Postdiagnostic support for people with young-onset dementia

People with young-onset dementia should be provided with:

immediate emotional support, in the short term, rather than information provision
age-appropriate support (eg appropriate day services) and programmes, tailored to their
individual needs, and support with accessing these
information on prognosis, services and coping strategies
support to engage in meaningful activities
peer support
support with work and employment
support with financial problems.

All health and social care professionals involved in the care of people with dementia should communicate in an empathetic way.

People with young-onset dementia should be offered a key worker or case manager to provide continuity of support and enable the person living with young-onset dementia to understand their condition and actively engage in their care plan and journey. The key worker should act as a co-ordinator of services, organisations and people and be available through a variety of organisations, depending on local infrastructure, such as primary care or the voluntary sector, or within local mental health teams or neurology services.

People with young-onset dementia should be offered a key worker/case manager and postdiagnostic support information immediately after diagnosis.

Health and social care professionals should be aware of young-onset dementia and the needs (including support with grief) that people with young-onset dementia and their families experience (see grief and dementia section).

Health and social care professionals should be aware that a major barrier to accessing care among people with young-onset dementia is denial and refusal to seek help, stigma associated with the disease, and the emotions associated with diagnosis, and sharing this diagnosis with others.

NHS boards should have distinct diagnostic services and referral pathways for people suspected of having young-onset dementia, and ensure these link to age-appropriate postdiagnostic support services.