How close family members contribute to the occupational experiences of their relatives with dementia in long-term residential care: An interpretative phenomenological analysis

Abstract

Introduction:

This research examines how close family members consider themselves to contribute to the activities, routines and occupational identity of their elderly relatives with dementia who reside in long-term residential care, and the factors that support or challenge their involvement.

Method:

Five participants engaged in a single semi-structured interview, which were analysed utilising interpretative phenomenological analysis.

Results:

Close family members contributed to their relatives’ occupational experiences by being vigilant and advocating to rectify perceived deficits in care home staff’s provision of activity; providing their relatives with personalised, hands-on support to access more frequent and higher-quality opportunities for occupational participation and engagement; and maintaining their relatives’ occupational identity.

Conclusion:

Close family members promote frequent opportunities for meaningful occupational participation and engagement for their relatives, and potentially mitigate the extent of occupational injustice that their relatives experience. Accordingly, health and social care staff should enhance close family members’ efforts by developing constructive partnerships with close family members and providing close family members with caregiver training.

Keywords

Care homes dementia close family members occupation occupational identity occupational injustice

Introduction

Dementia is a neurodegenerative syndrome, characterised by a progressive, irreversible decline in cognitive functioning. An estimated 1 million people over the age of 65 have a diagnosis of dementia in the United Kingdom (UK) (Wittenberg et al., 2020), and 70% of the UK’s total care home population experience dementia symptoms (Matthews, 2013). Hereafter, ‘care home’ is used to refer to both care and nursing homes.

Dementia is a priority for both National Health Service (NHS) England and the UK government. The NHS Long Term Plan (NHS England, 2019) commits NHS England to continue to improve the care provided to people with dementia and their carers. Likewise, one of the key objectives of the government’s Challenge on Dementia 2020 policy is for every person diagnosed with dementia to have meaningful care following their diagnosis (Department of Health, 2015a). Related to this, the Department of Health (2015b) guidance encourages care homes to adopt a dementia-friendly physical and social environment, which facilitates residents’ participation in activities.

Although guidance published by the National Institute for Health and Care Excellence (NICE) (2013, 2018, 2019) repeatedly recommends that people with dementia are routinely offered participation in meaningful activities to promote health and well-being, research consistently reveals that care home residents experience inactivity, in the UK and internationally (Boyd et al., 2014). Studies have found that residents lack access to spontaneous or scheduled social and leisure activities, and experience an absence of choice about their activities (Harmer and Orrell, 2008; Heggestad et al., 2013; Smith et al., 2018).

Evidence suggests that some researchers have concluded that chronic occupational injustices exist within care homes (Du Toit et al., 2019), a term conceived by Townsend and Wilcock (2004) to refer to socially constructed barriers that impede regular participation in everyday occupations. Commonly identified obstacles include inadequate staffing levels; staff prioritisation of meeting basic care needs; inadequate staff training regarding adapting activities; and risk aversion (Harmer and Orrell, 2008; Morgan-Brown and Brangan, 2016; Smith et al., 2018). More recently, care homes’ infection control measures implemented as part of managing the COVID-19 pandemic were found to disrupt residents’ participation in self-care, social and leisure activities that composed their meaningful daily routines (Richardson et al., 2022).

However, the above research regarding occupational participation within care homes has largely omitted consideration of how close family members may contribute to their relatives’ occupational experiences. Accordingly, this qualitative research expands upon existing studies, utilising interpretative phenomenological analysis to explore how close family members perceive themselves to contribute to the occupational experiences of relatives who are aged 65 or over, have a diagnosis of dementia and live within UK-based care homes. Moreover, the research will identify factors that close family members consider to support or challenge their involvement. Underpinned by an interpretivist epistemology, this occupation-focused research explores participants’ unique, rich perspectives about the meaning and significance of close family members’ involvement in their relatives’ occupational participation and engagement.

Literature review

Within existing literature, little consideration has been given to the role of close family members in contributing to the activities, routines and occupational identity of their relatives in care homes, with the notable exception of Puurveen et al.’s (2018) critical interpretative systematic literature review. They synthesised 32 primarily qualitative articles to explore family members’ perceived roles and responsibilities in predominantly western nursing homes and concluded that close family members are often involved in their relatives’ basic and instrumental activities of daily living, and leisure and social activities. However, as with other research (Baumbusch and Phinney, 2014; O’Shea et al., 2014), this review has collated descriptions of what close family members may involve themselves in when visiting relatives in care homes, rather than considering the significance or impact of family members’ efforts on their relatives’ participation and engagement in occupation. This may be due to how included studies were predominantly produced to understand how families contribute to the efforts of, or are received by, nursing staff.

