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Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia a
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K. Crawford , R. Digby , M. Bloomer , H. Tan & A. Williams a
School of Nursing and Midwifery, Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia b
Spiritual Health Victoria, Abbotsford, Australia Published online: 30 Sep 2014.
Click for updates To cite this article: K. Crawford, R. Digby, M. Bloomer, H. Tan & A. Williams (2015) Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia, Aging & Mental Health, 19:8, 739-746, DOI: 10.1080/13607863.2014.962008 To link to this article: http://dx.doi.org/10.1080/13607863.2014.962008
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Aging & Mental Health, 2015 Vol. 19, No. 8, 739 746, http://dx.doi.org/10.1080/13607863.2014.962008
Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia K. Crawforda*, R. Digbya, M. Bloomera, H. Tanb and A. Williamsa a
School of Nursing and Midwifery, Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia; b Spiritual Health Victoria, Abbotsford, Australia
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(Received 23 May 2014; accepted 1 September 2014) Objectives: Transitioning from the primary caregiver to the visitor in a long-term care facility may be challenging for the caregiver; they are required to surrender their caring duties to the medical and nursing staff. The aim of this study was to explore the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility. Methods: This study utilised a qualitative descriptive design. Twenty caregivers of people with dementia were recruited from the one Aged Rehabilitation and Geriatric Evaluation and Management facility, located in Victoria, Australia. Semistructured interviews were used to explore the caregiver’s experiences. Interviews were analysed using thematic analysis. Results: The interview data revealed that the participants were undergoing similar experiences. The findings revealed that it was difficult for the caregiver to transition to their new role of visitor; negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings of relief and the reassurance that their relative or friend would be well cared for and safe within the long-term care facility. Conclusion: The findings offer insight into the experiences felt by caregivers when their relative or friend with dementia is admitted to hospital. Implications of this study include the need to improve the transition process for the caregiver by allowing them to be involved in the decision-making process, keeping them informed of care decisions, and importantly, providing emotional support to help the caregiver positively adapt to this transition. Keywords: dementia; caregiving; coping; care transitions
Introduction An abundance of research has been conducted over the last two decades exploring the complex aspects of caring for a relative with dementia (Peacock, 2013) and investigating the caregiver’s experience of placing a person with dementia into a residential care facility; exploring the reasons behind the decision (Butcher, Holkup, Park, & Maas, 2001), describing the decision-making process related to placement (Park, Butcher, & Maas, 2004; Penrod & Dellasega, 1998) and exploring the caregivers experience once the person with dementia has been placed into a residential care facility (Sury, Burns, & Brodaty, 2013). However, minimal research has been conducted on exploring the experiences of the caregiver as they transition from primary caregiver at home to becoming the visitor once a person with dementia is admitted to hospital and is moving to a residential care facility. There is currently an estimated 101 million dependent older people worldwide and that number is predicted to increase nearly three-fold to 277 million in 2050; half of these people are likely to be living with and experiencing the effects of dementia (Alzheimer’s Disease International, 2013). Most of the assistance given to persons with dementia in their own home is provided by caregivers with little or no formal support (McDaid, 2001; Peacock & Forbes, 2003). The definition of a
*Corresponding author. Email: [email protected] Ó 2014 Taylor & Francis
caregiver is described as a family member, friend or neighbour who provides informal assistance to a person living in the community who is unable to care for themselves due to a disability, like dementia (Australian Institute of Health and Welfare, 2012) and excludes paid care workers. For many caregivers, caring for the person with dementia can be a rewarding and satisfying experience in many ways (Cohen, Colantonio, & Vernich, 2002). Caregivers will often provide all the regular hands-on care. However, the progressive nature of dementia will mean that caregivers often take on more and more responsibilities to ensure their relative can stay living at home for longer (Peacock & Forbes, 2003). Over time the individual with dementia will lose the ability to make decisions, manage personal affairs and perform everyday tasks such as dressing themselves or going to the toilet independently (Zimmerman et al., 2013). Caregivers may incur substantial emotional, physical and financial costs in their attempts to avoid residential care placement of the person with dementia (Covinsky et al., 2001; Haley, 1997). Caring for a person with dementia can be associated with higher levels of anxiety, depression and poorer physical health for the caregiver (Schulz & Martire, 2004; Wu, Low, Xiao, & Brodaty, 2009), which is often referred to as caregiver burden (Kasuya, PolgarBailey, & Takeuchi, 2000).
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Dementia is one of the major causes of dependence in older people and will often lead to the transition from supported living in the community into a residential care facility (Alzheimer’s Disease International, 2013). As the care requirements of the person with dementia increase, it can become difficult for the caregiver to continually provide appropriate care (Zarit & Whitlatch, 1992). Transition of the person with dementia from their home into a residential care facility often represents a ‘forced decision’, associated with an escalation of care beyond what the caregivers can manage (Alzheimer’s Disease International, 2013). Caregivers have reported that the common reasons behind their placement of the person with dementia to residential care were: an inability to cope with the increasing care demand, the requirement of 24-hour care, safety concerns for the person with dementia, healthcare professionals recommending the move, the person with dementia displaying challenging behaviour, the failing of the caregiver’s own health, and personal care or hygiene issues (Alzheimer’s Disease International, 2013). Transitioning from the primary caregiver to the visitor in a longterm care facility may be challenging for the caregiver; they are required to surrender their day-to-day caring duties to the medical and nursing staff (Nikzad-Terhune, Anderson, Newcomer, & Gaugler, 2010; Sury et al., 2013). Some caregivers may still wish to maintain a level of control over the patient’s care and can find it challenging to relinquish their role as the primary caregiver (Haesler, Bauer, & Nay, 2007). Transition to a residential care facility will often directly follow a hospital admission (Gaugler, Pearlin, Leitsch, & Davey, 2001; Sury et al., 2013) and very little research has described the caregiver’s experiences once the person with dementia has been admitted to hospital and the wait for a place in a residential care facility. The aim of this study was to provide in-depth descriptions of the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility.
Methods Design This study utilised a qualitative descriptive design; semi-structured interviews were conducted with caregivers of people with dementia to gather their experiences.
Setting This study was conducted at a 60-bed Aged Rehabilitation and Geriatric Evaluation and Management (GEM) facility, located in Victoria, Australia. This facility serves an aged patient population, transferred from an acute hospital setting, with the goal of functional rehabilitation, and complex discharge planning. Many patients admitted to the facility have a principal or co-morbid diagnosis of dementia.
Participants Purposive sampling was used to select potential study participants by a senior registered nurse researcher (Robin Digby) working within the facility. Hospital admission data was used to identify these potential participants. All participants were caregivers of people with dementia, who had been admitted to the sub-acute facility and were waiting for a position in a residential care facility. While the level of care provided to the person with dementia varied, all participants reported that they had been involved with caring for their relative or friend at home and were now involved with finding a residential care facility. Researchers initially consulted the treating clinical team regarding the suitability of caregivers, for example, in terms of their own health, language spoken and emotional state before being approached to participate. People were excluded if they were not fluent in English, they had not been involved in the care of their relative or friend, they were under 18 years old, or the patient with dementia was not moving into a residential care facility. Potential participants were approached by the researcher and given a brief explanation of the study and what participation would involve. Every person that was asked to be interviewed agreed to participate. Twenty caregivers were interviewed and there was nearly equal gender distribution; the caregiver participants consisted of six husbands, eight wives, two daughters, one son, one daughter-in-law and two friends (both males). The youngest caregiver was 34 years old and the oldest 92 years old. Sixteen of the caregivers were living with the person with dementia prior to them being admitted to hospital.
