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Supporting and sustaining care at home: Experiences of adult daughters who support a parent with dementia to remain in their own home

2021; Wiley; Volume: 30; Issue: 1 Linguagem: Inglês

10.1111/hsc.13373

1365-2524

Gillian Smith, Karen Rodham,

Family and Disability Support Research

Health & Social Care in the CommunityVolume 30, Issue 1 p. 81-90 ORIGINAL ARTICLEOpen Access Supporting and sustaining care at home: Experiences of adult daughters who support a parent with dementia to remain in their own home Gillian Smith CPsychol, Corresponding Author Gillian Smith CPsychol [email protected] orcid.org/0000-0002-9424-7359 Staffordshire Centre for Psychological Research, Department of Psychology, School of Life Sciences and Education, Staffordshire University, Stoke-on-Trent, UK Correspondence Gillian Smith, Staffordshire Centre for Psychological Research, Department of Psychology, School of Life Sciences and Education, Staffordshire University, Stoke-on-Trent, UK. Email: [email protected]Search for more papers by this authorKaren Rodham PhD, BSc Hons (Psychology), Karen Rodham PhD, BSc Hons (Psychology) Staffordshire Centre for Psychological Research, Department of Psychology, School of Life Sciences and Education, Staffordshire University, Stoke-on-Trent, UKSearch for more papers by this author Gillian Smith CPsychol, Corresponding Author Gillian Smith CPsychol [email protected] orcid.org/0000-0002-9424-7359 Staffordshire Centre for Psychological Research, Department of Psychology, School of Life Sciences and Education, Staffordshire University, Stoke-on-Trent, UK Correspondence Gillian Smith, Staffordshire Centre for Psychological Research, Department of Psychology, School of Life Sciences and Education, Staffordshire University, Stoke-on-Trent, UK. Email: [email protected]Search for more papers by this authorKaren Rodham PhD, BSc Hons (Psychology), Karen Rodham PhD, BSc Hons (Psychology) Staffordshire Centre for Psychological Research, Department of Psychology, School of Life Sciences and Education, Staffordshire University, Stoke-on-Trent, UKSearch for more papers by this author First published: 06 April 2021 https://doi.org/10.1111/hsc.13373Citations: 1 Funding information The research presented is independent and has not been funded. AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Abstract Supporting a parent with dementia living in their own home is a challenging care issue which has potential for negative physical, emotional and psychosocial impacts. This research explores the experiences of adult daughters who sustain this arrangement as well as managing the competing demands of their lives. Using a qualitative approach, semistructured interviews were conducted between March and October 2017. Eight adult females in the United Kingdom who were supporting a parent with dementia to remain living in their home were interviewed. Photo-elicitation was used as an aid to data collection and complemented the use of Thematic Analysis (TA) to analyse verbatim transcripts. Four themes were identified: (a) Impact on identity: impact of the participants' experience on their sense of identity; (b) Continuity and change: relationship redefinition and duality of roles; (c) Stepping up to the challenge: adjustment to and coping with competing demands and ethical dilemmas; and (d) Finding help: ‘It is just a minefield’: experiences of help-seeking and service provision. This study highlights the experiences and challenges for adult daughters who support a parent with dementia. Ethical dilemmas regarding autonomy and safeguarding concerns figure large along with the competing demands of multiple roles. Service providers should aim to be more proactive in offering timely practical and psychosocial support and guidance to avoid compassion fatigue and acknowledge the valuable unpaid service provided by these ‘women in the middle’. 1 INTRODUCTION Worldwide evidence suggests that most people with dementia live in the community, and their primary support is from their families; thus, the dependency on informal community care is increasing (Eccleston et al., 2019). About 10% of the British population is known to be informal caregivers (White, 2013). We recognise that there are multiple views and debates concerning the term ‘informal carer’; in line with Totsika et al., (2017), we view informal carers as people who provide unpaid care to relatives, friends or partners who are disabled or have a long-standing illness or condition. Informal caregivers provide an invaluable service, and it has been suggested by Buckner and Yeandle (2011) that the economic value of informal caregiving exceeds the overall annual budget of the entire UK health system. In the United Kingdom, there are an estimated 850,000 people with a diagnosis of dementia, two thirds of whom live in their own homes (Dawson et al., 