Grief in caregivers of persons with Alzheimer’s disease and related dementia: A qualitative synthesis

Abstract

This article provides a meta-synthesis of studies focusing on grief in caregivers of people with Alzheimer’s disease or related dementia. Through a systematic search, 11 articles met the inclusion criteria that care receivers had a diagnosis of Alzheimer’s disease or related dementia, caregivers were informal caregivers, and the study focused on caregiver grief. The meta-synthesis followed a meta-ethnography approach based on reciprocal translation. Six themes were identified, namely challenges of caregiving, losses and changes in the relationship, the role of dementia in grief, striving despite dementia, utilising social support and death as a relief from caregiving. Themes are discussed within an integrated framework showing the connected relationships between themes. The devised framework of themes illustrates the general experience of caregiver grief and can be used to devise specific, targeted interventions to help caregivers to identify and work through their grief.

Keywords

dementia caregiving grief qualitative

Introduction

An estimated 35.6 million people live with dementia worldwide and by 2050 this figure is projected to reach over 115 million people (Wimo & Prince, 2010) with Alzheimer’s disease (AD) being the most common form of dementia (Alzheimer’s Disease International, 2009). An estimated 50–70% of people with dementia are described as ‘needing care’ and of those who need care, most need ‘much care’ (Prince & 10/66 Dementia Research Group, 2004). Ninety four per cent of caregivers are relatives with 21% living in the same home as the person being cared for (National Alliance for Caregiving & AARP, 2009) spending an average 7.4 hours a day caregiving (Wimo, Winblad, & Jonsson, 2007).

While a substantial amount of literature has noted caregiver depression (Schulz et al., 2003), burden (Almberg, Grafstrom, & Winblad, 2000) and psychological difficulties (Grant et al., 2002; Pearlin, Mullan, Semple, & Skaff, 1990), there has been relatively little focus on caregiver grief. Reference to caregiver grief was first made by Mace and Rabins (1981) in ‘The 36-Hour Day’ who suggested that caregiver grief continues throughout caregiving. More recently, grief in caregiving has been described as the reaction to the perception of loss (Rando, 2000) and the constant, hidden companion of dementia (Doka, 2010). Grief can be accompanied by various other feelings such as sadness, guilt and anger (Rudd, Viney, & Preston, 1999) and it has been suggested that caregiver grief is often misdiagnosed as depression (Walker & Pomeroy, 1996).

Caregivers of persons with AD or related dementia may experience and grieve for a multitude of losses. These losses can include loss of relationship with the care receiver, loss of closure, loss of recreational activities, loss of future with the care receiver and in some circumstances the losses associated with using a nursing home (Williams & Moretta, 1997). Ross and Dagley (2009) found that caregivers of people with dementia felt nearly twice the amount of loss compared with caregivers of people with cardiac problems, indicating the large amount and nature of these losses are specific to caring for a person with dementia. Researchers have attempted to define and understand the impact of this experience of loss and broadly suggest two concepts of anticipatory grief and ambiguous loss. Each concept will be considered in more detail below.

Anticipatory grief

Anticipatory grief has been used to describe the grief experienced by caregivers of people with dementia who anticipate several and compounding losses over the course of the illness (Ponder & Pomeroy, 1996) and relates specifically to the grief that is experienced when anticipating losses (Rando, 2000). Rando (2000) argues that the purpose of anticipatory grief is to enable a discussion of dying, to work through any problems in the caregiver–care receiver relationship and prepare for death; all of which is usually impossible when caring for a person with dementia due to the actual losses in communication and personality change (Dempsey & Baago, 1998). However, Marwit and Meuser (2005) argue that grief in dementia caregivers is more similar to grief after bereavement as dementia involves actual losses as opposed to an anticipation of loss.

Ambiguous loss

Ambiguous loss is an alternative way of understanding caregiver grief focusing on actual loss. The term ‘ambiguous loss’ relates to the unique circumstances of experiencing psychosocial losses while the person with dementia is physically present (Boss, 1999) and it is for these reasons that dementia has been termed ‘dual dying’ (Jones & Martinson, 1992). Boss (1999) suggests this ambiguous loss creates change in the relationships and roles in the family system, creating a lack of clarity which provokes anxiety in the caregiver. Furthermore, the illness may be interspersed with periods of lucidity where the care receiver can appear to have regained some faculties, which can further complicate and impede the caregiver’s attempts to process and reconcile these losses.

Trajectory of caregiver grief

Following establishing the existence of grief in caregiving for a person with AD or related dementia, researchers have attempted to define the trajectory and changes in grief over the course of caregiving. Ponder and Pomeroy (1996) suggest that grief moves through various stages from denial to over-involvement, anger, guilt and finally acceptance while being most intense during the early and late stages of dementia. Meuser and Marwit (2001) suggest grief intensity varies depending on the relationship to the person with AD, where adult children caregiver’s grief is most intense in the early and late stages of the disease and spouse’s grief increases linearly.

The social stigma attached to grieving prior to the loved ones death and the lack of appropriate outlets and support for this particular type of grief (McEvoy, 2007; Walker, Pomeroy, McNeil, & Franklin, 1994) make caregiving for someone with AD or related dementia particularly complex and problematic, therefore it is imperative to further our understanding of this grief.

