Professionals' Views on Social Care Planning and Provision for People With Young-Onset Dementia and Their Families in...

Access to appropriate social care post-diagnosis is crucial for people with young onset dementia (YOD) and their families. Yet care is hugely variable, frequently lacking, and poorly coordinated. We aimed to establish levels of awareness, knowledge, and practice among professionals regarding social care provision for people with YOD.

A short survey (24 items) was developed based on previous research and through consultation with experts by experience and the project steering group. The aim was to establish awareness, knowledge, and practice among professionals regarding social care needs, care planning, and provision for people YOD. The survey was available online.

There were 139 responses from health and social care professionals. A wide range of situations triggered referrals to social care, illustrating the holistic impact of YOD. However, most referrals were triggered by crises rather than a proactive approach and were in response to carers' needs rather than those of the person with YOD. Referrals for advice and guidance around financial impacts were common. Most respondents reported there was no agreed care pathway and no YOD-specific guidelines in their service. Areas of good practice in social care provision included: person-centred and reablement based approaches; multi-disciplinary and multi-agency working; support from peers and the third sector; seamless care pathways and dedicated YOD services; support for carers; and personal budgets.

Staff need accurate knowledge and awareness of specific YOD-related issues to provide effective social care for those with YOD and their families. The current system tends to be reactive at point of crisis, whereas proactive planning and provision could pre-empt crises and provide more effective support. YOD-specific care pathways and guidance are needed to improve social care for this population.