Periodic Reporting for period 1 - IDoService (Designing the I-Do Service: Facilitating Inclusion and Empowerment of People Living with Dementia through Access to Cultural and Creative Activities)
Reporting period: 2020-10-19 to 2022-10-18
Meaningful activities comprise physical, social and leisure activities that are tailored to a person's needs and preferences. People living with mild to moderate dementia are often missing opportunities to be actively involved in meaningful activities. This can be partly explained by dementia-related symptoms and self-stigmatisation affecting the capacity and confidence of people to continue or try new activities they enjoy. Further, there appears to be a gap in access to relevant activities.
Participation in meaningful activities provides emotional, creative, and intellectual stimulation and thus can benefit the wellbeing of people with dementia and reduce social inclusion. Promoting participation helps to make societies more inclusive and follows WHO recommendations of developing non-pharmacological approaches for people with dementia to help preserve their quality of life in the absence of effective curative medical treatments.
The aim of the I-Do Service project was to develop a user-friendly service for people living with mild to moderate dementia to realise themselves and contribute to society. The service allows people to plan, connect with and participate in tailored opportunities. It has been developed through a co-design approach with people living with dementia, their care partners, as well as staffs from age-related or activity-related organisations. This approach emphasises the need for making the involvement of end-users a priority by conducting research “with” or “by” users rather than “for” or “about” them to increase the legitimacy and validity of the investigation.
Participation in meaningful activities provides emotional, creative, and intellectual stimulation and thus can benefit the wellbeing of people with dementia and reduce social inclusion. Promoting participation helps to make societies more inclusive and follows WHO recommendations of developing non-pharmacological approaches for people with dementia to help preserve their quality of life in the absence of effective curative medical treatments.
The aim of the I-Do Service project was to develop a user-friendly service for people living with mild to moderate dementia to realise themselves and contribute to society. The service allows people to plan, connect with and participate in tailored opportunities. It has been developed through a co-design approach with people living with dementia, their care partners, as well as staffs from age-related or activity-related organisations. This approach emphasises the need for making the involvement of end-users a priority by conducting research “with” or “by” users rather than “for” or “about” them to increase the legitimacy and validity of the investigation.
The project had three stages:
Stage 1 - Review of Services and Needs (“What would the service do?”);
Stage 2 - Co-development of the I-Do Service (“How can the service work?”);
Stage 3 - Evaluation of the I-Do Service (“How is the service perceived by potential users?”)
Interviews and focus groups (Stage 1).
3 focus groups and 17 individual interviews were conducted with 5 people living with mild to moderate dementia, 2 familial and 2 professional care partners as well as 12 people working in the field of dementia and/or community activities. The aim was to learn more about barriers and facilitators to activities and to identify opportunities for improving access to meaningful activities.
The thematic analysis revealed deep insights into wants and wishes, barriers and facilitators, existing opportunities for participation as well as a significant gap in provision for people with early-stage dementia because, at the early stages, a more individualized provision is required.
We presented the results to participants to discuss potential service ideas which emerged from the data. The suggestion of a skills exchange service emerged as the most promising idea. It allows people living with dementia to share their skills and talents but also to access one-to-one support for personal projects. It focuses on reciprocity of support through volunteering to enable people with early-stage dementia to feel useful and to be recognized for their contribution.
Co-development of the I-Do Service (Stage 2)
Six co-design workshops were held in an iterative process to develop the concept of the skill exchange service with stakeholders. The workshops sought input from all perspectives to define what the service should look like, how it could cater for people’s needs and fit within existing dementia care pathways. Two workshops were held with people with dementia and their support persons, four with representatives from service providers.
Based on the workshops, the research team designed the I Can Do Pathway as the new service and outcome of the IDoService project. Supported by a workbook, the Pathway provides the content and guidance for the wellbeing mentor to work with the person with dementia though three distinct sessions: personal interests and strengths; what’s on offer near me; deciding what to do. The booklet includes relaxation and social ice-breaking activities, discussion prompts to explore strengths and interests, input from local volunteer organisations to explore available options, and reflection activities to provide space and time to decide on and plan for activities to pursue. Care has been taken to make it user-friendly, including large font size, colour contrast, visual prompts, plain language. The I Can Do Pathway is organised around the wellbeing mentor role, which can be taken by existing dementia care workers, social prescribers, among others.
Evaluation of the I-Do Service (Stage 3)
The last stage evaluated and refined the I Can Do pathway. The Pathway features two individual sessions, framing one group session. The aim is to get people progressively to identify concrete aspects for their participation in activities:
• Session 1 (one-to-one): Exploring people’s strengths and interests around discussion prompts
• Session 2 (group): Exploring what people want to do and what is on offer with input from local volunteer services
• Session 3 (one-to-one): Deciding what to do and what support people need, including organizing transport, someone to accompany them until they feel comfortable enough, etc.
