Postdiagnostic support for young carers
Assessment, diagnosis, care and support for people with dementia and their carers (SIGN)
Service providers should offer a whole family approach for people with young-onset dementia and any young carers, with tailored and co-ordinated support and care from all sectors (including adult and child health services, education services and voluntary sectors). This should include continuity of care with one case manager or key worker who has knowledge of the family’s situation and who will facilitate support services for the person with dementia to alleviate any care burden and ensure the young carer continues with education or work.
Young carers and families of people with dementia should be offered support from one expert healthcare professional.
If the young carer is still in education, all professionals (eg healthcare professionals, case managers or key workers, teaching and education staff) should be aware of their role as a carer so they can offer educational and emotional support as needed. All should work flexibly and cohesively to support the young carer’s needs and facilitate continuity of education (eg the need to stay close to family or spend time with their parent) and look for and address any stigma and bullying.
All professionals (eg health visitor, teacher, healthcare professional or case manager) involved in the education and care of very young carers in full time education who are related to, live with or support a person with dementia should consider the support needs of the child independently of the needs of the person with dementia. Professionals should seek to build trusting relationships, so that the young carer can share any needs or concerns they may have, so these can be addressed.