Development of the DLI-dem
Research type
Research Study
Full title
Understanding and improving death literacy in dementia: the development and implementation of a measure of death literacy for carers of people with dementia
IRAS ID
357191
Contact name
Nicola White
Contact email
Sponsor organisation
University College London
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
We will develop a measure for carers of people living with dementia. This measure will help to identify what carers feel confident in and what knowledge gaps exist when providing end of life care.
Why is this study needed?
By identifying where people are confident and what gaps in knowledge exist, we can develop suitable and timely support. The number of people living with dementia is set to increase; this will increase the number of informal (unpaid) carers. Often carers are family members, who must navigate complex health andsocial care systems. Carers also need to look after themselves, and to know where to go for support. Carers are usually responsible for making decisions on behalf of the individual living with dementia, particularly as the dementia progresses. Awareness of what support is available and how to access that support (called “Death Literacy”) can improve the quality of care received and the confidence of the carer. The measure we will develop will help us to understand death literacy levels of carers of people living with dementia across the UK, which in turn, can help healthcare providers targeted information. There is already a measure called the “Death Literacy Index”. We want to adapt this, to make it reflect the needs of carers of people living with dementia.
What does the study involve?
We will develop the measure over three stages:
1. We will interview carers of people living with dementia. We will also interview specialist dementia nurses. We will go through the Death Literacy Index (DLI) and refine it so that it reflects the needs of carers of people living with dementia. We will call this refined measure the DLI-dem and we will create an instruction guide to go with it.
2. We will conduct a national survey, open to all carers of people living with dementia in the UK. With results from the survey, we can further refine the measure. We will also get a national score of death literacy in this group.
3. We will ask specialist dementia nurses to use the DLI-dem as part of their routine practice for 3 months. This will give us information about how the measure might be used to broaden our understanding of social support and interventions in the future.
How will the study help people living with dementia and their carers?
The DLI-dem will help to initiate conversations about end-of-life care. It will help identify a carer’s current knowledge and things they do not know. This will provide vital help for people who are caring.
How are those living with dementia and their carers involved in this study?
A co-applicant is a current carer for a family member who has advanced dementia. Her experience of navigating support services has informed the development of this study. We have an advisory group of people with lived experience as a carer of someone living with dementia. They will meet throughout the project to discuss the progress and interpretation of the results.REC name
Social Care REC
REC reference
25/IEC08/0033
Date of REC Opinion
18 Nov 2025
REC opinion
Favourable Opinion