Who cares for the Caregiver?

The definition of a caregiver is an unpaid member of an individual’s social network who assists them with activities of daily living.  That is the most simplistic definition that I found with my research.  I have been attempting to research this topic for many years, and it does not surprise me that there is very little information on this and the effect it has.

I have held the title of primary caregiver to my mom for 18 years and counting.  My mother was diagnosed with Alzheimer’s disease at the age of 57, and I had just given birth to my one and only son. I was immediately propelled into the sandwich generation.12246826_10153687755676093_5749132091395810260_n

For those that don’t know what that is, the term Sandwich generation was coined by Dorothy Miller and Elaine Brody in 1981 to the social work and gerontology communities, respectively. (Miller, 1981) (Brody, 1981)

The concept originally refers to younger women in their thirties and forties who had children of their own but still had to meet the needs of their parents, employers, friends and others. Now that people are living longer, and children are requiring continued care, the sandwiching is now shared by both men and women who are in their fifties and sixties. (Wassel & Cutler, 2016)

I have tried to explain what caregiving encompasses, however, it is one of those concepts that unless you go through it yourself, you have very little appreciation for it. I was 30 when my mother was diagnosed, I had a husband, a newborn, a career and I was embarking on a new chapter in my life. Once my mother was diagnosed, my life became immediately about her, a multitude of appointments, neurologists, gerontologists, cat-scans, MRI’s and assessments.

My father passed away 14 months after my mom’s diagnosis and she came to live with me full-time.  I made a choice to keep my mom at home, and I was working full-time, so I needed paid assistance.  I employed a full-time caregiver. The operative word is employed.  Through the years, the optics on that comes with the assumption that, well she has help.  Again I reiterate, I “pay” for my help.  It is because without it, I would not have been able to work or look after my son.

In 2004, Bernard Van Denberg, Werner Brouwer and Mar Koopmansschap completed a study on the Economic Valuation of Informal Care. They articulated that informal care plays a significant role in the total care provided especially care of persons with chronic and terminal illness. Because informal care is a less visible part of total care in terms of costs and effects it is often been ignored in economic evaluations and policymaking subsequently.

silver and gold coins
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There is increased insight in the amount of informal care provided in various disease areas and the tasks that caregivers provide.  There is also growing evidence that informal care has adverse effects on informal caregivers in terms of, opportunity costs and quality of life. (Schulz & Beach, 1999)  At the same time informal caregivers is increasingly being considered as a valuable substitute and compliment of expensive formal care.

When conducting this research on caregivers, I was so elated to read that informal caregiving is ignored. Not only is it ignored it completely taken for granted and given zero credit. The term “informal” caregiver has now been thrust upon me.  Even when people ask what it is, I am at a loss for words. The term itself seems demeaning.  There is nothing informal about what I have done or do for my mom. I understand that the term informal and formal caregiving is to help distinguish between paid and unpaid roles. However there is a severe implication that there is no cost to support a child or parent or spouse.  The cost is colossal. Anyone who has this role understands the price that they pay, physically, emotionally and financially.

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I have checked for updated statistics on Caregiving in Canada, however the most recent is from 2012.  There were more than 8 million Canadians providing informal care to a family or friend.  44% were between the ages of 45-64 and a part of the sandwich generation. Another interesting statistic, is that statistically 80% of all care provided to seniors in the community and 30% of services to seniors in a long term care institution are provided by informal caregivers.

According to the report, caregivers that are employed are forced to balance the demands of work and caregiving that results in negative consequences of employment, such as missing work days, reducing work hours or foregoing job opportunities.  Personally, I had to reduce my work hours in order to care for my mom, and so that I could have one day off, to schedule her appointments.  I worked a modified work week- working 32 hours per week in 4 days in order to take Fridays’ off.  I could never apply for other positions, as I was on a modified work arrangement.  In addition, I had snarky comments such as “it must be nice to have a long weekend, every weekend.”  Yes, so nice, to have your parent have a neurological disorder, where you have to sacrifice, money, free time to assist her to appointment after appointment. (I am living the dream)

The consequences for caregivers, their families and their employers carry a high economic cost. 520,000 employed caregivers missed one or more days off work per month to provide care.  Collectively there were 1.48 million days per month missed.  Additionally, over 313,000 employed caregivers reduced work hours to accommodate caregiver responsibilities.  The reduction in paid work also impacts employee benefits which resulted in 14 percent of employed caregivers reporting loss in health benefits, dental benefits and employer provided pension, life insurance and prescription drug plans.

