The experience of young onset dementia in ethnic minorities, V1
Research type
Research Study
Full title
The psychological and emotional experiences of receiving a diagnosis and accessing support for individuals with young onset dementia (YOD) from ethnic minorities
IRAS ID
329445
Contact name
Clarissa Giebel
Contact email
Sponsor organisation
University of Liverpool, LHP SPARK Non-Interventional Sponsorship Sub Committee
Duration of Study in the UK
1 years, 1 months, 29 days
Research summary
Research Summary:
Abstract
Introduction: The impact of Young Onset Dementia (YOD) is complex and compounded by several challenges and adversities for those impacted. In the UK, there is limited qualitative research on the experience of ethnic minority groups living with YOD accessing dementia services. To address this gap in knowledge, this study explored the experiences of receiving a YOD diagnosis and accessing support for people from ethnic minorities.
Method: This study employed a qualitative design using reflexive thematic analysis of semi-structured interviews to gain a rich and interpretive understanding of the participants’ experiences. Interviews were conducted online or face to face, as per participant preference.
Results: Ten people were interviewed; four people living with YOD and six unpaid carers. Four overarching themes were generated. “The pre-diagnostic experience” describes the journey to a YOD diagnosis and the challenges faced during this period. “The post-diagnostic experience” highlights the barriers and facilitators to accessing effective and appropriate care. “Psychosocial and emotional impact” outlines how YOD affects relationships, family dynamics and psychological wellbeing. “Adjusting to a new life” identifies how people navigate life with YOD, through disclosure, faith and continuous adaption.
Discussion: The difficulties experienced by the YOD population are intensified due to healthcare inequalities specific to ethnic minorities. Clinical implications include increased awareness of YOD within diverse communities, through public health campaigns, increased community partnerships and greater inclusivity within research and healthcare settings. Dementia care provision recommendations include specialist training among professionals and increasing culturally sensitive and age-appropriate services for this population.Keywords: Young Onset Dementia, Ethnic Minorities, Dementia Care, Diagnostic Pathways
The aim of the study is to explore the psychological and emotional experiences of receiving a dementia diagnosis and accessing support for people with Young Onset Dementia from an ethnic minority background. The study aims to inform service provision within dementia care and highlight the needs of a minority group within society that remains largely underrepresented in the Young Onset Dementia literature.
Method:
This project will employ a qualitative design using reflexive thematic analysis to gain a rich and descriptive understanding of the participants’ individual experiences. The study will interview up to 20 individuals living with a diagnosis of Young Onset Dementia and/ or their unpaid carers. All participants with YOD will be from ethnic minority backgrounds. The study will be conducted until May 2025.
Procedure:
Participants will be recruited from Young Onset Dementia and wider dementia community support groups e.g. Dementia Engagement and Empowerment Project (DEEP), third sector organisations that support unpaid carers of people living with dementia e.g. Together in Dementia Everyday (TIDE), ethnic minority community groups and memory clinics within NHS Merseycare. Participants will be provided with information sheets and consent will be obtained prior to data collection. Semi-structured interviews will be conducted online or face to face and will last up to 60 minutes. Interviews will be recorded and transcribed, with all participant identifiable information removed.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
24/EM/0063
Date of REC Opinion
20 May 2024
REC opinion
Further Information Favourable Opinion