Supporting people with dementia

There are approximately 14,830 people in West Sussex estimated to be living with dementia.  This figure is forecast to rise to approximately 21,750 by 2040 in line with the ageing population.  Adults’ Services works closely with the NHS and other partners to provide a coordinated approach to supporting people with dementia and their family and friend carers and to deliver the priorities of the West Sussex Joint Dementia Strategy 2020-23.

Early diagnosis of dementia gives people and their families the opportunity to plan for the future. The Dementia Assessment Service, provided jointly by Sussex Partnership NHS Foundation Trust and the Alzheimer’s Society, offers diagnosis and post-diagnostic support for people and their family and friend carers. Referrals to the service are through people’s GP. During 2022-2023 the service received 4,542 referrals (4,579 in 2021-22) and completed 3,818 diagnoses. Of these,  2,223 were dementia, 715 were for a mild cognitive disorder and the remaining 880 were for other diagnoses such as, depression, Parkinson’s disease or post-traumatic stress disorder.

The Forget Me Not Unit is an acute dementia care unit based in Worthing Hospital caring for patients who require specialist treatment for their dementia needs. There are three 10-bedded wards.

The Sussex Partnership NHS Foundation Trust Dementia and Older Person’s Mental Health Service supports people with complex dementia, including people living in care homes. This service provides support to both individuals and family and friend carers.

The Alzheimer’s Society’s dementia advisers work across the county and provide early support following diagnosis which can prevent people from reaching crisis point and enables them to plan for the future.  Following diagnosis, the individual and their family and friend carers are offered either light-touch support or more intensive one-to-one community-based intervention and support, depending on how they are feeling. For some, too much information at diagnosis may not be helpful so the Alzheimer’s Society extend their offer to a Keeping in Touch service to ensure that people are proactively supported throughout their dementia journey. Between 2022 and 2023, 591 calls were made.

The Alzheimer’s Society also provide phone-based support and companionship calls.  During 2022-23, 4,544 people received phone-based support (2,397 in 2021-22). Companionship calls, which initially served as a COVID-19 response measure, will continue for the foreseeable future as the service has made a significant difference to people experiencing isolation.  This resulted in 68 volunteer matches (67 in 2021-22) and over 1,100 companion calls (over 3,000 in 2021-22).

Also run by the Alzheimer’s Society is the Focus on Dementia Network Groups which ensure people affected by dementia have their voices heard both locally and nationally.  There are six groups currently, in Crawley, Horsham, Haywards Heath, Worthing, and Chichester and Bognor, including a countywide offer through the ‘Young Onset Local Group’.  They also run an online Peer Support Group for South Asian communities that serves our South Asian community in a tailored and culturally sensitive way. 16 carers from the community regularly connect with the group and share advice and information.

Carer Information and Support Programme (CrISP)

Having regular breaks from caring is essential for a carer’s health and wellbeing. CrISP, delivered by the Alzheimer’s Society through a series of sessions/courses, provides support and information in a group environment where carers share experiences and find out about local and national services offering support. 

Local dementia-friendly communities

A dementia-friendly community is a city, town or village where people with dementia are understood, respected and supported so that they can continue to live in the way they want and in their community. They are often led by a group of volunteers who work together to make their local community a welcoming place for people with dementia. In West Sussex, there are 10 dementia-friendly communities with a membership of over 300 businesses and organisations.

A Community Development Coordinator role has been created to lead on equality and diversity and to reach under-represented groups across the county.