The economic value of caregivers is astonishing:  caregivers save Canada’s health care system between $24 billion to 31 billion annually. Family members stated that caregiving caused them to have reduced amount of time spent with their children.  Time spent caregiving also mean less time spent with spouses.  65% of caregivers who were married or common-law spent less time with their spouses as a result of caregiving responsibilities.  This also resulted in a reduction of time spent with friend, social activities and taking care of oneself.holding-hands-caregiver

Family caregivers who cared for their child were said to receive various types of public support, for instance 30% received money from government programs, compared to 14% of those caring for a spouse and 5% for a parent.  Even though family caregivers who cared for a spouse or a child, that received public support, they also were more likely to have un-met needs.

Although caregiving is considered beneficial due to the savings achieved and the well-being of the family member, taking on these responsibilities can have consequences for caregivers.  Caregiving can have psychological consequences, health effects, pressures on personal finances and consequences in career.

I could not stop there, I had to look at other apsects of caregiving.  Although I know first-hand the effects of it, I continued my search.  The American Psychological Association examined the Mental and Physical effects of Caregiving.  It was found that older adults in caregiver roles may be particulary vulnearble due to caregiving demands.  It may tax thier health and compromise their immune response systems.  The Stress that is assoociated with caregiving can intensify existing chronic health conditions. (Navaie-Waliser et al., 2002)

Older caregivers are also at increased risk for unintentional injuries, falls, cuts, scrapes and bruises that can range from minor to serious.  (Hartke et al., 2006). Evidence also suggests that women take on more caregiving tasks and more distress than male caregivers. (Pinquart & Sorensen, 2005; Yee & Schulz, 2000).

Due to the time demands, caregivers are less likely to engage in preventative behaviours that non-caregivers, thus neglect their own health (Schulz, 1997).  Dementia caregivers report the highest rates of stress and depression over other caregivers. (Ory et al., 1999). In addition, there is also evidence that caregivers in certain scenarios for example, those caring for a loved one with a brain injury and dementia, may be more likely to encounter verbal abuse from the care recipient.  (Erosa, Elliott, Berry & Grant, 2010; Stern, 2004).

The potential negative effects on caregiving go beyond mental and physical effects, caregivers, particularly young caregivers experience disruptions in their education, putting off school or dropping out entirely, which can impact their future career and earnings (National Alliance on Caregiving, 2005). Caregiving can also result in considerable financial strain, and can cause difficulties in other roles such as marriage and employment (National Alliance for Caregiving, 2009; National Opinion Research Center, 2014).

stressAlthough some caregivers report many psychological benefits from caregiving, many even experience improved health and reduced mortality with their caregiving experience; there are clearly subgroups of caregivers that report high levels of strain, heightened depression and may show negative effects from Caregiving.  Caregiving strain is worsened by certain kinds of caregiving demands (dementia and end-of-life care) and in circumstances where caregivers do not have enough resources, overworked-family-caregiverknowledge, skills and social support, respite and community services can be overwhelmed. Clinicians in many setting are most likely to see highly strained caregivers and should be prepared to address their considerable psychological, social, and health needs, while also understanding that caregivers may fell pride, a sense of purpose and other benefits from their caregiving activities.

