Together but apart: Caring for a spouse with dementia resident in a care facility.

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Article

Together but apart: Caring for a spouse with dementia resident in a care facility

Dementia 0(0) 1–19 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214542837 dem.sagepub.com

Dawn Hemingway School of Social Work, University of Northern British Columbia, Canada

Penny MacCourt Social Work & Human Service Program, Thompson Rivers University, Canada

Joanna Pierce School of Social Work, University of Northern British Columbia, Canada

Tina Strudsholm School of Social Work, University of Northern British Columbia, Canada

Abstract This longitudinal, exploratory study was designed to better understand the lived experience of spousal caregivers age 60 and older providing care to partners with Alzheimer’s disease and related dementias resident in a care facility. Twenty eight spousal caregivers were interviewed up to three times over a period of 2 years, and long-term care facility staff from four locations across British Columbia (BC), Canada participated in four focus groups. Thematic analysis of interview and focus group transcripts revealed a central, unifying theme ‘together but apart’. The results identify key targets for policy makers and service providers to support positive health and well-being outcomes for spousal caregivers providing care to their partners diagnosed with Alzheimer’s disease and related dementia and living in care facilities. Keywords Alzheimer’s disease, dementia, care facility, spousal caregiving, caregiver burden

Introduction The Canadian population is ageing and an increasing number of people are diagnosed with dementia – the most prevalent type being Alzheimer’s disease (AD) (Alzheimer’s Society of Corresponding author: Dawn Hemingway, School of Social Work, University of Northern British Columbia, 3333 University Way, Prince George, BC V2N 4Z9, Canada. Email: [email protected]

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Canada, 2012). Fiscal restraint in the delivery of health-related services is leading to the everincreasing involvement of family caregivers in the provision of care both in the family home and in institutional settings. Specifically, Canadian health care policy is actively promoting increased involvement of family caregivers in the provision of care within community and care facility settings in order to meet the care demands associated with increasing dementia diagnoses. Many studies have identified the negative (and less often, positive) impact on the mental and physical well-being of these caregivers – primarily those who are providing care to a family member still living at home. The experience and role of spousal caregivers who provide care to a partner with Alzheimer’s disease and related dementias (ADRD) residing in a care facility has received less attention in the research. This study attempts to bridge the gap in knowledge by identifying and describing the experience of spousal caregivers caring for a partner who is resident in a care facility. This experience is uncovered through in-depth caregiver interviews augmented by staff reflections and observations. Institutionalisation of a spouse does not appear to relieve spousal caregivers from care burden, despite being relieved of their responsibilities as primary caregiver. Spousal caregivers report greater increases in care burden and depressive symptoms as compared to other caregivers up to 12 months after placement in a care facility (Gaugler, Mittelman, Hepburn, & Newcomer, 2009). In particular, they experience increased stress, depression, decreased positive well-being (King, Collins, Given, & Vredevoogd, 1991), and prolonged physiological distress post-institutionalisation (Grant et al., 2002). Because of unrealistic expectations of themselves and personal frailty, spousal caregivers are particularly vulnerable to care burden (Cohen et al., 1993; Colvez, Joe¨l, Ponton-Sanchez, & Royer, 2002). While placement in a care facility may have been previously considered an endpoint to spousal caregiving, it is now understood that these caregivers remain involved in care, albeit with a change in intensity and type of care provided (Gold, 1995; King et al., 1991). A dementia diagnosis contributes to a higher level of spousal involvement in caring for a partner resident in a care facility (Mirante, 2004). Rather than an endpoint to care, facility placement is best understood as a transition in the caregiving experience. Better understanding the transition in caregiving experience of spousal caregivers from inhome care to an institutional setting, including the views of care facility staff, should assist policy makers and health authorities, as well as staff members themselves to develop more effective ways to support spousal caregivers’ health and well-being. Furthermore, supporting evidence-based policies and services is expected to enhance relationships between spousal caregivers and staff.

Methods The purpose of this longitudinal, exploratory, qualitative study was to develop a contextual understanding of the lived experience of spousal caregivers 60 and older providing care to partners with ADRD resident in a care facility. This was achieved through thematic analysis of interviews with spousal caregivers and focus groups with care facility staff. Inclusion of staff perceptions of the spousal caregiver experience provides a sense of whether staff members and caregivers have a consistent or dissonant view about how spousal care providers are managing.



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Identification of participants Spousal caregivers with partners diagnosed with ADRD and residing in a long-term care facility were recruited from BC Alzheimer Society support groups located in Prince George, Nanaimo, and surrounding rural/northern communities in British Columbia as well as directly from care facilities located in the same communities. Recruitment was facilitated by the extensive connections and relationships that the researchers had with the Alzheimer’s Society as well as with care facilities and health authorities in their respective regions. In addition to an introductory letter from the BC Alzheimer’s Society, informing all support group participants of the research project and encouraging their participation, researchers visited the support groups to speak about the project and to answer any questions potential participants had. In care facilities, staff were approached (via the appropriate managers) and asked to inform spousal caregivers of the study (with an information sheet provided). Information sessions for potential participants were conducted at each care facility and notices about the study were placed on care facility bulletin boards. Every effort was made to include participants from both genders and from diverse geographical, cultural, and ethnic backgrounds, including local First Nations communities. However, due to limited resources and the relatively small sample size, only participants fluent in English were included. The researchers sought to engage participants whose spouses were just entering (or had recently entered) a care facility in hopes of decreasing the participant mortality rate. A thank you card was sent to participants following participant withdrawal from the study and a sympathy card was sent upon the death of a caregiver or institutionalised spouse. A follow-up phone call or visit was initiated when appropriate. Any partial data included in the study analysis were acknowledged. Care facility staff were recruited to participate in one of four staff focus groups. Participants included registered nurses, care aides, housekeeping staff, recreation coordinators and administrative support staff. Four care facilities were identified, one in each of the following geographical areas: Prince George, a rural community in north/central BC, Nanaimo, and a rural community on Vancouver Island. For recruitment purposes, information sheets were provided to each care facility for distribution to staff. In addition, information was made available through various staff unions and professional organisations. Via their own connections, researchers also contacted key informants in order to facilitate the recruitment process. Every effort was made to ensure that staff from different disciplines participated.

