Psychotherapy experiences of people with dementia and their families
Research type
Research Study
Full title
Exploring the experiences of psychotherapeutic interventions for people with dementia and their families
IRAS ID
326728
Contact name
Alys Griffiths
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Summary of Research
Receiving a dementia diagnosis can lead to changes in how people feel about themselves and their families. One intervention people may be offered is talking therapies. We reviewed existing research and found that while some studies showed benefits for people with dementia, other studies did not. Participants in our latest study reported lots of benefits from talking therapy, including processing and acceptance of the diagnosis, and reduced burden. However, the therapist had not had any dementia training and ‘learned on the job’. We aim to understand what talking therapies are being delivered, who they are delivered to, how people access these, and what (if any) difference they make, to different people.
In Study 1 (which this ethics form relates to) we will interview 30 people with dementia and family members, and in Study 2 we will interview 20 therapists, about their experiences. We will use Framework Analysis to group people’s answers into themes. We will then use these findings in three co-production workshops. We will develop guidance around the ‘key skills’ for therapists working with people with dementia. We will develop a resource for people with dementia and their families about talking therapies, and how to prepare for therapy. We will recruit a Lay Advisory Group of 8 people with dementia and family members, who will work with us across the whole project. We hope to improve support for people affected by dementia when they are considering talking therapies. We also hope to change the way therapists think about working with people with dementia, and influence how therapists are trained.
Summary of Results
This study aimed to explore the experiences of receiving psychotherapeutic interventions, and to identify the barriers and facilitators to accessing therapy for dementia-related issues.
Semi-structured interviews were conducted with people living with dementia and their family members (25 in total). Participants were recruited through NHS Trusts, support groups and professional networks across England.
The voices of people living with dementia are underrepresented in research, in particular those with early onset dementia and rare forms of dementia. To ensure we reached a diverse range of experiences, we invited people with lived experiences of living with dementia and caring for someone with dementia to join the study’s Lay Advisory Group. The group members’ guidance and networks allowed us to reach and include participants with early onset dementia, and rare forms of dementia such as posterior cortical atrophy, frontotemporal dementia and Lewy body dementia.
The study's findings are grouped into four main themes: firstly, aligning expectations, agreeing outcomes, and tailoring of therapy helped people to navigate therapy with dementia. Secondly, therapist knowledge of dementia and creation of a meaningful therapeutic relationship supported engagement from the person with dementia’s perspective and helped manage expectations around outcomes. Thirdly, involvement of family members in therapy supported the improvement in communication between people with dementia and their loved ones and allowed family members to be heard and seen. Finally, barriers and facilitators to accessing therapy were highlighted, including individuals’ readiness for therapy, availability of services and a clear referral pathway, and the impact of dementia on therapy.REC name
London - Central Research Ethics Committee
REC reference
23/LO/0568
Date of REC Opinion
7 Aug 2023
REC opinion
Further Information Favourable Opinion