I wanted to find a monetary figure on the amount of savings that caregivers provide to health industry. I know it is in the billions, the first study I looked at in 2012 was 24 billion.  However, I continued my research, and came across an article entitled “Can Family Caregivers Reduce Hospital costs”, by Howard Gleckman, who is a senior contributor for Forbes. He states it is important to calculate a financial value so that when the government creates new supports for family members who assist aging parents or other relatives with disabilities, it will know if that assistance could reduce government spending.


He says there are many ways to figure what caregiving is worth.  You could calculate what it would cost if all those family caregivers were paid market rates for the personal care they provide.  The American Association of Retired Persons said the economic value of family care could be as much as 470 billion annually in the United States.  Gleckman also says that you could try to calculate the lifetime financial sacrifice of a daughter who abandons her career to help a relative.  By one estimate, the lifetime cost of a 50-something woman who quits her job to care for an aging parent can be as much as $300,000 in lost wages and retirement benefits.

Another way to measure the value of family caregiving.  By providing needed supports for relatives living at home, it could reduce emergency room visits and hospitalization, which is a significant savings in the amount of heath care dollars.

The evidence is there, caregivers save the health care system billions of dollars.  There is a physical, emotional, mental and financial sacrifice that is made as a caregiver.  The statstics for dementia alone are staggering.  Bt 2050 135.5 million people will develop dementia. (That is just one disease).  1 in 3 people will have the disease, if you don’t develop it, you will be caregiving for someone that has it.  Many people are interested in a cure, and of course, I am one of those people.  But in the interim, what happens to the individuals that are caring for the person, or the many caregivers out there?  Who cares for the caregiver?



Bernard van den Berg, Werner B. F. Brouwer and Marc A. Koopmanschap Source: Economic Valuation of Informal Care: An Overview of Methods and Applications The European Journal of Health Economics, Vol. 5, No. 1 (Feb., 2004), pp. 36-45 Published by: Springer Stable URL: http://www.jstor.org/stable/3570100

Brody, E.M. (1981). “Women in the Middle and Family Help to Older People”. Gerontologist. 21: 471–480.

Erosa, N., Elliott, T., Berry, J., & Grant, J. (2010). Verbal and physical abuse experienced by family caregivers of adults with severe disabilities. Italian Journal of Public Health 7,2, 76-84.

Gleckman, H. (2016). Can Family caregivers reduce hospital costs, Forbes.com, https://www.forbes.com/sites/howardgleckman/2016/06/10/can-family-caregivers-reduce-hospital-costs/#d29a94d77c69

Hartke, R.J., King, R. B., Heinemann, A. W., & Semik, E (2006). Accidents in older caregivers of persons surviving stroke and their relation to caregiver stress. Rehabilitation Psychology , 51,150-156.

National Alliance for Caregiving (2005). Young Caregivers in the U.S . Retrieved November 2, 2010, from http://www.caregiving.org/data/youngcaregivers.pdf

National Alliance for Caregiving and AARP. (2009). Caregiving in the US. Bethesda, MD: National Alliance for Caregiving.

National Opinion Research Center. (2014, May). Long term care in America: Expectations and realities. Retrieved from http://www.longtermcarepoll.org/PDFs/LTC%202014/AP-NORC-Long-Term%20Care%20in%20America_FINAL%20WEB.pdf

Navaie-Waliser, M., Feldman, P.H., Gould, D.A., Levine, C., Kuerbis, A.N. &, Donelan K. (2002) When the caregiver needs care: the plight of vulnerable caregivers. American Journal of Public Health , 92, 409-413.

Ory, M. G., Hoffman, R. R., 3 rd , Yee, J. L., Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. The Gerontologist, 39 (2), 177-185. doi:10.1093/geront/39.2.177

Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250-267.

Wassel, J.I. and Cutler, N.E. (2016). “Yet Another Boomer Challenge for Financial Professionals: The ‘Senior’ Sandwich Generation”. Journal of Financial Service Professionals. 70: 61–73.

Statistics Canada. 2012. “Portrait of Caregivers” http://publications.gc.ca/collections/collection_2013/statcan/75-006-x/75-006-2013001-6-eng.pdf

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