Supporting people affected by genetic and non-memory led dementias – the GNMLD-TALK study.

Organisation/institution: Swansea Centre for Health Economics (SCHE), Swansea University.

Key contact: Katherine Cullen

What was the question that we could help with?

Rarer dementias affect around 115,000 people in the UK (including 59,000 people with dementia, 45,000 carers and 11,000 at genetic risk of rare dementias). With these dementias mostly affecting people under 65 years, there is considerable impact on carers and substantial anxiety of developing dementia and passing it onto their children in those with genetic risk of dementias. While patients are spread around the country, the National Institute for Health Research (NIHR) identified that areas of high prevalence are areas with a low volume of research activity. One such area is the South-West Wales region.

What did we do?

In collaboration with University College London (UCL), the North Wales Organisation for Randomised Trials in Health (NWORTH)
and the Centre for Ageing and Dementia Research (CADR), HCEC researchers at SCHE led the design of a core work package for an NIHR programme grant which will address the costs and consequences of blended in-person/digital interventions for people with one of five under-researched genetic or non-memory led types of dementia. The programme was awarded in June 2022 (total £1.9 million over 60 months), bringing £212,000 to Wales and £99,000 to HCEC. It adds a fourth NIHR programme grant to our current portfolio with Welsh health economists making a significant contribution to the award of a major grant from a highly competitive UK funding
scheme. The GNMLD-TALK award (NIHR 203680) is registered on the NIHR portfolio.

What was the impact?

This programme will support Dementia policy and practice in Wales. In the Dementia Action Plan for Wales 2018-2022 and the All Wales Dementia Care Standards, Welsh Government set out to develop a consistent pathway to enable people to get a timely diagnosis along with the care and support they need.


Cullen K, & Fitzsimmons D. Methods for economic evaluation of in-person and digital interventions for genetic non-memory led dementias. PROSPERO 2022 CRD42022356943