2015). Many are enabled to remain at home because of their informal caregiver support. Whilst informal caregiving makes a positive contribution to the health system and to the individuals receiving the care, the psychosocial and physical health of the caregiver is negatively impacted (Sörensen & Conwell, 2011). The combination of dementia-related cognitive impairment and behavioural problems exacerbates this impact (Brodaty & Donkin, 2009; Dupuis, 2002; Ory et al., 1999). Dementia caregiver burden is moderated by characteristics of the care recipient, the care situation, coping style and social support (e.g., Sörensen & Conwell, 2011). Furthermore, care experiences vary according to age, gender and the caregiver–care recipient relationship (Chappell et al., 2015; McKibbin et al., 1999). For example, negative psychological effects may be exacerbated for adult children caring for elderly parents due to other family and work demands (Gordon et al., 2012; Peacock et al., 2020; Stephens et al., 2001). Research has shown that daughters most commonly support their ageing parents, whereas sons generally become involved only in the absence of an available female sibling (Giusta & Jewell, 2014; Hoff, 2015). Explanations for this include gender and cultural norms which affect daughters and sons differently (Haberkern et al., 2015). Consequently, it has been noted how interrole conflict is especially associated with daughters who take on this responsibility and who are often referred to as ‘women in the middle’ (Brody, 1981). This term alludes to the challenge of juggling multiple roles, including partnerships, parenting and working, often in a socio-cultural climate of ambivalence and expectation (Aneshensel et al., 1995; Horowitz, 1985; Stephens & Franks, 1999). Similarly, recent research which explores the phenomenon of compassion fatigue confirms distinct challenges facing adult daughters who support a parent (Day et al., 2014). A recent meta-analysis of what works to support people with dementia living at home highlighted a failure to focus on perspectives and experiences of informal carers (Dawson et al., 2015). Sustaining and supporting people with dementia to remain living at home is a challenging care issue for both formal and informal carers which raises ethical dilemmas of how to balance the autonomy of a person with their safety and well-being (Lord et al., 2015; Smebye et al., 2016). These dilemmas impact particularly on the adult daughter experience (Giusta & Jewell, 2014; Hoff, 2015). Using a qualitative approach, this study explored the experiences of adult daughters who were providing informal care for a parent with dementia. The aim was to better understand (a) how daughters navigated the competing demands of their situation and (b) their perception of the impact of this role on their physical and psychological well-being. 2 METHOD Participants and recruitment Eight adult daughters of a parent with dementia were recruited opportunistically through the first author's personal contacts and gatekeepers in the health and social care sector. Following eight interviews, no new themes were identified and recruitment ceased (Braun & Clarke, 2013, p 55). All participants met the criteria: adult daughter who was supporting a parent with dementia to live at home. All participants lived separately to their parent. One parent was male, and all were aged between 69 and 95 years. Three of the participants had additional paid home care support arrangements in place for their parents, which included personal care, medication and meal assistance. At the time of interview their caregiving roles were ongoing and had lasted for a minimum of 12 months. See Table 1. TABLE 1. Participant characteristics Pseudonym Age Parent pseudonym Age Parent status Support status Abigail 36 Dorothy 69 Dorothy lives with husband Primary unpaid caregiver for both parents. Peripheral sibling support. Carolyn 59 Peggy 90 Peggy lives alone Primary unpaid caregiver. Sibling support. Kath 63 Joan 95 Joan lives alone Primary unpaid caregiver. Formal paid care support also in placea. Juliette 55 Miles 91 Miles lives alone Primary unpaid caregiver. Sibling support. Karen 56 Jenny 79 Jenny lives alone Primary unpaid caregiver. Formal paid care support also in placea. Libby 47 Nell 81 Nell lives with husband Joint unpaid caregiving role with father. Sibling support and formal paid care support also in placea. Misty 50 Lil 76 Lil lives alone Primary unpaid caregiver. Granddaughter supports. Jess 53 Milly 81 Milly lives alone Primary unpaid caregiver. Peripheral sibling support. a Formal paid care support refers to domiciliary care company support arrangement. Design Data collection employed semi-structured interviews and photo-elicitation. Photo-elicitation is a research method which uses photographs to encourage comments from participants about the issue being studied. Previous