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ToolsCole, Jennifer, Hanson, Sarah, Hornberger, Michael and Parretti, Helen M. (2026) The experiences of people with dementia and their informal carers of long-term condition reviews in primary care: A qualitative study. Health & Social Care in the Community, 2026 (1). ISSN 0966-0410
Full text not available from this repository. (Request a copy)Abstract
Multimorbidity (having more than one long term condition) is common for people with dementia and leads to increased healthcare needs and poorer outcomes for those individuals and also their informal carers. In the UK, part of the management of co-morbidities occurs through annual long-term condition reviews in primary care. To date there has been little research on the experiences of people with dementia and their informal carers with regards to these reviews. A qualitative study of people with dementia and informal carers recruited across England was undertaken, exploring their experiences of long-term condition reviews in primary care. Semi-structured interviews with 16 participants (two people with dementia, 10 informal carers and two informal carer/people with dementia dyads) were conducted via telephone and the principles of Reflexive Thematic Analysis used to analyse the data. We identified four main themes from the data: 1) What matters to people (identifying and meeting both medical and holistic needs) 2) The experience of the review (the wide range of experiences) 3) The importance of communication (the desire for better communication) and 4) The involvement of people with dementia and carers in decisions (their wish to be involved, the lack of opportunity for this and how this reduces shared decision making and patient-lead care). Our findings suggest that current long-term condition reviews are frequently not meeting the needs of people with dementia and their informal carers. Initial strategies to improve long-term condition review should include ensuring that patients and informal carers (including for informal carers of people with dementia in residential homes) are able to participate in the reviews. Further research with key stakeholders is now needed to improve our understanding of current organisational and clinician perspectives and to aid in optimising long-term condition reviews.
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