Although dated, two important nursing research studies have examined how close family members affect the occupational experiences of their relatives within care home settings (Davies and Nolan, 2006; Helgesen et al., 2013). Davies and Nolan’s (2006) constructivist study conducted interviews with 49 family members of individuals with dementia who resided in UK care homes around Sheffield. Participants reported initiating activities with relatives during their visits and providing staff members with information regarding their relatives’ preferred occupations. Participants reported that their efforts supported their relative to experience continuity in occupational participation, in performing activities that they had enjoyed while living in the community. Similarly, Helgesen et al.’s (2013) grounded theory research, which interviewed 12 family members of residents with dementia in three Norwegian nursing homes, revealed that close family members assumed various roles to promote relatives’ well-being. This included connecting their relatives with the outside world, by supporting them to access activities beyond the care homes’ confines, or bringing the wider world into the home through activities such as playing music. However, the study’s findings did not extend to in-depth consideration of specific challenges that could prevent participants from consistently performing this role, aside from dementia symptomology and participants’ emotional closeness to their relatives.

In light of restrictions on visitation imposed on care home residents as a result of the COVID-19 pandemic, there has been renewed interest in the significance of family involvement in the lives of care home residents (Verbeek et al., 2020). All health and social care staff are expected to act in accordance with person-centred principles, which include recognising the role that close family members play, and supporting their efforts (NICE, 2018). The dearth of occupation-focused research reduces health and social care staff’s ability to do this, by limiting their understanding of family members’ contribution to their relatives’ occupational experiences, and the possible issues that they may encounter in promoting their relatives’ occupational participation and engagement. Further occupation-focused research on the role that close family members play is required and has implications for health and social care staff, managers and commissioners.

Method

Design

This research employed interpretative phenomenological analysis (IPA) (Smith et al., 2009). Phenomenology’s detailed, nuanced descriptions of people’s experiences and perceptions are ideal for investigating this topic (Finlay, 2011). However, IPA’s idiographic and hermeneutic philosophies ensured this method was preferable to other strands of phenomenology or thematic analysis. Firstly, IPA’s ability to gain an insider perspective, through in-depth analysis of participants’ voices and their sense-making, aligns with this study’s aims (Smith et al., 2009). Secondly, IPA’s process of dual interpretation, with participants’ narratives being analysed from a critical outsider’s perspective informed by the researchers’ knowledge, may reveal insights that participants themselves cannot access (Smith and Osborn, 2008).

Ethical considerations

Ethical approval was granted by the Health and Social Care Research Ethics Committee at the University of Derby on 19 December 2018.

Participants

Purposive sampling recruited five participants with personal experience of, and interest in, the topic. This sample size facilitated idiographic case-by-case analysis while allowing cross-case comparison. Inclusion criteria required participants to be a close family member to an individual:

Aged 65 or over;

Diagnosed with dementia;

Residing in either a nursing home or a care home in the UK, either currently, or within the past 6 months;

And had resided in the nursing home or care home for at least 6 months.

Participants also needed to be familiar with their relatives’ experiences while in the care home, speak English and be able to provide informed consent.

To publicise the study, organisations including care homes, dementia support groups and community venues and groups were requested to become gatekeepers. These were selected through convenience sampling, based on geographical proximity to the researcher, and were identified through a comprehensive internet search. Managers of potential gatekeeping organisations were sent an information letter outlining the research study, which requested them to display posters and leaflets. Six people consented to learn more about the research and were provided with a participant information sheet. Subsequently, five people agreed to participate in the research. Table 1 demonstrates the participants’ characteristics.

Table 1.

Participant characteristics.

Alias	Gender	Relationship to relative living within the care home	Length of relative’s stay within care home (year)	Average frequency of visits
Participant one	Female	Sister	3	Twice a week
Participant two	Male	Son	2.5	Three/four times a week
Participant three	Female	Daughter	3	Twice a week
Participant four	Female	Daughter	3	Twice a week
Participant five	Female	Daughter-in-law	1	Once a month/fortnight

This sample meets Smith et al.’s (2009) recommendations, in being largely homogeneous but incorporating slight variance, to allow readers to assess the findings’ transferability to a broader context.