studies using this combined approach have noted the benefits in terms of empowering the participants and facilitating the narrative (Bates et al., 2017; Burton et al., 2017; Meo, 2010; Williams et al., 2014). In this study participants were invited to take photographs that represented their informal carer experience. Their photographs were not analysed in this study but were used to elicit and stimulate participants' narrative about their experiences. See Figure 1 for some examples of the photographs taken. FIGURE 1Open in figure viewerPowerPoint Examples of photographs taken by participants Procedure Ethical approval for this study was granted by Staffordshire University Ethics Committee. Participants were sent information sheets and gave written consent to be interviewed and audio-taped prior to interviews. Prior to the interview, they were invited to take and submit electronic copies of between three and six photographs which represented their experience prior to the interview. A semi-structured interview schedule was developed guided by thematic analysis recommendations and previous research (see Table 2). The first author then conducted the semi-structured interviews. Each participant was given a document containing debrief advice and suggestions for accessing support. The interviews were recorded digitally and later transcribed verbatim and anonymised for the purpose of analysis. TABLE 2. Interview schedule 1. Can you tell me about your life at the moment with regard to supporting your mother/father to remain in their home? Prompt: How do you feel? How do you cope? 2. What are your reasons for supporting the current arrangement? Prompt: Are you able to understand your mother's/father's perspective? 3. How about any challenges you have encountered? Prompt: can you describe a recent example? 4. How has the arrangement affected your relationship with your mother/father? Prompt: Do you feel different towards him/her? 5. How has the arrangement affected your relationship with your family? Prompt: how does the family feel - your spouse/partner/children? 6. How would you describe yourself as a person? Prompt: How do you feel about yourself now? Prompt: Do you feel different to how you used to feel? If so, why do you think that is? 7. What do you think the health care service needs are for people like yourself? Prompt: Adequate? Do you feel supported? 8. What would be a positive development for you? 3 ANALYSIS Transcripts were analysed using inductive Thematic Analysis. This involves identifying, analysing and reporting patterns or themes across a data set (Braun & Clarke, 2006). Through its theoretical freedom, thematic analysis provides a flexible and useful research tool, which can potentially provide a rich and detailed, yet complex account of data (Braun & Clarke, 2006). The inductive approach to the analysis ensures that the themes identified are strongly linked to the data themselves (Patton, 1990). The analytical steps recommended by Braun and Clarke (2006) were followed. The cyclical process of analysis involved immersion in the data by the first author reading and re-reading the transcripts, searching for patterns, noting semantic content and following a coding process. The second author independently analysed the transcripts. Notes were confirmed between the two authors, themes and subthemes identified, and after further careful interrogation of the data, the final overarching themes were agreed upon. 4 FINDINGS Prior to presenting the themes, in order to provide context, we briefly describe the types of photographs participants chose to represent their experiences. Participants wanted to show their motivation to care as well as the impact of the caring role. Photographs of phones and washing machines symbolised the strain of their caregiving role as they tried to manage constant phone calls and additional domestic chores. Keys, locked doors and medication dosette boxes represented their safeguarding concerns. Old and current family photographs were included to symbolise the importance of family. Four key themes were identified: Impact on identity, Continuity and change, ‘Stepping up to the challenge’ and Finding help: ‘It is just a minefield’. The themes and associated subthemes are summarised in Table 3. TABLE 3. Overview of themes and subthemes 1. Impact on identity a. I'm not just mum's carer (issues of identity) b. I'm almost her parent (emotional impact of role reversal) c. Trying to get the balance (competing demands) 2. Continuity and change a. Not the person that I know at all (relationship redefinition) b. My life is different (changing aspects of new life) c. Stronger for it (positive aspects of caregiving experience) 3. Stepping up to the challenge a. What are we going to do? (worry about the future) b. It's not my decision, it's hers (maintaining autonomy) c. Trusting others (to care and support) 4. Finding help: ‘It's just a minefield’ a. Nobody's reached out (quest for help) b. Going round in circles (navigating health care support) Impact on identity This theme characterizes the physical and psychological impact of the participants' experience on their sense of identity. They all described a range of emotions as they tried to make sense of and manage the changing relationship and the competing demands of their lives. 