Perceived barriers to self-management for people with dementia in the early stages

Martin, Faith; Turner, Andy; Wallace, Louise; Choudhry, Kubra; Bradbury, Nicola

doi:10.1177/1471301211434677

Cited by 50 publications

(72 citation statements)

References 36 publications

(39 reference statements)

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“…The most prominent barriers seem to be a deficit focus, lack of services with a positive and enabling approach, and the view of people with dementia as passive recipients of care. Martin et al (2013a), found that skepticism towards the benefits of self-management was evident among carers and health care professionals, but not among people with dementia. In addition, perceived barriers to self-management among people with dementia included worries, fears and lack of confidence, which may be a reflection of the overall negative view of self-management for people with dementia.…”

Section: Meaningful Activities and Relationshipsmentioning

confidence: 99%

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia

et al. 2018

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The aim of this study is to identify relevant content for a self-management guide by using the outcomes of previous research in combination with knowledge and experiences from couples where one partner has a diagnosis of dementia. The study was carried out in three phases: 1) Literature search of previous research related to wellbeing and couplehood in dementia; 2) Interviews with couples with dementia based on the findings of the literature search; 3) Further authentication of the findings within expert groups of people with dementia and carers. For analysis of data we used a hybrid approach of thematic analysis with combined deductive and inductive approaches. The findings of this study indicated that the four main themes "Home and Neighborhood", "Meaningful activities and Relationships", "Approach and Empowerment" and "Couplehood" with related sub themes could be appropriate targets for a self-management guide for couples where one partner has a diagnosis of dementia.

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Section: Meaningful Activities and Relationshipsmentioning

confidence: 99%

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia

et al. 2018

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“…However, studies highlight the need to ensure that the voice of the person living with dementia is heard and that their needs are balanced with those of the carer. 115 Qualitative studies on SM support for people living with dementia found that information provision may be aimed at carers, leaving people living with dementia feeling powerless, 115 that carers may inadvertently take control away from people living with dementia 109 and that people living with dementia can find support inappropriate or stifling. 132 As one stakeholder put it:…”

Section: Resultsmentioning

confidence: 99%

“…We found 10 studies 37,59,62,106,109,110,115,121,132,136 looking at SM interventions for people living with dementia or cognitive impairment, only one of which included people with dementia and diabetes. 59 This controlled study evaluated the impact of personalised education sessions on people with diabetes and cognitive impairment.…”

Section: Stigma and Barriers To Care For People Living With Dementiamentioning

confidence: 99%

“…147 This literature does, however, provide valuable insights into what needs to be in place to support independence and appropriate outcomes in people living with dementia, much of which might form the basis for programmes for people with dementia and diabetes. Potentially important components of such programmes include the need to focus on the abilities and strengths of people with dementia rather than their disabilities, 109,110 on emotions rather than problems, 109 on building confidence 62,121 and on respecting participant autonomy and enhancing empowerment. 106 Social interaction may also be important.…”

Section: Stigma and Barriers To Care For People Living With Dementiamentioning

confidence: 99%

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Managing diabetes in people with dementia: a realist review

