“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”
First Lady Rosalyn Carter is both philosophical and truthful when she describes caregivers. There are 66 million adults in the US who are unpaid caregivers–nearly 30% of the adult population!
The Canadian Institute for Health Information estimates that there are 2 million unpaid caregivers in Canada.
Caregivers are defined as either formal or informal. Unpaid caregivers are the informal type, helping others who, due to
disability, chronic disease or cognitive impairment, can’t perform essential activities on their own. Informal caregiving is performed by family members, neighbors and/or friends, often at home. Natrice Rese is one of those millions of caregivers.
She worked in long-term care and home care until 2009 when she started family caregiving for her granddaughter, Maia. Maia has a rare genetic disorder called Emanuel Syndrome, is developmentally delayed, totally dependent and non-verbal. A website created by her daughter, Stephanie St. Pierre, provides support and information to others facing this disorder. As Ms. Rese states, “Family caregivers aren’t just there 8 or 12 hours a day. They live the job, breathe it, think it, sleep little…they need lots of support… Caregivers contend with personal feelings, grief, exhaustion, fear, and cannot escape from it.”
Claudia Nichols is the founder of Pilot Health Advocates, Inc, a private patient advocacy firm helping consumers navigate healthcare. As a soon-to-be Certified Senior Advisor, she is keenly interested in how caregivers can be supported. This support is critical now when “the task of the family caregiver is swiftly morphing into performing sophisticated skilled nursing tasks, including dialysis management, administering IV’s, wound care (an especially difficult task for amateurs and professionals alike) and other professional skills,” she says.
In the US, the monetary value of services caregivers provide for free, caring for older adults, is about $375 billion per year. This figure is twice the amount spent on homecare and nursing ($158 billion).. In 2007 the economic value of family caregiving was estimated at $375 billion, a figure that exceeded the total 2007 Medicaid expenditures of $311 billion and approaching total expenditures in Medicare of $432 billion. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).
The foundation of care in US and Canada is unpaid caregivers. Yet these caregivers are at serious risk themselves.
Ms. Nichols notes,”Caregiving is stressful and demanding for both caregiver and recipient. It is often consumes all free time
Informal/family caregivers are at risk for depression, other stress-related illnesses due to stress, fatigue and social isolation. Economic toll fails to account for emotional & financial impact of caregiving on caregivers themselves.” Ms. Rese agrees, “Not only do family caregivers provide unpaid care, but they also are out of pocket for incidentals, supplies, medicines, on and on.” Ms. Nichols asserts, “The worst case scenario is that caregivers go bankrupt,have breakdowns, become estranged from other family members, become ill themselves.”
Family caregivers are often thrown into the unknown, Ms. Rese feels. In Canada, 2007 statistics from the Health Council of Canada indicated that 40-50% of seniors with high needs have distressed caregivers. These same statistics say 2.7 million family caregivers are over the age of 45, 60% of these are women and 57% are employed in addition to caregiving. Of those, one third of the cared-for have high needs in mobility, physical and developmental delays and chronic conditions. Twenty percent of those receiving care at home have dementia, requiring 75 percent more care.
Many caregivers are single parents themselves, usually women with children, and sandwiched between elderly family members. Seven out of 10 caregivers are caring for someone over 50.
The complexity of caregiving has changed. According to Ms. Nichols, “nearly half family caregivers performed medical/nursing tasks with for those with multiple chronic physical anad cognitive conditions and 78% family caregivers provide medical/nursing tasks like managing medications including IV fluids and injection. Caregivers found wound care very challenging, more than a third (38%) wanted more training.” The rationale for their increased care was a desire to keep their family member out of nursing homes or long term care facilities.
The urgency of the situation for informal caregivers cannot be overstressed, Ms. Rese believes. “There is a crisis already, no beds to place seniors in, family caregivers running out of steam, lack of funding.”
“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers,” Rosalyn Carter stated. Giving caregivers a voice and influencing a political climate that is focused on “cost-saving” is imperative.
The National Family Caregivers Association now renamed Caregiver Action Network is a place to start. This organization was founded in 1993 by Suzanne Mintz and Cindy Fowler. This group has truly brought about awareness of the caregiving experience, becoming the go-to organization for anyone interested in learning about family caregivers. It was instrumental in establishing the National Family Caregivers Month in November and in 2000 the federal National Family Caregiver Support program was established. Caregiver Action Network’s mission is to “promote resourcefulness and respect” for family caregivers.
As Suzanne Mintz recalled: “We wondered why no one seemed to be focused on the fact that helping a loved one with a deteriorating illness had a very real impact on not only the person with the illness, but also on those of us who were primarily responsible for helping them. We were family caregivers, and we wanted someone to reach out to us, to tell us where to find helpful information and advice, emotional support, and real hands-on assistance when we needed it. NFCA was created to educate, support, empower, and speak up for America’s family caregivers so that all caregiving families can have a better quality of life.”