Dementia care-giving and employment: a mixed-studies review on a presumed conflict

Abstract

Many persons with dementia live at home and are cared for by their relatives. If the relatives are still employed, this can lead to higher burden and losses in their work-life. The interplay between informal care-giving and working is complex. Different studies have explored this issue, but the results have not been yet synthesised. In this mixed-studies review, we elucidate the underlying complexity. Our objective is to identify the factors related to care-giving that influence employment, and to describe their impact on dementia care-givers’ employment. We performed a literature search of primary studies using four databases and one meta-database, and retrieved English- and German-language articles. We used the Mixed Methods Appraisal Tool to assess their methodological quality. Evidence identified was synthesised by a parallel-results convergent synthesis design. We included 55 qualitative, quantitative and mixed-method studies published up to January 2018. The emerging model identified factors linked to the care recipient with dementia, the informal care-giver and the care-giving context. The impacts of these factors on care-givers’ employment are mostly negative (e.g. stopped/reduced work, decreased job performance). Nevertheless, the results provide encouraging insights as working can counterbalance care-giving strain, and managing both roles can enhance care-givers’ wellbeing. Practical efforts should focus on enabling informal care-givers to better manage the balance between care-giving and work responsibilities.

Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland

“…Three of the top five rankings in relation to social supports were linked to monetary and financial relief, including carer's allowance (non-means tested), carer's support grant and monthly wage. This was not surprising, as family carers' current and prospective financial status has been shown to deteriorate for various reasons, including workforce withdrawal, early retirement, out-of-pocket expenses for caring costs and decline in their own health (Carmichael & Ercolani, 2016;Chen et al, 2019;Jacobs et al, 2014;Neubert et al, 2019). Three quarters (73%) of Irish family carers have reported they do not have enough money to cover care-related costs and meet their other expenses (Family Carers Ireland, 2019a, 2019b.…”

“…This cost is even higher for families of people with dementia, with 32% of annual household income going towards out-of-pocket care-related expenses (Kelley et al, 2015). Furthermore, family carers often experience significant loss of income if they are unable to balance employment and caring responsibilities (Neubert et al, 2019;Principi et al, 2014). Given restricted pensions and decreased opportunities to accumulate wealth, family carers' finances do not tend to recover in their post-caring life (Craft et al, 2018;Nepal et al, 2011).…”

Antecedents and Outcomes of Enrichment Among Working Family Caregivers of People With Dementia: A Longitudinal Analysis

“…Consistent with the W–HR model, Neubert et al (2019) reported managing both roles can enhance family caregivers’ well-being. However, few studies have examined enrichment outcomes in this population.…”

“…Traditionally, female spouses play the primary caregiver role in Japan; however, more men and adult children are now filling this role ( MHLW, 2017 ). Consistent with international employment trends among younger family caregivers of PWD ( Neubert et al, 2019 ), over half of the adult children caregivers in Japan are employed ( MHLW, 2017 ).…”

“…Although balancing work and caregiving is challenging, some working family caregivers experience positive effects from their dual role ( Neubert et al, 2019 ). Conceptualizations regarding such positive experiences include positive spillover ( Kirchmeyer, 1992 ), enhancement ( Sieber, 1974 ), facilitation ( Grzywacz, 2002 ), and enrichment ( Greenhaus & Powell, 2006 ).…”