Bunn

Goodman

Jones

et al. 2017

Health Technol Assess

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BackgroundDementia and diabetes mellitus are common long-term conditions that coexist in a large number of older people. People living with dementia and diabetes may be at increased risk of complications such as hypoglycaemic episodes because they are less able to manage their diabetes.ObjectivesTo identify the key features or mechanisms of programmes that aim to improve the management of diabetes in people with dementia and to identify areas needing further research.DesignRealist review, using an iterative, stakeholder-driven, four-stage approach. This involved scoping the literature and conducting stakeholder interviews to develop initial programme theories, systematic searches of the evidence to test and develop the theories, and the validation of programme theories with a purposive sample of stakeholders.ParticipantsTwenty-six stakeholders (user/patient representatives, dementia care providers, clinicians specialising in dementia or diabetes and researchers) took part in interviews and 24 participated in a consensus conference.Data sourcesThe following databases were searched from 1990 to March 2016: MEDLINE (PubMed), Cumulative Index to Nursing and Allied Health Literature, Scopus, The Cochrane Library (including the Cochrane Database of Systematic Reviews), Database of Abstracts of Reviews of Effects, the Health Technology Assessment (HTA) database, NHS Economic Evaluation Database, AgeInfo (Centre for Policy on Ageing – UK), Social Care Online, the National Institute for Health Research (NIHR) portfolio database, NHS Evidence, Google (Google Inc., Mountain View, CA, USA) and Google Scholar (Google Inc., Mountain View, CA, USA).ResultsWe included 89 papers. Ten papers focused directly on people living with dementia and diabetes, and the rest related to people with dementia or diabetes or other long-term conditions. We identified six context–mechanism–outcome (CMO) configurations that provide an explanatory account of how interventions might work to improve the management of diabetes in people living with dementia. This includes embedding positive attitudes towards people living with dementia, person-centred approaches to care planning, developing skills to provide tailored and flexible care, regular contact, family engagement and usability of assistive devices. A general metamechanism that emerges concerns the synergy between an intervention strategy, the dementia trajectory and social and environmental factors, especially family involvement. A flexible service model for people with dementia and diabetes would enable this synergy in a way that would lead to the improved management of diabetes in people living with dementia.LimitationsThere is little evidence relating to the management of diabetes in people living with dementia, although including a wider literature provided opportunities for transferable learning. The outcomes in our CMOs are largely experiential rather than clinical. This reflects the evidence available. Outcomes such as increased engagement in self-management are potential surrogates for better clinical management of diabetes, but this is not proven.ConclusionsThis review suggests that there is a need to prioritise quality of life, independence and patient and carer priorities over a more biomedical, target-driven approach. Much current research, particularly that specific to people living with dementia and diabetes, identifies deficiencies in, and problems with, current systems. Although we have highlighted the need for personalised care, continuity and family-centred approaches, there is much evidence to suggest that this is not currently happening. Future research on the management of diabetes in older people with complex health needs, including those with dementia, needs to look at how organisational structures and workforce development can be better aligned to the needs of people living with dementia and diabetes.Study registrationThis study is registered as PROSPERO CRD42015020625.FundingThe NIHR HTA programme.

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“…These were two Clinical Psychologists (one female), two Community Psychiatric Nurses (both female), two GPs (one female), and two Psychiatrists working in Older Adults services. [This process is described in full in (Martin et al 2012)]. The reasons were integrated into a summary logic map, eliminating duplicated reasons, or those out with the remit of self-management (e.g., reasons relating to lack of government funding).…”

Section: Introductionmentioning

confidence: 99%

Conceptualisation of self-management intervention for people with early stage dementia

et al. 2012

Self Cite

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Dementia is a major challenge for health and social care services. People living with dementia in the earlier stages experience a ''care-gap''. Although they may address this gap in care, self-management interventions have not been provided to people with dementia. It is unclear how to conceptualise self-management for this group and few published papers address intervention design. Initial focusing work used a logic mapping approach, interviews with key stakeholders, including people with dementia and their family members. An initial set of self-management targets were identified for potential intervention. Self-management for people living with dementia was conceptualised as covering five targets: (1) relationship with family, (2) maintaining an active lifestyle, (3) psychological wellbeing, (4) techniques to cope with memory changes, and (5) information about dementia. These targets were used to focus literature reviewing to explore an evidence base for the conceptualisation. We discuss the utility of the Corbin and Strauss (Unending work and care: managing chronic illness at home. JosseyBass, Oxford, 1988) model of self-management, specifically that self-management for people living with dementia should be conceptualised as emphasising the importance of ''everyday life work'' (targets 1 and 2) and ''biographical work'' (target 3), with inclusion of but less emphasis on specific ''illness work'' (targets 4, 5). We argue that selfmanagement is possible for people with dementia, with a strengths focus and emphasis on quality of life, which can be achieved despite cognitive impairments. Further development and testing of such interventions is required to provide much needed support for people in early stages of dementia.

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Perceived barriers to self-management for people with dementia in the early stages

Cited by 50 publications

References 36 publications

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia

Managing diabetes in people with dementia: a realist review

Conceptualisation of self-management intervention for people with early stage dementia

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