Current understanding

The qualitative literature regarding caregiver grief is a growing and compelling body of literature. Research in this area has detailed caregiver’s accounts of their experience of grieving while caregiving and the impact that dementia has on both themselves and the life of their loved one. Research has detailed caregiver experiences and grief from the moment of diagnosis to after the death of the loved one including people who care for their loved one at home or in residential settings. Given the breadth of experiences in the participants’ lives and the depth in which it is reported in the qualitative literature, the data on grief in caregiving encompasses a large range of experiences. There has been increased interest in developing ways of combining knowledge from individual qualitative studies via meta-synthesis (Atkins et al., 2008) which can help to reach a new conceptual understanding of an area and make findings more accessible to practitioners in the field (Finfgeld, 2003).

Aims

The main aim of this meta-synthesis is to provide a detailed and contextualised account of caregiver grief when caring for someone with AD or related dementia. The relatively recent focus in the literature on caregiver grief provides a platform through which to explore the nature and nuances of this grief in order to aid our understanding and develop appropriate support. Given the absence of policies detailing best practice for supporting caregivers in terms of grief, this review aims to suggest recommendations to inform future policy regarding the nature of grief that caregivers experience, and indicate ways in which services can support the caregiver and consequently improve the quality of life of the care receiver.

To preserve a focused account of caregiver grief in a dementia context, this meta-synthesis will focus caregivers of those who have AD or related dementia as the primary cause of their symptoms. This excludes conditions such as Down’s syndrome, Korsakoff’s syndrome and mild cognitive impairment which have symptoms similar to dementia, as the dementia in these cases is a secondary cause from a primary illness. Additionally, the meta-synthesis will focus on caregivers termed ‘informal caregivers’ where they have not been paid for the caregiving. Due to the high proportion of relatives as caregivers, focusing on informal caregivers captures a greater proportion of the typical population of caregivers for people with dementia.

Method

Search strategy

Literature searches were completed in April 2011 using databases EBSCO Academic Search Complete, CINAHL, PubMed, PsycInfo, Social Care Online and Web of Science. These databases were chosen to ensure a broad inclusion of articles from a wide variety of disciplines. The databases were searched using the following search terms and the searches combined using the Boolean operator ‘AND’.

Alzheimer*/dementia/pre senile/senile/neurodegenerative

Grief/griev*/bereave*/mourn*/loss

Qualitative/experience*/interview*

The retrieved articles were filtered to include only those written in English and published in a peer-reviewed journal.

Using this search strategy and filters, 2269 articles were identified. After removing duplicates, 1336 articles remained.

Inclusion criteria

To be included in the review, articles had to meet the following five inclusion criteria:

The cared for person must be/have been diagnosed with AD or related dementia.

The study must explore grief in caregiving, as opposed to exploring the general experience of caregiving of which grief/loss may be a theme.

The articles must report qualitative data.

The interviewees must be/have been caregivers for someone with AD or related dementia.

Caregivers must be informal caregivers, usually relatives, i.e. they have not been paid for caregiving.

Of the 1336 articles, 748 articles met the first inclusion criteria relating to AD or related dementia as defined in the ‘Introduction’ section. Articles that were excluded typically focused on conditions with dementia symptoms such as multiple sclerosis (Cheung & Hocking, 2004) or Down’s syndrome (Watchman, 2005). Of the remaining 748 articles, 59 met the second inclusion criteria relating to grief or bereavement. Articles that were not included explored the general experience of caregiving, for example Murray, Schneider, Banerjee, and Mann (1999), and O’Shaughnessy, Lee, and Lintem (2010). Of the remaining 59 articles, 16 met the third inclusion criteria by containing qualitative data that could be used in the synthesis. Articles that were not qualitative included Schulz, Boerner, Shear, Zang, and Gitlin (2006) and Walker and Pomeroy (1997). Out of these 16 articles, Snyder and Drego (2006) focused on grief of the individual with dementia whilst Bull (1998) focused on how losses affect the family and so were not included in the synthesis. All of the final 14 articles met the fourth and fifth inclusion criteria. Reference lists from the 14 articles were manually searched and no further articles were identified.

Of the final 14 articles that met the inclusion criteria, a further three were excluded from the analysis for reasons detailed below. A study by Ortiz, Simmons and Hinton (1999) was excluded as it focused on the ethnic context of caregiving, where grief was highlighted as an important consideration but was not the focus of the research and was not explored further. Frank’s (2007) study analysed participants’ responses to the question, ‘What would you say is the biggest barrier you have faced as a caregiver?’. Grief or loss was identified as a barrier but was not the focus and was not explored further. Wilhoite and Buschmann (1991) detailed a fictional account of a dementia caregiver and so was excluded from the final synthesis to ensure that the synthesis is based on realistic experiences of caregivers. Therefore, analysis was carried out on 11 studies.

Quality appraisal

To ensure an initial quality check, the search was limited to articles published in peer-reviewed journals. The 11 selected studies were appraised for quality using a checklist devised by Walsh and Downe (2006) to assess the transparency of the analysis process and the integrity and transferability of the findings. The 11 selected studies were deemed to have sufficient quality to be included in the final analysis.

