Supporting people with intellectual disabilities and their families following a diagnosis of dementia: Adapting the Living Well with Dementia (LivDem) approach.

 

Funding

NHS Bristol, North Somerset and South Gloucestershire ICB Research Capability Funding­­.

What is the research question?

How can we adapt the Living Well with Dementia (LivDem) programme to support people with intellectual disabilities and their families following a diagnosis of dementia?

What is the problem?

People with an intellectual disability are more likely to develop dementia and often do so at a younger age.  People with an intellectual disability and Down’s Syndrome are at even higher risk, with almost two thirds likely to develop dementia.

People with an intellectual disability often live with their family for much longer and continue to be supported by their family after leaving home.  Therefore, dementia is likely to bring challenges for the whole family, Many people with intellectual disabilities and dementia experience problems such as aggression or disturbed sleep. This can mean they require a lot of support from services and sometimes even hospital admission.

Many people with intellectual disabilities and their families would benefit from emotional support and help to understand the diagnosis. However, this is rarely provided. There are no interventions aimed at supporting the person and their family to talk about this together.

What is the aim of the research?

Living Well with Dementia (LivDem) is an evidence-based approach to supporting people to talk and adjust following a dementia diagnosis. LivDem groups have been delivered across the UK for over ten years. Recently, we developed a version of LivDem for people who to talk with their family. However, LivDem is not currently suited to most people with an intellectual disability who develop dementia.

This research aims to adapt the Living Well with Dementia (LivDem) programme to support people with an intellectual disability and dementia and their families (LivDem-ID). LivDem-ID will give families the opportunity to talk together about what is happening now and plan for the future. LivDem-ID will take into account the particular challenges that may be faced by people with an intellectual disability and dementia.

How will this be achieved?

Following the development of the LivDem-ID intervention completed with RCF funding, we will apply for NIHR funding. This NIHR project is likely to have four phases:

1. To start to explore whether LivDem-ID may be helpful we will deliver it to 6 families where one person has an intellectual disability and dementia.
2. We will then create a training package for facilitators of LivDem-ID.
3. We will train around 25 facilitators from NHS and the community sector to deliver LivDem-ID with a small number of families. This will be in different types of services to see where it fits best.
4. We will evaluate whether LivDem-ID might be helpful and who might be best to deliver it.
All phases will be supported by our patient and public involvement and engagement group (PPIE) including people with intellectual disabilities and family carers.

Who is leading the research?

This research is led by Dr Natasha Woodstoke, Clinical Psychologist and Dementia Research Fellow, Centre for Clinical and Health Research, School of Health and Social Wellbeing, University of the West of England (UWE), Bristol.

Further infomation

For more information or to get involved with this project, please email bnssg.research@nhs.net.