feelings of anguish and sorrow

caused by losing their loved one to their ‘return to the past’.

The caregivers relive the past while caring for or interacting

with the person with AD. With progress of the disease, the

comparison of the stressful conditions at present with the

more stable conditions of the past leads to feelings of pain

and sorrow in the caregivers. The caregivers also suffer from

loss of companionship because of the reduction in the quality

of communication with the person with AD and the loss of

reciprocal communication (Schneider et al. 1999). It is

noteworthy that this constant travel to the past leaves the

caregivers unaware of the present, which may strongly affect

their quality of life. AD also creates instability for both the

afflicted person and the caregiver, resulting in the impossi-

bility of past standards of performance and leads to funda-

mental changes in the physical, emotional and social status of

the caregiver (Furlong & Wuest 2008).

The caregivers frequently took a trip to the past for the

cause of their loved one’s illness, possibly in an attempt to

escape from the present situation by removing the cause of

illness. In difficult times during care, they regarded these

stressful conditions as punishment for their sins in the past.




Whereas all of our participants were Muslim, it seems that

this thought is rooted in their religious culture. A strong belief

in Iranian religious culture is that encountering difficulties

and hardships may be results of past sins (Babamohamadi

et al. 2011).

No study reported on the caregivers’ return to the past,

their feelings of anguish and sorrow, the search for the cause

of illness and their feelings of guilt and failure. Perhaps this is

because of the limited number of studies in a similar cultural

context to that of Iran.

Although there can be a more than two-year delay in

diagnosis of AD, with multiple factors involved (Rochester

2006), available literature makes no mention of the feelings

of negligence and guilt in family caregivers of persons with

AD because of the delay in awareness of the diagnosis of

the disease. According to the findings of our study, despite

the afflicted person’s and the caregivers’ right to know the

diagnosis and progress of the disease, there is, unfortu-

nately, often a delay in informing them. This may be

related to the nature of the disease or the cultural and legal

considerations in our country. However, as mentioned by

the participated caregivers, this delay leads to the feelings

of negligence and guilt. The caregivers believed that if they

knew their loved one’s problem earlier, changes could have

been made to prevent side effects or minimise the progress

of disease.

It seems that lack of knowledge about insidious nature of

the AD and its pathology and the disease process, as well as

strong relationship between family members, is a contribut-

ing factor to the Iranian caregivers’ stress and negative

feelings related to reminiscence of the past. It is noteworthy

that searching the past to find the cause of the illness and

trying to remove it by the caregivers and the feelings of guilt

at not to be aware of diagnosis of the disease to prevent or

minimise the progress of it may be due to the caregivers’

lack of knowledge about the nature and process of AD.

Furthermore, the caregivers’ feelings of anguish and sorrow,

caused by losing loved one to ‘return to the past’, and

related stressful conditions while they feel caring as punish-

ment for their sins in the past are rooted in Iranian cultural

beliefs.

As found in our study, the care of family member with AD

in nature is associated with fear of the future via two

components: a fear of the decline of their loved one’s

condition and the fear of getting AD themselves. The large

amount of time and energy spent for caring an ill family

member, without any sign of improvement because of the

progressive and unpredictable nature of the illness, produces

the caregiver’s fear of the decline of the loved one’s

condition. In that regard, Cohen have also reported that

uncertainty about the future is a factor affecting caregivers

and families of persons with AD because of the uncontrol-

lable and unpredictable conditions of these persons (Cohen

2000). The caregivers’ fears owing to various causes, includ-

ing the fear of an accident happening to the person with AD,

is a common feeling (Vellone et al. 2002), along with the

anxiety of caregivers because of the risky behaviours of the

afflicted person because of the cognitive dysfunction (Liken

2001).

The fear of acquiring AD is the other component of ‘fear of

the future’. The caregivers may suffer from temporary

forgetfulness because of the increasing fatigue and stress

from caregiving; when combined with their family history,

this leads to the fear that they too will suffer from AD. Also,

fatigue and loneliness exaggerate these negative thoughts in

the mind of the caregiver. The caregivers constantly compare

the past with the present condition of the loved one with AD

and visualise similar future changes for themselves, which

induces fear. In this regard, caregivers’ lack of knowledge

about the disease process, the risk factors and limited access

to services and support contribute their fear.

It is noteworthy that, despite Cohen’s (2000) reference to

the unique stresses and difficulties for caregivers of persons

with AD, literature reviewed by the authors revealed no data

about the fears of caregivers for the above-mentioned

reasons.

