From pillar to post – a study of younger people with dementia

AIMS and Method A health needs assessment was undertaken to evaluate current provision and to help inform the future development of services for people under the age of 65 years with dementia in Leeds. Results The prevalence rate for early onset dementia in Leeds was found to be 42 per 100 000 aged 30–64 years, and 78 per 100 000 aged 45–64 years. Four main gateways for specialist investigation and care were identified and 38 referral pathways were identified in total. Carers had difficulties accessing information and services and they, along with the patients, valued, in particular, both the coordinated service provided by the specialist early onset dementia team and the dedicated day care facility available in Leeds. Clinical Implications Younger people with dementia can have very different needs to older people. The prevalence rate and the experiences of carers and patients clearly justifies the existence and further development of a specialist early onset dementia service. Such a service should provide a single gateway to coordinated service provision and ensure continuity of care. It should provide sufferers and carers with information, advice and expertise.