Potential gatekeepers and participants provided written informed consent and were reminded at every interaction about their right to withdraw without repercussions.

Data collection

Participants engaged in a face-to-face semi-structured interview. Interview questions were selected through consideration of the research aim and existing literature. Three interviews occurred in participants’ homes; two were conducted in cafes. Interviews were audio-recorded and transcribed verbatim.

Data analysis

Data analysis was conducted as advised by Smith et al. (2009). The interview transcripts and accompanying audio recordings were repeatedly examined by the researcher, to recall the interviews’ content, mood and setting. Subsequent line-by-line analysis produced descriptive, linguistic and conceptual exploratory comments, which were revisited to generate emergent themes. Post-it-notes and mindmaps were used to group similar emergent themes until feasible superordinate themes and subthemes were identified. Themes from individual cases were then clustered to demonstrate commonalities or variance across cases, which resulted in cross-case superordinate and emergent themes.

Results

The analysis resulted in three interconnected superordinate themes, each underpinned by various constituent emergent themes.

Vigilance and advocacy

Participants perceived themselves to contribute to their relatives’ occupational experiences, by noticing and rectifying perceived deficiencies in care home staff’s provision of activity.

Overt policing

All participants reported themselves to be vigilant regarding care homes’ activity provision. Generally, participants attempted to monitor whether care staff provided their relatives with frequent opportunities for occupational participation and engagement in valued activities and whether their relatives received sufficient support from staff to ensure successful occupational performance. Participants achieved this by assuming a visible presence within their relatives’ care homes: ‘I do spend a lot of time there. [Care staff] joke about me being employed by them at times’ (participant two). Participants hoped that observation of care home practices would offer insight into whether their relatives received the quality of care that care staff claimed to provide: ‘I am there to police the care my mum’s being given. . . and to make sure her needs are being met. . . [by ensuring that care staff are doing] what they say they are doing’ (participant four). Several participants additionally hoped that observation would maintain or promote high standards of activity provision from care staff: ‘I think they know that I’m watching. . . It’s made them realise that, “Don’t mess with me, I’m keeping an eye on you”’ (participant one).

Outsider status

Although most participants believed that they had developed good relationships with staff members, participants also recognised that their ability to be vigilant was impeded by the care staff’s view that close family members were, ultimately, outsiders. Two participants felt that care staff restricted family members’ involvement within the care home, due to concerns that close family members would disrupt efficiency: ‘They don’t really like the relatives to be there [during mealtimes]. . . I think the home think that if you’re there, they’re not going to eat. . . you always feel that you’re a nuisance. . .’ (participant five). Moreover, participants’ vigilance was also impeded by a lack of knowledge about care homes’ provision of activity when they were absent. Participants noted that this was due to a lack of communication regarding their relatives’ activities since the family had last visited, or care homes’ upcoming activity schedules.

Being vocal

Participants viewed their vigilance as a precursor to the interrelated role of advocating to care staff on their relatives’ behalf. All participants recognised the need to ‘be vocal, in the nicest way’ (participant four) to rectify issues that they had noticed, and which they considered to impede their relatives’ occupational participation and engagement. This included ensuring their relatives were provided with sufficient support to perform self-care activities (participant one), and that their relatives’ leisure interests were regularly offered by staff (participants two and four).

Fear and ambivalence about rocking the boat

Although participants recognised the importance of advocating, they expressed reservations about approaching care staff. Participants believed that care staff were not always receptive to recommendations or complaints, and feared that being vocal might result in negative repercussions for their relatives: ‘I get the impression that if you did say something. . . [care staff] might not be as good with mum as they could be. . .’ (participant two). Secondly, as all participants largely attributed deficiencies in care homes’ activity provision to a shortage of care staff, they also felt ambivalent about speaking out, as they doubted whether perceived deficits could be rectified: ‘I wouldn’t like to rock the boat and cause any issues for mum because. . . the way that the home is run, they haven’t got time’ (participant five).

