Factors affecting assessment, uptake and adherence to physical activities in people with dementia: an inclusive approach

Dementia is a growing problem worldwide. There is no available long term effective treatment and many cases of dementia remain undiagnosed. Within this context, appropriate, accurate and reliable cognitive assessments are important in informing the process of diagnosing dementia, and monitoring the effects of subsequent interventions. Previous research has often researched the journey of dementia in stages. This thesis, however, was guided by inclusivity, a concept applied to encapsulate the need for the inclusion of all individuals across the whole journey of dementia. Assessments utilised during diagnostics should be cross-culturally applicable, easy and quick to administer, inexpensive, non-invasive and able to identify changes in cognitive functioning. Little research has explored cognitive assessments for people with intellectual disabilities, a growing group at high risk for experiencing dementia at a younger age. Moreover, physical activity could be a key intervention for people with dementia, with the potential to slow cognitive symptoms and promote independence. However, meta-analyses show mixed outcomes for the success of physical activity interventions. This may partly be due to low levels of engagement and adherence. Therefore, both cognitive assessments and physical activity, including factors influencing adherence, are important aspects of the journey of dementia, which require more research with an inclusive approach.

This thesis was divided into 2 parts to reflect the underpinning paradigms that informed the investigations in each part. Hence, a mixed methods approach is used to investigate more inclusive practices in dementia diagnostics, intervention assessment and delivery of physical activity. Applied quantitative methods were used in part 1 to assess the accuracy of a battery of cognitive assessments (Mini Mental State Examination or MMSE, Hopkins Verbal Learning Test or HVLT, Verbal Fluency or VF, and the novel: Cognitive Computerized Test Battery for Individuals with Intellectual Disabilities or CCIID) in informing dementia diagnostics for individuals with (n=30) and without (n=25) intellectual disabilities (chapters 4 and 5). The same cognitive tests were then utilised to assess the acute effects of a physical activity intervention compared to a psychosocial control activity using a cross-over design involving people with dementia (chapter 6).

The second part of the thesis informed by critical realism, but continuing the inclusive approach began by exploring the barriers and facilitators to physical activity for people with dementia (chapter 7). Novel mobile methods of interviewing were applied to explore the perspectives of people with dementia towards physical activity (chapter 8). These walking interviews were also discussed in comparison to more traditional seated interviews for their application in understanding the perspectives of people with demenita. This was only the second study to conduct walking interviews with people who have dementia, but the first to discuss physical activity within this context. Chapter 9 then sought to investigate the perspectives of professionals who work to provide physical activity for and with people who have dementia. This study investigated how professionals navigate barriers and facilitate adherence to physical activity for people with dementia within the community, and hence offers a discussion of practical solutions to barriers identified in the literature and from interviews with people with dementia.

The findings from the initial investigations in this thesis showed that participants with and without a pre-existing cognitive impairment who had dementia scored significantly lower on all included cognitive assessments (MMSE, VF, HVLT, Series and Jigsaw subtests and total CCIID) than their age-matched counterparts. Receiver Operating Characteristic analysis revealed that all included assessments significantly classified those who had dementia, with a high accuracy of above 0.80 for all assessments with all populations. Assessments were well tolerated by all participants, including those with an intellectual disability.

Acute cognitive benefits of physical activity were demonstrated over and above a psychosocial control using an order balanced cross-over design. An increase in cognitive scores was visible on the MMSE, VF, HVLT, Series and Jigsaw subtests and total CCIID after engaging in a short bout of resistance band physical activity versus a bingo (psychosocial) activity. This study confirms earlier research with resistance band physical activities in promoting memory in older people with and without dementia, but adds another new sensitive planning and logical reasoning test (CCIID) which could be important for early stages- or different types- of dementia. This study shows that the same well tolerated cognitive tests can be used for the initial screening and subsequent assessment of interventions.

Systematic literature review (chapter 7) revealed that people with dementia have problems adhering to regular physical activity. The following thematic analysis of walking interview data with people who have dementia in chapter 8 revealed four key themes as to why this might be. The themes were: i) competition, ii) physical activity across the lifespan, iii) injury and decline; and iv) barriers to physical activity. The themes indicated that competitive aspects of physical activities can be encouraging or discouraging depending upon the individual participating, by giving the activity purpose, whether this is through competition or an activity goal, more people with dementia are interested in repeatedly engaging. Furthermore, injuries and decline in physical functioning frequently impacted participants’ ability to enjoy physical activity. This often led to adapted physical activities rather than traditional sports that participants described enjoying earlier on in their lives. Each participant also discussed different logistical barriers outside of physical capabilities that limited their consistent participation in physical activity.

The final study of the thesis, in chapter 9, analysed interviews with professionals, and offered methods of navigating the barriers highlighted by people with dementia; and discussed the potential for professional engagement with dementia care to increase physical activity participation and inclusively deliver interventions. This often meant providing a personalised activity that includes social interaction for the participants to further engage with, and benefit from. The professionals discussed the structure of the context in which physical activity is provided for people with dementia.

Overall, this thesis argues for inclusive practices for people with dementia regardless of pre-existing cognitive ability, from diagnosis through to strategies for sustaining interventions that could offer substantial benefits. The empirical chapters are potentially limited by the small numbers of participants per study (n=9-25). However, this also allowed for in-depth analyses. The findings demonstrate the need for increased communication between healthcare professionals and people with dementia to offer more inclusive practices that can give greater insight into our understanding of dementia, as well as offer better care throughout the journey of dementia for all individuals.