Analysis

The analysis followed a meta-ethnographic approach as outlined by Noblit and Hare (1988). While this approach was identified over 20 years ago, it has been established as a leading method for synthesising qualitative health care research (Barnett-Page & Thomas, 2009). Meta-ethnography is a way of reanalysing data of published studies to produce a new interpretation where the final findings are greater than the sum of the parts. The data for the analysis are comprised of the reported participant quotations and the original author’s interpretations.

Initially the selected studies were repeatedly read and the author noted key phrases and concepts. The key phrases and concepts were listed and the author noted potential links. Related groups of concepts were given working theme titles. This was followed by what Noblit and Hare term ‘reciprocal translation’. While being aware of the early concepts and working themes, the authors read and reread all the studies and compared the data of each study to these emerging themes. Where subsequent reading revealed new data or new concepts, these data were incorporated into the emerging themes and the concepts and working titles redefined to suit the new data. When new themes were identified, studies were reread to compare their relationship with these new themes. This process continued until no new concepts or themes were identified.

The next process was to synthesise these translations. At this stage the authors had a list of themes of related concepts based on the data in the 11 studies. The authors studied each theme in turn and attempted to create new third-order constructs from the existing data; that is to consider the theme as a whole and interpret what the overarching message and understanding is represented by this theme. These third-order interpretations allow the meta-synthesis to go beyond what is present in the individual studies, and to report interpretations of the related concepts as a whole. Therefore the final themes are a product of subjective interpretations of the authors. Finally, each theme was given a title.

Results

Meta-synthesis of the data revealed six themes, namely: challenges of caregiving, relationship changes, the role of dementia in grief, striving, wider support and relief following caregiving. Each theme will be discussed individually in detail below. To preserve the context of the accounts, the authors detail demographic and methodological characteristics of the studies in Tables 1 and 2.

Table 1.

Demographic characteristics of the participants in the studies included in the synthesis.

Authors	Sample	Caregiver age range (years)	Care recipient age range (years)	Caregiver gender	Care recipient gender	Ethnicity of caregiver	Location of care
Adams and Sanders (2004)	99	28–89 (mean 59.07)	39–97 (mean 80.25)	30 male 69 female	30 male 69 female	55 Caucasian 31 African American 13 other	56 home 16 assisted living 22 nursing home 5 other
Almberg et al. (2000)	30	49–88 (mean 71)	84–100 (mean 91)	9 male 21 female	4 male 26 female	Not stated	Not stated
Collins et al. (1993)	82	Mean 66	Not stated	17 male 65 female	Not stated	Not stated	Not stated
Diwan, Hougham, and Sachs (2009)	87	Mean 61.5	Not stated	19 male 68 female	Not stated	55 African American 30 Caucasian 2 other	63 home
Dupuis (2002)	61	Majority in their 50 s or older	66–95 (mean 84.2)	23 male 38 female	16 male 45 female	Not stated	Long-term care facility
Furlini (2001)	3	43–54 (mean 47.33)	Not stated	3 female	Not stated	Not stated	Not stated
Jones and Martinson (1992)	13	38–76 (mean 58.85)	61–84	4 male 9 female	Not stated	Not stated	Not stated
Loos and Bowd (1997)	68	40–80 (mean 64)	Not stated	Not stated	Not stated	Not stated	Not stated
Sanders and Corley (2003)	253	Not stated	Not stated	71 male 178 female 4 unknown	105 male 139 female 9 unknown	Not stated	118 home 85 nursing home 44 assisted living 6 other
Sanders et al. (2002)	71	35–93 (mean 67.2)	48–94 (mean 78.2)	71 male	18 male 53 female	Not stated	26 home 33 nursing home 7 assisted living 5 other
Sanders et al. (2008)	44	41–90 (mean 65.18)	Not stated	6 male 38 female	Not stated	39 Caucasian, 5 unknown	24 home 20 long-term care facility

Table 2.

Methodological characteristics of the studies included in the synthesis.