Ethical considerations Human Research Ethics approval was obtained from the university and the Aged Rehabilitation and Geriatric Evaluation and Management (GEM) facility (ID no: HREC/ 13/PH/2). Participants were informed that participation in the study was voluntary. Prior to the interviews commencing, written informed consent was obtained from each participant and throughout the study, participant anonymity was ensured by using pseudonyms.
Data collection A qualitative design with semi-structured interviews was considered the most suitable option to explore the topic. The interviews commenced with a broad question that asked the participant about how their relative or friend with dementia was; this question allowed the participant to speak about their experiences without the researcher leading the conversation. The direction of the interview was determined by what the participant said; some questions explored what their experience has been like with their relative or friend in hospital, how had they been since their relative or friend was admitted to hospital and the type of information they have received that has made
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Table 1. Interview questions.
Table 2. Core themes.
1. Please tell me a little about your relative with dementia. 2. How involved were you with your relative’s care before hospital? 3. Can you tell me what your experience has been like with your relative in hospital? 4. How has dementia impacted on your relative’s hospital experience? 5. How involved do you feel relating to decisions regarding your relative’s care? 6. Can you tell me some of the experiences you have had in relation to your relative’s hospitalisation? 7. What are the things that have affected your coping during your relative’s hospitalisation? 8. What things do you think are most important to discuss about your relative’s care? 9. What type of information have you received that has made the transition easier for you and your relative?
- The tipping point: deciding on residential care - Feelings of loss or grief - Loss of a sense of purpose - Loneliness - Adjusting to a new caregiver role - Moving along: relief from caring and knowing their relative/ friend is safe
the transition easier for them (see Table 1). Questions were based on the study researchers’ previous experience investigating caregivers of people with dementia and an understanding of what the gaps in the literature were and how these questions would add to our knowledge. Each participant was interviewed, one-on-one, in a private room in the rehabilitation facility, without their relative or friend with dementia being present. On two occasions a participant’s daughter was present during the interview but had little involvement in the interview. To ensure consistency, all interviews were conducted by the same researcher (RD). The interviews were digitally recorded and some brief demographic information about the participant was also collected prior to the interview. The interviews were conducted between April and November 2013. The interviews lasted from 14 minutes to 43 minutes (average 25.01 minutes § 7.39 (SD)). Data analysis The digital recordings were professionally transcribed verbatim and checked for accuracy by the first author. The researchers (KC, RD, MB, HT and AW) listened to the audio recordings of all interviews and read the transcripts several times to help gain an understanding of each participant’s experience. Thematic analysis using Sandelowski’s (2000) method of qualitative description was conducted to explore the experience of the caregiver during the transition of their relative or friend with dementia through hospital care and the wait for a residential aged care facility. The researchers read through each interview transcript to attempt to identify common patterns within the data and manually assigned these into different themes using highlighting markers. Themes with common ideas and associations were grouped into one individual theme.
Rigour Throughout the analysis, the researchers referred back to the interview transcripts to ensure the themes reflected the
thoughts of the study participants. Researchers met monthly to discuss the progress of the project; minutes of the meeting were recorded. When the final analyses of the interview transcripts were completed, they were compared to the ideas recorded during the monthly meetings to ensure consistency of analysis.
Results The interview data revealed that the participants were undergoing similar experiences. As caregivers spoke about their transition from the primary caregiver to the hospital visitor, six themes emerged (see Table 2).
The tipping point: deciding on residential care For all participants involved in the study, the decision to place their relative or friend with dementia in a residential care facility followed hospitalisation. Half of the participants mentioned that the hospital admission was the final tipping point for them; they had come to the realisation that they could no longer care for their relative or friend at home and residential care was the only option. One participant described his friend’s latest admission to hospital: I walked into the hospital and she was still in casualty and the girl—the nurse said, oh, here comes Jim, he’s here to take you home. I said, “Hold it, there’s more to that— we’re not taking her home ‘til, you know, we know what’s going on. . .” I didn’t know how to go about it. I didn’t like to say to her, oh, I’m going to put you into care, dear. Well, this last attack sort of opened the floor. (Jim, friend)
Prior to being admitted to hospital, a lot of the people with dementia were supervised at all times and could not be left alone, for fear that they may fall, injure themselves or leave the house and forget their way home. Commonly the person with dementia became excessively anxious if they were unable to see the caregiver, even if they were nearby. Participants started to realise that they could no longer continue the caring role. This need for a constant presence had restricted the caregiver’s social life and impacted on their well-being. One participant reported that she was rarely able to have a sufficient night’s sleep because she felt the need to maintain a constant surveillance over her husband. I wasn’t getting a lot of sleep. If I didn’t wake up when he was starting to get out of bed, he’d get up and then he’d have a fall. He wouldn’t wait for me to put the light on. (Rose, wife)
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Feelings of loss or grief Despite the person with dementia being still very much alive and now moving into a residential care facility, many caregivers said that they felt as though the person was no longer with them. It was particularly hard for the spousal caregivers because they had lived with that person for the majority of their life. When one participant was asked what it has been like for him since his wife had been in hospital, he described it as:
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I’m lost without her; even though she couldn’t always do a lot of things, but she was there and it’s hard after being together for well over 60 years. (Steve, husband)
Notwithstanding the difficulties experienced in the caring role, the spouse did not find the experience any easier but found it difficult to cope with the separation from their lifelong partner when the person with dementia was admitted to hospital. These feelings were explained by one participant as if an actual part of him was missing. It’s a very physical and mental drag on you. I mean, now I’m getting more used to it, but it’s hard to accept. After you’ve lived with somebody for 55 years, you—I don’t know. It’s like somebody’s cut your arm off. (Bruce, husband)
One participant said that it was harder to watch the dementia progress in her husband and witness him lose his memory than it would be if he had just died; the person was there but he was no longer the man she knew. It’s been a big adjustment. Like I said, if he’d have died, it would have been much better than—I would’ve just had to bury him and then do my mourning, you know. But— He’s not the man—I look at photographs and think, where have you gone? (Judy, wife)
Loss of a sense of purpose For many of the participants the role of caregiver had become a 24-hour job. They assisted with toileting, showering and cooking for the person with dementia. For some participants, the caring job had become their whole existence. However, when the person with dementia moved to hospital and the caregiver was no longer responsible for any of these jobs, some found it difficult to adjust to caring solely for themselves. Coming home to an empty house was an adjustment for most caregivers; caring for their relative or friend had kept them active but also given them a purpose. One caregiver reported that she found it difficult to adjust to no longer having her husband home with her; it was tough to transition from being the primary caregiver to no longer having that job to do. I’ve just got to get used to it and I’ve just got to start trying to live my life, and I’m not used to it. (Rose, wife)
