Systemic therapy for people with dementia (STORY)
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Participant type
Overview
The STORY study is hoping to learn more about what family therapy is like when someone in the family has dementia. At the end of the study, the research team want to produce recommendations for setting up similar services.
Summary
What is the study about?
When someone in your family has trouble with their memory (sometimes called dementia), this can lead to difficulties in the family. This might cause challenges in how people talk to each other, or support each other. When this happens, family therapy is one service that can be offered to you.
What are you trying to find out?
We don’t know much about what attending this service is like for people, when someone in the family has dementia. We are hoping to learn more about what this is like so we can make recommendations for people setting up similar services (such as therapists and service providers), and help people decide if it is the right service for them.
Who is it for?
- Person with memory issues/dementia and their family who are undergoing family therapy
- Person with memory issues/dementia who declined family therapy
- Family therapists for people with dementia at a participating NHS trust
- Reflecting team (therapists)
What does taking part involve?
Undergoing family therapy: The researcher will join you and your family in some of your therapy sessions (approximately 4 sessions) to see what happens and how people interact with you. With your permission, the sessions will be video recorded, and the researcher will make written notes about the session.
The researcher will not speak during the session but may ask you questions before or after the session . The researchers will have informal conversations with you before or after the session, to ask about your thoughts and feelings about the session. These informal conversations may get you to discuss specific situations that had occurred in the session, for example how you felt the session went and how the therapist interacted with you.
We will also ask you if you are happy to take part in two interviews to share your experiences. One interview will be after one of your first therapy sessions, and one will be after one of your last sessions. Your family will also be invited to take part in two interviews. You can complete the interviews together or separately.
Declined family therapy: We will invite you to take part in an interview with your family/ or on your own to talk about your views on family therapy and your reason for deciding not to attend the therapy. If you want to complete the interview on your own but need support from someone, it does not need to be someone also taking part in the study.
The interview will last between 45-60 minutes and can be done in person or via a video call. The interviews will be audio recorded. Once the audio recordings have been transcribed, they will be destroyed. If you would like, a summary of the interview will be sent to you to review to ensure that you are happy with it.
Therapists: Throughout the study, we will ask you to keep a guided reflective diary documenting your reflections on each observed appointment. The reflective diary can be spoken or written depending on preference and should be completed within the first 24 hours after the appointment.
After the planned observations, we may have informal conversations with you. At the end of the observation period with each family, you will be invited to a semi-structured interview to share your experience. The interviews will last approximately 45 minutes and will be audio-recorded.
We will ask you if you would like to participate in two workshops to help us develop guidelines to support family therapy services for people with dementia.
Reflecting team therapists: The researchers will observe several family therapy appointments per participating individual with dementia (up to 4 hours). Your involvement in the study will depend on your involvement in the selected observation sessions and whether the person and family members consent for you to observe the session.
After the planned observations, we may have informal conversations with you. We may also join the reflecting team’s debrief session and make notes about the discussion.
We will ask you if you would like to participate in two workshops to help us develop guidelines to support family therapy services for people with dementia.
Why is it important?
The information we get will help develop guidance to make family therapy as helpful as possible to families affected by dementia.
How can I find out more?
You can find out more information about taking part in this study by downloading the key documents at the top of this page.
However, if you have questions for the research team, click the button below to email the research team:
Collaborators
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