Authors	Aims	Research design and analysis	Sampling	Interview
Adams and Sanders (2004)	Examined the differences in grief reactions and depression across the stages of AD.	Mixed methods Questionnaires and open-ended questions about grief	Random sample from the community database of a North-eastern USA urban area AD association	Written responses to ‘Are you currently grieving the loss of your loved one even though he/she is still alive?’
Almberg et al. (2000)	Examined the caregivers’ experiences before and after the death of the care receiver and the social support given	Part of the longitudinal study the Kungsholmen project. Analysed using qualitative content analysis	Caregivers had lost their relative between 1994 and 1998. Care receivers were inhabitants of a Stockholm district born 1912 or before	Interviews using open-ended questions based on caregivers’ experiences of the caring period, time after death and social support Most conducted in homes for 60 minutes
Collins et al.(1993)	Explored the relationship between pre-death experiences and post-death reactions	Part of a five-year longitudinal study Four coding categories identified. Coded transcripts were entered into a computerised database and themes identified	Mailing through local chapters of the AD association, Michigan association of adult day care centres, and health care agencies	Caregivers asked three open-ended questions regarding their experiences since the death of their relative, how losing a relative to AD is different, and any additional information
Diwan, Hougham, and Sachs (2009)	Explored grief across the trajectory of the caregiving period	Identified themes that occurred across cases to describe the data in terms of the temporal nature of grief and issues precipitating grieving	Care receivers attended one of two geriatric clinics affiliated with the University of Chicago hospitals and died between February 2000 and December 2001	25-minute telephone interview. Three questions: (1) Did you feel you grieved at times other than when the patient actually died? (2) If yes, what other times? (3) Why do you think you grieved at that time?
Dupuis (2002)	Caregivers’ experiences of ambiguous loss caring for a person with dementia living in long-term care	Grounded theory approach Transcripts had a modified member check then analysed using a modified constant comparative method	Selective sampling and theoretical sampling strategies for care receivers’ children living in southern Ontario, Canada	Active interviews by research author lasting 90 minutes
Furlini (2001)	Explored psychosocial death in the context of dementia caregiving	An article built around the stories of three caregiving daughters	Not stated	Article based around vignettes Unknown method of creating these vignettes
Jones and Martinson (1992)	Explored bereavement in dementia caregivers	Grounded theory approach	AD clinics and caregiver support groups in central California	Interviewed every six months over two years
Loos and Bowd (1997)	Experiences of loss in caregivers living in remote or isolated regions	Responses grouped according to themes	Survey through health and social service professionals, community agencies, and media in northwest Ontario	Open-ended question: ‘Describe the things you feel you have given up due to taking on the caregiver role.’
Sanders and Corley (2003)	Explored grief in caregivers of people with AD	Open coding followed by discussion with the researchers and themes identified. Themes discussed with outside researchers and modified	Survey sent to a chapter of the Alzheimer’s Association in northeast USA	Open-ended question at the end of a large quantitative study: ‘Are you grieving the loss of your loved one even though he/she is still alive?’
Sanders et al. (2002)	Examined grief among male caregivers of persons with AD	Open coding. Themes identified then discussed with outside researchers and modified	Survey sent to a Chapter of the Alzheimer’s Association in northeast USA	Open-ended question at the end of a large quantitative study: ‘Are you grieving the loss of your loved one even though he/she is still alive?’
Sanders et al. (2008)	Explored the nature of high and intense levels of pre-death grief in dementia caregivers	Grief scored using MMCGI-Short Form. Constant comparative method for interviews. Themes discussed with outside researchers and modified	Recruited from support groups sponsored by the Alzheimer’s Association, memory clinics, extended care facilities, and word of mouth	Set of questionnaires and a 30–90 minute interview. Questions based on personal reactions to grief, life changes, personal loss history, coping strategies and service needs

Challenges of caregiving

Caregivers experienced many challenges while caregiving including physical health changes and freedom restrictions. Difficulty managing these challenges often provoked feelings of guilt (Collins, Liken, King, & Kokinakis, 1993).

Many caregivers found caregiving physically exhausting and detrimental to their health: ‘I was stretched physically, emotionally and spiritually. Caregiving drained me, and I was exhausted’ (Collins et al., 1993, p. 244). ‘I was tired, couldn’t do anything more than look after him. I lost weight’ (Almberg et al., 2000, p. 84). The physical requirements of caregiving were particularly challenging for elderly spousal caregivers (Jones & Martinson, 1992). Lack of sleep through worry or caregiving duties was common (Adams & Sanders, 2004; Sanders, Ott, Kelber, & Noonan, 2008) and it was not uncommon for caregivers to be prescribed antidepressants (Sanders et al., 2008) or to access mental health services for difficulties associated with caregiving (Sanders, Morano, & Corley, 2002).

The significant time needed for caregiving subsequently led to a loss of freedom for the caregiver which was further detrimental to their physical and mental health. ‘It’s like everything is circled just around my husband and taking care of him’ (Sanders et al., 2008, p. 510).

Caregivers felt that they could no longer continue with their recreational activities (Adams & Sanders, 2004) and in some circumstances had to give up work either temporarily or completely (Loos & Bowd, 1997). Physical exhaustion and the caregiver’s lack of attention to personal needs led to emotional lability (Dupuis, 2002; Loos & Bowd, 1997).

Guilt and regret about a failure or difficulty in coping with these challenges were common (Jones & Martinson, 1992; Loos & Bowd, 1997) as stated by one caregiver, ‘He gets on my nerves. I holler at him and I shouldn’t’ (Sanders et al., 2008, p. 507), with many caregivers left wondering if they could have done more (Collins et al., 1993).

The physical demands and time-consuming nature of caregiving led to a lack of self-care where emotional reactions to caregiving are ignored. In this context, grief may be unacknowledged or inhibited.

Losses and changes in the relationship

This theme is characterised by the series of losses that impact the caregiver–care receiver relationship where the nature and extent of the losses are dependent on the stage of the disease. Early losses include a loss of shared activities where caregivers and care receivers can no longer participate in meaningful shared activities that they once enjoyed. As the disease progresses, there are further losses and changes in the care receiver’s personality and ability to communicate. Both these losses impact the interpersonal relationship between the caregiver and care receiver, and will be considered in more detail below.

Several and cumulative losses in personality occur as the dementia progresses. Caregivers described the experience as like caring for a stranger (Dupuis, 2002) as described here: ‘He looks like my dad, but does not act like him. I just consider myself to be living with an old man who I never knew’ (Sanders et al., 2002, p. 13). ‘She was always very well dressed and very polite. Now she doesn’t thank people … She was never like that’ (Sanders et al., 2008, pp. 506–507).