One caregiver reported that she had been managing well with her husband’s care at home and had adjusted to being the full-time caregiver. However, after her husband
was admitted to hospital she found the situation difficult and at times, overwhelming. But this is different, like what I’m going through now. Um, I must admit I’m very strong, which I’m pleased with. But I have my moments when, you know, you get down. You think, God, why me? (Jane, wife)
Loneliness Many of the spousal caregivers reported that they had been married to their partner for 50 60 years and had lived with that person during all those years; the transition of their spouse moving into a residential facility and then having to live at home alone was hard to adjust to. One caregiver described his experience: Sometimes it makes you feel a little bit on the lonely side. I’m a bit that way now at the moment, I suppose. I just miss her not being there. . . Yeah, well, it is hard for me at times. Loneliness. I’m sitting there on my own and I doze off a bit so what I do now—and lately what I’ve been doing, I’m finishing up in bed about 9 o’clock or something whereas—well, I used to go crook at Ruby wanting to go to bed early. (Steve, husband)
Many family members had reassured the caregiver that residential care was the right decision and the only option; this support and encouragement relieved the caregiver of some of the guilt they had been feeling about the decision and made the transition to residential care slightly easier for them. Despite having family and other people supporting him with the decision, one caregiver spoke about how he was so lonely. Probably just the loneliness of it. You know, I mean, there’s nothing else. I mean, we’ve got support. (John, husband)
Adjusting to a new caregiver role When the person with dementia was admitted to hospital, some caregivers found it difficult to relinquish their caregiving role and wanted to still remain involved in the decisions concerning their relative’s or friend’s care. In order to cope with the transition, some caregivers felt that they had an ongoing responsibility to communicate their relative’s or friend’s medical needs (for example, what medication they were taking and their previous medical problems) and what foods they particularly liked or disliked. Many caregivers believed they had a specialised knowledge and were the ‘experts’ when it came to the care their relative/friend required. One caregiver felt that staying informed about his wife’s health helped him cope better with the situation; he would get frustrated if the hospital staff did not keep him updated. For instance, I don’t know if they’ve changed—if they’ve put her on different medication, which I think they have, and they’ve taken her off what she had, which I think is probably good. But nobody has confirmed that, or—I just don’t know (John, husband)
Aging & Mental Health Another caregiver reported that she preferred not to be informed about her father, stating that it was difficult to receive telephone calls about her dad, especially if she was at work and unable to leave to get to the hospital. Like getting the calls about, oh, you know, like wanting us to come down and help if he’s agitated, and that sort of thing. My brother’s obviously, you know, talked to my dad over the phone a number of times, to help calm him. I think it’s hard when you get those calls [crying] because you sort of feel like, well, we don’t really know what to do and so that puts a lot of pressure on. (Hannah, daughter)
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One caregiver said that it was frustrating to be at work and return to her mobile phone to find a handful of missed calls from the hospital, causing her to worry about her mother. She said what would be helpful is if she could advise the hospital of the best time for them to contact her. So, I would say probably, maybe there’s something we could do as to what is the best time to contact this person. So if we need to contact this person—knowing they are ringing 15 times between 10 and 12 when they’re not going to be able to answer their mobile phone. So I think something like that would be handy, knowing that you can contact this person between this time. (Dawn, daughter)
One caregiver found it difficult to leave his wife; he was concerned about the care she would receive if he was not there. It’s been sort of—very stressful because you don’t know what’s happening. I mean, you know what’s happening when you’re here but when you’re not here, you don’t know what’s happening and you come in with apprehension every day and then you either get relief or you’re sad. (Ray, husband)
Caregivers were asked what they think the hospital could be doing to help caregivers to improve the situation for them; one caregiver had a simple but broad request: Make it easier for the person who is left at home, I suppose. (Paul, husband)
When the interviews were conducted, the majority of the caregivers were still searching for a residential care facility. A lot of these caregivers mentioned the assistance they had received from the hospital, particularly the social workers, in regard to the practical tasks such as filling out forms or locating facilities. One caregiver spoke about the support he had received: Yes, the social worker. She is tremendous. That girl really is tremendous. No, she is. She’s rung me a couple of times when I’ve been at home; She pushed and pushed—out of six places to go and look at for her, she pushed and pushed for this one closest to home and she got it. That’s really good. (Peter, friend)
Some of the participants had grown up during harder times, during World War II or the Great Depression. They
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are a generation that may try to see the best of a bad situation. One older participant was asked how she was coping with the situation: I just cope anyway. Hey, you didn’t get brought up in the war and not cope, you know. (Judy, wife)
Moving along: relief from caring and knowing their relative/friend is safe One participant was asked about whether she still worried about her husband since he was admitted to hospital. No, because I know he’s looked after and I know he can’t get out. . . So, I do feel easier at home. (Wendy, wife)
Some caregivers required reassurance from the hospital staff that the person with dementia could not be adequately cared for at home and would now require fulltime permanent care. Once one caregiver had this guarantee, it became easier for her to accept the move of her husband to the residential care facility. They’ve (hospital staff) done all their research on him and they think that I wouldn’t be able to manage him, and it’s far better for me to let him be somewhere where they can look after him. (Dorothy, wife)
For one participant, it was only after her mother had been admitted to hospital that she then realised the impact of being a caregiver and she accepted that formal care was the best option for her mother and for her own well-being. Actually, I didn’t actually know how stressed I was until just after Mum went into hospital. I was out shopping and I was in a state thinking, I’ve got to get home, I’ve got to get home. I thought, no, I don’t, it’s okay, Mum’s safe. She’s in the hospital, nothing can happen to her. (Dawn, daughter)
One caregiver spoke about how things were easier for her since her husband had been in hospital; she now had the freedom to go out with her friends and was satisfied that her husband was being cared for. And look, I manage at home. You’ve got to be able to do things. I’ve got a girlfriend, I go down there generally Saturday night and we have dinner together and we go watch the footy. . . I know he’s being well looked after. Look, I switch off from it as best I can because there’s no good me putting myself into bad health. (Jane, wife)
Many caregivers reported that this latest admission to hospital was not their relative’s or their friend’s first visit; the person with dementia had been in and out of hospital over the last year and each time, they returned home. When the process of finding a residential facility had finally commenced, one caregiver described the relief that this constant back and forth had now come to an end.
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Now, I know they or the medical staff would prefer to see people go back to their own home—where they want to be but at the same time, as I said, I was hoping someone would just tick off on that and say “No, you can’t keep— you’re not going back anymore.” We’ve come to that point now but it’s taken a long time to get—and part of that problem has been my mother herself in that she was reluctant to go to a nursing home. . . The pattern was—it’s just been going around and around. (Richard, son)
The decision to place a person with dementia into residential care can be long and difficult; it took time for many of the caregivers to come to a decision and then accept the move. One caregiver reported how she had come to accept the decision.
