An abbreviated version of this article is printed in HOTSPOT: The newsletter of the Rapid Response Radiotherapy Program of the Odette Cancer Centre at Toronto’s Sunnybrook Health Sciences Centre (November 2009 Issue)

 

Priceless: The Value and Worth of Family Care-giving


Family care giving is an essential, but often hidden, ingredient in our healthcare systems. According to Health Canada, one of the core determinants of health is our interaction with social clusters or networks. In other words, we each should build and live in a village to support us. The village can be made up of: family members, friends, sports mates or business colleagues.


When someone becomes unwell, health care teams step in to become the primary social network until the news about illness and risk is shared between and amongst each other.  When one of us becomes unwell, there is a domino effect of change that touches the lives of those in the social networks. Seldom, if ever does someone suffer alone.


Despite the seemingly large numbers of health care professionals to support patients and their families, it is estimated that only 20% of care giving supports are health care professionals. I am part of this 20 % and for all that we do as health care professionals, our numbers by percentage seem shockingly low to me. Even for those of us not particularly articulate in sums and numbers, this means that 80% of the caregiving population is family members. I imagine that if this 80% of caregivers (families) ever decided to quit their caregiving role, the health care system would likely collapse under the displaced burden of care onto the health care professionals and our systems of care    (emergency departments, respite care etc).


Professional caregivers know how hard we work, and how demanding the work of care giving can be.  In comparison, what percentage of family caregivers take on caregiving as a moral and human expression of compassion, only to realize that they do not have the stamina of a long distance runner? How many find that their initial and perhaps steady spirit of caregiving is worn down by the daily demands of an ill family member who is increasingly diminished -but who is not only not getting better but who is ever so slowly getting worse? Change in these times is often measured by grains rather than tablespoons. Time becomes protracted over months and years, rather than weeks. Life becomes drained from all involved.


In a world of gender biases and assumptions, people often assume that men make poorer caregivers than women. As we map out the human brain and learn more about how our brain function impacts on cognition and behavior, we may discover that some brains are better at doing certain tasks than others. We may also find out that our brains organize knowledge and skills based on what we do repeatedly. It is not remarkable to learn that  about 60% of all caregivers are women. This might mean that women who tend to be the dominant caregivers in society would have more competency and capacity as caregivers than men. This strength, rather than deficit, based model is perhaps a kinder and more humane way to distinguish our abilities as family caregivers.


A recent phenomenological study of care giving found that while male and female family caregivers may provide the same numbers of care giving hours, males found it significantly more difficult to perform this role. Male respondents claimed that they would prefer to stay at work, extending their occupational employment hours to make more money and thereby pay someone else to help provide care to a family member (Chaban et al, 2009). Does this mean men care less? Not likely, but rather that men prefer to work in areas where they can make the greatest difference and feel competent in what they do.


This also points to the possibility that both male and female family caregivers run risks of becoming increasingly marginalized in their life as they provide care giving. Males may run the risk of heightened performance and success outside of the family care giving role while seeking an enhanced capacity in their occupational rather than relational field so as to increase their earnings to pay for care. Similarly, if females are the primary family caregivers, they may in fact relinquish or reduce their occupational role so as to provide more hours of care giving as the needs increase. Both dynamics point to care giving being about balance, sacrifice and choices. It also carries a fiscal burden for both genders.


Caregiver benefits are available through Canada’s fiscal support programs.  While this is an exceptional resource, it is time limited. This makes its use-ability complex. What if a family caregiver takes time off work to provide care relies on the caregiving benefits only to find our one must return to work before the person being cared for dies. At the height of need, one can find oneself without salary or job. Also, while one’s job is protected if one takes a leave from one’s employer, one’s position is not necessarily ensured. Family caregivers can take a leave and find themselves returning to a place in the company but not necessarily the same position.


Family caregivers can range in age from children to seniors. Young single parents of newborns are caregivers. Children and adolescents can find themselves going to school and coming home to homework and their caring for a differently abled parent. You can be a partner of any age who is caring for someone who is seriously or chronically ill. You might be a middle-aged child caring for an aging parent, as well as children or adolescents.


A colleague and friend who works in a high powered job in social services and education was a family caregiver to her older brother, who recently died after five years of living with cancer, her younger sister who is also living with cancer and who is palliative, and an ailing and aging father with dementia. This family is very much invested in life-but care giving can be overwhelming. One has little time to mourn or to heal, as one is providing care. How does the village provide care for the caregiver and her family in such need? How do employers support this need over years?


It may also be less rare than imagined that you are a health care professional who takes care of strangers all day and then comes home to provide care for an ailing family member. Family caregivers are a diverse group. This kind of diversity makes it difficult to develop a strategy to provide care for them as a whole. Family caregivers may or may not be unwell themselves, and they are certainly an essential aspect of health care. How can we provide care to this essential group of caregivers? If one ministry were to provide appropriate resources to support them, which ministry would be most responsible: health, community, family, employment and income security?


Family caregivers are a priceless commodity. It is estimated that family caregivers make up between 2.8-5 million people. In 1996, Health Canada estimated that there were approximately 3 million family caregivers. Based on an average annual growth rate of 14.7% there would be 7,787,000 family caregivers today (The Family Caregivers Newsmagazine). The National Profile Of Family Caregivers in Canada 2002 indicates that 52% are under 55years old and 30% are under 45 years old. While this profile does not account for those < 18 years of age it does mean the majority of family caregivers are under 55 years of age.


