Services and support for people with early-onset dementia and their unpaid carers

While dementia is usually associated with older people, it can affect younger people. If a diagnosis is made under age 65, this is referred to as so called early-onset or young-onset dementia. One estimate suggested that there were 15,000 younger people with dementia in the UK in 2007. This is likely to be a major underestimate by up to three times because of the way the data relies on referrals to services (Knapp and Prince 2007). Given the different place in the life course with family, financial and work responsibilities, the impacts can be particularly devastating and life changing for the whole family. A recent exploratory study undertaken in PSSRU investigated the current picture ‘on the ground’ from two differing perspectives: experiences of younger people diagnosed with a dementia and their unpaid carers, and of professionals (health, social and voluntary sector) in providing services and support for this group. We found that service availability and care pathways varied with degree of local service specialisation, and that client satisfaction was greatest where the family had an ongoing and supportive relationship with their local specialist clinical team. Financial constraints and low case numbers are the main barriers to establishing more specialist services.