Interview format The spousal caregiver participants were interviewed in person, in their homes three times over a 2-year period. Structured interviews were used to collect the caregivers’ experiences. Participants were asked the same questions at each interview and prompted to discuss details of their caregiving experience. Facility staff focus groups were conducted to hear the staff perspectives and observations about how the spousal caregivers were doing. Focus groups were guided specifically to draw out and identify similarities and differences between caregiver and staff perspective of the spousal caregiving experience. For example, staff members were asked what they observed spousal caregivers needed in the way of support from staff, whether they felt that caregivers were provided that support and any suggestions about changes that they felt would better meet the needs of spousal caregivers.



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Ethical considerations Spousal caregivers and facility staff were all informed about the purpose of the research, their right to withdraw from the study at any time, and the risks of participation. Informed consent was obtained from the participants at the beginning of each interview or focus group. The research was approved by the appropriate University Research Ethics Board.

Data analysis Descriptive statistics were used to characterise the spousal caregivers and their spouses. Interviews were transcribed verbatim. Transcriptions were checked for accuracy through random checks, and pulled quotations were checked against interview recordings. Thematic analysis of transcripts involved several iterative phases. Phases included: identification of meaningful statements, identification of major topics, identification of themes within and across topics, and search for supportive and contrary statements (Crabtree & Miller, 1999). The phases of thematic analysis were completed independently by two researchers. At the end of each phase, researchers met to compare and discuss the development of major topics and themes.

Results Description of participants Twenty eight spousal (including common-law) caregivers participated in the study. Eight participants withdrew from the study before all three interviews were completed due to the death of their spouse. One participant chose to withdraw from the study for an undisclosed reason. Demographic characteristics of spousal caregivers are summarised in Table 1. Just over two-thirds (67.9%) of spousal caregivers were female. Correspondingly 67.9% of residents of the care facility were male. The average age of spousal caregivers was 74.8 years. On average, female caregivers were younger than male caregivers (71.3 years versus 82.1 years). The average length of their marriages was 50.6 years, with the shortest length of marriage being 31 years, and longest marriage being 64 years. These couples had lived in their current community for an average of 25.8 years. The shortest time in the community was 1 year, and longest time was 55 years. The participants’ spouses had been resident of care facility for an average of 32.2 months (2.7 years) at the time of the first interview. The average age of spouses resident in care facility was 78.6 years. Male residents were younger than female residents on average (77.1 years versus 81.7 years). Participants were asked to rate their overall health on a scale from one to five, with one representing the worst possible health and five representing the best possible overall health. The self-rated overall health score was taken during three separate interviews over a period of 2 years (Table 2). The mean scores remained similar over the course of the interviews. However, the standard deviations decreased over time as did the median, thus reflecting an overall decrease in self-reported health and a narrowing of the variability in scores. The spousal caregivers identified the diagnoses of spouses. These diagnoses were not confirmed with medical charts or staff. The diagnoses described include: Alzheimer’s dementia; Alzheimer’s with possible vascular component; receptive and expressive aphasia; brain aneurism, haemorrhage; dementia; dementia atypical, some mention of Alzheimer’s; dementia with Lewy body disease; dementia ‘Parkinsonian Syndrome’; diabetes; emphysema; frontal lobe dementia (head injury, alcohol); manic depression;



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Table 1. Demographic characteristics of spousal caregivers at time of first interview. Demographic characteristics (N ¼ 28)

Range

Gender (% female) (% male) Overall age (mean) Mean female caregiver age (n ¼ 19) Mean male caregiver age (n ¼ 9) Years married (mean) Years living in current community (mean) Spouse with ADRD living in care facility Overall age (mean) Mean female spouse with ARDRD age (n ¼ 9) Male spouse with ADRD age (n ¼ 19) Gender (% male) Months in facility care (mean)

67.9 32.1 74.8 71.3 82.1 50.6 25.8

years years years years years

61–91 61–84 78–91 31–64 1–55

78.6 years 81.7 years 77.1 years 67.9 32.2

years years years years years

65–86 years 76–85 years 65–86 years 1–60 months

ADRD: Alzheimer’s disease and related dementias.

Table 2. Self-rated overall health.

Interview 1 (n ¼ 26) Interview 2 (n ¼ 22) Interview 3 (n ¼ 20)

Mean (SD)

Median

3.67 1.03 3.78 0.88 3.25 0.57

4.00 3.75 3.00

atypical Parkinson; other physical disabilities; and vascular dementia. Some spouses resident in care facilities were described as having more than one of the above diagnoses.

Thematic analysis The central, unifying theme revealed in the analysis of interviews and focus groups was ‘together but apart’. Institutionalisation created a physical separation between spouses, and yet spousal caregivers remained involved in their spouse’s care. The central, unifying theme ‘together but apart’ was also evident in how the spousal caregivers described their relationships with facility staff and how staff described their interactions with spousal caregivers. The term ‘together’ largely represented the positive and affirming aspects of the relationships discussed. What could be easily regarded by observers as negative circumstances were, at least in part, experienced quite differently. Rather than focusing solely on the burden of care, spousal participants also identified the affirming experience of ongoing connections and physical presence with a spouse. The togetherness with staff was also experienced as a positive and rewarding fellowship, and spouses regarded staff in an overall positive light. Negative aspects of the experience of caring for an institutionalised spouse were captured by the term ‘apart’. In broad terms, ‘apart’ was attributed to larger systemic aspects of the health authority or provincial and federal government policies. Some of the systemic issues that challenged participants of this study included staff turnover,



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program funding, pension eligibility, social assistance policy, accessibility of the health care system and services, and transportation. The central theme ‘together but apart’ will first be described from the perspective of the spousal caregivers with respect to their experience with their spouses with dementia who are living in facility care. Second, the central theme will be presented from the perspectives of both spousal caregivers and facility staff with respect to their experiences of being ‘together but apart’.

