Rationale, Aims & Methods, Evaluation Approach, Impact & Outputs, PPI
Approximately 95% of people with dementia in the UK are aged 65 years and over; currently, the majority of people (63.5%) with dementia in the UK live in the community and the remainder in long term care facilities (Prince et al, 2014). Exercise interventions carried out with people living with dementia in care settings suggest there is potential for exercise to improve physical function (Rolland et al, 2007), mobility (Pitkala et al, 2013), slow down decline in performance of activities of daily living (ADLs) (Rolland et al, 2013; Forster et al, 2010, Fortescue-Webb et al, 2019). Interventions carried out with nursing home residents (including people with mild cognitive impairment) reported improvements in gait speed and muscle strengthening of the lower body (Frandin et al, 2009, Van der Wardt et al, 2017). Such improvements might directly enable the person to be more mobile and carry out day-to-day activities including self-care independently or with little assistance. Exercise-based therapy may improve the health status for people with Mild Cognitive Impairment (MCI) or dementia but cannot work without continuous engagement, which has proven difficult to achieve (Van der Wardt et al, 2017, C3 Collaborating for health, 2012, Fortescue -Webb et al, 2019).
People living with dementia, as well as their families and carers find, in general, engagement with indoor/outdoor exercise challenging. Van der Wardt et al (2017) aimed to evaluate strategies to support continuous engagement with exercise among people with MCI or Dementia. While some strategies & theories on continuous engagement with exercise for older people (including people with dementia) exist (Van der Wardt et al, 2017), these include individual tailoring, worksheets and exercise booklets, goal setting, phone calls or reminders, newsletters, support to overcome exercise barriers, group setting, music (Van der Wardt et al, 2017). Not many of those strategies are, however, pertinent for older people with dementia living in care homes. Group exercise indoor/outdoor strategies for care home residents living with dementia include e.g. tailored sessions, individually-adjusted and supported physical activity, therapist/facilitator who plays a crucial role in terms of residents with dementia engaging continuously in group exercise (Vseteckova et al, 2018a). Again, strategies or theories have not yet been systematically developed/described to underpin the aspect of continuous engagement with walking group type of exercise for older care home residents living with dementia.
To summarise: evidence suggests that regular exercise is crucial to maintaining physical and mental health. This is particularly important for people living with dementia (Andriesen et al, 2014; C3, 2011; Coleman et al, 2011, Fortescue -Webb et al, 2019).Although we know that exercise interventions for people living with dementia have the potential to support their wellbeing, little is known about what supports continuous engagement with such interventions.
What we propose
We propose a mixed methods evaluation (as we plan to collect both qualitative and quantitative data) of Walking Programme set out currently as 5 Ways Cafes events that include walking outing organised for older people living with dementia in Milton Keynes to further understand the factors that may hinder or facilitate the uptake of and continuous engagement with the outdoor walking groups’ activities.
1. What is the range of participation achieved and the reasons this may differ according to barriers and facilitators within the control of the person and The Park’s Trust? To understand what are the challenges, limitations and opportunities in the implementation of outdoor Walking Programme for residents with dementia?
2. What process measures and outcomes are important to participants and what is the feasibility of collecting these data routinely?
3. Can we use the outcomes of the research to co-design, with invited stakeholders, a framework for implementation and evaluation and logic model for outdoor Walking Programme for people with dementia?
1. To explore barriers and facilitators to continuous engagement with the 5 Ways Cafes events that include walking outing via interviews with older people with dementia and their carers taking part in these events.
2. To evaluate the social and mental well-being in relation to the outdoor walking group activity.
3. Where possible to assess number of steps and average distances covered during these walks.
4. To understand challenges and limitations of setting up a regular outdoor walking group in the context of 5 Ways Cafes events that include walking outing organised for older people living with dementia in Milton Keynes.
The overall aim of this research is to improve the health of older people with dementia and their carers, to identify and explore the barriers and facilitators to continuous engagement with the Parks Trust walking groups to support the Parks Trust and their agenda for Commissioning, Learning and Participation. We also aim to make evidence-based recommendations for timely interventions.
We will conduct a series of semi-structured interviews and non-participant observations of the 5 Ways Cafes events
- Semi Structured Interviews to be carried out with:
- Carers (N=4-6); Topics to include: e.g. how easy or difficult are these walks to attend, did they notice any changes in the person they care for etc.
- Organisers of these walks, managers, CH staff (one person from the side of the organisers, one care home manager and one of the care home staff N=3); Topics to include: interview about procedural issues and perspective from the organisers about their intentions, ongoing intentions, and challenges, how long did it take to set it up etc. how does it affect the care home routines etc., perspectives for service delivery perspective, organisation of walks the intended aims at the beginning and then every year to capture how the intended aim does or does not change;
- Residents with dementia (N=4-6); Topics to include: show them photos from some events and ask how they enjoyed it? Why are they talking part and if they think of not going to the event why is that – explore further barriers and facilitators to adherence.
