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

Author:

Leavey GerardORCID,Corry Dagmar Suzanna,Waterhouse-Bradley Bethany,Curran Emma,Todd Stephen,McIlfatrick Sonja,Coates Vivien,Watson Max,Abbott Aine,McCrory Bernadine,McCormack Brendan

Abstract

ObjectivesTo assess the acceptability and use of a low-cost patient-held communication tool.DesignLongitudinal qualitative interviews at three time points over 18 months and document content analysis.SettingPrimary and community services.ParticipantsTwenty-eight dyads: People living with dementia in Northern Ireland and their informal carers.InterventionsA patient-held healthcare ‘passport’ for people living with dementia.Primary and secondary outcomesAcceptability and use of the passport—barriers and facilitators to successful engagement.ResultsThere 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.ConclusionSuch 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.

Funder

R&D Division of the Public Health Agency Northern Ireland

Publisher

BMJ

Subject

General Medicine

Reference26 articles.

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4. Alzheimer’s Disease International publication team, From plan to impact: Progress towards targets of the Global action plan on dementia 2018

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