Jennifer L Cole
Background: Multimorbidity is common in dementia and is associated with both increased healthcare utilisation and poorer outcomes. Part of the management of Long Term Conditions (LTCs) occurs through annual LTC reviews conducted in primary care. In England, these are generally linked with Quality and Outcomes Framework (QOF) targets although patient priorities and concerns may be left unexplored as a result of the dominance of QOF. Little is known about the experiences or needs of people with dementia (PWD) and informal carers in regard to LTC reviews. Aim: To explore the experiences of PWD and their informal carers of the review and management of LTCs in primary care. Method: Qualitative research study. Semi-structured interviews were conducted with PWD and informal carers. Participants were recruited through Join Dementia Research and local (to Norfolk, UK) charities. Thematic analysis was undertaken with reference to Braun and Clarke (2006). Institutional ethical approval (ref ETH2122-1035) was received May 2022. Results: 16 participants were interviewed: two PWD, 10 informal carers and two informal care/PWD dyads. Our findings fall into four main themes: 1) What matters to people; medical needs such as reducing polypharmacy and holistic social and wellbeing needs 2) What is a review; the diversity of experiences 3) The importance of communication and 4) Preference for shared decision making. Conclusion: PWD and informal carers want to be more involved in LTC reviews. Consideration should be given to ensuring patients and carers are aware when a LTC review will take place so providing them with the opportunity to be involved and thus allowing shared decision making and patient centred care. Further research into the clinician experience and their views on patients’ needs and how to meet them is required in order to consider how we can optimise LTC reviews for people with dementia as well as in general.