Spouses together but apart Spousal caregivers discussed the impact of institutionalisation on the relationship with their husband or wife in terms of marriage vows, continued caregiving in the facility, separate lives, and disease progression. Some of these sub-themes identified how spouses remained connected, while others identified areas of conflict and obstacles to a continued relationship with their spouse (Figure 1). Wedding vows. Participants discussed their wedding vows and their status as a married couple as important, despite their physical separation upon transition of their partner to facility care. Marriage vows were described as a motivator in maintaining a role in their spouses’ care within the care facility: ‘I feel that I still have that commitment, that I need that for me, whether he needs me to come or not. I made a vow, in sickness and in health, till death do us part.’ In light of their long-term marriages, institutionalisation was also described as akin to a divorce. This description signalled not only a physical separation, but an emotional distance as their spouse’s memory of their marriage is lost: ‘So basically it is like a divorce, a person,

Sub-themes

Spousal caregiver

Descripon

Wedding vows

unl death do us part

Connued caregiving

connecon, understanding

Separate lives

alienaon, mourning, changing responsibilies, planning for future

Disease progression

degenerave, waing, unknown meline

Spouse with ADRD

Figure 1. Spousal relationships’ unifying theme ‘Together but apart’, sub-themes, and descriptions. ADRD: Alzheimer’s disease and related dementias.



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I mean he does not remember me, so, he just remembers the people who are there. Can you see the hurt? Can you see the pain?’ Continued caregiving. Continued caregiving roles within a care facility such as assisting at mealtime, walking, and grooming were discussed as opportunities to connect with their spouses. Caregivers acknowledged moments of connection and understanding as very valuable. We were in the room where everybody is and I was talking to the caregiver [care facility staff] and I said I would almost give up everything I had for him to be well and back home again, and [my husband] looked at me you know, and then he came over and gave me a hug, right in front of everybody and that was special because he must have understood. He must have understood that I cared.

Separate lives. Despite continued involvement in the care facility, spousal caregivers described feeling as though they were living separate lives. Caregivers felt left out of their institutionalised spouse’s new routine, relationships, and experiences in care facilities. As shared by one spousal caregiver, upon transition to long-term care her husband ‘settled right in, that was his home [emphasis added]’. As the spouse’s new home, care facility living included development of new relationships and routines; spousal caregivers described a sense of alienation: ‘So I visit him and I feel like I am going into a different world’. New relationships with facility staff as well as other residents were discussed with a tone of suspicion. Jealousy and competitiveness were expressed towards both facility staff and other residents that formed a part of their spouses’ everyday lives. You know, and that really, really bothered me, cause she [care facility staff] was working with other people and he got jealous and I still see that. Uh, but they sort of develop a relationship, uh, I suppose that is normal, uh, what can you say.

In addition to feeling separated from their spouse’s new relationships, routines, or experiences; spousal caregivers also described transition to a care facility as ‘an involuntary separation’ and the beginning of the mourning process for the loss of their spouse. I mean when you place a person in a care facility, you lose them. They are not really yours anymore. On paper they are, but they are not really yours. The mourning season started the minute I put him in there. I said it is every day, you come home to an empty house. You have nobody there.

Institutionalisation signalled the beginnings of a life separate from one’s partner. Spousal caregivers described what it was like to be solely responsible for tasks of daily life and planning for the future. For example, they were now left on their own to sort out duties associated with household chores and finances without the help of a husband or wife that they may have relied on in the past. It is just that you have to learn to be on your own, you know. I think that the hardest thing is that you have a husband, but you have nothing. This is the way it is going to be and it is not going to get any better. I have got to do it myself now.



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Spousal caregivers described how they were in a challenging position wherein they recognised the need to make some future plans, and yet their future was tied up with the condition of their spouse. Future plans were discussed in ambiguous terms, with unclear goals and timelines: The other thing that’s hard is not knowing what I’d really like to do or how. So I’m kind of sitting tight, maybe have a revelation someday. I have to weigh everything here. I can’t go now. So now I am just sitting and waiting, waiting for an opportunity.

Disease progression. The negotiation between marital vows, continued caregiving, and living separate lives was ultimately shaped by disease progression. Disease progression was described as something that kept the spouses connected, contributed to a sense of separation, and inevitably would end their relationship: Well, I think that he, like I don’t expect him to be around in a year’s time, if he is going to progress the way he is now. Uh, it is always sad to think about that, at least now I have some purpose in my life, but when he is gone, that will be a whole new area [. . .] I am just living day by day.

Spousal caregivers and facility staff together but apart In terms of the relationship between spousal caregivers and facility staff, the theme of ‘together but apart’ was evident in both caregiver interviews and focus groups with staff. The relationships were described to be both strengthened and challenged by care facility placement, caregiving roles, and knowledge of the disease versus knowledge of the person (Figure 2). Placement in facility. Placement of a spouse in long-term care necessarily brought together spouses and facility staff. Relationships were at least in part reported as strained and

Sub-themes Placement in facility Spousal caregiver

Caregiving roles

Knowledge of disease vs. person

Descripon guilt, transion in care, suspicion advocacy, enabling, care priories knowledge of ADRD, knowledge of the spouse

Facility staff

Figure 2. Spousal caregiver and facility staff relationships’ unifying theme ‘Together but apart’, sub-themes, and descriptions. ADRD: Alzheimer’s disease and related dementias.



