Carer Experience in Young Onset Dementia
Research type
Research Study
Full title
A qualitative study to understand the carer experience of Young Onset Dementia within the South West London and St George’s NHS Trust.
IRAS ID
285874
Contact name
Robert Lawrence
Contact email
Sponsor organisation
South West London & St George’s Mental Health NHS Trust
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
The aim of this study is to understand the Carer experience of Young Onset Dementia (individuals diagnosed with dementia under the age of 65 years), specifically within the South West London and St George’s Mental Health NHS Trust (SWL&StG Trust). This topic is of particular interest as the Trust does not currently provide services specific to YOD. These individuals are cared for within Older Adult Teams (individuals over the age of 65 years).
The current research suggests that age appropriate services are of particular importance to individuals with YOD. This extends to their carers who face different challenges to their older counterparts such as juggling childcare, financial commitments e.g. mortgage, and employment. There is a growing awareness of service user involvement in service design. Interviewing carers about the experiences will aid in the development of a service designed for younger people.
There are five boroughs within the SWL&StG Trust. We will invite individuals, over the age of 18 years, who are caring for an individual with YOD (or have died in the past 3 years) to participate in an interview to explore their experiences. Carers will need to be fluent in communicating in English and have access to equipment which permits teleconferencing or be willing to visit a Trust site to conduct the interview in a social distanced way.
Interviews will be approximately 90 minutes in length and will explore three themes: 1) Diagnosis, 2) Age Appropriate Services and 3) The Experience of Caring for someone with an early dementia diagnosis. The interviews are semi-structured so they will be led primarily by the Carer. This is so carers discuss topics which are important to them. In light of the current COVID-19 pandemic, services across sectors have been reduced. The interviews will also explore the effect this has had on the carer experience.
REC name
Wales REC 6
REC reference
20/WA/0254
Date of REC Opinion
18 Sep 2020
REC opinion
Favourable Opinion