A loss in communication abilities of the care receiver can lead to the caregiver feeling as though they have lost a connection with the care receiver and lost the ability to comfort them and engage with them meaningfully (Adams & Sanders, 2004; Collins et al., 1993; Jones & Martinson, 1992). One caregiver simply stated, ‘Not being able to reach her is devastating’ (Dupuis, 2002, p. 102). The connection between communication and shared meaning is illustrated here: ‘The last six years of my mother’s life were not meaningful; she wasn’t able to share a thing’ (Furlini, 2001, p. 28). The loss of communication led to a perceived loss of intimacy: ‘I have lost my friend and lover…we just exist together and that is what causes me to grieve’ (Sanders et al., 2002, p. 10). Some caregivers attempted to continue the relationship with their loved one as they had previously, by continuing to do the things that their loved one enjoyed, taking care of their appearance, and including them in the family (Dupuis, 2002). Caregivers stated that over time, the function of these activities became more a comfort to themselves than to the care receiver.

Through the loss of communication, personality and the previous relationship, caregivers experienced a change in role. Often caregivers felt as though their loved one had taken on the child role and they had taken on the parent role: ‘I am slowly watching the man who was my father and all that role implies turn into a child…He cries, wets himself and now I rock him like a baby’ (Sanders & Corley, 2003, p. 47). Some role changes were so significant leading one caregiver to remark, ‘I don’t call her mum anymore’ (Dupuis, 2002, p. 104).

Overall, caregivers began to grieve the losses whilst concurrently attempting to continue a meaningful relationship with their loved one.

The role of dementia in grief

This theme captures the specific features of dementia and its impact on the caregiver and their grief. Caregivers described dementia as a ‘lingering death’ (Sanders et al., 2002, p. 11) and cited that the length of the disease and the slow deterioration in health of the care receiver made it particularly difficult to grieve: ‘It’s so slow, and it takes so many years that by the time it’s over you’re robbed of even treasuring your memories because the memories you need to treasure are from so long ago, and so buried’ (Furlini, 2001, p. 31). The length of the illness also made it more difficult for caregivers to continue to access social support: ‘It lasts so long your friends stop calling’ (Loos & Bowd, 1997, p. 507).

The physical presence of the care receiver set up the expectation that the caregiver could have a reciprocal relationship with them. However, as a consequence of the changes in personality and losses characteristic of dementia, the caregiver remained in a state of grieving without the closure of death and the opportunity to adapt to a physical separation from the care receiver: ‘I had to keep reminding myself that the disease took away the dad I once knew’ (Collins et al., 1993 p. 242). Some caregivers felt that this ambiguity intensified their grief: ‘Upon death you will grieve for a while, but your life goes on. Seeing your loved one die daily for over six years just makes your feelings stronger’ (Sanders & Corley, 2003, p. 49).

The unpredictability of the course of dementia compounded grief further: ‘Sometimes the changes happen quickly whereas other times I seriously think that he is starting to come back’ (Sanders & Corley, 2003, p. 46). Caregivers felt that they were at the mercy of dementia (Sanders & Corley, 2003) and the lack of cure and inevitable decline of dementia led to feelings of hopelessness and worries about the future (Dupuis, 2002; Loos & Bowd, 1997): ‘You see your loved one getting worse and worse, and you can’t help them get better at all’ (Collins et al., 1993, p. 243). Caregivers expressed worries about whether they would be able to cope when the disease progressed which was heightened by witnessing other people in the later stages of the disease (Dupuis, 2002) as illustrated here: ‘I can only imagine how much worse this is going to feel’ (Adams & Sanders, 2004, p. 202).

The length, unpredictability and inevitable decline of dementia contributed to a challenging grieving process and in some cases intensified grief.

Striving despite dementia

Caregivers identified ways of striving through this process and developed several coping strategies. One of the most prominent strategies was accentuating the positives and focusing on the abilities that remained: ‘We are still able to hold hands, snuggle and interact’ (Sanders & Corley, 2003, p. 43). ‘She is still functioning well…I feel very fortunate my wife is still alive’ (Sanders et al., 2002, p. 13). Part of being able to focus on the positives involved living in the moment and trying not to worry about the future. As one husband said, ‘You can only eat an apple one bite at a time. You can only live life one moment, hour, day at a time’ (Sanders & Corley, 2003, p. 43).

The ease of being able to focus on remaining abilities and connections with the care receiver was dependent on the stage of the disease. As the disease progressed it became more difficult for care receivers to communicate, therefore caregivers tended to cope at this time by detachment and a separation from feelings (Sanders et al., 2002). Caregivers stated detaching themselves from their feelings of grief enabled them to continue caregiving whereas allowing themselves to grieve would inhibit them from caring (Dupuis, 2002). Caregivers described how they ‘developed a crust in order to cope’ (Jones & Martinson, 1992) and as one son described, ‘The worst thing I could do would be to bring these feelings to the surface. I would probably be in so much pain and anguish that I could no longer meet the needs of my mum’ (Sanders & Corley, 2003, p. 50).

