Rare Dementia Support

Between 5% and 15% of people living with a dementia receive a diagnosis of a rare or young-onset dementia (before the age of 65). A rare dementia diagnosis brings with it a set of unique and complex challenges, yet there is a widespread lack of understanding and a shortage of dedicated resources to support people affected by rare dementias.

At Bangor, we are working in partnership with colleagues in University College London who run Rare Dementia Support, a UK based service working to support people affected by five rare dementia conditions (for more information please see http://www.raredementiasupport.org/).

Have you been diagnosed with a rare dementia?

Do you care for or support someone with a rare dementia?

Join us online for our RDS in Wales Support Group meetings

  • A friendly social gathering for anyone affected by rare dementia in Wales
  • A safe place to talk, share experiences, and connect with others affected by rare dementia
  • We meet once per month, via the online platform Zoom

If you would like to attend, for joining instructions please contact:

You are invited to become a member of RDS:
If you would like to become a member of Rare Dementia Support, and receive further information about support and research opportunities, please click here.

Research

We are part of a five-year Rare Dementia Support (RDS) Impact Study, a collaboration between University College London (UCL), Bangor University and Nipissing University in Canada, led by Professor Sebastian Crutch from the Dementia Research Centre, UCL.

This is the first major study of its kind, and will examine the specific challenges, support needs and care preferences of people affected by a rare dementia, and the value of a support group such as that provided by the Rare Dementia Support Network. http://www.raredementiasupport.org/research/

Work ongoing at Bangor University


Help us to design new ways to measure ‘resilience’ in dementia

How people living with dementia experience resilience

What helps people manage or ‘do okay’? We are developing a measure of resilience that is specifically for people living with a rare dementia, because none currently exist. This is important because it will allow researchers to measure changes in resilience in response to health, psychological and social care services or interventions. The next step in this work is to discuss a set of questions with people living with rare dementias.

Getting a diagnosis of dementia in rural and urban Wales

We are interested in hearing peoples experiences of getting a diagnosis of dementia in Wales, in the hope that we can help improve the process for others in the future.

We hope to speak to people who live in both rural and urban areas, to see if there is a difference in people’s experiences.

We would like ask you about:

  • Your journey to getting the diagnosis
  • The diagnosis itself
  • The support you received following the diagnosis

If you live with a diagnosis of dementia, or care for someone who does, we would appreciate the opportunity to talk to you about your experience of getting the diagnosis.