The I Can Do Pathway prototype was tested with two participants with the support of a local dementia organisation. One of their dementia support workers took the role of wellbeing mentor for the evaluation. The two participants were both women in their mid-sixties with mild dementia who had newly joined this organisation which offers group activities and support to people with dementia. The service prototype was improved based on their comments and interaction with the workbook. Recommendations included: repeating sessions as necessary to provide flexibility; changing individual session(s) into group session(s) according to people’s preferences; running sessions on a weekly basis to retain continuity for the participants; adding separate advice for the wellbeing mentor.
At the end of the trial, both participants gave positive feedback about the sessions, indicating that they enjoyed being part of it and felt more relaxed after it. Observation showed that it helped participants to identify interests and gave them confidence – at least temporarily. The person in charge of the wellbeing mentor role was enthusiastic regarding the I Can Do pathway and described it as easy to use and easy to integrate into staff practice such as the first assessment of new service users.
Stage 1 - Review of Services and Needs (“What would the service do?”);
Stage 2 - Co-development of the I-Do Service (“How can the service work?”);
Stage 3 - Evaluation of the I-Do Service (“How is the service perceived by potential users?”)
Interviews and focus groups (Stage 1).
3 focus groups and 17 individual interviews were conducted with 5 people living with mild to moderate dementia, 2 familial and 2 professional care partners as well as 12 people working in the field of dementia and/or community activities. The aim was to learn more about barriers and facilitators to activities and to identify opportunities for improving access to meaningful activities.
The thematic analysis revealed deep insights into wants and wishes, barriers and facilitators, existing opportunities for participation as well as a significant gap in provision for people with early-stage dementia because, at the early stages, a more individualized provision is required.
We presented the results to participants to discuss potential service ideas which emerged from the data. The suggestion of a skills exchange service emerged as the most promising idea. It allows people living with dementia to share their skills and talents but also to access one-to-one support for personal projects. It focuses on reciprocity of support through volunteering to enable people with early-stage dementia to feel useful and to be recognized for their contribution.
Co-development of the I-Do Service (Stage 2)
Six co-design workshops were held in an iterative process to develop the concept of the skill exchange service with stakeholders. The workshops sought input from all perspectives to define what the service should look like, how it could cater for people’s needs and fit within existing dementia care pathways. Two workshops were held with people with dementia and their support persons, four with representatives from service providers.
Based on the workshops, the research team designed the I Can Do Pathway as the new service and outcome of the IDoService project. Supported by a workbook, the Pathway provides the content and guidance for the wellbeing mentor to work with the person with dementia though three distinct sessions: personal interests and strengths; what’s on offer near me; deciding what to do. The booklet includes relaxation and social ice-breaking activities, discussion prompts to explore strengths and interests, input from local volunteer organisations to explore available options, and reflection activities to provide space and time to decide on and plan for activities to pursue. Care has been taken to make it user-friendly, including large font size, colour contrast, visual prompts, plain language. The I Can Do Pathway is organised around the wellbeing mentor role, which can be taken by existing dementia care workers, social prescribers, among others.
Evaluation of the I-Do Service (Stage 3)
The last stage evaluated and refined the I Can Do pathway. The Pathway features two individual sessions, framing one group session. The aim is to get people progressively to identify concrete aspects for their participation in activities:
• Session 1 (one-to-one): Exploring people’s strengths and interests around discussion prompts
• Session 2 (group): Exploring what people want to do and what is on offer with input from local volunteer services
• Session 3 (one-to-one): Deciding what to do and what support people need, including organizing transport, someone to accompany them until they feel comfortable enough, etc.
The I Can Do Pathway prototype was tested with two participants with the support of a local dementia organisation. One of their dementia support workers took the role of wellbeing mentor for the evaluation. The two participants were both women in their mid-sixties with mild dementia who had newly joined this organisation which offers group activities and support to people with dementia. The service prototype was improved based on their comments and interaction with the workbook. Recommendations included: repeating sessions as necessary to provide flexibility; changing individual session(s) into group session(s) according to people’s preferences; running sessions on a weekly basis to retain continuity for the participants; adding separate advice for the wellbeing mentor.
At the end of the trial, both participants gave positive feedback about the sessions, indicating that they enjoyed being part of it and felt more relaxed after it. Observation showed that it helped participants to identify interests and gave them confidence – at least temporarily. The person in charge of the wellbeing mentor role was enthusiastic regarding the I Can Do pathway and described it as easy to use and easy to integrate into staff practice such as the first assessment of new service users.
There are two main outcomes to this research: Firstly, the research provided deeper insights and understanding into the wants and wishes, barriers and facilitators, existing opportunities for participation as well as a significant gap in provision that people with early-stage dementia face. These insights have informed the development of the I Can Do Pathway. The data can also be used by relevant stakeholders to inform future research and development of social, volunteer and care service provision for people with early-stage dementia. Secondly, the development of the I Can Do Pathway addresses the current gap in service provision for people with early-stage dementia. Through working with local volunteer services, the I Can Do pathway can provide both the individual offer as well as potential support through volunteer programs. The service is easy to incorporate into existing dementia support programs and can be delivered for example by dementia or age-related and volunteer organisations.