Poor communication and conflicting priorities

When participants advocated on their relatives’ behalf, care staff’s practices and attitudes could prevent the changes they requested from being implemented. Several participants noted that poor communication was a concern. Participant one believed that she needed to ‘keep raising the issue’ of her sister not having sufficient support to perform self-care activities, as staff members did not communicate between themselves about the level of assistance her relative required. Participants also noted that care staff and close family members’ conflicting priorities were also problematic. Participant two believed that shopping trips with his mother were sufficiently meaningful to both of them to justify their being continued, despite his mother having experienced a fall during a previous outing. His request was declined by care staff, due to perceived risk aversion.

Personalised, hands-on support

When close family members perceived deficiencies in the quality of care that their relatives received, close family members reported providing personalised, hands-on support, intended to ensure their relatives received more frequent and higher-quality opportunities for occupational participation and engagement, than care staff could provide.

Another pair of hands

Participants regularly supported their relatives to participate in the leisure and social activities that care staff provided: ‘I like to be involved. . . it’s good that I can do whatever I can. . . [to] help out and join in’ (participant two). In doing so, participants felt that they were better able to ensure that their relative engaged in activities, by providing them with necessary one-to-one support that they might not otherwise receive. Participant one, for example, explained that her sister, who often refused to participate in arts and crafts activities offered by care staff, was more likely to participate when in receipt of her constant attention.

‘I’ll sort that out myself’

Although all participants generally felt that care staff tried their best to provide their relatives with opportunities to participate in activities, participants unanimously observed that their relatives were prone to long periods of inactivity: ‘I think the hardest thing is. . . knowing that when we’re not there, mum will just be looking at the four walls’ (Participant five). Likewise, the majority of participants noted that leisure and social activities organised by care staff were not consistently tailored to their relatives’ interests. Indeed, participant five remarked that she did not feel her mother-in-law’s leisure and social activities were ‘personalised at all’. This was attributed to their relatives being ‘fitted in’ to the care home, ‘rather than the home fitting around [them]’ (participant four).

Accordingly, participants felt compelled to supplement the care staff’s efforts, by providing their relatives with more frequent, and more meaningful opportunities, for occupational participation and engagement. Some participants provided resources, such as DVDs (participant one), newspapers and sheet music (participant four) to facilitate their relatives’ ability to perform meaningful activities when they were not personally present. More commonly, participants used their visits to initiate a varied range of activities that they would perform with their relatives, such as reminiscence, walks, arts and crafts, and shopping trips. Participants used their unique knowledge of their relatives’ interests and preferences to ensure that the activities they selected would be meaningful to them. Likewise, participants one and four recognised that their relatives’ successful occupational performance relied on their being able to support their relatives’ engagement, by utilising modelling, prompting and encouragement. Participant five recognised the need to grade or adapt activities: ‘we pick simple tasks. Nothing too complex, because we don’t want to stress mum out. . . that might put her off doing anything at all then’. Evidently, close family members who perceived deficiencies in care homes’ activity provision that they thought unlikely to be rectified by care staff responded by assuming the attitude of ‘I’ll sort that out myself’ (participant four). As participant two stated, ‘I do whatever I can’.

Alleviating the monotony

In providing their relatives with further opportunities to successfully participate in valued occupations, participants perceived themselves as supplying their relatives with the opportunity to temporarily avoid conforming to their care homes’ daily routine: ‘we can pull mum off this conveyer belt, she doesn’t have to sit in the dining room and have a coffee at 11:00 a.m.’ (participant five).

Challenges to ‘just getting on with it’

Several participants felt that the extent to which they were able to provide their relatives with further opportunities to participate in meaningful occupations was compromised, as they lacked the knowledge, skills and confidence to select suitable activities, or to appropriately grade and adapt activities. Similarly, participants one and five stated that they found their relatives’ dementia symptoms, such as apathy and agitation, rendered it difficult to perform valuable activities with them. Care staff also impeded participants’ ability to perform activities with their relatives, in overtly or subtly managing the duration of close family members’ visits, or the activities that they were permitted to initiate. Overall, participants believed that the issue underpinning the above barriers was a lack of practical support from health and care professionals. As participant three stated, she had long been ‘just getting on with’ caring for her mother, without support.