Family caregivers make up a significant group and could have a significant voice in determining how health care responds to these needs of this workforce. Despite the magnitude of their numbers, and their importance to health care, it is unlikely that family caregivers recognize how significant they are to health care!  Family caregivers are a hidden commodity given the nature of their home-based care giving. They are at risk for   becoming marginalized in what and how they conduct their care giving. Their marginalization is a furthered by the disconnection from each other as caregivers. They often displace their own needs in order to give priority to their family member’s needs that are identified by disease processes, disability or by aging-not by how many hours of care are needed to sustain them. 


Family caregivers are not only a workforce but they are an economic force. Given their numbers, you may not be surprised to learn that family caregivers spend $27 billion a year, caring for others.


What do they spend?*                 Average Annual Expenditure *         5 million family caregivers

                                                            $ billion **

Medical care, insurance,

co pays, drugs                                     $1,161.00                                     $5.81


Food meals, household goods            $   868.00                                     $4.34


Travel                                                   $  551.00                                     $2.76


Services [day services, home care]     $  547.00                                     $2.74


Housing, rent utilities                            $ 354.00                                      $1.77


Caregiving services

(respite counseling)                              $ 343.00                                      $1.72


Home Modification                                $ 262.00                                      $1.31


Clothing                                                 $ 241.00                                      $1.21


Medical Equipment and Supplies          $ 182.00                                      $0.91


Legal Fees                                             $  78.00                                       $0.39


TOTAL                                                $ 5,531.00                                     $27.66


* US Ever care Study Family Caregivers- What They Spend, What They Sacrifice

** Applied to size of Canadian Market


Family care giving is a complex business. Fiscal, social, emotional demands can leave family caregivers feeling depleted. It should not be surprising that one in four Canadian workers suffer from caregiver stress [Work Life Conflict –Higgins and Duxbury Oct 2003, Health Canada]. Absenteeism due to caregiver stress costs Canadian business $2-3 billion each year [Work Life Conflict –Higgins and Duxbury Oct 2003 Health Canada $1 billion in direct costs and $1-$2 billion in indirect costs. (Reference: Balancing Paid Work and Caregiving Responsibilities: A Closer Look at Family Caregivers in Canada - Higgins, Druxbury, Schroeder, January 2009]


So for all their numbers and all their capacity, what do family caregivers contribute to society? We know that morally, their contribution is priceless. An estimated fiscal value for their work is $20-$30 billion. According to “The Economic Value of Informal Caregiving” Health Affairs Mar/Apr 1999, the value of services provided ‘free’ is estimated at $196 billion. Since Canada’s adult population is 11.7% of the US it would equal $19.6 billion USD for Canada or $30 billion CND (CCC April 2009).


This workforce of family caregivers can spend a lifetime or a little time performing their tasks of care giving. They may or may not seek out support from the other 20% of professional caregivers employed by health care. As health science preserves life both at its beginning and its ends, there will be an increased demand for all forms of caregivers. How will we meet these expanding needs with a less increasing health care dollar?


For a vision of what is possible, let us return to the original idea that a primary determinant of health is our social networks or social webbing. If you were to become unwell tomorrow, would you turn to your social network to inform them of your health, would you turn to them and ask for help? If you asked for help, what would that look like? Are there people, resources and organizations that could help with a knowledge exchange program to enhance your communities care giving capacity? The answer is “yes”. Health care is recognizing the value of this precious workforce and is planning architecture of support for these social networks.  Advocacy groups such as the Family Caregiver Network, a collective of many agencies known as navCare which helps families negotiate care across the health care system, as well as Hospice Volunteers trained in social support are looking at seamless systems of care that help navigate people through the care system.  In the United States, 15% of all health care is delivered by volunteers who provide necessary support to individuals and families in need. Imagine if we started using our volunteers and social networks to provide care more effectively?


Some of us resist the idea of allowing strangers into our lives when we feel most vulnerable. It is understandable. Yet Canada is built on pockets of communities that immigrated, founded and built life around villages. Building communities is an inherent part of our nation fabric. As Canada’s shifting demographic changes, as our villages become more wobbly with those who live with vulnerabilities in their homes, let us find a way to expand our social networks to enhance the health and well being of all, including those who offer this most worthy of services: family care giving.



Some Tips:


1.Identify, empathize and advocate for family caregivers needs and networks.

2.Connect family caregivers with appropriate inter-professional resources that will lessen the demands of care, promoting endurance and resiliency over the course of time ( i.e. energy conservation (OT’s), psycho- educational counseling, mindfulness meditation, resource management and fiscal planning ( social work),  pain management and ambulatory transferring strategies ( nursing, rehabilitation medicine), respite care ( CCAC, Hospices).

3.Educate family and professional caregivers in the importance and strategies for building family caregiver networks.

4.Refer family caregivers to resources that will help them develop family caregiver networks through education, co-ordination, navigation ( CCAC, Hospice, Navcare, The Family Caregiver Magazine).




Dr Michele Chaban, MSW,RSW, PhD is a co-founder of Habitat Healing (www.habitathealing.com); a community based family education and counselling program in Toronto, Canada. She is co-director of the Clinical Mindfulness Program at University of Toronto’s Faculty of Social Work, A PhD supervisor at University of Wales (Lampeter) and Director of the Contemplative End of Life Care Program at the Institute of Traditional Medicine in Toronto. Michele’s life work has been dedicated to healing to make whole) individuals, families and communities who suffer from illness, differential ability, poverty and violence. She is a published author of several books. Her work is known locally, nationally and internationally.