Counselling People with Dementia: a feasibility study investigating the potential for accessible therapy delivered through a social enterprise model
Lead Research Organisation:
University of Edinburgh
Department Name: Sch of Health in Social Science
Abstract
Project Aim:
We want to test an accessible, community-based, counselling model to help meet the emotional health and well-being needs of people living with dementia.
The Problem
There is a clear gap in counselling for people living with dementia and carers. The people I interviewed spoke about difficult emotional challenges linked to their experience of loss and concerns about the future. Currently, counselling interventions are poorly accessed by people living with dementia and under-researched. Most therapists have no training in this area and typically, those working in dementia services have no counselling skills. Despite support being a Human Right for people living with dementia, many health staff and therapists are not aware of the potential benefits of therapy. It is clear from my interviews that this is not true.
The Vision
I want to work with Zinc, people living with dementia, carers and counsellors to develop an accessible counselling model that can significantly improve the mental health of people with dementia and others. Firstly, we need to test the research methods. and then test the dementia-friendly counselling model.
Success means:
1) People living with dementia, carers and counsellors are involved in the research process ensuring our ideas and methods are ethical, creative and fit for purpose.
2) Using the findings from testing the methods, counselling process, and potential investor feedback, we co-create a tiered counselling training and delivery package for use across different public services, the third sector, community groups and businesses.
3) Sale and delivery of the package enables accessible and tailored counselling opportunities, helping to tackle loneliness and stigma.
4) People living with dementia and carers can choose how and where they access therapeutic support.
We want to test an accessible, community-based, counselling model to help meet the emotional health and well-being needs of people living with dementia.
The Problem
There is a clear gap in counselling for people living with dementia and carers. The people I interviewed spoke about difficult emotional challenges linked to their experience of loss and concerns about the future. Currently, counselling interventions are poorly accessed by people living with dementia and under-researched. Most therapists have no training in this area and typically, those working in dementia services have no counselling skills. Despite support being a Human Right for people living with dementia, many health staff and therapists are not aware of the potential benefits of therapy. It is clear from my interviews that this is not true.
The Vision
I want to work with Zinc, people living with dementia, carers and counsellors to develop an accessible counselling model that can significantly improve the mental health of people with dementia and others. Firstly, we need to test the research methods. and then test the dementia-friendly counselling model.
Success means:
1) People living with dementia, carers and counsellors are involved in the research process ensuring our ideas and methods are ethical, creative and fit for purpose.
2) Using the findings from testing the methods, counselling process, and potential investor feedback, we co-create a tiered counselling training and delivery package for use across different public services, the third sector, community groups and businesses.
3) Sale and delivery of the package enables accessible and tailored counselling opportunities, helping to tackle loneliness and stigma.
4) People living with dementia and carers can choose how and where they access therapeutic support.
Organisations
| Description | The research design and methods were implemented, tested and risk appraised in accord with the study protocol. Research participants found the methods acceptable. The therapists, however, were uncertain about the use of video recording within therapy sessions. As the intervention progressed and they became familiar with the research process the uncertainty lessened. The design was effective in gathering rich, in-depth qualitative data on the therapeutic experience from the perspectives of the different people involved (participants, therapists, Care Home Manager, counselling supervisor). A training programme was developed and participating counsellors attended this prior to working therapeutically with research participants. Recruitment was hindered due to delays with obtaining ethical approval within the University. Further challenges were experienced with recruiting participants to the study. The research was advertised through a range of dementia networks and through direct communication with different gatekeepers. We recruited 75% of our target number of participants. Participants living with middle-stage dementia who took part in a twelve-week therapeutic counselling intervention reported beneficial impacts. These included: an interest in counselling and willingness to engage with the counselling process; a desire for longer interventions; enhanced sense of self. The findings were reinforced by the data from the therapists, supervisor and care home manager interviews. Impacts were linked to counsellor experience and approach. A market research project was also conducted to inform the setting up of a social enterprise for accessible counselling services to help meet the emotional needs of people living with dementia and carers. We discovered a clear unmet need for: o Emotional support for people living with dementia and older people in general. o Counselling services to provide a safe personal space where people with dementia can feel empowered and share their emotional needs o Flexibility and accessibility of counselling provision by way of both location and approach. (should be free to participants/part of wrap around care/social prescribing and offered both face to face and online) o Training in interaction and communication skills for staff and volunteers who work with people living with dementia o A digital training package for counsellors and other workers that is informed and led by people with lived experience Our research evolved from ideas put forward by people with lived experience of dementia. They informed decision-making about the research and how the results should be used going forward. Future research needs to be led in partnership with people living with dementia and their carers. This philosophy underpins our business plan for setting up a social enterprise model to run and test a community counselling service and will ensure that the voices and experiences of people with lived experience continue to be expressed, heard and understood. Based on the evidence from this feasibility study, a total of six funding bids were written and submitted to take the research forward to wider testing and implementation. Despite encouraging feedback and interest from grant holders, it is disappointing that we have not yet secured funding to follow our vision through to the next stage. |
| Exploitation Route | We will continue to seek out opportunities for future funding. A film capturing key findings has been created. This has been shared with our dementia networks and is on the British Association for Counselling and Psychotherapy website. It can be accessed here: Counselling People with Dementia: An UnMet Need (vimeo.com) |
| Sectors | Communities and Social Services/Policy,Education,Healthcare |
| Description | Our findings are being disseminated through a range of different networks including the British Association for Counselling and Psychotherapy which has information on the research and a link to our film on its website. We have received inquiries from counsellors and dementia carers requesting information on the study and its progression to the next stage. |
| First Year Of Impact | 2022 |
| Sector | Healthcare |
| Impact Types | Societal |
| Description | Online market research with a range of stakeholders interested in accessible counselling |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | We are in the process of conducting online market research using individual and group interviews on Zoom to explore and discuss with a range of stakeholders, the opportunities and challenges of social enterprise as a model to deliver and grow a dementia-friendly counselling service. Targeted audiences include: 1. SOCIAL ENTERPRISE COMPANIES 2. DEEP/DEMENTIA GROUPS/NETWORKS 3. COUNSELLORS & PSYCHOTHERAPISTS 4. VOLUNTARY & CHARITABLE SECTOR 5. HEALTH AND SOCIAL CARE/DAY CARE CENTRES/NHS/ PHARMACISTS 6. CARE HOMES 7. ALTRUISTIC BUSINESS 8. PLWD & CARERS/ MSP/POLITICIANS/CIVIL SERVANTS At this point in time, we have carried out interviews with representatives from charitable organisations and business personnel who have set up their own SEC. We have gathered important information to inform the evidence-base on accessible counselling for people living with dementia. |
| Year(s) Of Engagement Activity | 2022 |