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But there’s nothing I can do about it so I’ve got to toughen up and say—it’s better for him, anyway. I couldn’t look after him the way they do. (Barbara, wife)
Whereas, for one caregiver, the choice to place their friend in a residential facility had been straightforward; he understood that his friend would receive better care than he could provide at home. Well, that’s the best place for her. I can’t be there 24/7. I mean, I’d like to be but I can’t. (Peter, friend)
Discussion This study highlighted the experience of the caregiver as their relative or friend moved through the hospital system and was waiting for a place in a residential care facility; both the negative and positive feelings associated with this transition. Negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings; the caregivers now had time to socialise with friends, they were reassured that their relative or friend would be well cared for and safe within the residential care facility. The results of this study are congruent with Davies and Nolan (2003, 2004), although not specific to dementia, the caregivers were required to balance the negative feelings in relation to their decision about the residential care placement against their knowledge that the person would receive better care than could be provided at home. Most of the caregivers who were interviewed in the current study were still trying to find a place in a residential facility for their relative/friend; the uncertainty and stress of trying to find a suitable place, together with the pressure of not missing out on a place may have resulted in more negative responses from the participants. Previous studies have shown that caregiver burden and depressive symptoms increased during admission of a relative with dementia to hospital (Gaugler, Mittelman, Hepburn, & Newcomer, 2009). Once the person with dementia is admitted to residential care, the caregiver can relinquish their job as the primary caregiver and often, caregiver burden, depression and stress will decrease (Gaugler, Roth, Haley, & Mittelman, 2008).
The priority of each caregiver was to find a suitable place for their relative or friend; caregivers were relying on the social workers to assist them to identify a facility and provide guidance in order for them to make an informed decision. Many caregivers repeatedly spoke positively about the social worker throughout the interview. Other studies have highlighted the importance of caregivers establishing a relationship and interacting with health care professionals; Bramble, Moyle, and McAllister (2009) explored the experience of the family caregiver who had placed a relative into long-term care, they found that it was important to build partnerships between families and the nursing home staff. Our study found that this partnership formed between the caregiver and the social worker, many caregivers could name the social worker they were working with and depended on their support to find a residential care facility. However, the caregivers placed less emphasis on developing a relationship with the nursing staff caring for their relative or friend, possibly because the stay in hospital was a short-term solution and shortly, the person with dementia would move to a residential care facility. The lengths of the interviews were not associated with the participant’s gender or their relationship to the person with dementia or the information divulged. In some longer interviews, the participant spoke a lot about their relative or friend prior to the diagnosis of dementia and then the progression of dementia. The four longest interviews were with a wife, husband, daughter and a friend. On the other hand, the four shortest interviews were with a husband, wife, daughter-in-law and a friend. The 16 caregivers that were living with the person with dementia prior to hospital admission, particularly the spousal caregivers, were more inclined to speak about feelings of loneliness, loss and struggled with finding the motivation to now care for only themselves. These feelings will continue after residential care admission; Davies and Nolan (2004) found the process of adjustment after their relative with dementia was admitted to a residential facility was harder if the caregiver had been living with that person prior to admission; caregivers spoke of a void left by the absence of their relative. Studies have explored the caregiver’s experience of making the decision to place a family member with dementia into residential care (Butcher et al., 2001) and the reasons behind the placement (Buhr, Kuchibhatla, & Clipp, 2006). Our study has taken this one step further, investigating the experiences the caregiver underwent when their relative or friend was admitted to hospital and the impact of moving from the primary caregiver to the ‘visitor’ as the person with dementia prepares to move to residential care. Considerably more research has been conducted on how caregivers or families adjust after the person with dementia has moved into residential care. The systematic review by Sury et al. (2013) explored the adjustment by both residents and their caregivers to admission to residential care, highlighting the varied emotions of loss, regret, sadness, guilt, stress and ongoing burden that were experienced by caregivers. As our study showed, these reactions occur prior to residential care
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admission when the person with dementia was admitted to hospital; caregivers were overwhelmed by mixed emotions. The admittance of the person with dementia to hospital was a stressful event for many of the caregivers, as they no longer had that person with them at home and it was difficult to give up the caregiving role altogether; some felt that they had an ongoing responsibility to communicate their relative’s or friend’s medical needs. The people with dementia represented a challenging group of patients; their cognitive impairment restricted their ability to articulate their wishes and also to understand that they would now move to a residential care facility. The transition from primary caregiver to the visitor is probably more difficult for those caregivers looking after a person with dementia, compared to other caregivers because they had an important job in advocating on behalf of the person with dementia and organising their care. Therefore caregivers of people with dementia will face a different journey to other caregivers.
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residential care facility. This study highlights the need for further research to explore the experiences of caregivers of people with dementia during this phase of transition; research should focus on recruiting participants from different facilities who are also at the same stage of transition as the cohort in this study. Research could lead to the development of recommendations of best practice for caregivers in transitional care to ensure that the transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility can be made easier for the caregiver. One implication from this study is the need to improve the transition process for the caregiver. Health professionals need to ensure that they allow the caregiver to be involved in the decision-making process, reiterate that they are not alone during this process, keep them informed and importantly, provide emotional support to the caregiver to help them adjust to this transition. Acknowledgements
Study limitations This study recruited interview participants from the one Aged Rehabilitation and Geriatric Evaluation and Management (GEM) facility, the experiences of these participants may not be congruent with all caregivers of people with dementia who were admitted to other facilities. However, a strength of this study was the ability to interview a heterogeneous group of caregivers, with a range of ages, nearly equal representation from each gender and different relationships between the participant and the person with dementia, adding to the richness of the data. Conclusion During a hospital stay, the focus is on the patient and not the caregiver; rarely does someone ask how the caregiver is feeling and how they are coping. These interviews gave the caregiver the opportunity to speak to someone about themselves. Many participants enjoyed having someone to talk to and to have the opportunity to tell their stories. Many of the caregivers felt that they were the first person to undergo this process. However, the results demonstrate that many caregivers are undergoing similar experiences. Many caregivers struggled with the decision and they required guidance and support during the transition of their relative/friend through hospital and the move into residential care. It is clear that caregiver involvement in dementia care will not only continue in the future but will grow as more people take on this responsibility, as our population becomes older and more people are diagnosed with dementia. Therefore, it is important that as the caregivers are transitioning to the visitor they supported by hospital staff, especially social workers and discharge planners to ensure that their importance as the primary caregiver is not underestimated. Caregivers are vital in the community; they enable someone to stay living in their home for longer, which means there are less early admissions into a
Special thanks are due to the caregivers who kindly agreed to participate in this study and the staff at the Aged Rehabilitation and Geriatric Evaluation Management facility who assisted with recruitment.
Funding This work was supported by the Windermere Foundation under the Mary Patten Special Grant [grant number SG06-13].
