Evaluating Dementia Pathway Services: A Sussex-wide Patients and Carers’ Perspective.

Introduction

As the prevalence of dementia continues to increase across the UK, understanding the lived experience of patients and carers affected by dementia becomes paramount. There is an established dementia pathway in Sussex for people living with dementia (PLWD) and their carers. To improve care and inform future commissioning priorities, the Brighton and Hove Health Watch (BHHW- a community interest company) surveyed the opinions of a group of PLWD and their carers around initial diagnosis and subsequent support.

Methods

PLWD and their carers receiving social support and willing to provide feedback were included in this survey. Using a topic guide, BHHW volunteers conducted a telephone interview with this group exploring their experience with their general practitioner (GP), and the memory assessment service (MAS) in relation to diagnosis, and post-diagnosis support. Transcribed interviews were analysed using qualitative thematic analysis (inductively and deductively) using Braun and Clarke’s method.

Results

Forty-five participants were interviewed, 37 carers and 6 PLWD (average age 78.2 range 64-95 years) between December 2022 and May 2023. Thirty-nine participants (86%) were of white-British ethnicity. Participants reported a range of different experiences with no consistent pattern by age, gender or location. Participants were generally satisfied with the initial GP care they received. The waiting time to access MAS was six weeks on average, an acceptable timeframe for the group. Some participants reported waiting as long as two years since the initial GP consultation before a dementia diagnosis was eventually made. Participants were generally satisfied by the thorough MAS review. Most participants felt that the information material they immediately received after dementia diagnosis was complex and overwhelming. Social support offered post-diagnosis was commendable.

Conclusion

The lived experience of PLWD and their carers in Sussex was generally positive. However, a tailored approach to post-diagnosis information provision is required.