Maintaining occupational identity

Supporting their relatives to perform meaningful occupations was also the result of participants’ belief that it was their responsibility to maintain their relatives’ remaining occupational identity. This theme demonstrates the methods that close family members employed to achieve this, alongside recognition of the transient nature of their efforts.

Promoting continuity

All except one of the participants believed that the dementia diagnosis and the care home environment had resulted in their relatives’ experiencing a loss of confidence, a diminishing range of interests, declining functional skills and restricted autonomy. Participants perceived that this had cumulatively resulted in their relatives’ occupational identity narrowing. Resultantly, participants believed that they had a responsibility to support their relatives to maintain what was left of their existing occupational identity, which they attempted in various ways.

Firstly, participants four and five encouraged their relatives to practise functional skills, to enable them to maintain participation in activities, as independently and competently as possible. Participant four stated, in relation to her mother: ‘I think she is losing skills. . . I’m trying to keep them there, maintain them at a certain level, so she can. . . do different things, interesting things, for as long as possible’.

Secondly, all participants supported their relatives to perform valued activities that they had previously performed together. All participants continued to have lengthy conversations with their relatives, participant four still maintained her habit of reading poetry and completing crosswords with her mother, and participant five continued to knit with her mother-in-law.

Thirdly, participants reminisced with relatives regarding their former occupational participation and engagement, often using props to stimulate discourse, to maintain their occupational identity: ‘even if it’s just looking through a magazine, especially knitting and embroidery ones. . . [mum] can remember what she has done. . . she can remember something that was important to her, her identity’ (participant five). Overall, participants expressed the belief that promoting continuity in their relatives’ occupational identity was a role best suited to close family members: ‘we’re the people that trigger it for her, the [care staff] can’t do that, because they don’t know about her’ (participant five). Additionally, participants also revealed that fulfilling this role helped to sustain their relationship with their relatives by facilitating their ability to share enjoyable experiences, either through actively engaging in activities together or discursively reliving past performances.

A matter of time

Although participants attempted to promote continuity in their relatives’ occupational identity, they recognised that this would become more difficult with time. As participant three stated, her account of her mother’s activities would have been ‘totally different’ had she participated in this research previously, as her mother had ‘gone downhill’ since being diagnosed. Participants’ efforts were therefore perceived as time limited. Participant two, for example, accepted that the range of valued leisure activities that he could perform with his mother had reduced in recent years: ‘I could be doing a lot more, you know, but it’s mum. She’s getting older.

Discussion and implications

This study demonstrates that close family members perceived themselves to contribute to their relatives’ occupational experiences by assuming roles of vigilance and advocacy. While existing research has identified that close family members exercise vigilance and advocacy regarding nursing care (Baumbusch and Phinney, 2014), this study highlights that close family members also extend their vigilance to the frequency, and quality, of activities provided to their relatives while in care homes. The findings also reveal that close family members may not feel comfortable advocating for their relatives, a concern previously reflected in research, and may be attributed to the broader issue of close family members feeling they lack an effective partnership with care home staff (O’Shea et al., 2014).

Where possible, participants also contributed to their relatives’ occupational experiences by providing personalised, hands-on support so their relatives could experience more frequent, and higher-quality opportunities, for occupational participation and engagement, than they believed care home staff could supply. In reporting themselves to promote their relatives’ ability to regularly participate in valued occupations, within a perceived context of frequent inactivity and absence of meaningful occupation, participants within this study could be considered to have potentially alleviated their relatives’ occupational deprivation (Whiteford, 2000), by improving the quantity and variety of occupations that their relatives could perform. This suggests that the overall extent of occupational injustice experienced by certain care home residents may be mitigated in ways that previous researchers have not considered.

These findings also provide further support to preliminary research which indicates that restrictions on close family members’ visits to care homes, such as during the COVID-19 pandemic, can detrimentally impact residents. Restrictions on visitation not only further compound pre-existing occupational deprivation by removing opportunities for social activities (Richardson et al., 2022), but this study additionally suggests that close family members’ inability to visit their relatives would limit the frequency and quality of their relatives’ involvement in activities across all occupational domains.

