How can we improve social care provision for people with young-onset dementia?
Young-onset dementia refers to when the first symptoms of dementia occur before the age of 65 years. People with young-onset dementia seldom get good social care. Their age and diagnoses mean they have different needs to older people with dementia. This can often affect their families, including dependent children and ageing parents.
Two of the research team were researchers on The Angela Project, the largest study of support for people with young-onset dementia.
They found that social care is key to living well with young-onset dementia and the DYNAMIC study will build on this by identifying how it can be improved.
We aim to identify key improvements needed in social care for people with young onset dementia and their main supporters (family/friends). We will produce recommendations and resources to enable these improvements.
What we plan to do
This project runs for 30 months from April 2023 and involves different stages.
We will interview people with young-onset dementia and family/friends who support people with young-onset dementia. This is to find out about their needs, experience, and preferred support.
We will survey social care staff to find out about their awareness, knowledge, and practice.
We will present and discuss the findings with a diverse group of relevant stakeholders, including a mixture of professionals and people affected by young-onset dementia. Two or three priority improvements will be identified by this group.
We will then search for good practices in these priority areas by looking at published evidence and interviewing professionals. Using this information, we will work with the stakeholders to produce recommendations and resources that address their priorities.
Findings from the project will be shared widely to influence people in practice, policy, and those affected by young-onset dementia.
Call for participants
We are currently looking for people to interview for the study. If you are:
- a person with young onset dementia
- a family member or friend who supports someone with young onset dementia
- interested in telling us about your needs, experience and preferred support
If you are interested in knowing more about what is involved, please fill out your contact details on the form below and we will contact you back within two weeks.