Professionals views on social care for people with young onset dementia

This work has been published online in the International Journal of Geriatric Psychiatry. 

Background

Young onset dementia is where the symptoms of dementia start under the age of 65. People with young onset dementia can struggle to access good social care, but it is important that they can access good support. They may find it difficult to find age-appropriate social care and services for which they are eligible as often services tend to be designed for older people, who face different challenges. Younger people can be in different circumstances such as still being in employment and having young children to support. We wanted to better understand the social care for people with young onset dementia and their families. 

We created a short survey for health and social care professionals working in England. We wanted to examine awareness, knowledge, and practice among professionals regarding social care needs, care planning, and provision for people with young onset dementia (dementia where the symptoms start under the age of 65). We had responses from 139 professionals. 

What situations triggered referrals for a social care assessment?

We found that a wide range of situations triggered referrals to social care. Often these were in response to crises and tended to relate to the needs of the carer. This could be because of changes in the carer’s circumstances or their well-being.

A decline in cognitive functioning or changes in mental health or behaviour-related needs of the person with young onset dementia could trigger referrals to social care. They may need help with financial issues or have social/occupational needs, such as around experiencing social isolation. Housing issues also triggered social care assessments if their home was not suitable.

How could access to social care for people with young onset dementia be improved?

Respondents identified the need for better awareness of young onset dementia and appropriate support services. It was recognised that there needed to be better commissioning and specific care pathways for people with young onset dementia and their families. Many respondents stated that there should be better community support such as age-appropriate services. Support for carers and the wider family could also be improved.

Respondents identified areas of good practice in social care provision. These focused on person-centred and reablement based approaches; multi-disciplinary and multi-agency working; support from peers and the third sector; seamless care pathways and dedicated young onset dementia services; support for carers; and personal budgets.

The survey findings have been published in an academic journal. To access the full article see: Quinn, C., Young, H., Stamou, V., Gridley, K., Mason, C., and Oyebode, J. (2025). Professionals' Views on Social Care Planning and Provision for People With Young-Onset Dementia and Their Families in England: Findings From the DYNAMIC Study.” International Journal of Geriatric Psychiatry.

The DYNAMIC study is led by Prof Jan Oyebode, Dr Catherine Quinn, Mrs Helen Young, Dr Kate Gridley, Mrs Clare Mason, and Dr Vasileios Stamou. We would like to acknowledge Elaine Daniels and Julie Hayden who are on the Project Management Group of the study. This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Social Care (RfSC) Programme (Grant Reference Number NIHR204266). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.