The Experiences of People With Dementia and Their Informal Carers of Long‐Term Condition Reviews in Primary Care: A Qualitative Study

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 United Kingdom, part of the management of comorbidities 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 regard 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. Semistructured interviews with 16 participants (two people with dementia, 10 informal carers, and 2 informal carer/people with dementia dyads) were conducted via telephone, and the principles of reflexive thematic analysis were used to analyze 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‐led 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 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 organizational and clinician perspectives and to aid in optimizing long‐term condition reviews.