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challenging for both spouse and staff. Caregivers described feelings of jealousy and frustration when reflecting on their relationship with facility staff. ‘There is some resentment that I have given my husband to them, they have got him. I keep thinking that I have given away my husband’ (Spousal caregiver). At the same time, facility staff recognised a need to show respect for and acknowledge the spousal relationship and marriage history. This required knowledge of the resident’s life before institutionalisation and recognition that residents have important, long-term, and ongoing relationships with their wife or husband. I would think they [spousal caregivers] need respect; [. . .] as does their family member that’s now moved into a facility; understanding that they’ve had a past, you know. These were two functioning adults at one time and I’ve been caring for [one of them] and that sort of thing. Just acknowledgement and patience. (Facility staff)

Facility staff attributed placement of one’s spouse in a care facility with feelings of guilt, of having given up, and of failure among spousal caregivers. Furthermore, staff members felt guilt fuelled the resistance of spousal caregivers to let go of their caregiving role. ‘About guilt; there’s a lot of guilt for these [spousal] care providers when they’re still in the community making a decision and often the guilt is related to no longer providing care’ (Facility staff). Spousal caregivers expressed suspicion about what occurred at the care facility in their absence. This lack of knowing fuelled distrust and suspicion with regard to relationships between their spouse, facility staff, and residents. Facility staff also recognised that the limited time spousal caregivers spent at the facility contributed to negative speculation about what was going on at the facility: ‘[They] may only have a window of an hour or two hours that they’re going to come in and visit, and what they see is what they analyze and they take home with them in that period of time’ (Facility staff). Caregiving roles. Facility staff described integrated institutional roles for spousal caregivers as a way to ease the placement transition. They felt that formal roles for spousal caregivers within facility settings were a means to make these caregivers feel as though they still have a role and continue to be a part of their spouse’s care. Formal roles were described as being appreciated by spousal caregivers as a way to feel more a part of the care facility community. Those [spousal] caregivers can be better integrated as part of the care team and I think that’s really critically important that they feel like they can continue on the role in some capacity or at least have staff input into, you know, to problem solve how they may feel to develop a new role. So it’s the issue of guilt that often drives the difficulty in transitioning from home caregiver to facility based caregiver. (Facility staff)

Staff noted that frequent staff change-over, more part-time, and casual staff made it difficult for spouses to communicate with facility staff and to establish a new spousal caregiver role within the residential care setting. There’s lack of continuity of staff with all the shift workers and so many of them. They [caregivers] have trouble knowing who to go to and ask to get sort of the whole story. They hear different things from different workers and that can be really hard (Facility staff).



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Furthermore, caregivers noted that the ongoing training demands of new, inexperienced staff took senior, more experienced staff away from their caregiving roles. [Every] time staff changes, and it is quite often, they will put these new young girls in that do not have a clue as to what to do with them [spouse with ADRD] and it is harder on the older members, the older staff because they are trying to train them. I know that they have to, but there is a lot of good books out there. (Spousal caregiver)

Time constraints are also felt by facility staff and that impacts effective communication between caregivers. ‘We’re all there working; we don’t have time to really communicate what we do, what we don’t, you know what I mean? So we assume a lot of things and carry on’ (Facility staff). Staff described spousal caregivers variably as fragile, burnt out, angry, lonely, jealous, anxious, over-involved, and difficult to communicate with. With some regret, staff reported that they did not possess adequate resources such as time, training, or funding to fully address the health, emotional, and informational needs of the spousal caregivers. Consequently, spousal caregivers were often left to adapt and come to terms with the transition themselves. . . . even the most anxious, you know, over-involved, demanding [spousal caregivers], come to accept the inevitability of the disease and seeing their loved one fade from view and take a more pragmatic role in it. And sometimes it takes pounding home the message from many different angles and then having to see it, to come to terms with it. But eventually yes, I think all, I would say all spouse caregivers who remain involved, do change. (Facility staff)

Interestingly, facility staff added that this change or adaptation to caregiving roles in a facility setting could itself be seen as a process of institutionalisation: ‘I think anecdotally, I can think of a caregiving spouse that sort of became institutionalised themselves because they visited daily, they knew the staff’ (Facility staff). Spousal caregivers described one of their main roles within care facilities as advocacy. They viewed their involvement as a way to ensure their spouse received the best care possible. Specifically, they strove to anticipate their spouses’ needs and communicate these to staff. This advocacy role sometimes created adversarial situations: Well, you know, she was just so helpless and everything and then they put her in this big chair and then when I came there, she did not have anything to rest her head on. Usually they put a pillow there to make her comfortable, and she didn’t have it and she didn’t have her glasses on. I was mad and they knew it, too, that I was upset. (Spousal caregiver)

At times, facility staff found spousal caregivers’ concerns to be unwarranted. For example, caregivers were viewed as often (and unreasonably) complaining about ‘lost items and things’ such as misplaced laundry or other personal items. Furthermore, spousal caregivers were also viewed as having expectations about their spouse’s appearance that facility staff were unaware of. ‘So we usually end up getting the brunt of their anger and you know, whatever’s missing in the room or the husband doesn’t look the way they normally look when they’re at home and we’re supposed to know that’ (Facility staff). Spousal caregivers considered the difference in care priorities between themselves and staff as a source of conflict. Some wives and husbands expressed leaving care facilities ‘quite upset’, and that frequent visits were getting ‘just too hard’. Because of this, some chose to



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spend less time at the care facility and to moderate their involvement when there: ‘I could make a lot of noise and that, and upset myself, so I just sort of visit’ (Spousal caregiver). Differences in care priorities were also identified as creating an atmosphere of suspicion, judgement, and contributing to a lack of faith in their respective counterparts’ caregiving skills. While spousal caregivers were able to focus on an individual resident (their spouse), facility staff were required to address the care needs of the group. You can get quite the end of the stick there when they [spousal caregivers] come and say, ‘Where’s my husband’s wool sweater?’ They can be quite attached to their possessions, that of their own family member, not realizing that at a facility, things get misplaced very easily. (Facility staff) But those are big issues for them. Like [how] are you taking care of my person, if you can’t even take care of these personal items? (Facility staff) And then when I see crumbs on him, I think ‘oh god’. (Spousal caregiver)