As previously stated, this article reports one of the most

important themes of our phenomenological study. While the

findings of our study showed both positive and negative

aspects of caring persons with AD, ‘captured in a whirlpool

of time’ reported in this article mainly contains negative

aspects of this phenomenon.

Limitations

This study was performed on a limited number of caregivers.

The small sample size and the nature of the study limited the

ability to generalise the results. However, as with all quali-

tative studies, the results were not intended to be generalised.

Nevertheless, the results of this study add to the body of

knowledge in this area.

Conclusions

Understanding of the experiences of caregivers and their

feelings, needs and difficulties can lead to the development of

supportive strategies to alleviate their stress. The results of

this study showed the necessity of education and supportive

services for the family caregivers caring for a person with AD

in Iran. It is crucial to raise awareness of the caregivers about

E Navab et al.



the nature, symptoms, risk factors and process of AD and

finally develop supportive services for the caregivers to lessen

their negative feelings.

Relevance to clinical practice

Nurses are the front line to support and provide information

for family care givers in healthcare systems. Our findings can

be used by nurses to consider and alleviate the negative

consequences of caregiving for caregivers of persons with

AD. Our findings can also help healthcare practitioners

to consider cultural competence and person-centred care

in their interactions with persons with dementia and their

caregivers.

Acknowledgements

The authors are deeply grateful to the participants for sharing

their experiences and the IAA’ staffs for their support and

cooperation. This study was part of a PhD thesis supported

by Tehran University of Medical Sciences.

Contributions

Study design: EN, RN, HP; data collection and analysis: EN,

RN, HP and manuscript preparation: EN, RN, HP.

Conflict of interest

The authors declare that they have no conflict of interest.

References

Alzheimer’s Association (2010) Alzheimer’s

disease: facts and figures. Alzheimer’s

& Dementia 6, 158–194.

Babamohamadi H, Negarandeh R & Deh-

ghan-Nayeri N (2011) Coping strate-

gies used by people with spinal cord

injury: a qualitative study. Spinal Cord

49, 832–837.

Boggatz T & Dassen T (2005) Ageing, care

dependency and care for older people in

Egypt: a review of the literature. Jour-

nal of Clinical Nursing 14, 56–63.

Burns N & Grove SK (2007) Understanding

Nursing Research: building an Evi-

dence-Based Practice. Saunders Else-

vier, St Louis, MO, USA.

Butcher HK, Holkup PA & Buckwalter KC

(2001) The experience of caring for a

family member with Alzheimer’s dis-

ease. Western Journal of Nursing

Research 23, 33–55.

Cohen D (1999) Family systems and care-

giving: opportunities for research and

application in the new millennium.

Journal of Mental Health and Aging 5,

203–206.

Cohen D (2000) Caregivers for persons with

Alzheimer’s disease. Current Psychiatry

Reports 2, 32–39.

Creswell JW (1998) Qualitative Inquiry and

Research Design: choosing among Five

Traditions. Sage, Thousand Oaks, CA,

USA.

Evans MJ & Hallett CE (2007) Living with

dying: a hermeneutic phenomenological

study of the work of hospice nurses.

Journal of Clinical Nursing 16, 742–

751.

Ferri C, Prince M, Brayne C, Brodaty H,

Fratiglioni L, Ganguli M, Hall K,

Hasegawa K, Hendrie H, Huang Y,

Jorm A, Mathers C, Menezes P, Rim-

mer E & Scazufca M (2006) Global

prevalence of dementia: a Delphi con-

sensus study. The Lancet 366, 2112–

2117.

Foley KL, Tung HJ & Mutran EJ (2002)

Self-gain and self-loss among African

American and white caregivers. The

Journals of Gerontology Series B: Psy-

chological Sciences and Social Sciences

57, S14–S22.

Furlong KE & Wuest J (2008) Self-care

behaviors of spouses caring for signifi-

cant others with Alzheimer’s disease:

the emergence of self-care worthiness as

a salient condition. Qualitative Health

Research 18, 1662–1672.

Grbich C (2007) Qualitative Data Analysis:

an Introduction. Sage Publications Ltd,

London.

Health Canada (1997) Canada health

action: building on the legacy – volume

II – synthesis reports and issues papers.

Heidegger M (1962) Being and Time. Har-

per and Row, New York.

Hinton L (2002) Improving care for ethnic

minority elderly and their family care-

givers across the spectrum of dementia

severity. Alzheimer Disease & Associ-

ated Disorders 16, s50–s100.

