Academic journal article British Journal of Occupational Therapy

The Human Occupational Impact of Partner and Close Family Caregiving in Dementia: A Meta-Synthesis of the Qualitative Research, Using a Bespoke Quality Appraisal Tool

Academic journal article British Journal of Occupational Therapy

The Human Occupational Impact of Partner and Close Family Caregiving in Dementia: A Meta-Synthesis of the Qualitative Research, Using a Bespoke Quality Appraisal Tool

Article excerpt

Introduction

In 2009, the Department of Health (DH) released the first national dementia strategy paper, highlighting increasing levels of dementia in the United Kingdom's (UK) ageing population over the preceding 25 years. It indicated shortcomings in service providers' knowledge of and education about dementia, poor diagnostic abilities, and a limited range of services for people with dementia and their caregivers. It stressed the importance of joint working between healthcare commissioners, providers, people with dementia, and their caregivers. These recommendations challenged health and social care professionals to examine and enhance dementia services and to identify and remedy gaps within current practice in order to meet the future challenges of dementia care.

The College of Occupational Therapists (COT) (2010) stressed the need for the profession to define clearly occupational therapy's role in caring for people with dementia. They recommended intervention focused on communication, sharing memories, improving safety in the home, accessing support services, and advising caregivers. Arguably, the success of these interventions is dependent on insightful working partnerships with caregivers, but there is a paucity of research that explores the human occupational impact of caregiving.

A literature search of the electronic databases AMED, CINAHL, PsycINFO, Pub Med, and OTseeker found only five occupational-therapy-based studies exploring human occupation and the dementia caring role. These were qualitative and used interviews with partners and close family caregivers to gain an understanding of family caregiving experiences. Both positive and negative caregiver experiences were described in these studies, suggesting that occupational therapists could have a role in implementing improvements for caregiver role performance and quality of life. A common recommendation in these studies was that occupational therapists need to work collaboratively with partners and family caregivers in order to ensure the best outcomes for both care-recipient and caregiver. These studies indicated that caregiving for a partner with dementia impacts on the caregiver's human occupation, a matter that occupational therapists should address along with their primary focus on intervention for the person with dementia. The unpredictable course of dementia and the changes to relationships it drives may affect the roles, routines, and capacity of caregivers to engage in everyday occupation. The complexity of the partners' interwoven relationship may affect the caregiver's occupational identity and efficacy, as previous roles change and new roles of caregiving consolidate. This in turn may cause caregivers to reformulate plans for their futures in order to manage a complex and unpredictable caregiving role, maintain their human occupation, and re-conceptualize their occupational identity (Kielhofner 2008).

The findings of these studies report only limited detail about the occupational impact on dementia caregiving. They were international studies with findings informed by specific cultural norms. The authors of the current study posit that information on human occupational experiences for caregivers is likely to be embedded within literature from disciplines outside occupational therapy. A meta-synthesis of such literature would provide a broader perspective on the occupational impact of partner and close family dementia caregiving. It would also help realize COT's (2010) call for a clear and defined role for occupational therapy in dementia care, focused on the human occupation needs of the caregiver.

The purpose of this meta-synthesis was to search for quality international studies across a range of disciplines concerning the experience of family dementia caregiving, and to assimilate findings to illustrate the impact of caregiving for a family member with dementia on the caregiver's human occupation. …

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