A mere 19% of people affected by dementia had been offered an assessment and support plan at the time of diagnosis according to a recent survey by the Alzheimer’s Society in Wales (Alzheimer’s Society Cymru, 2022). These findings suggest that there may be a way to go before the Welsh Government’s aim for ‘Wales to be a dementia friendly nation’ is realised.
The Rare Dementia Support Impact study is looking to know more. Researchers at ֱ are carrying out part of this study, which is exploring the diagnosis process in more depth. The purpose of this research is to improve the experience for people in future, by learning from those who have been through it already.
Dr Jen Roberts, a researcher at the Dementia Services Development Centre (DSDC Wales research centre) at ֱ said,
“Research suggests that receiving a diagnosis and support is vital for continuing to live as well as possible for as long as possible. We know that internationally, people in rural areas tend to have fewer resources available to them. Is this true in Wales, a largely rural country? It is important for us to find out not only where the difficulties lie, but also find examples of types of support that are working well for people. The findings from this research will be presented to the Welsh Government, and we hope they will contribute to making a real difference to the diagnosis experience for people affected by dementia in Wales in the future.”
The research team would like to hear people’s personal experience and opinion of what needs improving. They also hope to hear stories about services or support that have been particularly useful or helpful.
This research study is open to:
• People living with or caring for someone with any type of dementia
• Diagnosed in any part of Wales
• At any point in time
This research opportunity is available in both English and Welsh, as an online questionnaire which can be completed in your own time at home. The work is funded by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR).
The questionnaires are available at .
Or you can contact Dr Jen Roberts: Email j.roberts@bangor.ac.uk // Tel 01248 388346.
Dementia: Research aiming to improve the experience of getting a diagnosis in Wales
"When I was diagnosed, I thought it was the end". Should this be how people feel when they receive a diagnosis of dementia? Or should they be supported to live as well as possible for as long as possible?
