The Continuing Self: dementia and the spiritual journey. V1
Research type
Research Study
Full title
The Continuing Self: biography, narrative, personhood and the spiritual journey for the person with dementia. A pilot project.
IRAS ID
173228
Contact name
Margaret Louise Holloway
Contact email
Sponsor organisation
University of Hull
Duration of Study in the UK
0 years, 4 months, days
Research summary
This is a pilot project designed to explore the use and effectiveness of biographical and narrative approaches to understand the spiritual needs and resources of people with dementia throughout the dementia journey, and to compare this data with the understandings employed by health and social care workers to guide their practice. The literature suggests that care workers need tools to help them uncover the ‘essential self’ of a person who may lack the ability to communicate their deeper needs. Understanding the spirituality of the person with dementia is essential if we are to deliver truly person-centred care which addresses the whole person.
Using prompts such as photographs and treasured objects to enable the person with dementia to tell their story, we will undertake biographical interviews with 3 groups, representing early, mid and late stages of dementia, and a health or social care worker in close contact with each person. For each person with dementia, 2 paired interviews will be undertaken:
a. A conversational interview with the person with dementia and a family member where appropriate. The purpose is to explore sources of meaning including in relation to life events and changing circumstances over time.
b. A semi-structured interview with their key health or social care professional or paid carer, exploring her/his understandings of the concepts of personhood and spirituality and how they apply in their work, and the extent to which and how they seek to address spiritual needs with this individual person with dementia.
Building on categories developed by other researchers into sources of meaning and personal narratives employed by people with dementia, we will analyse and compare these stories and reflections to aid understanding of how the spiritual journey relates to the dementia journey and to refine models of holistic assessment for subsequent application in a larger study.REC name
Social Care REC
REC reference
15/IEC08/0038
Date of REC Opinion
28 Jul 2015
REC opinion
Further Information Favourable Opinion