Understanding the Needs of People With Rare Dementias and Recommendations for Improving Post-diagnostic Care: ‘There Is No Such Thing as One Size Fits All’

Abstract

People with rare dementias such as Lewy Body dementia show different symptoms to those with Alzheimer’s dementia. Due to the large proportion of people with Alzheimer’s dementia, most services are designed to support their needs and often neglect those of people with rarer dementias. The aim of this study was to understand the needs of people with rare dementias and their families to develop targeted support. Two care professional focus groups were held in the North West of England. Focus groups lasted up to 60 minutes and were subsequently transcribed and analysed via thematic analysis. One former carer for her husband with a rare dementia was an active member of the project team and helped design the interview schedule, interpret and disseminate the findings. 18 dementia care professionals took part. Thematic analysis generated six themes: (1) Complex needs unsupported; (2) Reluctance to approach services; (3) Lack of service adaptation to both people living with dementia and carers; (4) Lack of communication between service providers; (5) Environment of service provision; (6) Funding issues. As opposed to suggesting new types of social activities, focus groups identified significant barriers in approaching and using post-diagnostic for those affected by a rare dementia, as well as inequalities in access to care services. There are various personal and service barriers for people with rarer dementias and unpaid carers to accessing and using post-diagnostic services. Future implementation work needs to adapt services and identify ways in which to overcome barriers in approaching services.