Utilising social support

This theme comprises caregiver’s experiences of social support including the use of nursing homes, friends, support groups, faiths and professionals. This is a related but separate theme to ‘striving’ as it concerns the influence of the wider systems around the caregiver. As the disease progressed and caregiving responsibilities intensified, caregivers increasingly relied on wider social systems for support and guidance.

In the first instance, caregivers relied on support from friends and family. Largely, caregivers reported that friends were a great source of support, both emotionally and practically: ‘The most important thing is not always to talk, but to get help with what needs to be done’ (Almberg et al., 2000, p. 85). However, some caregivers reported that friends were sometimes unhelpful, giving unwanted advice and expecting the caregiver to resolve their grief quickly (Almberg et al., 2000).

Additionally, caregivers cited their faith and spirituality as a source of support which enabled them to continue caregiving and work through their grief (Sanders & Corley, 2003; Sanders et al., 2002): ‘I believe and trust in the Lord that I will get through’ (Sanders et al., 2008, p. 514). ‘My belief has helped me through this’ (Almberg et al., 2000, p. 86).

Furthermore some caregivers chose to rely on professional support which some found helpful and positive, such as one caregiver who commented regarding nursing staff, ‘I don’t know how I would have managed if it had not been for their consideration’ (Almberg et al., 2000 p. 86), however others felt that professionals were often lacking information (Almberg et al., 2000) and gave contradictory advice (Sanders et al., 2008). Regarding support specifically for grief, one caregiver stated, ‘There are services to help families deal with the grief after a loved one dies of cancer. What services are there for my grief?’ (Sanders & Corley, 2003, p. 49). This feeling of isolation was echoed in many caregiver accounts as caregivers felt that other people would not be able to understand their experiences and their grief, therefore they felt prevented from accessing wider support.

When caregiving responsibilities became unmanageable, some caregivers made the decision to place their loved one in a long-term care facility. Caregivers described this as difficult and repeatedly questioned whether they had made the right decision (Loos & Bowd, 1997; Sanders et al., 2002, 2008).

Accessing wider support during times of need enabled caregivers to continue caregiving whilst seeking outlets for their grief.

Death as a relief from caregiving

This theme was evident only in the studies that interviewed caregivers following the death of their loved one or after completion of their caregiving; however, it was thought an important theme to include as it captured a significant part of the grieving process. Prior to feelings of relief, many caregivers expressed a readiness, or sometimes willingness, for their loved one to die: ‘[Mum] is very much in a way ready to leave this life. She would love to just go’ (Dupuis, 2002, p. 109). Jones and Martinson (1992) noted that feeling ready to let go was more notable in caregivers who had experienced significant grieving during caregiving.

Many caregivers felt that death brought relief to the suffering of the person with dementia: ‘Everything was over for her. She had fought long enough’ (Almberg et al., 2000, p. 85). Additionally, death brought feelings of relief for the end of caregiving duties: ‘I am glad that it is all over now. I feel that a load has been lifted from my shoulders’ (Almberg et al., 2000, p. 85). Some caregivers reported mixed feelings about feeling relieved such as, ‘The death itself was a mixed blessing. I was sorry to lose my wife, but at the same time I felt a great load was lifted’ (Collins et al., 1993, p. 245). In some circumstances, the experience of feeling relieved made the experience of grief more difficult: ‘The death was very difficult, for more than one reason. Because of the loss and because of your mixed emotions – relief and guilt’ (Jones & Martinson, 1992, p. 174).

Jones and Martinson (1992) found that feelings of relief were more common in caregivers who did not have regrets about the caregiving process and especially where caregivers were able to continue caring for their loved one at home.

Overall, the end of caregiving was typified by a readiness to let go, relief both for the caregiver and care receiver and in some circumstances guilt about feeling relieved. This period was eloquently described by one caregiver who stated, ‘It was a gentle end to a tremendously chaotic period of emotional and physical pain for all of us’ (Collins et al., 1993, p. 244).

Themes interconnected

The next step in a meta-ethnographic approach is to provide an explanatory analysis of the third-order themes (Atkins et al., 2008). After developing and conceptualising six themes from the data, the authors reflected on the potential interactions and relationships between these themes. The authors suggest that each theme cannot exist in isolation and instead each has dynamic, interconnected relationships with other themes. Figure 1 depicts an illustration of the authors’ interpretation of how these themes could be connected followed by a discussion of the connections. The aim of this illustration is to encompass the themes that are relevant to caregiver grief and to account for the idiosyncratic nature of caregiver grief.

The ‘role of dementia’ impacts the other themes of ‘death as a relief from caregiving’, ‘challenges of caregiving’ and ‘losses and changes in the relationship’, which overall affect how grief is experienced. For example, the numerous losses associated with dementia such as loss in communication, personality change and the loss of the ability to participate in previously shared activities leads to changes in the relationship with the care receiver. The progression and unpredictability of dementia have a direct impact on the caregiver themselves through high stress levels and stopping recreations; leading to changes in their health. The extent to which changes are experienced depends on the stage of the disease, where people in the later stages of the disease will experience more losses, and consequently caregivers may experience further health deterioration and higher stress.

