Wellbeing, Work and Life Balance, Working Family Carers of People with Dementia: A Review

Special Article – Family Caregivers

J Fam Med. 2016; 3(3): 1057.

Wellbeing, Work and Life Balance, Working Family Carers of People with Dementia: A Review

Clarke R*, Chen HL and Rusted J

The School of Education and Social Work and The School of Psychology, University of Sussex, Falmer, Brighton, BN1 9RX, UK

*Corresponding author: Rachel Clarke, School of Education and Social Work, Essex House, University of Sussex, Falmer, Brighton, BN1 9RX, UK

Received: May 04, 2016; Accepted: May 17, 2016; Published: May 20, 2016

Abstract

In the United Kingdom, many people living with dementia are cared for by a member of their family. As the behavioural and psychological symptoms of dementia progress, caring roles can become burdensome and impact on the wellbeing of these family carers. For working family carers of a person with dementia, resources can become strained with the challenge of balancing both work and care roles. In line with the abolition of the retirement age, this review explores what is currently known about the wellbeing and work and life balance of working family carers of a person with dementia, and recommends where future research should expand on limited knowledge.

Keywords: Carers; Wellbeing; Work life balance; Dementia

Introduction

In the United Kingdom alone, there are around 800,000 people living with dementia [1]. Many of these are cared for by members of their family, with around 700,000 family carers of a person with dementia (PwD) in the UK [2]. The instrumental activities associated with caregiving include but are not limited to: managing household finances, housework, grocery shopping and preparing meals [3]. The emotional work of family carers of a PwD is an additional obligation alongside indirect caregiving duties, where the emotional management involved in care requires continual social interaction [4]. As the behavioural and psychological symptoms (BPSD) of dementia progress in severity, care becomes more demanding [5]. Impaired physical health among family carers of a PwD, has been correlated with BPSD, including: functional disabilities associated with cognitive impairment, the amount and duration of provided care and cohabitating with the PwD [6,7]. Sharing residence with the PwD can increase the risk of social isolation [8], particularly for family carers of individuals in the later stages of dementia [9]. In addition to witnessing changes in physical and cognitive status, the nature of care demands and the type of relationship between family carers and a PwD exacerbate psychosocial distress for family carers, increasing levels of depression and perceived burden [10]. Cognitive decline can also occur as a by-product of the chronic stress associated with caregiving [11]. In contrast, positive experiences of caring for a PwD have been conceptualised as enhanced relationships with others, feelings of self-confidence and positivity about life in general [12]. In 2009, The National Dementia Strategy [13] placed priority on the quality of support people with dementia and their family carers require living well with dementia. The Care Act [14] further stressed the need to support the wellbeing of individuals who are family carers. The elements of wellbeing covered under the Care Act include: economic wellbeing; personal dignity; control over daily life; participation in education, work and/or social activities; relationships with others; suitable accommodation and protection from abuse and neglect. In spite of the incentives to improve the needs and wellbeing of family carers, The National Dementia Strategy and the Care Act have not accounted for how these strategies vary across family care groups. The policy on the abolition of the default retirement age of 65 in 2011 [15] is one factor which could have an impact on the profile of family carers. As the period of working life extends, the numbers of family carers who face the challenge of balancing care and work life is also likely to increase.

This paper will consider how far the existing literature has addressed the needs and wellbeing of working family carers (WfC) of people with dementia, reviewing the studies that provide guidance about what is currently understood, and identifying the gaps in knowledge.

Reviewed Literature Methodologies

A literature search was conducted between October 2015 and January 2016. Articles relevant to wellbeing of (non-working) family carers of a PwD were obtained from: ASSIA: Applied Social Sciences Index and Abstract (93); IBSS: International Bibliography of the Social Sciences (40); Scopus (2705); SCIE: Social Care Institute for Excellence (31) and Web of Science (481). Articles related to the work and life balance (WLB) of WfC of a PwD were obtained from: ASSIA (429); IBSS (68); Scopus (31) and Web of Science (334). Care was taken to include all variants of key words: search terms included: ‘well-being’. ‘wellbeing’ and ‘well being’, and phrases: ‘work life balance’; ‘work life conflict; ‘work family balance and ‘work role conflict’; and bi-directionality of WLB: ‘life work balance’. To cover all definitions of carers, we used the terms: carer OR family carer OR informal carer OR caregiver and care*. As this study is considering the wellbeing and WLB of family carers of a PwD, the terms ‘dementia’ OR ‘Alzheimer’s’ were added to the search. Articles were selected on the basis that they included: a) family carers or WfC of a PwD; and b) measured wellbeing, quality of life outcomes, and health outcomes generally as these indices are frequently included in measures of overall wellbeing [16,17]. Non-working family carers of a PwD were included in studies which have measured wellbeing, owing to the paucity of WLB studies with WfC of a PwD. Articles were excluded on the basis that they were: a) over ten years old due to recent developments in wellbeing assessments [18]; b) focused exclusively on outcomes of an intervention or randomised control trial; c) focused on carers providing end of life support; d) focused on family carers or WfC of a PwD in a long-term care institution. In total, sixteen studies explored the wellbeing and WLB of family carers and WfC of a PwD.

Across studies relating to family carers and WfC of a PwD (excluding one review [19]), the data was collected from a total of 2,705 family carers and 216 WfC, who comprised spouses, daughters/ daughters-in-law, sons/sons-in-law, adult children/parents and others (nephew, niece, siblings and friends).

Appraisal of Included Studies

Family carers and WfC were recruited through a multiple range of agencies, including: specialist clinics; newspaper advertisements; health professionals; Alzheimer’s societies; support groups and programs; and registers. The most common limitations mentioned across studies related to: cross-sectional designs reducing investigations of causal factors; small sample sizes; insufficient control of socioeconomic; sampling strategies and samples biased towards Caucasian caregivers.

Only two studies conducted in Asia were related to family carers of a PwD who combined work and care [20] and explored workrelated conflict [21]. This represents a considerable knowledge gap in the literature relating to WLB among WfC of a PwD. As studies relating to WfC of a PwD were scarce, alternative research with WfC of older people in the UK was sought to provide an insight into the experience of combining work and care in this country [22,23]. Questionnaires were the preferred mode of assessment across the literature, though two studies included open-ended questions relating to the use of social support. Six studies focused on caregiving stressors associated with BPSD and their effect on family carers [19,24-28]; six studies explored subjective stressors associated with the care dyad relationship and wellbeing outcomes from the perspective of family carers of a PwD [19,24,29-32]. Four studies explored the mediating effect of support [33-35] and coping mechanisms [4] on caregiving stressors.

Wellbeing of (Non-working) Family Carers

Caring for a PwD has been claimed to be more strenuous than caring for patients with a chronic disease [36] or physical disability [37]. This makes family carers of a PwD a particularly unique and vulnerable group. As outlined in Table 1, four authors referred to the generic ‘subjective’ assessments of wellbeing’ (i.e. caregiver burden, stress, depression and self-esteem), whilst others included the physical, emotional and affective aspects of wellbeing (i.e. PwD’s ability to perform daily activities, caregiver education, and kin relationship). A total of nine studies alluded to the ‘psychological’ or ‘mental’ aspects of wellbeing, which included similar measures of depression, caregiver burden, anxiety and stress.

Citation:Clarke R, Chen HL and Rusted J. Wellbeing, Work and Life Balance, Working Family Carers of People with Dementia: A Review. J Fam Med. 2016; 3(3): 1057. ISSN: 2380-0658