Dening, Tom
(2022)
Dementia and meaningful activity.
PhD thesis, University of Nottingham.
Abstract
Aim: This thesis presents nine of my published papers based around a common theme of meaningful activity in dementia. The papers and the accompanying text will explore the concept of meaningful activity and whether it is relevant to dementia; the use of meaningful activities for people living with dementia in various settings; and the experiences of people with dementia participating in such activities.
Background: An overview of the published literature regarding four areas of meaningful activity is presented in Chapter 2. These areas, which reflect topics of the included papers, comprise: access to the outdoors; exercise and other group activities; dementia and the arts; and involving people with dementia in mindful design.
Chapter 3 is a critical discussion of the concept of meaningful activity. Meaningful activity is a concept with considerable limitations but remains useful in psychosocial research and practice in dementia.
Methods: The methods of each study are described in each of the nine included papers but the overall methodological approach is summarised in Chapter 4. In general, the approach is exploratory and qualitative, and places a strong emphasis on the voices and experiences of people living with dementia.
Results: As with the methods, the detailed results are included in each study. Chapter 5 provides an overall summary of the results, and combines results from those papers with similar methods. Altogether, over 100 people living with dementia have contributed to the data, either as study participants or in the process of co-design.
The nine papers included appear in Chapter 6, with the abstract as published and a commentary on each one. The full texts of the papers are reproduced in Appendices 2 to 10. The nine papers fall into four broad groups: Paper 1 is about outdoor access; Papers 2 to 5 concern exercise and other group activities; Paper 6 to 8 are studies of arts interventions; and Paper 9 is about design for and with people living with the dementia.
The individual papers are as follows:
Paper 1 is an invited editorial that argues for improved access to outdoor space for all people with dementia, whether resident in their own homes or in care homes. This argument is based upon a human rights perspective.
Paper 2 reports a qualitative study of a community based sports and exercise group for men with young onset dementia. Four main themes were identified, with enjoyment, anticipation and the creation of a ‘dementia-free’ environment, set alongside less positive themes of loss and lack of other appropriate resources.
Paper 3 is a qualitative study of using multisensory boxes as the basis for a storytelling group intervention for care home residents with dementia. The themes generated in our analysis included engagement, curiosity about the contents of the boxes, and the opportunity for self-expression.
Paper 4 describes a qualitative study of a Boccia (modified indoor bowls) group for people with dementia. Four main themes were identified, three of them positive: the family nature of the group, the characteristics of Boccia as a sport, and the sense of equality and freedom from dementia in the group.
Paper 5, another qualitative study, investigated a weekly swimming group for people with dementia. Themes included the impact of dementia, the pleasure of swimming, and how the group created a sense of equality or being ‘all in the same boat’.
Paper 6 reports two case studies of arts interventions for care home residents that were provided as part of a larger arts project. The case studies explored the perceptions of the artists and care home staff and draws attention to the crucial role of care home activity co-ordinators.
Paper 7 includes more than one individual study (focus groups and case study) that were used to create a taxonomy of arts interventions in dementia. The paper presents a striking visual model with twelve descriptive dimensions, thus providing a common language for description and future research.
Paper 8 is a single case study of a person with advanced dementia and her interaction with a visual art installation in an exhibition, using video analysis. The study was an exploration of capturing the in the moment experience of the participant but also as to whether a person with profound disability could engage with visual art.
Paper 9 is a report on a European programme of work around mindful design with and for people with dementia, which provides a background to the work, a description of the models and the approach to co-design that were used, and concludes with a series of design guidelines for different stakeholder groups.
Discussion and Conclusions: The main findings and the contribution of the work as a whole are presented and discussed in the final chapter of the thesis. Collectively, the papers present several positive findings. Participation in groups providing exercise or stimulating activities is enjoyed and valued by those taking part. Under the right circumstances, such activities have powerful effects, such as levelling things up for people with dementia, creating equality between group members, and reducing the sense of ‘us and them’ (that is, people with and without dementia). These effects act to enhance the dignity and confidence of participants and reduce the stigma of dementia.
In addition, establishing meaningful collaboration with people with lived experience of dementia requires attention to several elements: how and why people are approached initially; how the invitation to participate is framed; observing relevant rights, permissions and consent; creating an equitable and inclusive working environment; and accessible communication and participatory activities that include everyone. There is much common ground across the nine papers, which may be described as an overriding theme of rights, empowerment, liberty and activity, all of which aim at enjoyment and social interaction.
The studies included in this thesis have certain strengths, which include the exploratory nature of the studies, the collection of data in naturalistic surroundings, and the emphasis on recording the experiences of the participants with dementia. Possible limitations include the relatively small sample sizes and lack of quantitative data, though it is argued that these are not really required in exploratory studies looking at people’s personal experiences.
As a body of work, the nine papers in this thesis make a significant contribution to research and scholarship in the area of meaningful activity in dementia. Future research will need to explore the mechanisms by which interventions ‘work’ and to continue exploration of studying in the moment experiences. Involvement of people living with dementia is essential in order to design products or activities that they may value, and in order to ascertain that allegedly meaningful activities actually do have personal significance.
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