In particular, participants emphasised the importance of collaboratively performing social and leisure occupations with their relatives. This can be understood through the concept of co-occupation, where two or more individuals perform occupations in an interconnected manner (Pickens and Pizur-Barnekow, 2009). Existing research on the co-occupations of people with dementia and their caregivers largely focuses on in-depth analysis of specific activities to understand the organisation and collaboration demonstrated during co-occupations (Hyden, 2014; Majlesi and Ekström, 2016). However, this research provides new insights, in detailing how close family members participate in and perceive the significance of the co-occupations they engage in, within the care home context. Participants’ representation of co-occupation aligns with Doidge’s (2012) categories of co-occupation, namely, ‘doing with’, ‘doing alongside’, ‘doing for’ and ‘doing because of’. Within this research, participants relied on and valued ‘doing with’ co-occupations, to promote their relatives’ ability to access frequent, high-quality opportunities for occupational participation and engagement; these included playing games, going shopping, singing or reminiscing. Selecting these co-occupations can be attributed to how their relatives required support to perform occupations, and how ‘doing with’ co-occupations afforded quality time that maintained their relationships.

Importantly, close family members reported utilising co-occupations to support their relatives to maintain their occupational identity. Davies and Nolan’s (2006) study similarly recognised that close family members utilise activities to promote continuity in their relatives’ identity. However, these findings reveal that participants felt the need to support their relative to retain their diminishing occupational identity and used various strategies to achieve this. Strategies addressed several dimensions of occupational participation, from maintaining relatives’ performance skills to the overarching occupational roles that provided their lives with meaning. The means through which participants attempted to promote continuity in their relatives’ occupational identity parallel the occupational perspective of health framework, that conceptualises occupational performance to consist of the interlinked dimensions, of doing, being, becoming and belonging (Wilcock and Hocking, 2015). By supporting their relatives to ‘do’ and ‘be’, in participating in long-valued occupations and recalling their lived experiences, close family members helped relatives to ‘belong’, in feeling connected to their family, and former places and times. The cumulative effect of ‘doing’, ‘being’ and ‘belonging’ was for their relative to ‘become’, in terms of maintaining their occupational identity.

Nevertheless, participants reported barriers that challenged the successful performance of ‘doing with’ co-occupations, including the policies or attitudes of care staff on occasion, which may have affected the nature or the timing of the activities that close family members felt able to perform with their relatives. Particularly, close family members identified that they lacked sufficient knowledge or skills to effectively respond to dementia symptoms, or select, grade or adapt activities safely. This has similarly been expressed by close family members caring for relatives with dementia whilst residing in the community (Chung et al., 2017).

This research has identified three key implications for health and social care staff concerned with meeting the occupational needs of elderly people with dementia residing in long-term care. Advocates of person-centred care have suggested that a carer engagement approach promotes positive outcomes for people with dementia (Hannan et al., 2016). This study further confirms the necessity of health and social care staff working collaboratively with close family members wherever possible, to support them to promote their relatives’ occupational participation and engagement.

Firstly, health and social care staff must be aware that close family members and care staff may have differing views regarding families’ ideal level of involvement within the care home. Close family members’ sustained involvement in their relatives’ lives is crucial to person-centred care (NICE, 2018). Accordingly, health and social care staff can assist close family members by facilitating discussion and negotiation regarding the nature and extent of family members’ involvement in their relatives’ activities and routines, and wherever possible, supporting close family members’ efforts to engage in co-occupations with their relatives with dementia. Advocating for the establishment of effective partnerships between care staff and close family members may support close family members to assume a satisfying role within the care home. Likewise, in establishing joined-up working, health and social care staff may additionally enhance residents’ likelihood of achieving better outcomes (Hannan et al., 2016).

Secondly, as close family members experience various fears and low expectations that deter them from advocating for their relatives, Occupational Therapists may wish to inform close family members of the minimum standards that they should expect from care homes, as outlined within professional guidelines (College of Occupational Therapists, 2013). In being aware of these recommendations, close family members may feel empowered to make recommendations to promote their relatives’ occupational performance across all occupational domains.

Finally, considering the reported benefits of co-occupation on health, well-being and personhood, Occupational Therapists working in care homes may wish to provide close family members with caregiver training. NICE (2018, 2019) recommends that health and care professionals offer psychoeducation and skills training to people who care for relatives with dementia, with content tailored to carers’ needs and preferences. Within this research, participants indicated that they would benefit from receiving information on dementia symptomology and progression; managing challenging behaviours; and guidance on selecting, grading and adapting activities. These topics fall within Occupational Therapists’ scope of practice (Royal College of Occupational Therapists, 2020).