4.1.1 'I am not just mum's carer' The unremitting nature of their supportive role took its toll. Participants described ‘constant little things’ (Abigail) which impacted on their physical health and their sense of personal identity, often leaving them feeling disempowered. Maintaining a sense of self separate from the caring role was important to them all. For example, Karen described how work ‘protected her identity from being reduced to that of carer’: ‘…so I’m not just mum’s carer, I’m a teacher. Umm, I think part of my identity as well is that I’m a wife, I’m a mother and trying to support all those things’. (Karen) Misty reflected on her self-identity when contemplating the difficulty she experienced reconciling her response to her mum's changing dementia-related behaviour. Her pre-morbid relationship with her mum was difficult, and as a child, she had built a protective wall around herself: ‘because emotionally she could be quite hurtful’ (Misty): ‘And while my wall was down a little bit I didn’t know what to do with it because it’s not me, it’s not me and my mum’. (Misty) The metaphoric ‘wall of defence’ highlights Misty's vulnerability as she tries to protect herself from emotionally reacting to her mum. Tentatively allowing an empathetic response when her ‘wall was down’ challenged her own sense of identity and the only relationship with her mum that she had ever known. This highlights the ways in which former relationships can impact on the caring role. 4.1.2 'I am almost her parent' Finding themselves in a relationship where the parent–child role had over time gradually and irrevocably reversed resulted in an overwhelming sense of sadness and loss. In particular, participants who had previously had a strong bond with their mum missed the emotional relationship they once had. The loss of opportunity to confide and be supported themselves was mourned: ‘Well, people go to their mum for support and advice and we’ve always had quite a good relationship, an emotional relationship, and that’s just gone’. (Abigail) Nostalgic reflections generated profound feelings of loss. For example, Abigail was angry and felt [dementia] had ‘taken even more away’ of her mum leaving her with an exaggerated sense of loss. The participants found the shift in roles ‘tough’ (Misty) and indicative of major change as they tried to make sense of their new life. One participant reflected on how her role had changed not only to that of a parent but also in a more complex way which required sensitive management: ‘… I’m almost her parent but also the person trying to make sure she’s got the best life she can have and it’s not sometimes … so it’s an advocate role rather than a daughter role’. (Karen) 4.1.3 'Trying to get the balance' It was difficult at times for the participants to ‘juggle’ (Abigail) their responsibilities which included working and family life as well as supporting their parent and this impacted on their sense of self. For those without the support of others, ‘trying to get the balance’ (Karen) was more challenging. They often had to make major adaptations to their own life in order to find time for their supportive role. Many of these adaptations had significant consequences, practically, emotionally, physically and financially. For example, Karen was forced to reduce her working hours: ‘One of the things that I did quite early on was to give up full-time work and go part-time because trying to do the things that were needed, umm, it was impossible. Trying to balance the responsibility there [work] with the responsibility of looking after mum, was just, well it made me ill’. (Karen) Trying to get the balance right was difficult. There was a sense that participants became more overwhelmed as time went on. Libby described being ‘totally out of her depth’ and of things ‘spiralling out of control.’ Continuity and change Participants spoke of managing the parallel nature of their relationship with their parent. First, there was the established ongoing relationship but at the same time the fluctuating nature of their changing role within that. However, this balancing act did have some positive aspects for some who discovered unexpected benefits, personal resilience and ways to manage. 