While spousal caregivers expressed concerns about institutional care, facility staff also expressed lack of faith in the care provided by spouses, not only within the care facility setting, but even before institutionalisation. Facility staff pointed out that often the wives and husbands tended to mask the severity of their spouse’s ADRD: And often what happens is that they don’t even realise how much they were enabling and supporting and masking some of the dementia until the person comes into care and there’s a change of environment. And so there’s some changes around there because there’s more demands and the family’s not there to step in. And all of sudden they look like there’s been a dramatic step down in function but in fact actually this is truly their level. And then they [spousal caregiver] feel this tremendous guilt because you know, ‘look at what’s happened since I let them come in’. So that’s what we’re noticing. (Facility staff)

Knowledge of the disease versus the person. Additional tension between spouses and facility staff was attributed to different knowledge sets and understandings of dementia. Not only did staff have different training and education with regards to dementia, but they also had experiential knowledge in terms of disease progression and behavioural changes associated with the disease. I think lots of tension is caused by level of knowledge. We all have expectations about what will happen in dementia for different people. And when those changes happen, they aren’t an arrow through our heart like they are to the families. (Facility staff)

What appeared as normal to the staff was novel to the spousal caregiver. For example, behaviour that was normal in terms of dementia and therefore observed as normal by facility staff was often interpreted as mortifying behaviour by the resident’s wife or husband: That is my husband. So I went through that and I saw him on a few occasions acting inappropriately with some of the girls [staff]. And she said, oh no, he is not inappropriate and all this kind of stuff, but I averted a major catastrophe that he was about to undress in front of the [facility] caregiver (nervous laughter), you know . . . and that really, really bothered me. (Spousal caregiver)

While some spousal caregivers did seek updates and knowledge about how things were going from facility staff, these requests were regarded as challenging, and the facility staff



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felt they did not have the time or resources to keep spousal caregivers adequately informed. Spousal caregivers demonstrated limited knowledge about disease progression and management. For example, spousal caregivers did not express a strong grasp or current knowledge of their spouse’s medications, including dosage. Some spouses expressed lack of trust in medications or doctor’s prescriptions and felt that the progression of the disease was at times accelerated, rather than helped, by medication. In contrast, spousal caregivers described extensive knowledge of their spouses’ wishes, preferences, and habits. Naturally, caregivers interpreted their spouses’ reactions to institutional life with such background knowledge: ‘He [my spouse with ADRD] was extremely upset about being moved, he didn’t want to be moved because his room was level with the garden and gardening is what he enjoys so much.’ Observed anger was not attributed to his disease, but rather to his personality and the particularities of his likes and dislikes.

Discussion The theme ‘together but apart’ represents a contextual understanding of, and provides a lens for viewing, the experience of spousal caregivers providing care to partners with ADRD who are resident in a care facility. The following discussion provides reflections on the main features of the theme ‘together but apart’ as relates to: (1) spousal relationship; and (2) the relationship between spousal caregivers and facility staff.

Spouses: Together but apart Spousal caregivers described continued caregiving within facilities as a means to fulfil their role as spouse, to maintain a connection with their partner, and ensure their husband or wife was receiving the best care possible. These motivations resonate with Bower’s (1988) purpose-driven typology describing spousal caregivers’ motivations for continued involvement in institutional care: (a) preservative care (i.e. protecting and preserving patient’s self-concept and family–patient relationships), (b) preventative care (preventing harm to patient), (c) anticipatory care (preparing for what may happen to the patient), (d) supervisory care (advocacy and overseeing care provided by staff), and (e) instrumental care (feeding, grooming). Results from the present study suggest that preservative care provided an overarching motivation for spousal caregiver involvement in care facilities and all other motivators for continued care fell into place within the greater motivation to protect and preserve the facility resident’s self-concept and family relationships. Preventative care, anticipatory care, supervisory care, and instrumental care were all driven by the spousal caregivers’ knowledge of their spouse and commitment to their marriage vows. Through continued involvement in care facilities, spousal caregivers were able to uphold their spouse’s selfconcept and their relationship as husband and wife. Family members’ primary purpose in remaining involved in the nursing home has also been reported to be the ‘preservation of the identity [emphasis added] of the institutionalised older adult’ (Gaugler, Anderson, & Leach, 2003, p. 5). Again, in the case of ADRD, the importance of preserving identity may be even more paramount as the spousal caregiver could be considered alone with their own memories of their spouse’s self-concept and their marriage. Essentially, preservative care may be driven



