Alzheimer's Disease: The Resilience Approach to making the Family Care of People Living with Alzheimer's sustainable

Parkinson, Mark, Carr, Susan, Abley, Clare and Rushmer, Rosemary (2017) Alzheimer's Disease: The Resilience Approach to making the Family Care of People Living with Alzheimer's sustainable. Journal of MPE Molecular Pathological Epidemiology, 2 (S2). 01.

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Abstract

With critical reliance on primary family carers of people living with Alzheimer’s disease (PWA) at an all-time high and set to increase markedly over the next few decades an urgent question concerns how this growing army of family carers will be supported in the future? The uniqueness and complexity of Alzheimer’s disease (AD) compared with other diseases and the myriad challenges it presents for family carers make such carers particularly vulnerable to the debilitating effects of chronic stress and its sequelae. The biopsychosocial pathways responsible for carer health deficits resulting from chronic exposure to the care environment are discussed. Further, a new epidemiological framework is introduced that attempts to capture how the dynamics at work within the AD care environment might lead it to become epidemiological in the sense that chronic exposure to it can uniquely generate carer disease outcomes. If the family care of PWA can potentially create an environment and dynamics within this that may be injurious to carers themselves, leading to premature cessation of informal care, a central issue for policy-makers and service providers concerns ‘who will care for the carers and how?’

Although the present article primarily focuses on family carers of PWA, the knowledge that carers’ health has a relatively direct impact on the capacity to carry out caregiving, as well as influencing the levels of harmony or disequilibrium that exists within the care environment, crucially means that carers’ health also impacts on the wellbeing of PWA as part of a closely knit reciprocal relationship-they are mutually bound.

Further, while there is evidence to indicate that some family carers of PWA appear able to overcome the many challenges and potential attrition long-term care of a PWA can inflict on their own health, a further key question concerns how such carers manage despite adversity? What characteristics, assets and resources do these carers possess that perhaps sets them apart? Are there valuable lessons we can learn concerning how the family care of PWA might be made optimal while safeguarding family carers’ own health? This represents an important question since the vast majority of family carers, and moreover their care recipients, hope and desire to spend their final years, months, days together as a family rather than see their family member consigned to a formal institution. This article therefore argues the case for urgent public health action against the backdrop of the rising tide of AD globally.

Presently, there is a lack of any clear consensus concerning how more productive care environments might be created that better safeguard both family carers’ health and by association PWA’s health. Moreover, there is a need to move beyond syntheses of findings from the available literature that are limited to descriptive accounts based on ‘outcomes’ and towards a deeper analysis of ‘process,’ i.e. by focusing on what intrinsically ‘works’ to support family carers of PWA and how these processes might be generated. In response, the present authors recently conducted a comprehensive Realist review of the current literature. How this review was conducted is briefly described, as are the broad findings that lead to the proposal of a new model of family care of PWA. The strengths and weaknesses of existing hypotheses are discussed for how carers can counteract the challenges to their own health that care of PWA can bring and a new hypothesis is proposed based on a Resilience approach to family care of PWA that links with humans’ ‘fight or flight’ response to stressors.

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