Published on: January 1, 2018
by Women’s Brain Health Initiative:
Taking care of someone with Alzheimer’s disease and other forms of dementia is not an easy task. Caregiving is a long-term endeavour that is mentally, emotionally, physically, and financially demanding, and is a role that is most frequently taken on by women. The National Alliance for Caregiving estimates that between 60-70% of informal care for Alzheimer’s patients is provided by women.
Dementia caregivers usually assist with an extensive range of tasks that expands as the disease progresses, including helping with household chores (such as cooking, cleaning, and managing finances) to assisting with personal needs such as feeding, bathing, and using the toilet. A recent research report published by the National Alliance for Caregiving, in partnership with the Alzheimer’s Association, estimates that dementia caregivers, on average, spend 28 hours per week providing care. For many caregivers, this immense undertaking is in addition to competing demands for their time such as working full time and, for 26% of dementia caregivers, caring for children or grandchildren.
According to the World Alzheimer Report 2015, The Global Impact of Dementia: An analysis of prevalence, incidence, costs and trends, the total cost of informal (unpaid) care worldwide in 2015 amounted to an astonishing US$330.8 billion. More recently, a report published by the Alzheimer Society of Canada estimates that the cost of informal care in Canada alone is conservatively valued at $1.2 billion. In 2011, family caregivers provided approximately 19.2 million hours of informal care to loved ones with dementia. The amount of informal care is expected to double in Canada by 2031.
In addition to the opportunity cost associated with informal care, there are many direct costs involved in caring for individuals with dementia, including ongoing medical treatment, safety-related expenses, prescription drugs, personal care supplies, adult daycare or in-home care services, and full-time residential care. Depending upon the country of residence and the type of insurance or work benefits that the individual with dementia receives, some of these costs will be covered, but many are typically out-of-pocket expenses paid by the family.
Not surprisingly, then, the abovementioned research report published by the National Alliance for Caregiving and the Alzheimer’s Association indicates that nearly one in five dementia caregivers (19%) experience “high financial strain due to caring for their loved one.” Women are particularly vulnerable. A study conducted by Yang et al., published in the 2015 issue of Women’s Health Issues, revealed that women face higher risks of financial drain from caring for loved ones with Alzheimer’s disease than men.
Research suggest that when women act as caregivers, they may spend as much as 50% more time providing care than their male counterparts. Women are estimated to provide informal Alzheimer’s disease care worth 20 times the care provided by men across the entire Baby Boom generation. Moreover, women tend to assume the most physically and mentally challenging roles in caregiving such as bathing and feeding, whereas men often handle less stressful tasks such as reading and transportation.
Providing such high-level care can significantly impact a woman’s career choices and opportunities, and may result in lost wages due to reduced work hours, prolonged absence from the workforce, or early retirement. Women caregivers are notably less likely to receive a pension and, if they do, their pension is approximately half of what men receive.
Caregiving Burden is Expected to Grow
With people living longer and having fewer children, and as the Baby Boomers enter into retirement, the chances of becoming a caregiver to an elderly relative increase. Additionally, Canada is expected to experience a shortage of long-term care spaces and, according to a study commissioned by the Alzheimer Society in 2010 entitled Rising Tide: The Impact of Dementia on Canadian Society, this will result in a significant shift from institutional care towards home/community-based care. In 2008, 55% of Canadians (aged 65 and over) with dementia were living in their own homes, most with the support of some kind of community care.
It is anticipated that by 2038, approximately 62% of Canadians (aged 65 and over) with dementia will be living in their own homes. This represents an increase of over 500,000 individuals who will require family and community support in their homes to cope with dementia. Importantly, the Rising Tide contributes to the goal of generating a solid, evidence-based foundation upon which policymakers can build a comprehensive national plan to prepare for and mitigate the burden of dementia on Canadian society.
Number of Male Caregivers is on the Rise
Although women comprise the majority of caregivers for those with Alzheimer’s disease and other dementias, the number of men providing care is on the rise. Between 1996 and 2011, the percentage of men caring for someone with dementia is estimated to have more than doubled (from 19% to 40%). This shift, reported by the Alzheimer’s Association in the U.S., has likely occurred in other countries as well since it has been attributed to trends that are applicable globally: the population is aging and dementia is significantly more common among women who are therefore in need of care.
Source: MIND OVER MATTER – V5
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