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by memories that only the caregiving spouse is able to recall coupled with their knowledge that their partner is being ‘lost’ to ADRD. Idealisation of one’s spouse and marriage has been found to be inversely related to caregiver burden among cohabitating spousal caregivers of Alzheimer patients (O’Rourke, Claxton, Kupferschmidt, Smith, & Beattie, 2011). Regardless of the reality of their marital history, ‘positive illusions’ and exaggerated positive perceptions of their spouse and marital relationships had a protective effect against spousal caregiver burden and served as a coping strategy (O’Rourke, et al., 2011, p. 117). Upon institutionalisation, ‘positive illusions’ may remain a key component of caring for a spouse with ADRD. In the present study, spousal caregivers were very concerned, even mortified by any behaviour that put their partner in a negative light. While facility staff may regard certain behaviours as expected with ADRD, spousal caregivers can find them damaging to their ‘positive illusions’ and their coping strategies. Towards preservation of identity and marital relationship, spousal caregiver care priorities such as keeping track of personal effects and maintaining the spouse’s personal hygiene and appearance can be interpreted as predictable and natural outcomes of continued caregiving for one’s spouse within a care facility. Furthermore, the strong concern expressed by spousal caregivers in the present study about personality changes such as sexual disinhibition is understandably distressing in light of the threat it presents to marital idealisation, ‘positive illusions’, and the preservation of the identity of the institutionalised spouse. Perhaps upholding the positive aspects of the marriage and memories of one’s spouse provides both rationale and motivation for continued involvement in their care upon institutionalisation. But perhaps more importantly it may provide an effective coping strategy and protective effect against caregiver burden. Overall, spousal caregivers maintained involvement in care facilities in order to meet the needs of their spouse, but also their own personal needs. Essentially spousal caregiver involvement in care facilities can meaningfully be understood as a form of preservative care (Bowers, 1988) motivated by desires to protect and preserve the institutionalised spouse’s self-concept and marital relationship to the benefit of both partners. In the case of AD, the concept of preservative care is especially poignant as there is currently no known cure or chance of recovery for the institutionalised spouse. As such, the results suggest that involvement in care is not only about maintaining connections with one’s spouse, but doing so against the backdrop of being forced in large part to live separate lives. Although the institutionalised spouse’s life carried on as resident of the care facility, spousal caregivers described difficulty in getting on with their own lives. This was in part due to continued involvement in the care facility, but also due to the responsibility for everyday tasks such as household maintenance and finances. Previous research has also reported a sense among spousal caregivers of their lives being on hold and increased anxiety over growing responsibilities regarding finances and household management (Carpenter & Mak, 2007; Meuser & Marwit, 2001). Transition to care facility was described as a profound and difficult separation by spousal caregivers and a trigger for feelings of loss and grief. The experience of non-death related loss and grief observed in caregivers and implications for their health and well-being can be viewed as secondary to the transition experience of the spouse with ADRD (Meuser & Marwit, 2001). Specifically among spousal caregivers, transition to facility care may be assumed by staff and caregivers themselves as a relief, but for the caregiver, emotional struggles and sense of responsibility ‘may even be more prominent than before’



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(Meuser & Marwit, 2001, p. 666). As observed in the present study, transition to a care facility was grieved and signalled the beginning of a profound sense of loss. Even upon death, as captured by Meuser and Marwit, a spousal caregiver reflects: ‘I have been grieving losses over the whole period of illness; there was a loss of person before a loss of body’ (p. 666). In the case of institutionalisation of a spouse with ADRD, death is not the only precursor to grief. A distinctive factor of non-death grief is ambiguous loss (Boss, 1999; Sandes & Sharp, 2004). ‘Ambiguous loss occurs when the loss has no clear beginning and no clear ending’ (Sandes & Sharp, 2004, p. 77). Such is the ‘nature of loss inherent to Alzheimer’s disease’ (Sherman & Boss, 2007, p. 247).The ambiguity among spousal dementia caregivers is acutely difficult to tolerate as ‘the person [they] care about is neither clearly absent nor clearly present in [their] lives’ (Boss, 1999, p. 4). In the absence of a death to signal the beginning of the grieving process, dementia provides an unclear beginning, uncertain progression of symptoms, and indefinite timeline. The paradox of loss without death resonates with the paradox of the major theme ‘Together but apart’ and identifies the ambiguous context in which spouses experience institutionalisation. However, a lack of recognition and subsequently validation of nondeath related grief and loss may contribute to the vulnerability of spousal caregivers in the current study. Without recognition of grief and loss associated with institutionalisation, spousal caregivers were at risk of being misunderstood at best or dismissed as difficult at worst. What may be observed by others, including care facility staff, as challenging personality traits among spousal caregivers, may in reality be symptoms of grief associated with their spouses’ institutionalisation, dementia, and the challenge of a changing relationship between marital partners in the ambiguous context of being ‘together but apart’.

Spousal caregivers and facility staff: Together but apart Interviews with spousal caregivers and focus groups with staff reveal how institutionalisation of a spouse brought spousal and facility caregivers together, but also pushed them apart. Facility staff identified guilt among spousal caregivers as a hindrance to the spousal caregivers’ ability to accept the transition to facility care as well as to view themselves as working ‘together’ with staff. However, the caregivers did not focus (at least not overtly) on guilt associated with institutionalisation of their partner. That which was interpreted as guilt by staff may in fact have been grief associated with ambiguous loss: Grief that dementia was slowly claiming their spouse, grief that facility care was necessary, and finally grief that their care priorities did not seem to be priorities in a facility setting. The apparent differences between care priorities of spousal caregivers and facility staff set the stage for a defensive role on the part of spousal caregivers, sometimes fuelling distrust and jealousy of the facility staff. The defensive role taken on by spousal caregivers was further fuelled by the reality that within care facilities, staff are recognised as the primary caregivers and attributed power, legitimacy, and authority over the partner with dementia who is resident in the facility. At the same time, from the perspective of spousal caregivers, facility staff possessed little or no experience/history or knowledge of their partners. This situation was compounded by the nature of dementia and the fact that the spouse living in the care facility may also have forgotten the contributions of and history with their husband



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or wife. Unacknowledged by facility staff and abandoned by their partner, spousal caregivers felt alone to advocate for a legitimate role in their spouses’ care. The difference in care priorities and consequent distrust between staff and family can also be understood in terms of gaps in knowledge. Hertzberg, Ekman, and Axelsson (2001) reported that family caregivers expressed a sense of uncertainty and consequently lack of trust towards the care provided by facility staff because family caregivers were unable to gauge to what extent staff had acknowledged and taken advantage of accounts of their relatives’ life histories (Hertzberg et al., 2001). Families questioned the ability to provide adequate care in the absence of personal knowledge. Interestingly, the quality of staff members’ clinical knowledge or medical training was not identified as a component of uncertainty or concern among family members (Hertzberg et al., 2001). Similar findings are reflected in the experiences that spousal caregivers shared in the present study. It appeared unnatural among spousal caregivers to separate knowledge of their spouses’ life histories or personal identities from knowledge of their spouses’ medical diagnoses. As such, quality care may well be regarded by spousal caregivers to necessitate knowledge of both the personal and clinical, that is the social and medical. However, facility staff did not exhibit fulsome understanding of the institutionalised spouses’ life histories or perhaps more accurately, did not appear to value such knowledge to the same degree as did spousal caregivers.