Kabitsi N & Powers DV (2002) Spousal

motivations of care for demented older

adults: a cross-cultural comparison of

Greek and American female caregivers.

Journal of Aging Studies 16, 383–399.

Kitwood T (1999) Dementia reconsidered:

the person comes first. British Medical

Journal 318, 880.

Liken MA (2001) Caregivers in crisis:

moving a relative with Alzheimer’s to

assisted living. Clinical Nursing

Research 10, 52–68.

Lincoln YS & Guba EG (1985) Natural-

istic Inquiry. Sage Publications Inc,

London.

Morce J (1994) Critical Issues in Qualitative

Research Method. Sage Publication,

Thousand Oaks, CA, USA.

Patton MQ (2002) Qualitative Research

and Evaluation Methods. Sage Publi-

cations Inc, London.

Pinquart M & Sorensen S (2005) Ethnic

differences in stressors, resources and

psychological outcomes of family care-

giving: a meta-analysis. The Gerontol-

ogist 45, 90–106.

Rochester NY (2006) The Experiences of

Alzheimer’s Caregivers. Available at:

www.harrisinteractive.com/news/allnews

bydate2009.aspnewsID=1061 (accessed

21 August 2010).

Salguero RH, Kohn R, Salguero LF &

Marotta CA (1998) Caregivers of per-

sons with Alzheimer’s disease: cultural

differences in perceived caregiver bur-

den in Guatemala and Rhode Island.

Journal of Cross-Cultural Gerontology

13, 229–240.

Schneider J, Murray J, Banerjee S & Mann

A (1999) EUROCARE: a cross-national

study of co-resident spouse carers for

people with Alzheimer’s disease: I –

factors associated with carer burden.




International Journal of Geriatric Psy-

chiatry 14, 651–661.

Struebert J & Carpenter DR (2003) Quali-

tative Research in Nursing, 3rd edn.

Lippincott, Williams &Wilkins, Phila-

delphia, PA, USA.

Svanstrom R & Dahlberg K (2004)

Living with dementia yields a heter-

onomous and lost existence. Western

Journal of Nursing Research 26, 671–

687.

Thomas P, Chantoin Merlet S, Hazif

Thomas C, Belmin J, Montagne B,

Clement J, Lebruchec M & Billon R

(2002) Complaints of informal care-

givers providing home care for

dementia patients: the Pixel study.

International Journal of Geriatric

Psychiatry 17, 1034–1047.

Van Manen M (1990) Researching Lived

Experience. Human Science for Action

Sensitive Pedagogy. State University of

New York Press, Albany, NY, USA;

Althouse, London, UK.

Van Manen M (1996) From meaning to

method. Qualitative Health Research 7,

345–369.

Van Manen M (2001) Researching Lived

Experience. Human Science for an

Action Sensitive Pedagogy. Suny Press,

London, ON, Canada.

Vellone E, Sansoni J & Cohen MZ (2002)

The experience of Italians caring for

family members with Alzheimer’s dis-

ease. Journal of Nursing Scholarship

34, 323–329.

Wangblad C, Ekblad M, Wijk H & Ivanoff

SD (2009) Experiences of physical

strain during person transfer situations

in dementia care units. Scandinavian

Journal of Caring Sciences 23, 644–

650.

Wu H, Wang J, Cacioppo JT, Glaser R,

Kiecolt-Glaser JK & Malarkey WB

(1999) Chronic stress associated with

spousal caregiving of patients with

Alzheimer’s dementia Is associated

with downregulation of B-lymphocyte

GH mRNA. Journals of Gerontology.

Series A, Biological Sciences and Med-

ical Sciences 54, 212–215.

The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of

clinically related scholarship which supports the practice and discipline of nursing.

For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http://

wileyonlinelibrary.com/journal/jocn

Reasons to submit your paper to JCN:High-impact forum: one of the world’s most cited nursing journals and with an impact factor of 1Æ228 – ranked 23 of 85

within Thomson Reuters Journal Citation Report (Social Science – Nursing) in 2009.

One of the most read nursing journals in the world: over 1 million articles downloaded online per year and accessible in over

7000 libraries worldwide (including over 4000 in developing countries with free or low cost access).

Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur.

Early View: rapid online publication (with doi for referencing) for accepted articles in final form, and fully citable.

Positive publishing experience: rapid double-blind peer review with constructive feedback.

Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley

Online Library, as well as the option to deposit the article in your preferred archive.

E Navab et al.



Documents

Lived experiences of Iranian family member caregivers of persons with Alzheimer’s disease: caring as ‘captured in the whirlpool of time’