Exploring the lived experience of dementia
Research type
Research Study
Full title
Exploring the lived experience of the individual of black ethnicity living with dementia: A phenomenological study
IRAS ID
122167
Contact name
Tiritega Perfect Mawaka
Contact email
Sponsor organisation
London South Bank University
Research summary
Following the launch of ‘Living well with dementia: A National Dementia Strategy’ (Department of Health (DH) 2009), there is an increasing focus on improving services to meet the needs of people with dementia (DH 2009). The aim of this investigation is to understand the lived experience of the individual of black ethnic background living with dementia in the United Kingdom (UK). Previously published studies have highlighted the increased risk of dementia in individuals of black and other ethnic minority groups (Adelman et al. 2009, Adelman 2010). However little is known about the actual impact of the disease on their daily lives (Lawrence et al. 2010) and how dementia is understood and experienced, among individuals of black ethnicity(Fontaine et al. 2007). It was against this backdrop that this project was developed; to focus on improving dementia care delivered to individuals living with dementia from black ethnic minority background living within the Outer North East London sector by exploring their lived experience
The following research questions were developed:
•What is the lived experience of the individual of black ethnicity living with dementia?
•How does the individual of black ethnicity living with dementia describe their experience and everyday lives?
•How do people of black ethnicity living with dementia construct meaning in their different perspectives on quality of life?The investigation seeks an understanding of what constitutes ‘living with dementia as a black person’. The research design is qualitative, involving semi-structured interviews. The study site is a National Health Service Trust. The sampling strategy aims to incorporate black people living with dementia who would be willing to talk about their experiences of dementia. It is planned that a series of 3 data collection interviews will be conducted, with each participant, to achieve the depth and detail producing a sense of completeness of the phenomena being studied. Interpretative phenomenological analysis (IPA) will be used to gain an understanding of how the participants had experienced and made meaning of their lives (Smith and Osborn, 2003).
This study focuses on the accounts of people living with dementia of black ethnicity background; their experiences as lived by them and what these experiences mean. This new understanding, will inform commissioners of services in planning dementia pathways; providers of services who can work towards improving clinical outcomes for this specific group. This should naturally impact on patient experience, quality of life and satisfaction. Recommendations for improvement will be made, leading to the development of effective patient pathways for individuals of black ethnicity living with dementia.
REC name
London - Queen Square Research Ethics Committee
REC reference
13/LO/0994
Date of REC Opinion
30 Jul 2013
REC opinion
Favourable Opinion