The importance of considering caregivers’ needs: A gender-based perspective
By Annemarie Schumacher Dimech
The World Health Organization reports that family-based caregiving continues to be the norm across the globe. The care and support provided by informal caregivers is invaluable for both the person receiving care as well as for state and society.
The economic value of informal care has long been recognized as a substantial offset to the costs that would otherwise be shouldered by government programs. On the other hand, notwithstanding the positive aspects of caregiving, caregiving has been observed to have an impact on health as well as an economic impact on the caregivers and their family across cultures.
Cultural stereotypes and gendered norms contribute to the frequent expectation that women (mostly wives and daughters) take over caregiving responsibilities in the family. This is reflected in most studies and reports: 72% of caregivers covered by Pinquart and Sörensen’s meta-analysis are female; in the UK, 60 -70% of carers for people with dementia are women; and in the US, 65% of the circa 43.5 million caregivers providing unpaid care to an adult or child in the last year are female.
Studies conducted in developing countries also report similar patterns in caregiver roles, such as in India (where sons are expected to care for their parents, but their wives often end up doing the actual work) and Botswana.
Gender differences in the caregiving experience
Gender differences are not only observed in the statistics of caregiving, but also in how this role is experienced. Caregiving of people requiring intensive care (more than 2 hours per day), is mainly done by women. Women are also more likely than men to help with the more personal aspects of care, such as bathing, dressing, using the toilet, and managing incontinence.
On the other hand, men are more likely to seek external help than women, while women try to cope on their own. The combination of these different factors impinging on the experience of caregiving may explain the higher burden and associated health problems reported by women.
Women report a higher burden than male caregivers as well as more symptoms of depression and disruption of leisure activities. In a clinical review of risk factors for caregiver burden, the risk was estimated to be twice as high for women than for men.
It is also reported that women in general have a higher risk of suffering from depression and anxiety disorders. This, along with their more intense experience of caregiving involving more personal care, emotion-focused coping strategies, and higher emotional involvement, places women at a higher risk of suffering from stress-related diseases and caregiver burnout. This knowledge must be integrated in strategies in primary care and, most importantly, at the first point of contact where healthcare providers should be aware of and look out for signs of risk factors and critical situations in their patients’ female caregivers.
When talking about gender differences in caregiving, it is important to consider men’s experience in this role too. Russell describes how men approach their caregiving role differently than women in that they combine both management as well as nurturing skills, while women take a predominantly nurturing approach. It appears that the problem-focused way of addressing challenges related to caregiving is associated with lower strain or caregiver burden.
Nevertheless, male caregivers’ needs must be kept in mind as well as the possibility that men may experience and manifest the strain of caregiving less overtly due to societal pressure and male stereotypes.
Longitudinal studies found that both taking on a caregiving role or increasing caregiving duties related to a reduction in weekly work hours or early retirement (mostly observed in women). Other studies report female caregivers experience a significant reduction in wages in comparison to female non-caregivers while no wage difference occurs for men. A more recent longitudinal analysis of 15 European countries found that for women, daily caregiving exhibited a negative effect on work status and work hours, however providing care weekly or less did not impact employment.
While this most recent finding may point to the beginnings of a change in gender disparity when it comes to the intersection of caregiving and employment, a gap remains to be addressed. Other studies also report that disparities disappear when both men and women are working full time, but do emerge when different wage levels occur between the genders.
This leads to an important point to bear in mind, which is that of generational change.
An increasing number of men are taking up the caregiver role, and male and female stereotypes are evolving. This may lead to a levelling of the statistical differences between male and female caregivers, but still leaves the differences in how this role is experienced and coped with.
Another aspect related to generational change is the increasing number of women in employment leading to a greater need of external support for caregiving situations. Moreover, increased mobility has led to a rise in distance caregiving which brings new challenges to this role and once again shows gender differences.
Indeed, societal structure is changing both at micro and macro levels due to globalization and increases in mobility, thus leading to greater distances between family members and less availability for caregiving due to work commitments. This change is observed in various studies, such as Da Roit’s, who reported a decrease in daughters taking up the caregiver role while seeking paid care services, pointing at changes in the family and societal roles and challenging gender stereotypes.
Shaping effective policies & strategies to support caregivers
Knowledge about and consideration of gender differences in the experience of caregiving is highly relevant for the shaping of effective policies and public health strategies. Various studies and reports highlight the need for innovative solutions that consider both the care recipients’ as well as the caregivers’ individual needs.
To address this need, a future-oriented precision approach would be most adequate, also reflecting the growing relevance of precision medicine. This approach is possible by first identifying caregiver characteristics that act as risk factors as well as by developing adequate screening instruments that are individualized to these characteristics.
Morgan and colleagues argue: “…all caregivers ought to be valued and their roles demystified in order to move towards a situation where women and men feel comfortable to share their experiences and indeed the workload, so as to improve their caregiving experiences”.
Thus, more longitudinal studies investigating gender differences in the caregiving experience are necessary to glean a better picture of what factors need to be addressed.
In general, caregivers tend to report more stress-related symptoms, economic burden and cognitive decline (in particular for caregivers of persons living with dementia). Female caregivers tend to report higher emotional burden, more symptoms of depression and anxiety and reduced physical health. On the other hand, male caregivers may talk less about their distress and experience the caregiving role in a different manner.
Tackling gender disparity in these psychological as well as socio-economic factors might help prevent diseases and other socio-economic consequences for caregivers worldwide.
The Women’s Brain Project (WBP) recognizes the invaluable work of informal caregivers and advocates for a better awareness of their individual needs.