Title Image Credit: Age Positive Image Library
Dr Esther Loseto-Gerritzen from the University of Nottingham tells us about her EquaDem funded research.
The foundation of this project was formed in May 2024 during an in-person Patient and Public Involvement meeting that I organised in Nottingham. Four people living with Young Onset Dementia travelled from all over the country to be there, and one person joined us online. The main reason for this two-day meeting was to film professional videos about the importance of (online) peer support. However, not less important, it was a chance for us to meet up in-person after working together for over a year solely on Teams. During our many conversations we talked about what future research is needed, what areas of health and social care can still be improved for people with Young Onset Dementia and their families, and our next steps.
Paul Harvey, one of my four colleagues who came up to Nottingham, asked me if I knew of any research being done on Young Onset Dementia and care homes. This is a personally important topic for him and after doing some research in his local area he found out that there was very little available for younger people like him. Care home research was not my area of expertise, but after speaking to Paul and our other colleagues I understood the importance of exploring this topic further.
I started with some quick searches on Google Scholar and a scoping review. I realised that care homes and Young Onset Dementia was a very underexplored topic. Most research was conducted in the Netherlands and Belgium and mainly focussed on medication use, challenging behaviour and staff stress and burnout. This highlighted two main research gaps. First, there was a lack of research on this topic in the UK. Second, there was little focus on the views and experiences of people with Young Onset Dementia and family members.
When I saw the funding call from EquaDem for projects on inequalities in dementia, I knew that it was perfect for a project on future care planning and care homes in Young Onset Dementia. Together with Paul, Prof Emma Wolverson, Dr Ben Hicks and North Yorkshire-based charity Dementia Forward, I designed a small-scale study on exploring the views and experiences of people with Young Onset Dementia and family members on future care planning and care homes. We all put so much time, effort and dedication into it and we could not have been happier when we heard that our project was selected for funding!
Fast forward, we are currently in the midst of data collection. Paul, myself and Vanditha Sujeer, a fantastic research assistant and Dementia Forward volunteer working with us, are conducting interviews with people with Young Onset Dementia and family members. We talk about their views and experiences with future care planning, how they feel about care homes, whether they see this as a possible option for the future, and what good care in care homes would look like for them. So far, each person has a unique story and helped us understand the different barriers and challenges they face, including availability of and access to care homes, getting formal care plans in place, and financial barriers. At the same time, we also learned about some great examples of good practice and person-centred care across the country.
In a few weeks’ time we will meet with our wider Lived Experience Advisory Panel, consisting of two family carers and three people living with Young Onset Dementia, all based in different parts of the country. Together we will talk about how we can improve future care planning and care homes for people with Young Onset Dementia and their families, what good care should look like, how we can achieve this, and how to support families with the financial implications of moving into a care home when the person is under 65. To say that this is a beast of a topic is an understatement. An analogy we like to use is that it feels as if we are currently on a roundabout and each exit represents a different direction for future research. It is now up to us to decide which exit we want to take next.