Overview
Most people with dementia have at least two further health conditions. However, research usually studies dementia on its own. People with several co-existing conditions are often excluded from drug trials, despite being in the majority.
Currently, many dementia research studies look at changes in cognition (memory and thinking), function (how a person manages day-to-day), quality of life, and symptoms such as distress and depression. We don’t know whether these measured outcomes are relevant to people who have dementia alongside other conditions.
Project Details
This project aims to understand what people with both dementia and other physical diagnoses, and their care partners, would like to be targeted or measured in research studies.
We held nine focus group meetings with people with dementia and their care partners in Scotland. Participants were recruited through the NHS Research Scotland Neuroprogressive and Dementia Network. Four pairs of focus groups took place separately for people with dementia and care partners, and the final meeting combined everyone. We discussed existing published research priorities in the context of complexity in dementia.
The meetings were transcribed and Dr Stirland reviewed the transcripts to find important topics. At each meeting, participants built on these themes to make a list of their preferred outcomes and priorities for research.
The final list of research priorities according to people with dementia and other conditions and their care partners has been collated into an infographic (see below). It has been shared with diverse stakeholders at an outreach event and a scientific paper is in preparation.
The project will provide essential information to guide Dr Stirland’s future studies and career development. It will also help other researchers to design studies based on person-centered priorities.
Members involved
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