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Park, M., Butcher, H.K., & Maas, M.L. (2004). A thematic analysis of Korean family caregivers’ experiences in making the decision to place a family member with dementia in a long-term care facility. Research in Nursing & Health, 27 (5), 345 356. doi:10.1002/nur.20031 Peacock, S.C. (2013). The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review. Palliative & Supportive Care, 11(2), 155 168. doi:10.1017/S1478951512000831 Peacock, S.C., & Forbes, D.A. (2003). Interventions for caregivers of persons with dementia: A systematic review. The Canadian Journal of Nursing Research, 35(4), 88 107. Retrieved from: http://www.ncbi.nlm.nih.gov/pubmed/14746123 Penrod, J., & Dellasega, C. (1998). Caregivers’ experiences in making placement decisions. Western Journal of Nursing Research, 20(6), 706 722. Retrieved from: http://dx.doi. org/10.1177/019394599802000604 Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334 340. doi:10.1002/1098-240X(200008)23:43.0.CO;2-G Schulz, R., & Martire, L.M. (2004). Family caregiving of persons with dementia—Prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12(3), 240 249. doi:10.1176/appi.ajgp.12.3.240 Sury, L., Burns, K., & Brodaty, H. (2013). Moving in: Adjustment of people living with dementia going into a nursing home and their families. International Psychogeriatrics, 25 (6), 867 876. doi:10.1017/S1041610213000057 Wu, H.Z.Y., Low, L.F., Xiao, S.F., & Brodaty, H. (2009). Differences in psychological morbidity among Australian and Chinese caregivers of persons with dementia in residential care. International Journal of Geriatric Psychiatry, 24(12), 1343 1351. doi:10.1002/gps.2264 Zarit, S.H., & Whitlatch, C.J. (1992). Institutional placement— phases of the transition. Gerontologist, 32(5), 665 672. Retrieved from: http://dx.doi.org/10.1093/geront/32.5.665 Zimmerman, S., Anderson, W.L., Brode, S., Jonas, D., Lux, L., Beeber, A.S., . . . Sloane, P.D. (2013). Systematic review: Effective characteristics of nursing homes and other residential long-term care settings for people with dementia. Journal of the American Geriatrics Society, 61(8), 1399 1409. doi:10.1111/jgs.12372
Aging & Mental Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/camh20
Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia a
a
a
b
a
K. Crawford , R. Digby , M. Bloomer , H. Tan & A. Williams a
School of Nursing and Midwifery, Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia b
Spiritual Health Victoria, Abbotsford, Australia Published online: 30 Sep 2014.
Click for updates To cite this article: K. Crawford, R. Digby, M. Bloomer, H. Tan & A. Williams (2015) Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia, Aging & Mental Health, 19:8, 739-746, DOI: 10.1080/13607863.2014.962008 To link to this article: http://dx.doi.org/10.1080/13607863.2014.962008
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Aging & Mental Health, 2015 Vol. 19, No. 8, 739 746, http://dx.doi.org/10.1080/13607863.2014.962008
Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia K. Crawforda*, R. Digbya, M. Bloomera, H. Tanb and A. Williamsa a
School of Nursing and Midwifery, Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia; b Spiritual Health Victoria, Abbotsford, Australia
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(Received 23 May 2014; accepted 1 September 2014) Objectives: Transitioning from the primary caregiver to the visitor in a long-term care facility may be challenging for the caregiver; they are required to surrender their caring duties to the medical and nursing staff. The aim of this study was to explore the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility. Methods: This study utilised a qualitative descriptive design. Twenty caregivers of people with dementia were recruited from the one Aged Rehabilitation and Geriatric Evaluation and Management facility, located in Victoria, Australia. Semistructured interviews were used to explore the caregiver’s experiences. Interviews were analysed using thematic analysis. Results: The interview data revealed that the participants were undergoing similar experiences. The findings revealed that it was difficult for the caregiver to transition to their new role of visitor; negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings of relief and the reassurance that their relative or friend would be well cared for and safe within the long-term care facility. Conclusion: The findings offer insight into the experiences felt by caregivers when their relative or friend with dementia is admitted to hospital. Implications of this study include the need to improve the transition process for the caregiver by allowing them to be involved in the decision-making process, keeping them informed of care decisions, and importantly, providing emotional support to help the caregiver positively adapt to this transition. Keywords: dementia; caregiving; coping; care transitions
Introduction An abundance of research has been conducted over the last two decades exploring the complex aspects of caring for a relative with dementia (Peacock, 2013) and investigating the caregiver’s experience of placing a person with dementia into a residential care facility; exploring the reasons behind the decision (Butcher, Holkup, Park, & Maas, 2001), describing the decision-making process related to placement (Park, Butcher, & Maas, 2004; Penrod & Dellasega, 1998) and exploring the caregivers experience once the person with dementia has been placed into a residential care facility (Sury, Burns, & Brodaty, 2013). However, minimal research has been conducted on exploring the experiences of the caregiver as they transition from primary caregiver at home to becoming the visitor once a person with dementia is admitted to hospital and is moving to a residential care facility. There is currently an estimated 101 million dependent older people worldwide and that number is predicted to increase nearly three-fold to 277 million in 2050; half of these people are likely to be living with and experiencing the effects of dementia (Alzheimer’s Disease International, 2013). Most of the assistance given to persons with dementia in their own home is provided by caregivers with little or no formal support (McDaid, 2001; Peacock & Forbes, 2003). The definition of a
*Corresponding author. Email: [email protected] Ó 2014 Taylor & Francis
caregiver is described as a family member, friend or neighbour who provides informal assistance to a person living in the community who is unable to care for themselves due to a disability, like dementia (Australian Institute of Health and Welfare, 2012) and excludes paid care workers. For many caregivers, caring for the person with dementia can be a rewarding and satisfying experience in many ways (Cohen, Colantonio, & Vernich, 2002). Caregivers will often provide all the regular hands-on care. However, the progressive nature of dementia will mean that caregivers often take on more and more responsibilities to ensure their relative can stay living at home for longer (Peacock & Forbes, 2003). Over time the individual with dementia will lose the ability to make decisions, manage personal affairs and perform everyday tasks such as dressing themselves or going to the toilet independently (Zimmerman et al., 2013). Caregivers may incur substantial emotional, physical and financial costs in their attempts to avoid residential care placement of the person with dementia (Covinsky et al., 2001; Haley, 1997). Caring for a person with dementia can be associated with higher levels of anxiety, depression and poorer physical health for the caregiver (Schulz & Martire, 2004; Wu, Low, Xiao, & Brodaty, 2009), which is often referred to as caregiver burden (Kasuya, PolgarBailey, & Takeuchi, 2000).
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Dementia is one of the major causes of dependence in older people and will often lead to the transition from supported living in the community into a residential care facility (Alzheimer’s Disease International, 2013). As the care requirements of the person with dementia increase, it can become difficult for the caregiver to continually provide appropriate care (Zarit & Whitlatch, 1992). Transition of the person with dementia from their home into a residential care facility often represents a ‘forced decision’, associated with an escalation of care beyond what the caregivers can manage (Alzheimer’s Disease International, 2013). Caregivers have reported that the common reasons behind their placement of the person with dementia to residential care were: an inability to cope with the increasing care demand, the requirement of 24-hour care, safety concerns for the person with dementia, healthcare professionals recommending the move, the person with dementia displaying challenging behaviour, the failing of the caregiver’s own health, and personal care or hygiene issues (Alzheimer’s Disease International, 2013). Transitioning from the primary caregiver to the visitor in a longterm care facility may be challenging for the caregiver; they are required to surrender their day-to-day caring duties to the medical and nursing staff (Nikzad-Terhune, Anderson, Newcomer, & Gaugler, 2010; Sury et al., 2013). Some caregivers may still wish to maintain a level of control over the patient’s care and can find it challenging to relinquish their role as the primary caregiver (Haesler, Bauer, & Nay, 2007). Transition to a residential care facility will often directly follow a hospital admission (Gaugler, Pearlin, Leitsch, & Davey, 2001; Sury et al., 2013) and very little research has described the caregiver’s experiences once the person with dementia has been admitted to hospital and the wait for a place in a residential care facility. The aim of this study was to provide in-depth descriptions of the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility.
Methods Design This study utilised a qualitative descriptive design; semi-structured interviews were conducted with caregivers of people with dementia to gather their experiences.
