Personal accounts of the dementia assessment process (v.1)
Research type
Research Study
Full title
“Who am I?” Personal accounts of the dementia assessment process and the impact of the dementia label
IRAS ID
217958
Contact name
Kirsty Golden
Contact email
Sponsor organisation
University of East London
Clinicaltrials.gov Identifier
Not assigned a number, Registered with UEL
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
The assessment process for dementia is based on medical perspectives around ageing and the physical body. A medicalised disclosure of a dementia diagnosis may lack meaning for those receiving the diagnosis and disregard the person's individual characteristics and feelings. Reflecting this, reports show that many living with dementia are unhappy about the level of empathy and support received upon diagnosis, yet little research on the dementia assessment process exists from the perspective of the person diagnosed. An assumed lack of capacity has led to the views of those living with this diagnosis being marginalised. The lack of support offered around dementia mirrors general narratives in British society around ageing, where those above retirement age are perceived to be a burden on the state. This research therefore aims to elicit accounts of the diagnostic assessment process from those diagnosed with dementia and its impact on self-perception, with the intent of contributing to a system of dementia care and practice that is responsive to the experiences of those diagnosed.
I hope to explore this through carrying out interviews with older adults who have recently been diagnosed with dementia. Participants will be selected from the research register of West London Mental Health Trust. Interviews will be carried out either in the participant's local Cognitive Impairment and Dementia Service, or in their own home. It is the participant's decision as to whether they would like their carer to be present, how long the interview will last, and if they would prefer to attend a series of shorter interviews rather than a single, longer interview. Information sheets will be given to participants and carers.
Interviews that will be interpreted using a detailed narrative analysis, taking into account the relationship between individual experience and cultural context.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
17/LO/0855
Date of REC Opinion
10 Jul 2017
REC opinion
Further Information Favourable Opinion