Conclusion The theme ‘together but apart’ identifies and describes aspects of relationships that are bringing parties together, as well as obstacles to effective partnerships. The paradox of being ‘together but apart’ captures the ambiguous context of institutionalisation. An essential message to take forward from the theme ‘together but apart’ is the underlying sense of alienation among spousal caregivers. They have been physically separated from their spouse, separated from the shared memory of their lives together, separated from the identity of who their spouse once was as the disease progresses, and so on. Out of this alienation and uncertainty stems frustration, fear, suspicion, and perceived lack of control. In large part, the care facility setting leaves spousal caregivers in a vulnerable and disenfranchised position. Herein lies an effective starting point for both interventions and policy designed to empower spousal caregivers and to conceptualise environments that can enable spousal caregivers to support their spouse, while at the same time maximising their own well-being and mitigating caregiver burden. Concentrating on the experience of the alienated spousal caregiver within care facilities as a starting point provides a stimulating context to build recommendations for future practice. Furthermore, subthemes of the unifying theme ‘together but apart’ identify aspects of the spousal caregiver’s relationship with both their spouse and facility staff that can be enhanced to strengthen connections or identify existing obstacles that must be overcome.

Targets of intervention In the current research, identification and exploration of the spousal caregiving experience for a partner with ADRD suggests that a key area of intervention during caregiver transition from home to facility-based care provision revolves largely around relationships. This includes relationships of the spousal caregiver with their partner who is newly resident in a care



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facility as well as with care facility staff. Four areas of intervention to support such relationships include: preservative care, positive illusions, addressing grief associated with ambiguous loss and advocating for systemic change. Suggestions for specific interventions include: (1) Formalising the spousal caregivers’ role in preservative care. This involves provision of opportunities to uphold the spousal relationship (connection and understanding) and the self-identity of the partner with dementia. This may include more opportunities for quiet time together and opportunities for instrumental care (assisting with meals and personal care). Furthermore, preservative care includes opportunities to share information about their spouse (i.e. self-identity) with others in care facility setting. (2) Supporting the value of the life history of the spouse with dementia living in a care facility including positive illusions about their marriage and their spouse. This involves recognition of life before institutionalisation and opportunities to praise/recognise marriage history as well as opportunities to share the achievements/accomplishments of the spouse (now resident in the care facility) with others in that setting. In essence, there is a need to more specifically identify ways to support spousal caregivers in bearing witness to and celebrating the life of their spouse. This may be done by including a more fulsome marriage/life history in resident files, and including facility staff in an intake interview wherein this information is collected in more detail than is current practice. Recognition of important dates such as wedding anniversaries may also aid spousal caregivers in upholding positive illusions of marriage and their spouse. (3) Addressing grief associated with ambiguous loss. This involves education of facility staff and spousal caregivers about the dimensions of non-death related grief and significance of ambiguous loss. The present research captures a challenging period of caregiving that others have identified as a ‘life-death limbo’ (Meuser & Marwit, 2001, p. 666). Furthermore, Boss (1999) suggests that for spouses of people living with dementia, ‘labeling their loss ambiguous allows them to recognise the real source of their distress and begin the process of coping and grieving that will permit them to move on with their lives’ (p. 6). It follows that increased awareness of the mental health challenges associated with this state of limbo may improve spousal caregiver health and well-being by targeting grief associated with ambiguous loss. Specifically, increased awareness of spousal caregiver situations and needs may facilitate screening of spousal caregivers most vulnerable to grief and referral to appropriate support services in the community. (4) Acknowledging and advocating for systemic changes that impact the caregiving transition. Both spousal caregivers and facility staff identified systemic concerns that potentially impact caregivers’ transitioning roles as well as their relationships with partner’s resident in facility and with care staff. These concerns included lack of staff time, frequent staffing changes, financial/resource challenges, transportation issues, among others. Advocating for needed change via government ministries, professional associations and unions, family councils, seniors’ organisations, Alzheimer’s societies, and other mechanisms represent another possible level of engagement for staff, and in some instances, for spousal caregivers themselves. Overall, through the thematic exploration of both spousal caregivers’ and facility staffs’ textual data, this study contributes to a more contextual understanding of spousal caregivers’ lived experiences upon transition of a partner with dementia from a family home into a facility setting. Further, the central unifying theme of ‘together but apart’



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provides an overall framework within which to consider the current, as well as future, policy and practice recommendations aimed at better meeting the very particular needs of these spousal caregivers. Acknowledgements To all caregivers and facility staff who contributed to the learnings from this study.

Conflict of interest The authors declare that there is no conflict of interest.

Funding This research was supported by funding from the BC Medical Services Foundation in partnership with the BC Alzheimer Society.

