Positive adaptation to Dementia: A Realist Evaluation of family carers’ journey towards Resilience

Parkinson, Mark (2018) Positive adaptation to Dementia: A Realist Evaluation of family carers’ journey towards Resilience. Doctoral thesis, Northumbria University.

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Abstract

Background: Prevalence of dementia and especially Alzheimer’s disease (AD) is increasing exponentially, both in the U.K. and more globally. Reliance on family carers of people living with AD (FCOPWA) to provide the backbone of care remains critical and continued reliance on such carers also represents current governmental policy. However, carers are vulnerable to salient health inequalities and chronic variable stress in particular as a direct consequence of taking on the carer role. The numbers of those family carers whose own health and wellbeing might be affected has reached unprecedented levels which are set to increase further in future.

Aims: This study therefore aims to investigate ways in which FCOPWA can be optimally supported to maintain and sustain family care over the course of the AD trajectory.

Research questions: ‘What works’ ‘when’ and ‘in what circumstances’ to enable the FCOPWA?’

Design: this study adopted a scientific realist methodology to identify ‘generative mechanisms’ which support the long-term maintenance and sustenance of FCOPWA. A rapid realist review (RRR) is employed to investigate a comprehensive range of candidates for ‘what enables the FCOPWA,’ draw up a new conceptual framework based on ‘what works’ and formulate candidate Program Theories (CPTs) to be empirically tested. Testing comprised eighteen in-depth interviews with family carers to gather data which could be analysed to further investigate the CPTs. This led to the establishment of more specific and narrowly defined Program Theories (PTs).

Findings: Five PTs emerged, presenting an adaptive carer pathway covering the three main stages of the AD trajectory. This adaptive pathway was underpinned by resilience as a key mechanism and facilitated by the adaptive and differentiated employment of a range of problem and emotion-focused coping approaches and strategies. Hope was also found to provide a pivotal positive and motivating influence throughout the FCOPWA. The pathway offered a way to promote the sustainability of FCOPWA.

Conclusions: The adaptive pathway outlined by this study may also prove useful in similar adult care contexts beyond AD and dementia. Additionally, the three main emergent strands: resilience, coping and salutogenesis might be usefully combined to represent an alternative paradigm to the traditional Medical model as part of the solution to the burgeoning question of how diseases which are chronic and life-limiting but not life-threatening such as dementia, but also other diseases with similar criteria, can be better served and supported in future by health and social care system.

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