Various measures have been undertaken to ensure the validity and quality of this qualitative research, in accordance with IPA guidelines (Smith et al., 2009). Sensitivity was achieved through rigorous analysis to ensure that data yielded coherent, meaningful insights, and via the utilisation of quotations and contextual information to justify interpretative claims. A reflexive journal facilitated the examination of how the researcher’s personal context may have influenced the research. Undertaking a pilot interview promoted rigour, by enhancing the final interview schedule’s content validity. Finally, transparency regarding the research process has been attempted within this written report.

The recognised limitations of this study include the sample being predominantly composed of White-British females, as the sample’s homogeneity may have undermined the findings’ transferability to other ethnic groups or genders. Furthermore, multiple interviews with participants would have improved the study’s rigour, by better ensuring that theoretical saturation had been achieved; however, this was not possible due to time constraints.

Conclusions

This research has revealed how close family members perceive themselves to contribute to the activities, routines and occupational identity of their elderly relatives with dementia in care homes. This study’s findings suggest that close family members may mitigate the extent of occupational injustice that their relatives experience while living in long-term residential care, by reducing their inactivity and promoting their access to a broader range of meaningful occupations, which, in turn, promote their relatives’ personhood. This research also reveals that close family members experience unmet practical needs which undermine their ability to advocate for family members or initiate co-occupations. Resultantly, this study suggests that health and social care staff operating in care homes should support their efforts, by fostering constructive partnerships with residents’ close family members, and through providing caregiver training.

Key findings

Close family members are vigilant about, and advocate to improve, the occupational experiences of elderly relatives with dementia in long-term residential care, including through the use of co-occupation.

What the study has added

In reducing inactivity, and promoting access to a broader range of meaningful occupations, close family members may mitigate the extent of occupational injustice that their relatives with dementia experience in long-term residential care, which, in turn, may maintain their relatives’ occupational identity.

Footnotes

Research ethics

Ethical approval was granted by the Health and Social Care Research Ethics Committee at the University of Derby on 19 December 2018.

Consent

Written informed consent to participate in the research study was obtained from participants.

Patient and public involvement data

During the development, progress and reporting of the submitted research, Patient and public involvement was not included at any stage of the research.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The authors declared no financial support for the research, authorship and/or publication of this article.

Contributorship

This research was undertaken as part of fulfilling the independent scholarship requirement of Masters level study. EW conceived the research, recruited participants, completed data collection and analysis and wrote up the results. SS supervised the research throughout and supported with editing this article.

ORCID iD

Emma Woodhall

References

Baumbusch

Phinney

(2014) Invisible hands: The role of highly involved families in long-term residential care. Journal of Family Nursing 20: 73–97.

Boyd

Payne

Hutcheson

, et al. (2014) Bored to death: Tackling lack of activity in care homes. Nursing & Residential Care 16: 98–102.

Chung

PYF

Ellis-Hill

Coleman

(2017) Supporting activity engagement by family carers at home: Maintenance of agency and personhood in dementia. International Journal of Qualitative Studies on Health and Well-being 12: 1–14.

College of Occupational Therapists (2013) Living well through activity in care homes: The toolkit. Available at: https://www.rcot.co.uk/practice-resources/rcot-publications/downloads/living-well-care-homes (accessed 27 December 2022).

Davies

Nolan

(2006) ‘Making it better’: Self-perceived roles of family caregivers of older people living in care homes: A qualitative study. International Journal of Nursing Studies 43: 281–291.

Department of Health (2015a) Prime Minister’s challenge on dementia 2020. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf (accessed 27 December 2022).

Department of Health (2015b) Health building note 08-02: Dementia-friendly health and social care environments. Available at: https://www.england.nhs.uk/wp-content/uploads/2021/05/HBN_08-02-1.pdf (accessed 27 December 2022).

Doidge

(2012) Co-occupation categories tested in the mothering context. Unpublished Masters Thesis, University of Otago, New Zealand.

Du Toit

SHJ

Shen

McGrath

(2019) Meaningful engagement and person-centred residential dementia care: A critical interpretive synthesis. Scandinavian Journal of Occupational Therapy 26: 343–355.

10.