At each walk that we attend we would conduct observations and take notes on engagement of the residents with the outdoors. The proposed research links with our systematic review that is currently in progress on barriers and facilitators to adherence to physical activity for people living with dementia in residential care.
Expected Impact & Outputs
Learning and Participation Research can be a major vehicle for, and in support of, change, improvement and also achievement of objectives. Our approach focuses less on research evaluation and more on concentrating energy and resources to supporting the development, operations and implementation targets of the programme.
- This research will produce an evidence base for the effectiveness of walking groups on several behavioural, emotional and physical outcomes in people with dementia. Understanding the barriers and facilitators to adherence from the perspective of the residents, family members and staff organising the Walking Programme. This research will add to the current understanding about the effectiveness of outdoor walking groups in improving the physical, social and mental wellbeing of people living with dementia.
- This research will create a framework of knowledge around the factors that may hinder or facilitate the uptake of and continuous engagement with the walking groups’ activities as well as their impact on residents’ health and wellbeing related outcomes. A possible plan for future evaluations of the Walking Programme by The Parks Trust - a model showing how Walking Programme works, and for how engagement can be maximised, suggested measurement tools, e.g. why use pedometers, questionnaires and how, when etc, a database of simple questionnaires to characterise those who attend (cognitive impairment) and their experience (wellbeing measures) to be used for this population and analyses suitable for the type of data collected, a set of participant questionnaires and the experience form the researcher’s perspective etc.
- This research will produce a report/guidance that sets out the benefits, challenges and limitations of regular outdoor walking groups in the context of 5 Ways Cafes organised for people living with dementia in Milton Keynes in collaboration with The Parks Trust MK and The Open University.
- Another possible output will come from integration of findings and co-production of outputs such as guidance for setting up and running a Walking Programme, and a framework for commissioners and care home corporate providers on the business case for Walking Programme co-designed with other stakeholders. Methods of engaging the wider community by e.g. co-producing short films to document and promote the research study and its outcomes. Co-produce and promote this research as a case study in OU modules for health care practitioners and any other modules / courses relevant to research, public health, care of older people, community action, social prescribing, volunteer service provision etc.
In this study we aim to conduct a formative evaluation with some elements of process evaluation. Formative evaluation refers to the development of a new programme (Walking Programme), to assess whether the proposed programme elements are likely to be needed and understood and accepted by the population they are designed for and to assess the extent to which a future Outcome Evaluation and/or Impact Evaluation are possible. Formative type of evaluation is usually conducted when a new programme is being developed. We will also explore the barriers and facilitators to engagement with this type of activity for older care home residents living with dementia, their families and care home staff, and understand the strategies of continuous engagement with this type of exercise.
Process evaluation refers to how well the programme is working, the extent to which this programme is being implemented and designed and could be in the future adopted by other care homes interested in setting up and running a Walking Programme for their older residents living with dementia. We will co-design with stakeholders, involved in this study, a set of guidance and recommendations and propose a logic model.
The research team started collecting preliminary data from August 2019 with a view to support the full study outlined in this application. We plan to collect data from observations and conduct preliminary interviews with residents, family members/carers and staff/organisers (Ethics approval was obtained 19/02/2019 HREC/3049/Vseteckova).
Public & Patient Involvement
Patients and the public (PP) (in-care people with dementia and their carers) were already involved in the first stages of setting up the Walking Programme and in the preparatory workshops organised by The Parks Trust. These were co-facilitated by Dementia Adventure (a charity who work to get people with dementia outdoors, engaged in activities) as preparatory work in setting up and piloting these events, with involvement with The Open University. The Parks Trust engaged with a broader cohort of volunteers and we will place a particular emphasis on engaging people and organisations that reflect the target audiences. By employing a Community Engagement and Activity Coordinator in the Development Phase and by working with Diversity Ambassadors the Parks Trust has been strengthening these links from an early stage (2016/2017).
The plan is to deliver a range of opportunities for older residents, especially those with dementia and for people with disabilities through the provision of short walks and well-surfaced footpaths at level grades. The Parks Trust have also worked with local charities and services supporting people suffering from mental health problems to identify how they can make the Manor Park better place for those with these problems to come and participate in activities that promote their well-being. Other focus is also on providing enhanced facilities for school children and for families. Making sure park is safe to be used by all generations and all communities.
The Parks Trust has also facilitated the establishment of the Friends of Great Linford Manor Park organisation during the Development Phase and continues to support this organisation throughout the project. The ‘Friends’ play a major role in the project e.g. in an expanded range of volunteering offers and is one place where The Parks Trust sources the volunteers from. Other sources include Dementia Adventure organisations, local CCGs etc.
This research proposal is the result of previous meetings and preparatory work undertaken by The Parks Trust and Dementia Adventure (with a significant PPI) in setting up the Walking Programme. The organisers for the Walking Programme from both organisations have agreed the plan for this study. Prior to their agreement the proposal was read by a panel of readers from various areas some of them being members of public and/or patients who agreed to this research study.