A brief psychosocial therapy intervention for dementia carers
| ISRCTN | ISRCTN45641545 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN45641545 |
| Integrated Research Application System (IRAS) | 368166 |
| Sponsor | University of Exeter |
| Funder | Galen and Hilary Weston Foundation |
- Submission date
- 02/03/2026
- Registration date
- 18/03/2026
- Last edited
- 13/03/2026
- Recruitment status
- Not yet recruiting
- Overall study status
- Ongoing
- Condition category
- Mental and Behavioural Disorders
Plain English summary of protocol
Background and study aims
The new digital programme with coaching support named Kindred has been developed to build upon the success of our programme for care home staff, combining live online coaching support, digital resources, and moderated peer support. The programme will be available for carers supporting someone living with dementia who is experiencing neuropsychiatric symptoms. These symptoms can include low mood, anxiety, reduced interest, restlessness, agitation, aggression, seeing or hearing things others do not, or becoming suspicious. These symptoms can be very distressing for individuals with dementia and very stressful for carers. This programme is offered free of charge and will be delivered via our online programme, supported by coaches using a virtual platform.
Kindred builds on an extensive research programme called iWHELD (Improving Wellbeing and Health for People Living with Dementia) that has demonstrated in clinical trials improved confidence in professional carers and improved quality of life and reduced agitation and aggression in people living with dementia in care settings, adapted here for family carers supporting someone living with dementia in the community.
The aim of this study is to find out whether access to the Kindred platform and group coaching helps family carers feel less distressed, more confident and improve their mood when supporting someone with dementia who experiences distressing symptoms, compared with usual support. We will also explore whether carers report any changes in the person's symptoms over the 4-week period. This is really important to find out to ensure that we are providing the best coaching and digital support to carers; if the programme is effective then we will be able to make it available to a lot more carers nationally.
Who can participate?
We are inviting any carers aged 18 years and over who are supporting a person with dementia who is experiencing one or more neuropsychiatric symptoms through our project partners: Alzheimer’s Society, Join Dementia Research and the University of Exeter PROTECT programme.
What does the study involve?
All participants will be asked to complete an assessment at the start of the study and after 4 weeks. This will include a 20-minute virtual assessment with a member of the research team about the neuropsychiatric symptoms experienced by the person for whom you are caring. In addition, we will ask you to self-complete short questionnaires about your wellbeing, caregiving burden, and confidence. This will take about 15 minutes.
Whether you receive access to the Kindred platform and the virtual coaching or not for the first 4 weeks will be decided randomly so that half of participants receive the training and half do not. This will not be done until all of the initial information is collected about the people who are taking part in the study. This is to reduce bias so the researcher collecting follow-up information is not influenced by knowing your group. All participants will gain access to the Kindred platform and virtual coaching after this 4-week period.
Over the 4-week study period participants will be invited to use the digital platform, check out the various evidence-based tools, videos, and other bitesize resources; and join a weekly coaching group with a small number of other carers. Each coaching session will be 60 minutes in duration. You can use the online resources as much or as little as you wish.
We would also like to inform your GP that you are taking part in the study.
What are the possible benefits and risks of participating?
There are limited disadvantages to taking part and the study is low risk. Some people may find it upsetting to talk about difficult experiences. You can skip any questions you do not want to answer and you can take a break or stop at any time. Potential disadvantages may be the time commitment required to participate in the study. All information will be kept strictly confidential and will only be accessed by members of the research team.
Possible benefits include that accessing the coaching and the digital support programme, including the peer support element, may help you feel more confident and reduce how stressed you feel. You may also develop new approaches to help support the person that you are caring for. The research programme will also be valuable in helping us understand whether we should make this programme more widely available to carers in the future.
Where is the study run from?
University of Exeter Medical School (UK)
When is the study starting and how long is it expected to run for?
May 2026 to December 2026
Who is funding the study?
Hilary and Galen Weston Foundation (UK)
Who is the main contact?
Dr Joanne McDermid, J.McDermid@exeter.ac.uk
Contact information
Public, Scientific, Principal investigator
Medical School
St Luke's Campus, Magdalen Road
Exeter
EX1 2LU
United Kingdom
 ORCID ID |
0000-0003-0022-5632 |
|---|---|
| Phone | +44 (0)1392722911 |
| c.ballard@exeter.ac.uk |
Study information
| Primary study design | Interventional | |
|---|---|---|
| Allocation | Randomized controlled trial | |
| Masking | Open (masking not used) | |
| Control | Active | |
| Assignment | Parallel | |
| Purpose | Health services research, Supportive care | |
| Scientific title | Kindred: building a human-led, digital platform for dementia family carers | |
| Study objectives | ||
| Ethics approval(s) |
Not yet submitted | |
| Health condition(s) or problem(s) studied | Carers supporting people with dementia who are experiencing neuropsychiatric symptoms (NPS) such as aggression, irritability, depression, anxiety and suspiciousness | |
| Intervention | Participants will be randomised to intervention and treatment as usual groups using a minimisation algorithm, stratifying by (i) age (<65 or ≥65 years), (ii) gender, and (iii) NPI score (<12 or ≥12). The study statistician will undertake randomization, manage the data and ensure a surrounding quality assurance framework. Participants will be randomly allocated to one of two groups: 1. Intervention group: receives access to the Kindred platform, BPST guidance, and group coaching 2. Control group: continues with treatment as usual (their normal care and support) The study lasts 4 weeks for each participant. The Brief Psychosocial Intervention combines a specific programme to plan a personalized brief enjoyable activities programme for 10-30 minutes a day between the carer and the person with dementia with virtual group coaching support. Carers will also have access to a digital platform (KINDRED) that provides tips, information and support for carers relating to neuropsychiatric symptoms. | |
| Intervention type | Behavioural | |
| Primary outcome measure(s) |
| |
| Key secondary outcome measure(s) |
| |
| Completion date | 31/12/2026 |
Eligibility
| Participant type(s) | |
|---|---|
| Age group | Mixed |
| Lower age limit | 18 Years |
| Upper age limit | 100 Years |
| Sex | All |
| Target sample size at registration | 220 |
| Key inclusion criteria | Currently caring for someone with a diagnosis of dementia (clinical diagnosis by any medical practitioner), who is experiencing at least mild neuropsychiatric symptoms in one or more domains (a score of at least 1 on one of the 12 domains of the neuropsychiatric inventory) |
| Key exclusion criteria | Severe neuropsychiatric symptoms requiring prompt clinical evaluation which are associated with potential risk or severe distress and may require pharmacological treatment |
| Date of first enrolment | 01/05/2026 |
| Date of final enrolment | 31/07/2026 |
Locations
Countries of recruitment
- United Kingdom
- England
- Wales
Study participating centre
Exeter
EX1 2LU
England
Results and Publications
| Individual participant data (IPD) Intention to share | No |
|---|---|
| IPD sharing plan summary | Data sharing statement to be made available at a later date |
| IPD sharing plan |
Editorial Notes
13/03/2026: Study's existence by the Galen and Hilary Weston Foundation.