4.2.1 'Not the person that I know at all' The participants described progressive changes in their parent and the impact of this on their relationship which they struggled to reconcile. This often left them feeling ‘uncomfortable’ (Misty) with behavioural changes and suggested not only a sense of embarrassment at how their parent may present to others but also noting their own emotional responses: ‘Yeah, it irritates me [if she giggles]. Umm, and that just signifies mum’s childlike behaviour that’s coming through … and that’s not my mum’. (Misty) Examples of duality can be seen in the way some participants respond to their changing relationships. Assuring themselves that their loved one is ‘unrecognisable’ or ‘gone’ (Abigail) and yet applying their current thinking and behaviour to the pre-morbid parent. Although some of the participants struggled to accept the changes in their parent, others were able to appreciate the continuing features which represented an emotional bonding separate from established roles. One participant described how the ‘new’ relationship allowed her ‘a massive amount of [emotional] closure’ following their earlier relationship which was not always ‘smooth sailing’. (Karen): ‘It’s like we love each other because we know each other rather than because we have to. Does that sound a bit…[?]? I don’t know. And we spend a lot of time laughing and a lot of time relating as women’. (Karen) Despite the struggle to reconcile the dementia-related change in their loved ones, some of the participants supporting their mother could appreciate a bond of female unity which transcended family roles and former attachments. 4.2.2 'My life is different' The participants described a number of ways in which their lives were different. One felt her life had changed ‘ten-fold’ (Libby) since her mum's dementia had deteriorated. Others described the change as rendering their parent as ‘unrecognisable’ (Misty). For the participants who did not have any external formal support (e.g., from a care agency), this meant additional worry and daily contact to check on their parent's welfare. This extra burden weighed heavily and triggered complex responses to their situation. For example, Carolyn noticed that she began to resent the obligations imposed by the carer role and then felt guilty for feeling resentful: ‘So, you’re at times tied up with going there and then you feel guilty thinking, oh God I begrudge going’. (Carolyn) Similarly, Kath said ‘we don't really have one [life]’ as she described the twice daily visits as being ‘like running two homes’. (Kath). Whilst acknowledging their lives were ‘not normal anymore’ (Libby), some participants were able to find comfort in maintaining previous routines, such as shopping and trips out in the car, which represented continuity of their former lives. 4.2.3 'Stronger for it' Despite the rigours of the supporting role, participants were able to identify positive aspects which made them feel stronger, wiser and more resourceful as they navigated their changing lives. They shared the benefits of spending more time with their parent. Pre-diagnosis, visiting parents was a habit; however, the diagnosis made the time spent together tangibly different: ‘So for me it’s nice I’m spending more time with my dad, umm, than before when I just went round once a week and it just became something I did’. (Juliette) As the dementia progressed, some participants spoke of the need for them to become more involved in their parents' personal care. This was a difficult shift in role, which was approached with reluctance at first, followed by surprise at their own ability to take on the extra duties. For example, Karen spoke about how she would never have thought she was capable of taking on such a role but with hindsight felt that supporting her mum had left her feeling ‘stronger for it’. (Karen). The informal carer experiences were complex, illustrated by the apparently paradoxical nature of a role that left them feeling ‘exhausted’ (Jess) but which also empowered them: ‘…it’s quite exciting and exhilarating but it’s terrifying at the same time’. (Karen) Stepping up to the challenge Participants were worried about the future and how they would navigate the practical and ethical dilemmas they now faced. Issues of safeguarding whilst maintaining their parents' autonomy for as long as possible was a challenge. Additionally, trusting formal care providers was a big concern; caution and anxiety were common. 4.3.1 'What are we going to do?' All participants described practical dilemmas (e.g., parents leaving appliances on and doors unlocked) which led to fears about the current (and future) safety and well-being of their parents, which in turn left the participants feeling guilty and anxious: ‘You do feel really guilty locking your dad in, but it’s something you have to do’. (Juliette) The pervading sense of responsibility reflects the impact on their psychological well-being. Even when protective behaviours could be justified, a residual sense of guilt remained. Future care management was a major concern as participants worried about the impact of the deterioration of their parent's dementia. One participant wondered ‘at what point do you make that [formal care] decision?’ (Jess). Another became emotional when she described how she was ‘petrified’ and ‘absolutely dreading’ what the future might bring. (Abigail): ‘So that’s a big worry too. What are we going to do? We know that’s coming but how’s that going to work out?’ (Jess) 4.3.2 'It's not my decision it's hers' Difficult decisions sometimes had to be made which often created conflict and compromised their parent's sense of autonomy. Whilst some participants saw this as an opportunity to ‘step up to the challenge’ (Jess), others found the dilemma more complicated: ‘We keep her at home because she won’t go in a [residential] home and she’s adamant. And you don’t like leaving her and I feel really really bad’. (Kath) The dilemma was challenging because it required participants to make decisions based on their parents' wishes whilst recognising their parents' changing cognitive capacity. Further layers of complexity were added when issues relating to the care and financial arrangements for their parent caused conflict as they grappled with the idea of decision-making by proxy: ‘I’m making that [financial] decision for her because I know she’s not able to. But I know I’m doing it for the right reasons’. (Misty) Highlighting the dissonance of her position, one participant openly reflects: ‘Where are my mum's rights?’. (Karen). 4.3.3 Trusting others A continuing dilemma for the participants was the need to trust outside agencies to help with the care support arrangement. Those who already had formal care in place valued the homecare workers and recognised how this support gave them ‘breathing space’ (Karen) and an opportunity to retain a sense of identity. Those considering care options were more cautious and anxious about the suitability of an arrangement which allowed ‘strangers coming in’. (Juliette). It is possible that a reluctance to trust others related to the difficulty in partly relinquishing their involvement in the first place and again highlights the complex emotions involved for the participants. This was a highly emotive topic for one participant who recognised that her pre-existing good relationship with her mum allowed her to see beyond behaviour which could be labelled difficult. Kath was concerned that a stranger without an emotional connection could provide a lower standard care. For this reason she disclosed a firm distrust of outside agency care: ‘Because I think what we’ve seen on television. I don’t think I could settle not knowing if someone was abusing my mum … because they will. I mean I know how I feel. I would never hurt … never, never, never …, but I can imagine a stranger thinking, oh for God’s sake woman, shut up.’ (Kath) Finding help: 'It's just a minefield' For those participants who had sought external support or who were in the process of doing so, the experience was frustrating. Finding time and emotional energy to seek formal support was difficult; all participants were coping with the dual responsibility of running their lives and providing support for their parent. None had had help to find formal support nor guidance for how to access it. Once they had reached out for support, their frustration mounted and they felt that they were ‘going round in circles’. 4.4.1 'Nobody's reached out' Participants often felt ‘undervalued’ (Misty) and ‘let down’ (Libby) by supporting services. They felt that they were ‘not being listened to’ (Misty). Inadequate signposting to services required them to ‘do loads of research’ (Libby) which was confusing and exhausting when they simply wanted answers to their questions: ‘Yeah, I think people should come and say to you, you know, show you different things like a nursing home, like a warden-controlled flat, what different options there are. Can she go in any of them because she’s got dementia? I don’t know. There are a lot of questions to be asked’. (Carolyn) Quests for help also focused on siblings. Some participants spoke of their central role in the care arrangement and felt that family members were not helping as much as they might. This caused resentment and sometimes resulted in former parental attachment arrangements being explored and current roles dissected. For example, participants described ‘not feeling supported’ (Abigail) and having ‘arguments’ (Carolyn) with siblings regarding their role in the care arrangements. Karen highlighted a more complex resentment as she described how she felt her brother, who was always the ‘blue-eyed boy,’ failed to confront the care situation and continued to ‘bury his head in the sand.’ 4.4.2 'Going round in circles' The process of seeking help in addition to the already competing demands of their life left participants feeling helpless and stressed: ‘Ringing up when you haven’t got time to be on the phone every day, you know’. (Jess)