Although the literature is growing, the voices of younger people living with dementia (diagnosed under the age of 65 years) have traditionally been under represented in research. I had the privilege of spending three years working on a large study looking at the experiences and needs of younger people living with dementia at Salford University, along with Professor Tracey Williamson. A real strength of our study was our dedicated advisory group of younger people living with dementia and carers, who were involved throughout the research process over the three years. We also had a large sample of 72 participants who we interviewed, including people living with dementia, carers and staff working in health and social care services.
In 2018, we published our first research paper from the study, which focused on the voices and experiences of 14 individuals living with a diagnosis of young onset dementia. It is difficult to sum up these important stories in just a few sentences, but some of the key learning points include:
1. The importance of peer support cannot be underestimated, particularly with a condition that is rare and that can lead to a high degree of social isolation. Peer support should be incorporated into services as much as possible, from the point of diagnosis onwards.
2. People have valuable coping strategies to share – when talking about living well with dementia, the intention is not to make light of the experience of dementia, it’s more about challenging the stereotype. What we need to start to focus on are ways of understanding the strengths and capabilities that people draw on to improve their own wellbeing.
Dementia Carers Count are running a course for carers of someone with Young Onset Dementia from the 22nd – 24th of March, book your place here.
Luisa Rabanal is a Dementia Carers Services Practitioner with Dementia Carers Count