These changes as a result of dementia not only lead to relationship changes with the care receiver, but also include loss of freedom and activities because of the time needed for caregiving. The time and physical resources required for caregiving reduce the caregiver’s ability to spend time with friends or family and therefore may reduce their social connections. Additionally, the progressive nature of the disease and the extent of the losses experienced may lead some caregivers to rely on support through a nursing home or long-term care facility. The nature and type of these support systems influence the caregiver’s ability to cope and therefore ‘strive despite dementia’. Adequate support systems may enable the caregiver to focus on the positives of caregiving and therefore reduce the burden of caregiving and facilitate the caregiver to grow through caregiving, resulting in improved overall wellbeing. Conversely, inadequate support may result in increased caregiver stress and guilt.

Focusing on specific ways of striving, detaching is effective in allowing the caregiver to continue caregiving but affects the closeness of the relationship with the care receiver. The process of detachment may be experienced by some caregivers as adding to their feelings of guilt, or may be experienced as allowing them the opportunity to reflect and grow from caregiving. Therefore the specific ways in which caregivers can be said to ‘strive despite dementia’ will have a direct impact on their relationship with the care receiver and the challenges they face while caregiving.

Following the death of the care receiver, the nature of the disease and the challenges experienced by the caregiver will impact the extent and type of relief experienced. Caregivers who experience more guilt when caregiving are likely to feel less relief compared to caregivers who were happy with the decisions made.

Overall, the beliefs, interpretations and decisions made by the caregiver, along with their context and experiences during caregiving impact how the caregiver experiences grief.

Discussion

The aim of this meta-synthesis was to provide a detailed and contextualised account of caregiver grief when caring for someone with AD or related dementia. This new understanding may help inform future policy regarding the nature of grief that caregivers experience and indicate the types of support and interventions that would be beneficial both during and after caregiving.

Caregivers report several challenges while caregiving. This can include physical changes in health due to stress and is consistent with previous research (Grant et al., 2002). Caregivers also experienced an inability to continue with hobbies and reduced freedom. Weenolsen (1988) suggested that losses specific to the caregiver themselves are the most painful losses. The high demands of caregiving often left caregivers with feelings of guilt, particularly if they had made the decision to use the support of a long-term care facility. Guilt has been described as the most debilitating emotion for caregivers (Oliver & Bock, 1985) indicating that professionals should acknowledge and provide appropriate support when caregivers experience guilt. Furthermore the physical time, energy and resources required for caregiving, coupled with worry and guilt, may make it difficult for caregivers to notice, identify and work through their feelings of grief.

Relationship changes and losses between caregiver and care receiver are perhaps one of the saddest consequences of dementia. Several losses result in a change in the relationship and, in some circumstances, role reversals. The loss of communication and change in personality of the care receiver makes grieving particularly problematic. These losses separate dementia caregiver grief from anticipatory grief (Rando, 2000) where anticipatory grief is thought to enable caregivers and care receivers to work through their feelings of grief through discussing dying, preparing the care receiver for death and the opportunity to resolve any problems in the caregiver–care receiver relationship (Dempsey & Baago, 1998). These discussions are difficult, if not impossible, given the changes as a result of dementia and further complicated by the physical resources necessary for caregiving which may prevent the caregiver from noticing or identifying their grief.

Caregivers stated they detached themselves from their grief and the relationship in order to have the ability to continue caregiving. In contrast, Fulton and Gottesman (1980) suggest that the process of anticipatory grief involves a decrease in the sense of attachment to the care receiver. Therefore detaching may be a way to inhibit grieving to continue caregiving or may be a consequence of anticipatory grief. Further research is needed to explore the functions of detachment in dementia caregiving.

The role of dementia was identified as a theme in itself due to its wide influence. The lack of a cure and progressive nature of dementia led to feelings of a lack of control and hopelessness consistent with Frankl (1978) who identified powerlessness as a fundamental part of suffering. Additionally, the ambiguity of the physical presence of the loved one with personality changes and communication losses made grieving problematic. This ambiguous loss (Boss, 1999) and the lack of adequate social understanding or outlets for this grief (McEvoy, 2007) left caregivers feeling unable and unsure how to grieve. Professionals can support caregivers to share their grief and experiences through support groups or individual therapy.

Isolation was a common experience and can be caused by a combination of inadequate societal understanding, the length and time required for caregiving, the loss of the intimate caregiver–care receiver relationship and caregivers giving up activities or occupations which may have been links to social support. George, Blazer, Hughes and Fowler (1989) found that isolation correlates with caregiver depression following the death of their loved one, indicating that it is important to encourage social inclusion of the caregiver both whilst caregiving and after.

To combat this, caregivers utilised social support to help them while caregiving. Caregivers accessed support through friends, professionals, long-term care facilities and faith. Chang, Noonan and Tennstedt (1998) found that caregiver’s spiritual beliefs were linked with lower levels of depression and role submersion, and a better relationship with the care receiver.

Some caregivers experienced a ‘readiness to let go’ towards the end of the illness consistent with the stages outlined by Ponder and Pomeroy (1996) where acceptance is the final stage in caregiver grief. Following the death of their loved one, caregivers experienced feelings of relief both for the care receiver who is no longer suffering and for the relief from caregiving duties. As Jones and Martinson (1992) noted, feelings of relief and acceptance were most common in caregivers who had reported significant grieving during caregiving, indicating the importance of supporting the caregiver while caregiving as this can lay the foundations for future conflicts or resolutions.

