Work Programme 3 Description

What is the purpose of this Work Programme?

Dementia Care: What is important to you?

Accessible Summary

As a part of the national Neighbourhoods and Dementia Programme, we are looking at what ‘outcomes’ are important to people with dementia who live at home. Here the term ‘outcome’ refers to the result of different activities, support, or services on the life of a person with dementia. We will develop something called a ‘core outcome set’. This is a short list of outcomes that should be measured by researchers looking into non-drug treatments for dementia.

The reason we are doing this study is because it can be difficult to compare dementia care studies. But we need to compare dementia care studies if we are to find out what sorts of care work better than others. Also, what is important to people with dementia themselves is often not included in research. So we are interested to find out which outcomes are important from the point of view of people living with dementia. We will also ask care partners, health and social care professionals, researchers, policy makers, and service commissioners about their views of what outcomes are important for people with dementia living at home.

To find out what is important to people living with dementia we will use focus groups and interviews. We will also look at academic papers to find other important outcomes. Through two surveys we will then ask people with dementia, care partners and health and social care professionals to tell us how important the different outcomes are. After this and using another survey, we will ask the same groups of people to tell us how the outcomes should be measured by researchers.

From all of this work we will be able to show what outcomes are important to people with dementia and which of them should be measured by researchers in future studies on non-drug treatments for people with dementia living at home.

This Work Programme focuses on people living with dementia at home in their neighbourhoods and communities. We aim to establish an agreed standardised set of outcomes that should be included and measured when evaluating interventions or trials. Currently there are wide variations in outcomes used in research. This makes it difficult to compare studies and draw conclusions on effectiveness. The development of a standard outcome set is one method proposed to address these issues. This study involves a range of stakeholders including people living with dementia, care partners, health and social care professionals and policy makers/service commissioners to seek their perspectives on what outcomes are important and meaningful to people living with dementia.

Key research questions

  1. Which outcomes should be measured from the perspective of people living with dementia living at home, care partners, health professionals, researchers, policy makers/ service commissioners?
  2. How should such outcomes be measured?

Phase 1

Review of literature, focus groups and interviews with each stakeholder group to identify which outcomes should be included when evaluating non-pharmacological interventions.

Phase 2

Delphi survey to reach agreement on outcomes that are important to support people living with dementia in their neighbourhoods and communities.

Phase 3

Systematic literature review to identify and assess the properties of measures for outcomes identified in earlier study Phases.

Phase 4

Stated Preference Survey to identify the relative importance / preferences of identified outcomes from Phase 2 for each stakeholder group.

Advisory Group

The WP3 Advisory Group Chair is Professor Bob Woods, Bangor University. Our Member Involvement representative is Dr Daphne Wallace who is supported by Rev Richard Wallace. Group membership also includes Professor Gail Mountain, Bradford University, and Dr Louise LaFortune, Cambridge Institute of Public Health

WP3 Advisory Group