Care Home Life and Identity: A Qualitative Case Study

Paddock, Katie; Wilson, Christine Brown; Walshe, Catherine; Todd, Chris

doi:10.1093/geront/gny090

Cited by 46 publications

(68 citation statements)

References 38 publications

(47 reference statements)

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“…As highlighted in our study, people with dementia need to be able to participate in their own care, and to have a say about what is going to happen. Such issues have been raised in previous research (Haak et al 2007;Paddock et al 2018) and in line with this, persons with dementia in this study highlighted the importance of leading an autonomous and independent life, and, despite their cognitive limitations, they persistently strived to remain their identity, self-image, and ultimately their autonomy.…”

Section: Discussionsupporting

confidence: 74%

Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study

et al. 2019

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The aim of this study was to describe the needs and expectations of support within everyday life among community-dwelling people living well with an early stage dementia and their informal carers. The study employed a qualitative design. Data were collected in 2018, via four focus group interviews with, in total, 17 people with dementia and 21 informal carers, transcribed and analyzed with manifest content analysis. Needs and expectations of support among persons with dementia were expressed as the importance of “Participation in my own care,” “Attitude of the informal carers,” and “Trusting relationships with informal carers.” Informal carers’ needs and expectations of support were expressed as the importance of “Formal care and services,” “Getting out of a carer mindset,” and “Family context.” The findings from this study highlighted that persons with dementia were well aware of their cognitive impairments and tried to maintain their independence, with both formal and informal care to help remain “being themselves.” Health professionals should acknowledge persons with dementia and informal carers’ well-being, and acknowledge the importance of their needs together with an understanding of the importance of continuity of frontline carers to building trusting relationships.

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Section: Discussionsupporting

confidence: 74%

Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study

et al. 2019

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“…Similarly, in persons with dementia independence and autonomy have been posited as key to maintaining positive identities in bound circumstances, namely care homes. 20 These will have been affected by COVID-19 at both the micro and macro levels, from government regulations to changes to routines made at the family level in response to fear and anxiety.…”

Section: Discussionmentioning

confidence: 99%

Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

et al. 2021

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IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

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“…Within this study the period of adaptation following the move to the care home was viewed by many individuals as leading to a loss of independence, autonomy, decision-making, meaningful engagement and continuity of former roles. Moreover, the loss of an individual's home life presented a major challenge threatening identity, belonging and sense of self (Lee et al, 2013;Brownie et al, 2014;Paddock et al, 2019), and for many a sense of belonging was taking time to develop (Lindley and Wallace, 2015). Individuals were clearly 'wanting' to connect with others in this new environment, and at the same time 'wanting' to re-establish links with family and home.…”

Section: Discussionmentioning

confidence: 99%

‘Waiting and Wanting’: older peoples’ initial experiences of adapting to life in a care home: a grounded theory study

et al. 2020

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A grounded theory approach, consistent with the work of Strauss and Corbin, was used to undertake semi-structured interviews with 17 older people, to explore their experiences of living in a care home, during the four- to six-week period following the move. Purposive sampling was initially adopted, thereafter, theoretical sampling was employed to recruit individuals identified by care managers within older peoples’ community teams and care home managers within a large Health and Social Care Trust in the United Kingdom. Consistent with grounded theory methodology, data collection and analysis occurred simultaneously. Constant comparative analysis underpinned data analysis and data management techniques. Data analysis revealed five distinct categories that captured these experiences. These were: (a) wanting to connect – ‘I am so lost here’, (b) wanting to adapt – ‘Well mentally you have to make the best of it’, (c) waiting for assistance – ‘it's a frustration for me’, (d) ‘waiting on the end’ – I am making no plans’ and (e) wanting to re-establish links with family and home – ‘I love getting home and I like getting out to the town’. Together these five categories formed the basis of the core category, ‘Waiting and Wanting’, which encapsulates the initial adaptation experiences of the men and women in the study. Findings indicate that individuals were dependent on others to create a sense of belonging, independence and wellbeing. Moreover, risk aversive practices were perceived as a threat to individuals’ independence and autonomy. Recommendations include the need to amend policy and practice for the development of a bespoke induction programme for each resident facilitated by a senior member of the care home staff working in partnership with individuals and families, in addition to the health and social care team, to support a more positive transition for new residents, relatives and care home staff.

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Care Home Life and Identity: A Qualitative Case Study

Abstract: Social comparison as an adaptive strategy has previously been unidentified in care home literature. Residents need more support to express their identities, which may reduce the necessity of social comparison, and improve interrelationships and well-being.

Cited by 46 publications

References 38 publications

Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study

Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study

Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

‘Waiting and Wanting’: older peoples’ initial experiences of adapting to life in a care home: a grounded theory study

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