Post-traumatic growth in dementia
Research type
Research Study
Full title
The experience of post-traumatic growth in people living with dementia: A q-methodology study
IRAS ID
274903
Contact name
Sarah Butchard
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 6 months, 15 days
Research summary
Summary of Research
A newspaper article published in March 2019, quoted a well-respected Professor of dementia research stating it was not possible to "live well" with dementia. Following this, a media and social media debate ensued, throwing up questions around whether it is possible to experience growth and positivity post-diagnosis of dementia. Many dementia activists and people living with dementia were criticised through social media, with people insisting their experiences of "living well" were inaccurate and were giving others "false hope". One of the key criticisms was the concept of “living well” did not acknowledge the traumatic consequences of dementia. Previous research has acknowledged growth is possible following dementia, however this has never been embedded within trauma-focussed literature.The current study aims to investigate what "living well" with dementia looks like, in the context of post-traumatic growth. By examining dementia through the lens of post-traumatic growth, it allows us to acknowledge that dementia is traumatic for some, but that does not mean that positive life events cannot occur as a result of it.
The research will be funded by the University of Liverpool and will be completed in partial fulfilment of one of the researcher's Doctorate in Clinical Psychology qualification. It will initially involve between 6-9 people living with dementia taking part in a semi-structured interview about the positive experiences they have had as a result of being diagnosed with dementia. Themes from this data, along with material gained from non-academic literature (e.g. social media, blog posts etc.), will be combined to form a number of statements. Approximately 20 participants will then be invited to rank these statements from ‘strongly agree’ to ‘strongly disagree’, which will form phase 2 of the research. Participants will be recruited from two NHS sites within the North of England and support groups organised by a national charity.
Summary of Results
The study found that post-traumatic growth is experienced by those living with dementia. Key factors in the experience of post-traumatic growth were: peer support, meaningful activity, and having the opportunity to create a new narrative for themselves and their dementia. The findings captured the stigma of living with dementia and how this impacts someone's ability to 'grow', and also participants belief that the factors involved in the 'growth' has created a feeling of a slowing progression of their disease.REC name
South Central - Oxford C Research Ethics Committee
REC reference
20/SC/0176
Date of REC Opinion
11 May 2020
REC opinion
Favourable Opinion