"Even when I’m telling it – it sounds so unbelievably bizarre!" A realist evaluation of self-management behaviours in dementia family caregivers with long-term conditions

Family members of those with dementia are often referred to as ‘invisible’ or ‘hidden’ patients due to their unmet and often unidentified health and care needs. Poor self-management of caregiver health has negative consequences for the caregiver, the care recipient and health and social care systems worldwide. With a rising prevalence in long-term conditions due to an ageing population and a limited amount of health resources, it makes it increasingly important to understand and address the self-management support needs of such vulnerable populations. This research was conducted to investigate the self-management behaviours of individuals who have long-term health conditions, who are also the primary caregiver of a family member with dementia.

Using a Realist Evaluation design, a realist evidence synthesis was conducted to guide the development of an interview schedule. Informal discussions with three third-sector caregiver support service managers also informed data collection. Twelve in-depth, semi-structured interviews were conducted with adult male and female dementia family caregivers in the north of England. Data were analysed using Template Analysis; the principles of Realist Evaluation (TARMATO framework) were used to develop the final template into context mechanism-outcome configurations of barriers and facilitators to caregiver self-management behaviours. The findings from this analysis informed a second qualitative study involving interviews with six third-sector service providers and re-interviewing four of the original caregiver participants for further insight into potential support strategies arising from the data.

Behavioural and psychological symptoms of dementia (such as wandering behaviours or aggressive and attention-seeking behaviours) appeared as a dominant mechanism in contextualising dementia caregiving as an all-consuming role and contributed to numerous losses (such as the loss of ‘self’) in the caregiver. This resulted in negative self-management outcomes for the caregiver, such as a lack of adherence to medication and recommended treatment regimes, reduction in arranging and attending medical appointments and even an overall lack of acknowledgment of their long-term conditions and self-management needs. Emerging findings also reveal other mechanisms that act as barriers to self-management, such as health beliefs and attachment styles that are embedded within the complexity of this hidden patient population. Additionally, the study highlighted the utility of the policy oriented and practice-based frameworks, such as the Quality and Outcomes Framework of primary care in the UK, as a potentially useful tool if used qualitatively in third-sector settings.

Holistic methodological frameworks such as the one employed in this study are recommended for future research in this field. Readers of thesis are encouraged to combine these findings with their own knowledge and experience in order to reflect upon the implications of dementia caregiving on the life of a family caregiver with long-term conditions of their own. Involvement of the researcher as an intentional agent in the research process