Update on the DYNAMIC study survey in England on social care for people living with young onset dementia.

Recap and progress so far: survey outcomes

139 staff with knowledge of social care in England responded to our survey, giving their views on social care for people with young onset dementia and their families. We had a wide variety of respondents across the different sectors involved in commissioning, managing and delivering social care.

We are currently writing up the survey findings for publication.

How we used the survey information 

1. Navigation and continuity of support
2. Person-centred and age-appropriate support
3. Finance
4. Raising awareness
5. Peer support
6. Support for children

We held a stakeholder workshop in September 2024 involving people with lived experience and professional staff to help determine, from the 6 key areas, 2 or 3 priorities to focus on for the rest of the project. From listening to these stakeholders, we decided to focus on developing recommendations and resources to positively impact the following two areas:

1. Raise awareness amongst social care staff about the social care needs of people with young onset dementia and their families.
2. Improve strategies to help manage the financial impact of living with young onset dementia, given that young onset dementia can bring extra costs and affect the amount of money coming into the home.

Within both of these areas we will consider the needs of the South Asian population as well as the wider population.

Next steps

We are reviewing research evidence on best practice in the above two priority areas. In May, we will start to interview staff to find out more about good practice in these areas. Informed by this evidence, over the summer, we will work with staff and people with lived experience to co-produce recommendations and resources to influence improvements in these areas. We will be sharing these resources once they have been created.