Processes and experiences of mutual support in professionally-led support                 groups for people with early-stage dementia

Mason, Elisabeth; Clare, Linda; Pistrang, Nancy

doi:10.1177/1471301205049192

Cited by 47 publications

(61 citation statements)

References 29 publications

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“…There is, however, little or no evidence on how to reflect optimally on the views and experiences of people with dementia when planning or evaluating services (Biernacki, 2000;Karel et al, 2007). In recent years, clinical and research interest in dementia has increased, including attempts to understand how a person with dementia experiences and perceives the onset of the illness and how they evaluate their quality of life (Mason, Clare, & Pistrang, 2005; see for example Clare, 2002aClare, , 2002bClare, , 2003Ettema, Dro¨es, de Lange, Mellenbergh, & Ribbe, 2005;Frank et al, 2006;Keady et al, 1995;Pearce, Clare, & Pistrang, 2002). The assessment of experience with care is regarded as a highly complex procedure of introspection and evaluation, involving several components of cognition including implicit and explicit memory (Thorgrimsen et al, 2003).…”

Section: Resultsmentioning

confidence: 99%

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

et al. 2010

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This article reviews the literature on the inclusion of the perspective of people with dementia when evaluating quality of care. The few identified relevant studies suggest that there is consensus that people with mild to moderate dementia are able to talk about their experiences with care with clarity and insight. A minimum level of orientation to place, attention and language skills in the person with dementia are important for a successful subjective evaluation. On the basis of the relevant literature, we additionally formulated practical guidelines useful when one aims to collect information with interviewing, self-administered questionnaires, or focus groups from people with dementia to assess quality of care. In people with mild to moderate dementia, assessment of quality of care can best be done by individual interviewing and focus groups. Further research is needed to ascertain what people with dementia find important in relation to quality of care.

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Section: Resultsmentioning

confidence: 99%

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

et al. 2010

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“…This approach is being further developed with user-led groups for people with dementia (Pratt, Clare, & Aggarwal, 2005). Mason, Clare and Pistrang (2005) in their evaluation of mutual support processes that occur in support groups for people with dementia concluded that a support group for people soon after a diagnosis of dementia can be important for establishing social contacts and building an identity based on social ties with others in the group rather than on the difficulties encountered as a result of the dementia. One way of achieving this, they suggest, would be the opportunity to talk about everyday things and events that are unrelated to the experiences of living with dementia.…”

Section: Introductionmentioning

confidence: 99%

Facilitating independence: The benefits of a post-diagnostic support project for people with dementia

Kelly

Innes

2014

Dementia

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Providing support in the form of information, advice and access to services or social events is promoted as beneficial for people newly diagnosed with dementia and their families. This paper reports on key findings from an evaluation of a post-diagnostic support pilot project in Scotland addressing local service gaps, namely information provision, emotional and practical support and maintaining community links. Twenty-seven participants (14 people newly diagnosed with dementia and 13 family carers) were interviewed at two time points: T1 shortly after joining the pilot project and T2 approximately six months later, to ascertain their views on existing services and the support offered by the pilot project. A comparative thematic analysis revealed that the project facilitated increased independence (associated with increased motivation and selfconfidence) of people with dementia. The project illustrates what can be achieved if resources are targeted at providing individualised post-diagnostic support, particularly where there are service delivery gaps.

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“…Studies have shown that meeting people in a similar situation and engaging in activities where people with dementia are accepted and not required to explain their disabilities improves their mood and morale (Mason, Clare, & Pistrang, 2005).…”

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confidence: 99%

Football and dementia: A qualitative investigation of a community based sports group for men with early onset dementia

2016

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(2016) Football and dementia: A qualitative investigation of a community based sports group for men with early onset dementia. Dementia, 15 (6 A note on versions:The version presented here may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publisher's version. Please see the repository url above for details on accessing the published version and note that access may require a subscription. AbstractThis study investigates the impact of a weekly group providing sport and physical activities for men with early onset dementia established by Notts County Football in the Community (NCFC). There were three aims:investigate the effect of early onset dementia on individuals with the condition and their carers; examine perceptions of current levels of service provision for people with early onset dementia; and analyse the impact of the group. Men with dementia (n=5) attending the sessions, their carers (n=5), NCFC coaching staff (n=5) and people organising/facilitating the sessions (n=5), were interviewed. Semi-structured interviews explored the participants' experiences of dementia, their opinions on current service provisions and on the sessions.Data were analysed using thematic analysis. Four main themes were found: loss related to the condition of dementia and its impact on relationships ('Loss'); lack of age-appropriate services for people with early onset dementia ('Lack of Resources'); enjoyment and positive anticipation related to the group for all involved ('Enjoyment and Anticipation'); and 'the Notts County Effect' which attributed the success of the sessions to the strong brand of the football club, and to personalised service in a "dementia-free" environment. The NCFC sessions provided a safe low-cost intervention with positive effects upon quality of life for both people with early onset dementia, their carers and the staff involved. This suggests that the service may be valuable to a wider range of people living in different areas KeywordsDementia; early onset dementia; football; men; quality of life; sporting activities.

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Processes and experiences of mutual support in professionally-led support groups for people with early-stage dementia

Cited by 47 publications

References 29 publications

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

Facilitating independence: The benefits of a post-diagnostic support project for people with dementia

Football and dementia: A qualitative investigation of a community based sports group for men with early onset dementia

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