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

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’.

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).
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.

| 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.

| Design
Data collection employed semi-structured interviews and photoelicitation. 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.

| 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.

| ANALYS IS
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 F I G U R E 1 Examples of photographs taken by participants 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.

| 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.

| 'I am not just mum's carer'
The unremitting nature of their supportive role took its toll. 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.

| '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.

| 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.

| '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 rec- 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.

| '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.

| 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.

| '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 de-

| 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.

| 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'. 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'

| 'Nobody's reached out'
(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.'

| 'Going round in circles'
The process of seeking help in addition to the already competing Metaphors were commonly employed to emphasise a sense of helplessness as they described 'bobbing along underneath,' getting 'knocked down' and 'knocked into oblivion' whilst trying to navigate support and guidance. (Juliette).

| D ISCUSS I ON
This study explored the impact of the experiences of daughters as caregivers and supporters of parents with dementia. Although these processes were unique for each participant, shared features and similarities were evident.
Accounts note the physical and psychological impact of their role, in particular the overwhelming sense of responsibility they all felt. The impact is related to their own personal identity as well as the identity of their relationship with their parent. Indeed, the concept of shared identities has been noted in the family caregiving context, which describes the difficulty in separating disruption to the self from that of close others (Hasselkus & Murray, 2007). The prevailing sense of burden in these accounts was often related to the interrole conflict experienced whilst trying to balance the demands of their supporting role with other roles as mothers, wives and, as one participant suggested, advocate. Furthermore, they had all taken primary responsibility for caregiving, with other siblings and family members being notably more peripheral. This finding concurs with existing literature which has noted the distinct challenges and detrimental effects on physical and psychological well-being for this cohort (Aneshensel et al., 1995;Brody, 1981).
For all the participants the conflict was clearly exacerbated by the emotional relationship between them and their parent. In most cases a former positive relationship and emotional attachment motivated the participants to care for their parent, a finding which corroborates recent cross-cultural evidence (Greenwood & Smith, 2019).
Overall, it is clear that redefinition of the relationship was both challenging and invigorating for the participants. For some, the caregiving role itself was an experience of self-discovery which had given new life to the pre-morbid relationship, whilst for others reconciliation of old and new relationships was more problematic.
Similar themes are evident in other qualitative research, identifying the importance of relationship quality to successful adaptation within changing relationships (Quinn et al., 2008;Williams et al., 2014).  (Lloyd et al., 2016;Stephens & Townsend, 1997).
The concept of compassion fatigue has been explored in the caregiver burden literature and refers to prolonged exposure of caregivers to stress and suffering (Joinson, 1992 (Day et al., 2014).
Sustaining and supporting care at home presented distinct challenges for our participants. The analysis highlighted dilemmas faced when making decisions on behalf of their parent, and it was evident in all these cases that balancing autonomy with safety and wellbeing was paramount and required sensitive management. Concerns were related to the possibility of physical harm befalling their parent due to dementia-related confusion. These safeguarding concerns were commonly shared, and it was often difficult for participants to feel that they had achieved a satisfactory compromise. A recent study noted how people with dementia had to accept dependency on others to maintain their independence in order to remain living in their own homes, and upholding this was considered an ethical obligation of the adult children when involved (Smebye et al., 2016).
For our participants, the dilemma continued when considering the suitability of outside agencies to provide care or delegating existing services to maintain that support effectively. Although those who had such support services in place were satisfied with them, trusting others remained an issue they had to learn to manage. The literature in this area notes the important role of domiciliary care in supporting both the person with dementia and their family carers and recommends robust measures to address progress in this area (Dawson et al., 2015;Rothera et al., 2008).
Another issue with significant implications was experiences of professional support and stories told of confusion, frustration and disappointment as participants attempted to navigate systems and services. Often, this was simply knowing their entitlements and which agency to contact; issues are already noted in recent literature (Dawson et al., 2015). Consequently, their experience was described metaphorically to suggest a sense of isolation and abandonment: 'Nobody's reached out.'

| Strengths and limitations
We aimed to explore first-hand experiences of supporting a parent with dementia. The sample size of this study allowed a quality-driven detailed account of individual experience which permitted careful and sensitive scrutiny of a small number of cases. The addition of photo elicitation allowed the participants to be more involved and empowered thus stimulating the narrative process. Illustrated themes were described with verbatim quotes to reflect participants' stories and to allow readers to assess the analysis process.
All participants were white British so findings are limited in terms of ethnicity. Furthermore, only one participant was supporting her father. Although research notes how adult children are more likely to provide care to the parent of the same gender (Lee et al., 1993), detailed experiential accounts comparing the two are limited. Finally, three of the eight participants had formal paid care support arrangements in place. Although this factor did not appear to differentiate their sense of responsibility and burden, a larger sample could reflect disparities.

| Implications
It is worth noting that we set out to better understand the experiences of informal caregivers supporting a parent to remain in their own home. Therefore, all our participants lived separately to the person with dementia and the implications of this should be considered.
For example, research has shown that the partner or spouse living with the person with dementia is more vulnerable to carer burden due to the unremitting nature of the caring role and potential interrupted sleep (Chappell et al., 2015). However, recent research acknowledges the complexity of making such comparisons and notes the impact of competing demands for the daughter, as have been highlighted in our study. Indeed Peacock et al., (2020) conclude that the shared experiences of wives and daughters are similar and are dominated by the caring demands of their role.
Our findings indicate the need to identify individuals at risk of excessive burden and compassion fatigue. Further, there is a need for the provision of anticipatory guidance, information and support tailored to informal caregivers' needs. Our study is unique in highlighting the challenges associated with the competing demands of our participants' situation and suggests that services fall short in addressing their needs.
The implications for healthcare commissioning and delivery are noteworthy, not least the need to establish and sustain cohesive working with all agencies whose role is to support these arrangements.

| CON CLUS ION
This study presents valuable insight into the role of the adult daughter when sustaining parental care in the home, highlighting the psychological impact of responsibility and interrole conflict. Our work extends existing literature and yields fresh insights about the experiences and needs of this group, not least the ethical dilemmas and safeguarding concerns. Of particular importance are the consistently expressed quests for help and the concomitant dearth of advice and support available. This study highlights the need for an enhanced understanding of dementia from the caregiver perspective, an increased person-centred approach by health professionals and improved collaboration between the services which support those living with dementia and those caring for them.

ACK N OWLED G EM ENTS
The authors wish to express sincere thanks and gratitude to the people who have contributed to this research, especially to the participants themselves for their frank and open accounts.

CO N FLI C T O F I NTE R E S T
No conflict of interest to declare.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author.