Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis

Patterson, Kirsty; Clarke, Chris; Wolverson, Emma; Moniz-Cook, Esmé

doi:10.1017/s1041610216002374

Cited by 31 publications

(30 citation statements)

References 52 publications

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“…The social experiences of people with dementia and the dynamics within social networks are now being described (Vernooij-Dassen, Moniz-Cook, & Jeon, 2018). For example, an investigation of lived experiences revealed that people with dementia can feel they are being treated as an 'other' rather than 'one of us', and as 'lesser' rather than a full, valued member of society (Patterson, Clarke, Wolverson, & Moniz-Cook, 2018). Fear of being unable to communicate according to accepted norms and the shame of revealing deterioration has been shown to prevent people with dementia from engaging in social contacts (Donkers et al, 2018).…”

Section: Social Healthmentioning

confidence: 99%

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto

Vernooij‐Dassen¹,

Moniz-Cook

Verhey³

et al. 2019

Aging & Mental Health

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Objective: To provide a new perspective on integrated biomedical and psychosocial dementia research. Background: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying the interaction between biomedical and psychosocial paradigms. One rationale for integrating biomedical and psychosocial research is the discordance between neuropathology and cognitive functioning. The concept of social health might bridge the two paradigms. It relates to how social resources influence the dynamic balance between capacities and limitations. Hypotheses: Social health can act as the driver for accessing cognitive reserve, in people with dementia through active facilitation and utilization of social and environmental resources. Thereby we link lifestyle social and opportunities to the brain reserve hypothesis. Manifesto: We provide a Manifesto on how to significantly move forward the dementia research agenda.

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Section: Social Healthmentioning

confidence: 99%

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto

Vernooij‐Dassen¹,

Moniz-Cook

Verhey³

et al. 2019

Aging & Mental Health

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“…However, each person's resilience narrative also focussed on using personal strengths and resources as they made their own 'journey' through dementia. Humour and gratitude appeared to be key aspects of this, reflecting their preservation and functions in living with dementia (see Hickman, Clarke & Wolverson, 2018;Pearson, 2017).…”

Section: Discussionmentioning

confidence: 99%

Resilience in older people living with dementia – A narrative analysis

Buggins¹,

Clarke

Wolverson

2020

Dementia

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Dominant discourses surrounding dementia tend to focus on narratives of loss and decline. Simultaneously, individuals living with dementia are vulnerable to being dispossessed of personal narratives supportive of identity and well-being. How older people with dementia story their experiences of resilience in this context has not previously been investigated. In response, this qualitative study utilised a narrative approach to understand lived experiences of resilience shared by eight older people living with dementia. Structural analyses indicated that participants’ personal narratives regarding resilience in living with dementia contained distinct and common phases (The Diagnosis, Initial Tasks, 'The High Point', Reflecting on Limitations and Focusing on Today) as well as a variety of dynamic characters. Overarching themes within participants’ narratives included sense of self/identity, being connected to others, sense of agency and having positive attitudes. Participants narrated richer, more active personal stories than those typically represented in dominant social discourses surrounding dementia. As such, their narratives depict lived experiences of resilience that unfolded over time in response to adversity and uncertainty and involved a dialectical process in relation to adjustment and well-being. The findings have important implications for the way resilience in living with dementia is framed and supported.

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“…An absence of care preferences could reflect a low level of concern regarding acquiring dementia; healthy people are more likely to worry about a family member developing dementia than about themselves developing dementia . Thus, their attitudes toward dementia mean that they consider people living with dementia as “others” rather than “one of us,” and this results in a social exclusion of people with dementia . Factors that can contribute to such apathy regarding care preferences should be further examined in order to increase the general public's awareness of the risks and consequences of dementia, as well as the availability of related coping resources.…”

Section: Discussionmentioning

confidence: 99%

Care preferences of healthy, middle‐aged adults in Japan and the USA if they acquired dementia: A cross‐sectional observational study

Nakanishi

Miyamoto

Nakashima

et al. 2019

Geriatrics Gerontology Int

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Aim Japan introduced dementia‐friendly initiatives into its national policies to help people with dementia remain involved in society for as long as possible. However, some people might choose to live in a nursing home to avoid care burden on family members. Understanding middle‐aged adults’ preferences for place of care and identifying factors that influence their preferences would help policy decision‐makers promote dementia‐friendly initiatives. The present study aimed to investigate the care preferences of middle‐aged adults if they acquired dementia in Japan and the USA. Methods We carried out a cross‐sectional observational study using an internet‐based questionnaire survey of Japanese residents with Japanese ethnicity, Japanese Americans, and non‐Asian Americans aged 40–70 years. A total of 301 participants, including 104 Japanese residents, 93 Japanese Americans and 104 non‐Asian Americans, completed the survey. Participants were asked to answer the items based on a hypothetical situation in which they had acquired dementia requiring regular care and supervision. Results Participants preferred nursing home care (29.9%), followed by professional home care (19.6%), family home care (17.6%) and hospital care (11.3%). Japanese residents had a significantly lower preference for professional home care than did Japanese or non‐Asian Americans (adjusted odds ratio 0.28, 95% confidence interval 0.10–0.75). Between‐ethnicity difference in care preferences was not observed. Conclusions A low preference for professional home care among the middle‐aged adults might be influenced by country‐specific long‐term and dementia care systems. Policy decision‐makers should develop professional home care services that are more available for families of people living with dementia. Geriatr Gerontol Int 2019; 19: 829–833.

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Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis

Cited by 31 publications

References 52 publications

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto

Resilience in older people living with dementia – A narrative analysis

Care preferences of healthy, middle‐aged adults in Japan and the USA if they acquired dementia: A cross‐sectional observational study

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