A mixed methods investigation into physical activity in carers for those with dementia

With the higher prevalence of an ageing population worldwide, dementia has been recognised as a public health priority. Considering that people with dementia require a high level of support, informal care provision is crucial to delay institutionalisation and prevent low quality of life for individuals living with the condition. Though caregiving can be rewarding, it can be extremely intense and could negatively impact caregivers’ well-being and quality of life. Therefore, the drive to support informal carers of people with dementia has become a national and international priority. Regular physical activity has been linked with improvements in various aspects of physical and psychological functioning, however current figures show that physical activity adherence of informal carers of people with dementia remains low. The aim of this thesis was to explore the complexity of informal caregivers lives in relation to physical activity and well-being in two different countries (the UK and Slovenia) through a mixed methods approach. Adopting a qualitative dominant, sequential exploratory design, this research was conducted in two phases starting with the qualitative and followed by the quantitative data collection phase and analysis. The qualitative resulted in a theoretical underpinning of the physical activity and well-being perceptions of informal carers of people with dementia, which was then further tested through quantitative methods, enabling the generalisation of the qualitative findings.

Study 1 adopted a ‘Life-course’ theoretical perspective and used narrative inquiry. Six participants, 50+ years of age, providing non-paid care to a person with dementia at least 5 hours per day, and living in the UK were interviewed. Interviews were recorded, transcribed verbatim and analysed according to Fraser’s phases 3 to 6 and incorporated Alwin’s 5 life-course principles. The analysis resulted in four major themes which implied that there are 3 age groups of carers (50-60, 60-70 and 70+). The findings suggested that the era carers were born in and consequentially the relationship they had with the care receiver, significantly influenced their perceptions of physical activity and well-being, as well as actions they made while providing care. Study 2 explored if these findings could be generalised to a wider population in both UK and Slovenia. 166 informal caregivers 50+ years of age, providing non-paid care to a person with dementia at least 5 hours per day, and living in the UK and Slovenia took part in a standardised questionnaire aiming to obtain carers’ quality of life, relationship style with the care recipient and physical activity perceptions. Study 2 confirmed the findings found in Study 1 and revealed further significant differences between the age groups of caregivers and their role as carers, information and advice availability, relationship style, current physical activity participation, beliefs and knowledge of exercise, and actions taken to stay healthy. Study 3 explored whether there are differences between the age groups cross-nationally in Slovenia and the UK. No interaction effects were found between the age groups and nationality, however the analysis revealed significant main effects between the age groups/nationality and role as a carer, information/advice availability, and current physical activity participation. Variables such as relationship style, beliefs and knowledge about exercise showed significant main effects for age groups and none for nationality. This suggests that nationality and culture might be a significant factor in how informal carers perceive their role, seek advice and information and how frequently are they physically active, as well as what kind of activities they prefer. In addition, the study also confirmed that the three distinct groups of informal carers 50-60, 60-70 and 70+ years of age are present cross-nationally.

Overall, this PhD thesis showed that informal caregivers of people with dementia are not a homogenous group as frequently portrayed by researchers, policy makers and health care providers but differ based on the era they were born in, their relationship with the care recipient, their perceptions and knowledge of exercise and the values and beliefs they grew up with. Increasing physical activity uptake among this population does not depend merely on the number of the physical activity programmes available to this population but might be differentiated and tailored more specifically to each group ensuring that other barriers experienced by specific groups are addressed as well.