Setting This study was conducted at a 60-bed Aged Rehabilitation and Geriatric Evaluation and Management (GEM) facility, located in Victoria, Australia. This facility serves an aged patient population, transferred from an acute hospital setting, with the goal of functional rehabilitation, and complex discharge planning. Many patients admitted to the facility have a principal or co-morbid diagnosis of dementia.
Participants Purposive sampling was used to select potential study participants by a senior registered nurse researcher (Robin Digby) working within the facility. Hospital admission data was used to identify these potential participants. All participants were caregivers of people with dementia, who had been admitted to the sub-acute facility and were waiting for a position in a residential care facility. While the level of care provided to the person with dementia varied, all participants reported that they had been involved with caring for their relative or friend at home and were now involved with finding a residential care facility. Researchers initially consulted the treating clinical team regarding the suitability of caregivers, for example, in terms of their own health, language spoken and emotional state before being approached to participate. People were excluded if they were not fluent in English, they had not been involved in the care of their relative or friend, they were under 18 years old, or the patient with dementia was not moving into a residential care facility. Potential participants were approached by the researcher and given a brief explanation of the study and what participation would involve. Every person that was asked to be interviewed agreed to participate. Twenty caregivers were interviewed and there was nearly equal gender distribution; the caregiver participants consisted of six husbands, eight wives, two daughters, one son, one daughter-in-law and two friends (both males). The youngest caregiver was 34 years old and the oldest 92 years old. Sixteen of the caregivers were living with the person with dementia prior to them being admitted to hospital.
Ethical considerations Human Research Ethics approval was obtained from the university and the Aged Rehabilitation and Geriatric Evaluation and Management (GEM) facility (ID no: HREC/ 13/PH/2). Participants were informed that participation in the study was voluntary. Prior to the interviews commencing, written informed consent was obtained from each participant and throughout the study, participant anonymity was ensured by using pseudonyms.
Data collection A qualitative design with semi-structured interviews was considered the most suitable option to explore the topic. The interviews commenced with a broad question that asked the participant about how their relative or friend with dementia was; this question allowed the participant to speak about their experiences without the researcher leading the conversation. The direction of the interview was determined by what the participant said; some questions explored what their experience has been like with their relative or friend in hospital, how had they been since their relative or friend was admitted to hospital and the type of information they have received that has made
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Table 1. Interview questions.
Table 2. Core themes.
1. Please tell me a little about your relative with dementia. 2. How involved were you with your relative’s care before hospital? 3. Can you tell me what your experience has been like with your relative in hospital? 4. How has dementia impacted on your relative’s hospital experience? 5. How involved do you feel relating to decisions regarding your relative’s care? 6. Can you tell me some of the experiences you have had in relation to your relative’s hospitalisation? 7. What are the things that have affected your coping during your relative’s hospitalisation? 8. What things do you think are most important to discuss about your relative’s care? 9. What type of information have you received that has made the transition easier for you and your relative?
- The tipping point: deciding on residential care - Feelings of loss or grief - Loss of a sense of purpose - Loneliness - Adjusting to a new caregiver role - Moving along: relief from caring and knowing their relative/ friend is safe
the transition easier for them (see Table 1). Questions were based on the study researchers’ previous experience investigating caregivers of people with dementia and an understanding of what the gaps in the literature were and how these questions would add to our knowledge. Each participant was interviewed, one-on-one, in a private room in the rehabilitation facility, without their relative or friend with dementia being present. On two occasions a participant’s daughter was present during the interview but had little involvement in the interview. To ensure consistency, all interviews were conducted by the same researcher (RD). The interviews were digitally recorded and some brief demographic information about the participant was also collected prior to the interview. The interviews were conducted between April and November 2013. The interviews lasted from 14 minutes to 43 minutes (average 25.01 minutes § 7.39 (SD)). Data analysis The digital recordings were professionally transcribed verbatim and checked for accuracy by the first author. The researchers (KC, RD, MB, HT and AW) listened to the audio recordings of all interviews and read the transcripts several times to help gain an understanding of each participant’s experience. Thematic analysis using Sandelowski’s (2000) method of qualitative description was conducted to explore the experience of the caregiver during the transition of their relative or friend with dementia through hospital care and the wait for a residential aged care facility. The researchers read through each interview transcript to attempt to identify common patterns within the data and manually assigned these into different themes using highlighting markers. Themes with common ideas and associations were grouped into one individual theme.
Rigour Throughout the analysis, the researchers referred back to the interview transcripts to ensure the themes reflected the
thoughts of the study participants. Researchers met monthly to discuss the progress of the project; minutes of the meeting were recorded. When the final analyses of the interview transcripts were completed, they were compared to the ideas recorded during the monthly meetings to ensure consistency of analysis.
Results The interview data revealed that the participants were undergoing similar experiences. As caregivers spoke about their transition from the primary caregiver to the hospital visitor, six themes emerged (see Table 2).
The tipping point: deciding on residential care For all participants involved in the study, the decision to place their relative or friend with dementia in a residential care facility followed hospitalisation. Half of the participants mentioned that the hospital admission was the final tipping point for them; they had come to the realisation that they could no longer care for their relative or friend at home and residential care was the only option. One participant described his friend’s latest admission to hospital: I walked into the hospital and she was still in casualty and the girl—the nurse said, oh, here comes Jim, he’s here to take you home. I said, “Hold it, there’s more to that— we’re not taking her home ‘til, you know, we know what’s going on. . .” I didn’t know how to go about it. I didn’t like to say to her, oh, I’m going to put you into care, dear. Well, this last attack sort of opened the floor. (Jim, friend)
Prior to being admitted to hospital, a lot of the people with dementia were supervised at all times and could not be left alone, for fear that they may fall, injure themselves or leave the house and forget their way home. Commonly the person with dementia became excessively anxious if they were unable to see the caregiver, even if they were nearby. Participants started to realise that they could no longer continue the caring role. This need for a constant presence had restricted the caregiver’s social life and impacted on their well-being. One participant reported that she was rarely able to have a sufficient night’s sleep because she felt the need to maintain a constant surveillance over her husband. I wasn’t getting a lot of sleep. If I didn’t wake up when he was starting to get out of bed, he’d get up and then he’d have a fall. He wouldn’t wait for me to put the light on. (Rose, wife)
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Feelings of loss or grief Despite the person with dementia being still very much alive and now moving into a residential care facility, many caregivers said that they felt as though the person was no longer with them. It was particularly hard for the spousal caregivers because they had lived with that person for the majority of their life. When one participant was asked what it has been like for him since his wife had been in hospital, he described it as:
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I’m lost without her; even though she couldn’t always do a lot of things, but she was there and it’s hard after being together for well over 60 years. (Steve, husband)
Notwithstanding the difficulties experienced in the caring role, the spouse did not find the experience any easier but found it difficult to cope with the separation from their lifelong partner when the person with dementia was admitted to hospital. These feelings were explained by one participant as if an actual part of him was missing. It’s a very physical and mental drag on you. I mean, now I’m getting more used to it, but it’s hard to accept. After you’ve lived with somebody for 55 years, you—I don’t know. It’s like somebody’s cut your arm off. (Bruce, husband)