Overall the themes interconnected and the associated figure illustrate an overarching framework for understanding grief in dementia caregiving in addition to facilitating the understanding of an individual’s experience of grief by incorporating personal reactions and context.

Limitations

A large number of studies did not report demographic information, therefore it is difficult to comment on the exact population that this research is based on and ground the interpretations within the context of the populations studied. Specifically, eight of the 11 studies did not report ethnicity information and six of the 11 studies did not report gender information. The information that was reported is detailed in Table 1. The grief experienced by caregivers may be influenced by their age, socioeconomic status, residential area, ethnicity and location of care. Overall, based on the available information, the themes identified may be representative of a largely female population where the caregiver is aged 50–60 caring for someone aged 80–90 living at home or in a long-term care facility.

Several of the studies had large sample sizes and details about the processes of analysis were absent, therefore it is difficult to assess the quality and validity of the authors' theme interpretations and consequently impacts the themes of this meta-synthesis. Despite this, several of these studies used a process of triangulation to preserve validity.

The sampling method may have impacted the results obtained. In eight of the 11 studies, participants were asked to volunteer to be a part of the study. People may be more likely to volunteer to participate in a study about caregiver grief if they identify that they are grieving and would like the opportunity to talk about it. Those who did not identify with the experience of grief may have been less likely to volunteer. Alternatively, caregivers who were experiencing a significant amount of grief may have felt overwhelmed and unable to participate. As a result, the sample may be biased towards those people who identified with the concept of caregiver grief, felt able to talk about their experiences and grasped the opportunity. Further research is needed to include caregivers who identify themselves as not grieving or overwhelmed by grief.

Finally, the meta-ethnographic approach is based on subjective interpretation of the data, therefore any results are affected by the context, beliefs and perspective of the authors, as evident with all qualitative research (Atkins et al., 2008). Attempting to eliminate these influences impedes qualitative research, therefore the authors have strived to be transparent about the analysis and their viewpoints so that the readers can make an informed decision about the validity of the research and results. When conducting the analysis, the authors focused solely on the data present in the research studies identified and developed themes from within this data. The themes have been connected to the wider literature within the discussion, enabling the discussion of the empirical basis for the themes identified. Following identification of the themes, the authors could see potential links and reciprocal relationships between certain themes. Developing these ideas led to the creation of the illustration of the themes interconnected and is a suggested understanding of how the themes are interlinked. Therefore this illustration is highly subjective, yet provides the starting point for understanding caregiver grief in this area, and can be used to devise interventions and provoke further empirical research.

Implications

The framework for understanding caregivers’ grief indicates that the individual experience of grief can be varied and idiosyncratic; therefore, it is important for professionals to provide a holistic assessment of the caregiver and be mindful of the suggested influences and links. The suggested links may provide an indication of how to begin a dialogue about grief and when and how to intervene with extra support. For example, particular attention should be given if professionals or caregivers notice the caregiver giving up activities as it is suggested in the framework that this can lead to isolation and inhibit grieving, leading to increased distress in the future. In this example, the intervention could include encouraging and supporting the caregiver to continue activities they enjoy and find a suitable outlet for their grief.

The illustration of the themes interconnected highlights the relatively large influence of coping strategies on both the caregiver and care receiver. Further research may focus on identifying effective coping strategies, which if utilised would protect against the challenges of caregiving and improve the ongoing relationship with the care receiver.

Feelings of isolation and stigma attached to grieving while the person is still alive were a common experience among caregivers. Encouraging caregivers to talk about their grief has been shown to improve caregiver’s preparation and adjustment to bereavement (Rando 1983). However, Nolen-Hoeksema (2001) suggested that whilst discussing grief is helpful, rumination on grief may prove unhelpful, therefore professionals should aim for an appropriate balance. Training for professionals may help them to identify caregivers experiencing grief and provide an appropriate forum for caregivers to discuss their grief therefore reducing the isolation and stigma.

Researchers have devised appropriate interventions for caregiver grief, which prospectively link with the themes and framework suggested. For example, Dupuis and Pedlar (1995) devised Family Leisure Programs designed to provide quality visits, meaningful roles for the caregiver and improve social support networks. They found that this intervention moderated the impact of caregiver grief and enabled meaningful relationships between caregiver and care receiver. Based on the framework suggested from these findings, this intervention moderates the impact of the change in roles as identified as part of the ‘relationship changes’ and is part of the ‘wider support’. It is hoped that the framework described in this article can be utilised to devise future interventions.

Conclusion

The aim of this research was to provide an understanding of caregiver grief when caring for someone with AD or related dementia. The themes highlight the dynamic influences on caregiver’s experience of grief and emphasise the importance and utility of holistic assessments and contextualised interventions. Caregiving for a person with AD or related dementia can be a challenging and consuming role where understanding grief in this circumstance can lead to improved support, services and understanding for the people who inhabit this role.

Footnotes

Samantha Large is a third year trainee clinical psychologist at the University of Lancaster. She obtained her BSc Psychology (hons) degree in First Class at the University of Nottingham.

Richard Slinger is aclinical psychologist and clinical tutor at the University of Lancaster. He obtained his doctorate degree in Clinical Psychology in 1998.

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