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Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

ABSTRACT: OBJECTIVES:To assess the acceptability and use of a low-cost patient-held communication tool. DESIGN:Longitudinal qualitative interviews at three time points over 18 months and document content analysis. SETTING:Primary and community services. PARTICIPANTS:Twenty-eight dyads: People living with dementia in Northern Ireland and their informal carers. INTERVENTIONS:A patient-held healthcare 'passport' for people living with dementia. PRIMARY AND SECONDARY OUTCOMES:Acceptability and use of the passport-barriers and facilitators to successful engagement. RESULTS:There was a qualified appreciation of the healthcare passport and a much more nuanced, individualistic or personalised approach to its desirability and use. How people perceive it and what they actually do with it are strongly determined by individual contexts, dementia stage and other health problems, social and family needs and capacities. We noted concerns about privacy and ambivalence about engaging with health professionals. CONCLUSION:Such tools may be of use but there is a need for demanding, thoughtful and nuanced programme delivery for future implementation in dementia care. The incentivisation and commitment of general practitioners is crucial. Altering the asymmetrical relationship between professionals and patients requires more extensive attention.

SUBMITTER: Leavey G

PROVIDER: S-EPMC7223142 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

Leavey Gerard G Corry Dagmar Suzanna DS Waterhouse-Bradley Bethany B Curran Emma E Todd Stephen S McIlfatrick Sonja S Coates Vivien V Watson Max M Abbott Aine A McCrory Bernadine B McCormack Brendan B

BMJ open 20200505 5

<h4>Objectives</h4>To assess the acceptability and use of a low-cost patient-held communication tool.<h4>Design</h4>Longitudinal qualitative interviews at three time points over 18 months and document content analysis.<h4>Setting</h4>Primary and community services.<h4>Participants</h4>Twenty-eight dyads: People living with dementia in Northern Ireland and their informal carers.<h4>Interventions</h4>A patient-held healthcare 'passport' for people living with dementia.<h4>Primary and secondary out ...[more]

PMID: 32376757

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Project description:BackgroundHealth policy promotes post-diagnostic support for people affected by dementia. Evidence suggests psychosocial interventions can effectively support people living with dementia after diagnosis. Yet, what influences uptake of psychosocial interventions by people with early dementia is poorly understood. This research aimed to identify influences on uptake of psychosocial interventions by people with early dementia.MethodsSixteen face-to-face semi-structured interviews with people with early dementia, either alone or with a family member(s), were completed. Twelve staff participated in semi-structured interviews or a focus group. Thematic analysis and triangulation enabled identification of overall themes across different participant groups and interview types.Main findingsFour overarching themes influencing uptake were identified: (1) adjusting to a diagnosis, (2) appeal of activities and perception of benefit, (3) service and societal context, and (4) relationships and communication. Individual responses to diagnosis, experiences of dementia and dementia services influenced uptake. Group interventions were discussed the most by all participants. Group interventions offering social contact, peer support, information, enjoyable activities and mental stimulation were valued. However, group interventions specifically aimed at people with dementia did not appeal to all. Ability to travel and convenience of locations were important. Continuing with community activities not focused on dementia was valued. Stigma around dementia appeared to discourage uptake. Emotional and practical support from family was key to facilitating uptake as were the relationships between people with dementia and staff.ConclusionA complex interplay of individual, service and societal influences affect uptake of psychosocial interventions by people with early dementia. How interventions and which services can enable people with early dementia remain engaged in their everyday lives needs consideration. Further research examining uptake of specific interventions commonly offered to people living with early dementia is needed. Involving people with early dementia in designing interventions aiming to support them is paramount.

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Dataset Information

Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

Publications

Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

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