One participant said that it was harder to watch the dementia progress in her husband and witness him lose his memory than it would be if he had just died; the person was there but he was no longer the man she knew. It’s been a big adjustment. Like I said, if he’d have died, it would have been much better than—I would’ve just had to bury him and then do my mourning, you know. But— He’s not the man—I look at photographs and think, where have you gone? (Judy, wife)
Loss of a sense of purpose For many of the participants the role of caregiver had become a 24-hour job. They assisted with toileting, showering and cooking for the person with dementia. For some participants, the caring job had become their whole existence. However, when the person with dementia moved to hospital and the caregiver was no longer responsible for any of these jobs, some found it difficult to adjust to caring solely for themselves. Coming home to an empty house was an adjustment for most caregivers; caring for their relative or friend had kept them active but also given them a purpose. One caregiver reported that she found it difficult to adjust to no longer having her husband home with her; it was tough to transition from being the primary caregiver to no longer having that job to do. I’ve just got to get used to it and I’ve just got to start trying to live my life, and I’m not used to it. (Rose, wife)
One caregiver reported that she had been managing well with her husband’s care at home and had adjusted to being the full-time caregiver. However, after her husband
was admitted to hospital she found the situation difficult and at times, overwhelming. But this is different, like what I’m going through now. Um, I must admit I’m very strong, which I’m pleased with. But I have my moments when, you know, you get down. You think, God, why me? (Jane, wife)
Loneliness Many of the spousal caregivers reported that they had been married to their partner for 50 60 years and had lived with that person during all those years; the transition of their spouse moving into a residential facility and then having to live at home alone was hard to adjust to. One caregiver described his experience: Sometimes it makes you feel a little bit on the lonely side. I’m a bit that way now at the moment, I suppose. I just miss her not being there. . . Yeah, well, it is hard for me at times. Loneliness. I’m sitting there on my own and I doze off a bit so what I do now—and lately what I’ve been doing, I’m finishing up in bed about 9 o’clock or something whereas—well, I used to go crook at Ruby wanting to go to bed early. (Steve, husband)
Many family members had reassured the caregiver that residential care was the right decision and the only option; this support and encouragement relieved the caregiver of some of the guilt they had been feeling about the decision and made the transition to residential care slightly easier for them. Despite having family and other people supporting him with the decision, one caregiver spoke about how he was so lonely. Probably just the loneliness of it. You know, I mean, there’s nothing else. I mean, we’ve got support. (John, husband)
Adjusting to a new caregiver role When the person with dementia was admitted to hospital, some caregivers found it difficult to relinquish their caregiving role and wanted to still remain involved in the decisions concerning their relative’s or friend’s care. In order to cope with the transition, some caregivers felt that they had an ongoing responsibility to communicate their relative’s or friend’s medical needs (for example, what medication they were taking and their previous medical problems) and what foods they particularly liked or disliked. Many caregivers believed they had a specialised knowledge and were the ‘experts’ when it came to the care their relative/friend required. One caregiver felt that staying informed about his wife’s health helped him cope better with the situation; he would get frustrated if the hospital staff did not keep him updated. For instance, I don’t know if they’ve changed—if they’ve put her on different medication, which I think they have, and they’ve taken her off what she had, which I think is probably good. But nobody has confirmed that, or—I just don’t know (John, husband)
Aging & Mental Health Another caregiver reported that she preferred not to be informed about her father, stating that it was difficult to receive telephone calls about her dad, especially if she was at work and unable to leave to get to the hospital. Like getting the calls about, oh, you know, like wanting us to come down and help if he’s agitated, and that sort of thing. My brother’s obviously, you know, talked to my dad over the phone a number of times, to help calm him. I think it’s hard when you get those calls [crying] because you sort of feel like, well, we don’t really know what to do and so that puts a lot of pressure on. (Hannah, daughter)
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One caregiver said that it was frustrating to be at work and return to her mobile phone to find a handful of missed calls from the hospital, causing her to worry about her mother. She said what would be helpful is if she could advise the hospital of the best time for them to contact her. So, I would say probably, maybe there’s something we could do as to what is the best time to contact this person. So if we need to contact this person—knowing they are ringing 15 times between 10 and 12 when they’re not going to be able to answer their mobile phone. So I think something like that would be handy, knowing that you can contact this person between this time. (Dawn, daughter)
One caregiver found it difficult to leave his wife; he was concerned about the care she would receive if he was not there. It’s been sort of—very stressful because you don’t know what’s happening. I mean, you know what’s happening when you’re here but when you’re not here, you don’t know what’s happening and you come in with apprehension every day and then you either get relief or you’re sad. (Ray, husband)
Caregivers were asked what they think the hospital could be doing to help caregivers to improve the situation for them; one caregiver had a simple but broad request: Make it easier for the person who is left at home, I suppose. (Paul, husband)
When the interviews were conducted, the majority of the caregivers were still searching for a residential care facility. A lot of these caregivers mentioned the assistance they had received from the hospital, particularly the social workers, in regard to the practical tasks such as filling out forms or locating facilities. One caregiver spoke about the support he had received: Yes, the social worker. She is tremendous. That girl really is tremendous. No, she is. She’s rung me a couple of times when I’ve been at home; She pushed and pushed—out of six places to go and look at for her, she pushed and pushed for this one closest to home and she got it. That’s really good. (Peter, friend)
Some of the participants had grown up during harder times, during World War II or the Great Depression. They
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are a generation that may try to see the best of a bad situation. One older participant was asked how she was coping with the situation: I just cope anyway. Hey, you didn’t get brought up in the war and not cope, you know. (Judy, wife)
Moving along: relief from caring and knowing their relative/friend is safe One participant was asked about whether she still worried about her husband since he was admitted to hospital. No, because I know he’s looked after and I know he can’t get out. . . So, I do feel easier at home. (Wendy, wife)
Some caregivers required reassurance from the hospital staff that the person with dementia could not be adequately cared for at home and would now require fulltime permanent care. Once one caregiver had this guarantee, it became easier for her to accept the move of her husband to the residential care facility. They’ve (hospital staff) done all their research on him and they think that I wouldn’t be able to manage him, and it’s far better for me to let him be somewhere where they can look after him. (Dorothy, wife)
For one participant, it was only after her mother had been admitted to hospital that she then realised the impact of being a caregiver and she accepted that formal care was the best option for her mother and for her own well-being. Actually, I didn’t actually know how stressed I was until just after Mum went into hospital. I was out shopping and I was in a state thinking, I’ve got to get home, I’ve got to get home. I thought, no, I don’t, it’s okay, Mum’s safe. She’s in the hospital, nothing can happen to her. (Dawn, daughter)
One caregiver spoke about how things were easier for her since her husband had been in hospital; she now had the freedom to go out with her friends and was satisfied that her husband was being cared for. And look, I manage at home. You’ve got to be able to do things. I’ve got a girlfriend, I go down there generally Saturday night and we have dinner together and we go watch the footy. . . I know he’s being well looked after. Look, I switch off from it as best I can because there’s no good me putting myself into bad health. (Jane, wife)
Many caregivers reported that this latest admission to hospital was not their relative’s or their friend’s first visit; the person with dementia had been in and out of hospital over the last year and each time, they returned home. When the process of finding a residential facility had finally commenced, one caregiver described the relief that this constant back and forth had now come to an end.
