Understanding and improving death literacy in dementia

Background

Informal (unpaid) carers of people living with dementia provide care and are often responsible for decision-making, particularly towards the end of life. 'Death literacy’ is the set of skills and knowledge necessary to understand, access support, and inform decision-making at the end of life. High death literacy can improve quality of care, confidence of carers, and address inequities in access to support. No studies have yet explored the death literacy of carers for people living with dementia. 

Aims

To understand the death literacy of carers for people living with dementia in the UK. 

Methods

There are three phases to the study:

1. Refining a measure of death literacy: Interviews with current or former carers to review a measure of death literacy and refine the questions so it is relevant for those caring for someone living with dementia.
2. Measuring death literacy in family carers of people living with dementia: Carers across the UK will complete an online survey including the refined measure of death literacy, establishing a national death literacy benchmark.
3. Application: Specialist dementia nurses will implement the developed measure within their routine practice. Carers who have completed the measure with the nurse will also be invited to an interview to reflect on their experience of using the new measure. 

Anticipated Impact and Dissemination

The results will be published through academic routes (peer reviewed publications, national and international conferences).

Collaborators from a variety of backgrounds (clinical, academic, policy, charity and commissioning) will identify non-traditional routes to impact in practice, research and policy. This will include knowledge exchange events with support services from across the UK an international roundtable. 

Further information

https://www.deathliteracy.institute/death-literacy-index-questions