P84: This has been far from easy: How do people affected by dementia in Wales experience their diagnosis, and how can it be improved?

Abstract

Background:

The Dementia Action Plan for Wales (UK), published in 2018, includes aims for improving assessment and diagnosis, as well as suggestions for what might characterise services that provide optimal support. Wales is a largely rural country, a factor shown previously to impede access to services. Suitable support for people living with rarer dementias is also limited, which may be further exacerbated by living in a rural area. This a relatively unexplored area of research.

Objectives:

This study explored diagnosis and post-diagnostic support experiences of people affected by dementia across Wales, as well as exploring any differences as a function of type of dementia (typical/rare), and rurality (rural/urban). Further, it sought to gain insight and recommendations from people living with dementia and their carers around how the process may be improved for people in Wales.

Methods:

A survey was developed using a range of both closed- and open-ended questions. It explored respondents’ experiences guided by the aims of the Dementia Action Plan for Wales around diagnosis and post-diagnostic support. The survey was shared online, open to anyone living with, or caring for someone living with dementia in Wales.

Results:

71 respondents completed the survey (people with dementia, n=10; carers/family members, n=61), living in rural/semi-rural (n=37) and in urban/suburban (n=34) areas, and experiences from people affected by both rare (n=17) and typical (n=49) dementias are reported (plus n=5 with no specific diagnosis). The results identified several challenges in the provision of support, indicating that there is some way to go before realising the ambition of Wales becoming a dementia-friendly nation. There are, however, examples of satisfaction with services and testimonials of good practice.

Conclusion:

The results of this work highlight areas to target within the Dementia Action Plan for Wales to improve support, and more broadly provide recommendations for improving policy and practice, based on the experiences and wishes of people with lived experience.