Postdiagnostic support for people with young-onset dementia
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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.
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All health and social care professionals involved in the care of people with dementia should communicate in an empathetic way.
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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.
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People with young-onset dementia should be offered a key worker/case manager and postdiagnostic support information immediately after diagnosis.
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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).
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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.
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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.