References Alzheimer’s Society of Canada. (2012). Alzheimer’s disease. Retrieved from http://www.alzheimer.ca/ en/About-dementia/Alzheimer-s-disease Boss, P. (1999). Ambiguous loss: Living frozen with grief. The Harvard Mental Health Letter. Cambridge, MA: Harvard University Press. Bowers, B. J. (1988). Family perceptions of care in a nursing home. The Gerontologist, 28, 361–368. Retrieved from http://dx.doi.org/10.1093/geront/28.3.361. Carpenter, B. D., & Mak, W. (2007). Caregiving couples. Generations, 31, 47–53. Retrieved from http://web.ebscohost.com/ehost/pdfviewer/pdfviewer?vid¼3&hid¼14&sid¼fdbf6e5b588a-4667b59d-493b2d94828e%40sessionmgr14. Cohen, C. A., Gold, D. P., Shulman, K. I., Wortley, J. T., McDonald, G., & Wargon, M. (1993). Factors determining the decision to institutionalize dementing individuals: A prospective study. The Gerontologist, 33, 714–720. Colvez, A., Joe¨l, M. E., Ponton-Sanchez, A., & Royer, A. C. (2002). Health status and work burden of Alzheimer patients’ informal caregivers: Comparisons of five different care programs in the European Union. Health Policy, 60, 219–233. Crabtree, B. F., & Miller, W. L. (1999). Overview of qualitative methods. In B. F. Crabtree, & W. L. Miller (Eds.), Doing qualitative research (5th ed., pp. 3–32). Thousand Oaks, CA: Sage. Gaugler, J. E., Anderson, K. A., & Leach, C. R. (2003). Predictors of family involvement in residential long-term care. Journal of Gerontological Social Work, 42, 3–26. Gaugler, J. E., Mittelman, M. S., Hepburn, K., & Newcomer, R. (2009). Predictors of change in caregiver burden and depressive symptoms following nursing home admission. Psychology and Aging, 24, 385–396. Retrieved from http://dx.doi.org/10.1037/a00160512. Gold, D. P. (1995). When home caregiving ends: A longitudinal study of outcomes for caregivers of relatives with dementia. Journal of the American Geriatrics Society, 43, 10–17. Grant, I., Adler, K. A., Patterson, T. L., Dimsdale, J. E., Ziegler, M. G., & Irwin, M. R. (2002). Health consequences of Alzheimer’s caregiving transitions: Effects of placement and bereavement. Psychosomatic Medicine, 64, 477–486. Hertzberg, A., Ekman, S., & Axelsson, K. (2001). Staff activities and behaviour are the source of many feelings: Relatives’ interactions and relationships with staff in nursing homes. Journal of Clinical Nursing, 10, 380–388. King, S., Collins, C., Given, B., & Vredevoogd, J. (1991). Institutionalization of an elderly family member: Reactions of spouse and nonspouse caregivers. Archives of Psychiatric Nursing, 5, 323–330. Meuser, T. M., & Marwit, S. J. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist, 41, 658–670. Retrieved from gerontologist.oxfordjournals.org.



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Mirante, M. L. (2004). Community-dwelling spouse in nursing home care: Re-creating context (Doctoral dissertation). Retrieved from ProQuest dissertation and theses database (UMI No. 3144540). O’Rourke, N., Claxton, A., Kupferschmidt, A. L., Smith, J. Z., & Beattie, B. L. (2011). Marital idealization as an enduring buffer to distress among spouses of persons with Alzheimer disease. Journal of Social and Personal Relationships, 28, 117–133. Retrieved from http://dx.doi.org/10.1177/ 0265407510386135. Sandes, S., & Sharp, A. (2004). The utilization of a psychoeducational group approach for addressing issues of grief and loss in caregivers of individuals with Alzheimer disease: A pilot program. Journal of Social Work in Long-Term Care, 3, 71–89. Retrieved from http://dx.doi.org/10.1300/ J181v03n02_06. Sherman, C. W., & Boss, P. (2007). Spousal dementia caregiving in the context of late-life marriage. Dementia, 6, 245–271. DOI: 10.1177/147130120708036.

Dawn Hemingway is a long-time community activist. She is Associate Professor and Chair of the School of Social Work at the University of Northern British Columbia with an adjunct appointment in Community Health and Gender Studies. Her teaching and research interests include ageing, mental health, caregiving, community-based research and policy development, and northern/rural health/quality of life. Dawn is on the Leadership Council of the UNBC Health Research Institute, Director of Women North Network/ Northern FIRE: the Centre for Women’s Health Research at UNBC, Co-President of the BC Psychogeriatric Association, and Provincial Director for the Board Voice Society. Dawn also serves on the Steering Committee of the Northern Women’s Forum and Stand Up for the North as well as on the Board of a local women’s shelter, sexual assault centre, committee addressing homelessness and a child and youth mental health agency. In recognition of her work, Dawn has received a number of awards including the Canadian Association of Social Workers Distinguished Service and the Bridget Moran Advancement of Social Work in Northern Communities Awards. Penny MacCourt holds a Bachelors and a Masters degree in Social Work and a PhD in Interdisciplinary Studies from the University of Victoria and has held a Post-Doctoral training award. She has worked in the field of seniors’ mental health in Manitoba and British Columbia since the mid-1980s. She has worked in the community on a psychogeriatric outreach team, as a facility liaison, educator, and consultant in complex care facilities, and as a manager of a psychogeriatric inpatient assessment unit. Dr MacCourt has focused her efforts on understanding system level issues and then addressing these through developing evidence informed guidelines to guide decision makers and clinicians. She has an adjunct faculty position with the Social Work and Human Services Program at Thompson Rivers University and is a Research Affiliate at the Centre on Aging, University of Victoria. She is a founding member of the British Columbia Psychogeriatric Association (BCPGA). She is a recipient of the Queen Elizabeth II Diamond Jubilee Medal for Work with Caregivers. Joanna Pierce is a long-time resident of northern BC with extensive practice experience, she is an Associate Professor and Field Education Director in the School of Social Work at the University of Northern British Columbia. Her teaching and research interest include mental health, community development, cross-cultural communication, child welfare, and social policy. Joanna plays a leadership role in the UNBC Community Care Centre and Family



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Support Programs and serves on local and regional community organisations in a range of capacities. Tina Strudsholm is a research assistant working in academic, service delivery, and corporate domains. She has a BSc in Cellular, Molecular and Microbial Biology, a BA in Sociology, and an MSc (Population Health). Her work is driven by an overarching belief in health as a universal right, in a population health approach to address health inequities, and recognition that supportive environments can improve community health. Her past and current research revolves around the impact of social determinants of health on an ageing population, impact of retirement transition on well-being, caregiver health, and leadership competencies in public health practice. Both her work and interest are guided by a background in sociology, community health sciences, and qualitative research methodologies.


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