‘Sustaining <scp>P</scp>lace’ – a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds

Daly, Louise; McCarron, Mary; Higgins, Agnès; McCallion, Philip

doi:10.1111/jocn.12003

Cited by 31 publications

(38 citation statements)

References 54 publications

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“…A paper by Haley, Levine, Brown, and Bartolucci (1987) reported that those caregivers with a larger number of friends and social contacts, as well as those carers who attended more social activities with friends had an increased overall life satisfaction. A more recent study conducted by Daly, McCarron, Higgins, and McCallion (2013) demonstrates how informal carers use social networks as a way to manage and sustain their changing role as carer.…”

Section: Resultsmentioning

confidence: 99%

‘Singing for the Brain’: A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers

2016

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Dementia has detrimental effects on cognitive, psychological and behavioural functioning, as well as significant impact on those who provide care. There is a need to find suitable psychosocial interventions to help manage the condition, enhance well-being, and to provide support for caregivers. This study explored the impact of Singing for the Brain™, an intervention based on group singing activities developed by The Alzheimer’s Society for people with dementia and their carers. This qualitative study used semi-structured interviews with people with dementia and their carers. Ten interviews involving 20 participants were analysed thematically. Social inclusiveness and improvements in relationships, memory and mood were found to be especially important to participants. As well as enjoying the sessions, participants found that attending Singing for the Brain™ helped in accepting and coping with dementia.

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Section: Resultsmentioning

confidence: 99%

‘Singing for the Brain’: A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers

2016

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“…These examples suggest that dementia cafés have the potential to be seen as a ‘sustaining place’ [13] providing valued support even after the caring role has ended. This is particularly important as although the caring role can be difficult, the end of caring can require a long period of adjustment [25] and carers may benefit from the support of places such as dementia cafés.…”

Section: Discussionmentioning

confidence: 99%

“…Social isolation [11] can be particularly important as carers often may not want to leave the person they care for and can be reluctant to go out because of changes in their behaviour [12]. Furthermore, people living with dementia and their carers report both experiencing stigma once diagnosed [13] and reduced social support [11]. Despite this, increasingly, with reductions in services, carers are expected to rely on their social networks for support [14].…”

Section: Introductionmentioning

confidence: 99%

A qualitative study of carers’ experiences of dementia cafés: a place to feel supported and be yourself

et al. 2017

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BackgroundUnpaid, informal carers or caregivers play an important role in supporting people living with dementia but the role can be challenging and carers themselves may benefit from support. Alzheimer’s, dementia or memory cafés are one such form of support . These cafés are usually provided in the voluntary sector and are a place where people with dementia and those supporting them, usually family carers, can meet with others in similar situations.MethodsUsing semi-structured interviews, this qualitative study explored the experiences of 11 carers from five dementia cafés in and around London, England.ResultsThematic analysis resulted in the identification of four key themes. Cafés provide a relaxed, welcoming atmosphere where carers can go where they feel supported and accepted. Café attendance often brought a sense of normality to these carers’ lives. Carers and those they care for look forward to going and often enjoy both the activities provided and socialising with others. Other highlighted benefits included peer support from other carers, information provision and support from the volunteer café coordinators. Despite diversity in how the cafés were run and in the activities offered, there were many reported similarities amongst carers in the value ascribed to attending the cafés.ConclusionsDementia cafés appear to be a valuable, perhaps unique form of support for carers giving them brief respite from their caring role. Future research incorporating mixed methods is needed to understand the perspectives of those living with dementia.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-017-0559-4) contains supplementary material, which is available to authorized users.

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“…Caregivers identified loss of their community and friends as another painful result of dementia-related changes. Caregivers found that friends often abandoned them and that their community dwindled to only a few devoted individuals (Daly, McCarron, Higgins, & McCallion, 2013;Sanders et al, 2008): "I am a lone soldier in the battleground, all others have long deserted the field" (Mayer, 2001, p. 55). Caregivers limited dining with friends (an important social event across cultures) because eating with company often revealed the behavioral symptoms of dementia or was simply messy (Gillies, 2012;.…”

Section: Reciprocal Synthesismentioning

confidence: 99%

The Meanings Caregivers Ascribe to Dementia-Related Changes in Care Recipients: A Meta-Ethnography

Lindauer¹,

Harvath²

2015

Research in Gerontological Nursing

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The number of individuals with dementia is increasing dramatically around the world, and because of this growth, an increase in the number of caregivers has occurred as well. Caregiving is often associated with negative outcomes (e.g., burden, depression, impaired physical health). These problems persist although much effort has been put into understanding caregiver strain. Some work has addressed the meanings caregivers ascribe to dementia-related changes, which may provide a better understanding of caregiver health and well-being. Most of this work is qualitative, but no synthesis of the literature addressing caregiver meanings of dementia-related changes has been found. The purpose of the current meta-ethnographic synthesis is to explore and interpret the literature addressing the meanings that caregivers give to dementia-related changes in their care recipients. An interpretation that incorporates findings in relation to elder mistreatment is offered. Implications for nursing care and research are discussed.

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‘Sustaining Place’ – a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds

Abstract: 'Sustaining Place' facilitates enhanced understanding of the complex and socially situated nature of informal dementia care through its portrayal of informal carers as social agents and can be used to guide nurses to better support those who live with dementia.

Cited by 31 publications

References 54 publications

‘Singing for the Brain’: A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers

‘Singing for the Brain’: A qualitative study exploring the health and well-being benefits of singing for people with dementia and their carers

A qualitative study of carers’ experiences of dementia cafés: a place to feel supported and be yourself

The Meanings Caregivers Ascribe to Dementia-Related Changes in Care Recipients: A Meta-Ethnography

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