How people with young onset dementia share their diagnosis with others
Research type
Research Study
Full title
How people with young onset dementia share their diagnosis with others
IRAS ID
167597
Contact name
Katherine Siu
Contact email
Sponsor organisation
Salomons Centre of Applied Psychology
Duration of Study in the UK
1 years, 3 months, 0 days
Research summary
The study aims to understand how people with young onset dementia (diagnosis before 65 years old) tell others about their diagnosis and how they manage changes in relationships that may occur after the diagnosis is shared with others.
As young onset dementia occurs at an earlier life stage, the experiences that people have may be different to those who receive the diagnosis later in life- including the experience of receiving a diagnosis, and sharing it. It is hoped that the study will contribute to raising awareness of the uniqueness of the condition and provide a voice for those who are living with the condition, or who live with those who have it.
The main research questions are
a. What do people take into consideration when deciding on sharing their diagnosis with others?
b. Does their experience of how the diagnosis was communicated to them, influence their decisions on sharing, and how they share?
c. Does the information shared differ depending on the relationship the person with dementia has with the "other person”?This study involves people with a diagnosis of young onset dementia- dementia diagnosed before the age of 65. As such, anyone who has received such a diagnosis within the last 3 years, and who is able to provide their own consent to participate in this study will be eligible. Participants will undertake a single semi-structured interview around their experiences of receiving their diagnosis, whether it was then shared with others, and how it was shared.
The study will be conducted within NHS and community settings. Participant recruitment will start as soon as ethical approval is received.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
15/LO/0481
Date of REC Opinion
1 May 2015
REC opinion
Further Information Favourable Opinion