Finlay

(2011) Phenomenology for Therapists: Researching the Lived World. Hoboken, NJ: Wiley-Blackwell.

11.

Hannan

Thompson

Worthington

, et al. (2016) The triangle of care: Carers included: A guide to best practice for dementia care. Report for the Carers Trust. Report no. RCN 005 713. London, UK: Carers Trust.

12.

Harmer

Orrell

(2008) What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers. Aging and Mental Health 12: 548–558.

13.

Heggestad

AKT

Nortvedt

Slettebo

(2013) ‘Like a prison without bars’: Dementia and experiences of dignity. Nursing Ethics 20: 881–892.

14.

Helgesen

Larsson

Athlin

(2013) How do relatives of persons with dementia experience their role in the patient participation process in special care units? Journal of Clinical Nursing 22: 1672–1681.

15.

Hyden

(2014) Cutting Brussels sprouts: Collaboration involving persons with dementia. Journal of Aging Studies 29: 115–123.

16.

Majlesi

Ekström

(2016) Baking together: The coordination of actions in activities involving people with dementia. Journal of Ageing Studies 38: 37–46.

17.

Matthews

(2013) A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: Results of the cognitive function and ageing study I and II. Lancet 283: 1405–1412.

18.

Morgan-Brown

Brangan

(2016) Capturing interactive occupation and social engagement in a residential dementia and mental health setting using quantitative and narrative data. Geriatrics 1: 1–15.

19.

National Institute for Health and Care Excellence (2013) Mental wellbeing of older people in care homes. Report for National Institute for Health and Care Excellence. Report no. QS50. London, UK: National Institute for Health and Care Excellence.

20.

National Institute for Health and Care Excellence (2018) Dementia: Assessment, management and support for people living with dementia and their carers. Report no. NG97. London, UK: National Institute for Health and Care Excellence.

21.

National Institute for Health and Care Excellence (2019) Dementia. Report no. QS184. London, UK: National Institute for Health and Care Excellence.

22.

NHS England (2019) The NHS long term plan. Available at: https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf (accessed 26 September 2023).

23.

O’Shea

Weathers

McCarthy

(2014) Family care experiences in nursing home facilities. Nursing Older People 26: 26–31.

24.

Pickens

Pizur-Barnekow

(2009) Co-occupation: Extending the dialogue. Journal of Occupational Science 16: 151–156.

25.

Puurveen

Baumbusch

Gandhi

(2018) From family involvement to family inclusion in nursing home settings: A critical interpretive synthesis. Journal of Family Nursing 24: 60–85.

26.

Richardson

Cleary

Usher

(2022) The impact of the COVID-19 restrictions on nursing home residents: An occupational perspective. Journal of Occupational Science 29: 386–401.

27.

Royal College of Occupational Therapists (2020) Scope of occupational therapy. Available at: https://www.rcot.co.uk/files/scope-occupational-therapy (accessed 27 December 2022).

28.

Smith

Osborn

(2008) Interpretative phenomenological analysis. In Smith

(ed.) Qualitative Psychology: A Practical Guide to Research Methods. London, UK: Sage Publications Ltd, pp. 53–80.

29.

Smith

Flowers

Larkin

(2009) Interpretative Phenomenological Analysis: Theory, Method, and Research. London, UK: SAGE Publications Ltd.

30.

Smith

Towers

Palmer

, et al. (2018) Being occupied: Supporting ‘meaningful activity’ in care homes for older people in England. Ageing & Society 38: 2218–2240.

31.

Townsend

Wilcock

(2004) Occupational justice and client-centred practice: A dialogue in progress. Canadian Journal of Occupational Therapy 71: 75–87.

32.

Verbeek

Gerritsen

Backhaus

, et al. (2020) Allowing visitors back in the nursing home during the COVID-19 crisis: A Dutch national study into first experiences and impact on well-being. Journal of the American Medical Directors Association 21: 900–904.

33.

Whiteford

(2000) Occupational deprivation: Global challenge in the new millennium. British Journal of Occupational Therapy 63: 200–204.

34.

Wilcock

Hocking

(2015) An Occupational Perspective of Health. 3rd edn. Thorofare, NJ: Slack.

35.

Wittenberg

Jagger

, et al. (2020) Projections of care for older people with dementia in England: 2015 to 2040. Age and Ageing 49: 264–269.