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Now, I know they or the medical staff would prefer to see people go back to their own home—where they want to be but at the same time, as I said, I was hoping someone would just tick off on that and say “No, you can’t keep— you’re not going back anymore.” We’ve come to that point now but it’s taken a long time to get—and part of that problem has been my mother herself in that she was reluctant to go to a nursing home. . . The pattern was—it’s just been going around and around. (Richard, son)
The decision to place a person with dementia into residential care can be long and difficult; it took time for many of the caregivers to come to a decision and then accept the move. One caregiver reported how she had come to accept the decision.
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But there’s nothing I can do about it so I’ve got to toughen up and say—it’s better for him, anyway. I couldn’t look after him the way they do. (Barbara, wife)
Whereas, for one caregiver, the choice to place their friend in a residential facility had been straightforward; he understood that his friend would receive better care than he could provide at home. Well, that’s the best place for her. I can’t be there 24/7. I mean, I’d like to be but I can’t. (Peter, friend)
Discussion This study highlighted the experience of the caregiver as their relative or friend moved through the hospital system and was waiting for a place in a residential care facility; both the negative and positive feelings associated with this transition. Negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings; the caregivers now had time to socialise with friends, they were reassured that their relative or friend would be well cared for and safe within the residential care facility. The results of this study are congruent with Davies and Nolan (2003, 2004), although not specific to dementia, the caregivers were required to balance the negative feelings in relation to their decision about the residential care placement against their knowledge that the person would receive better care than could be provided at home. Most of the caregivers who were interviewed in the current study were still trying to find a place in a residential facility for their relative/friend; the uncertainty and stress of trying to find a suitable place, together with the pressure of not missing out on a place may have resulted in more negative responses from the participants. Previous studies have shown that caregiver burden and depressive symptoms increased during admission of a relative with dementia to hospital (Gaugler, Mittelman, Hepburn, & Newcomer, 2009). Once the person with dementia is admitted to residential care, the caregiver can relinquish their job as the primary caregiver and often, caregiver burden, depression and stress will decrease (Gaugler, Roth, Haley, & Mittelman, 2008).
The priority of each caregiver was to find a suitable place for their relative or friend; caregivers were relying on the social workers to assist them to identify a facility and provide guidance in order for them to make an informed decision. Many caregivers repeatedly spoke positively about the social worker throughout the interview. Other studies have highlighted the importance of caregivers establishing a relationship and interacting with health care professionals; Bramble, Moyle, and McAllister (2009) explored the experience of the family caregiver who had placed a relative into long-term care, they found that it was important to build partnerships between families and the nursing home staff. Our study found that this partnership formed between the caregiver and the social worker, many caregivers could name the social worker they were working with and depended on their support to find a residential care facility. However, the caregivers placed less emphasis on developing a relationship with the nursing staff caring for their relative or friend, possibly because the stay in hospital was a short-term solution and shortly, the person with dementia would move to a residential care facility. The lengths of the interviews were not associated with the participant’s gender or their relationship to the person with dementia or the information divulged. In some longer interviews, the participant spoke a lot about their relative or friend prior to the diagnosis of dementia and then the progression of dementia. The four longest interviews were with a wife, husband, daughter and a friend. On the other hand, the four shortest interviews were with a husband, wife, daughter-in-law and a friend. The 16 caregivers that were living with the person with dementia prior to hospital admission, particularly the spousal caregivers, were more inclined to speak about feelings of loneliness, loss and struggled with finding the motivation to now care for only themselves. These feelings will continue after residential care admission; Davies and Nolan (2004) found the process of adjustment after their relative with dementia was admitted to a residential facility was harder if the caregiver had been living with that person prior to admission; caregivers spoke of a void left by the absence of their relative. Studies have explored the caregiver’s experience of making the decision to place a family member with dementia into residential care (Butcher et al., 2001) and the reasons behind the placement (Buhr, Kuchibhatla, & Clipp, 2006). Our study has taken this one step further, investigating the experiences the caregiver underwent when their relative or friend was admitted to hospital and the impact of moving from the primary caregiver to the ‘visitor’ as the person with dementia prepares to move to residential care. Considerably more research has been conducted on how caregivers or families adjust after the person with dementia has moved into residential care. The systematic review by Sury et al. (2013) explored the adjustment by both residents and their caregivers to admission to residential care, highlighting the varied emotions of loss, regret, sadness, guilt, stress and ongoing burden that were experienced by caregivers. As our study showed, these reactions occur prior to residential care
Aging & Mental Health
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admission when the person with dementia was admitted to hospital; caregivers were overwhelmed by mixed emotions. The admittance of the person with dementia to hospital was a stressful event for many of the caregivers, as they no longer had that person with them at home and it was difficult to give up the caregiving role altogether; some felt that they had an ongoing responsibility to communicate their relative’s or friend’s medical needs. The people with dementia represented a challenging group of patients; their cognitive impairment restricted their ability to articulate their wishes and also to understand that they would now move to a residential care facility. The transition from primary caregiver to the visitor is probably more difficult for those caregivers looking after a person with dementia, compared to other caregivers because they had an important job in advocating on behalf of the person with dementia and organising their care. Therefore caregivers of people with dementia will face a different journey to other caregivers.
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residential care facility. This study highlights the need for further research to explore the experiences of caregivers of people with dementia during this phase of transition; research should focus on recruiting participants from different facilities who are also at the same stage of transition as the cohort in this study. Research could lead to the development of recommendations of best practice for caregivers in transitional care to ensure that the transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility can be made easier for the caregiver. One implication from this study is the need to improve the transition process for the caregiver. Health professionals need to ensure that they allow the caregiver to be involved in the decision-making process, reiterate that they are not alone during this process, keep them informed and importantly, provide emotional support to the caregiver to help them adjust to this transition. Acknowledgements
Study limitations This study recruited interview participants from the one Aged Rehabilitation and Geriatric Evaluation and Management (GEM) facility, the experiences of these participants may not be congruent with all caregivers of people with dementia who were admitted to other facilities. However, a strength of this study was the ability to interview a heterogeneous group of caregivers, with a range of ages, nearly equal representation from each gender and different relationships between the participant and the person with dementia, adding to the richness of the data. Conclusion During a hospital stay, the focus is on the patient and not the caregiver; rarely does someone ask how the caregiver is feeling and how they are coping. These interviews gave the caregiver the opportunity to speak to someone about themselves. Many participants enjoyed having someone to talk to and to have the opportunity to tell their stories. Many of the caregivers felt that they were the first person to undergo this process. However, the results demonstrate that many caregivers are undergoing similar experiences. Many caregivers struggled with the decision and they required guidance and support during the transition of their relative/friend through hospital and the move into residential care. It is clear that caregiver involvement in dementia care will not only continue in the future but will grow as more people take on this responsibility, as our population becomes older and more people are diagnosed with dementia. Therefore, it is important that as the caregivers are transitioning to the visitor they supported by hospital staff, especially social workers and discharge planners to ensure that their importance as the primary caregiver is not underestimated. Caregivers are vital in the community; they enable someone to stay living in their home for longer, which means there are less early admissions into a
Special thanks are due to the caregivers who kindly agreed to participate in this study and the staff at the Aged Rehabilitation and Geriatric Evaluation Management facility who assisted with recruitment.
Funding This work was supported by the Windermere Foundation under the Mary Patten Special Grant [grant number SG06-13].
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