PORTLAND – Alzheimer’s disease and other dementias are feared by most as we prepare to age gracefully with hopes and dreams. Unfortunately, Alzheimer’s affects 1 in 7 persons, and the greatest risk factor is advancing age.
The disease reaches far beyond the person with the dementia to the family and friends who provide 80 percent of the care, mostly unpaid, to support an affected person to remain at home.
Maine is the oldest state in the nation by median age, with an estimated 37,000 persons with Alzheimer’s or another dementia. Persons with dementia progressively deteriorate, mentally and physically, over the course of one to 15 years. As a result, family and friends assume an unplanned and unpaid long-term career in caregiving.
The Alzheimer’s Association reported in 2011 that this equated to 67,456 Maine caregivers who provided 76,819,336 hours of care. The Alzheimer’s Association values this care at $12.12 per hour, so the estimated economic value of unpaid care provided to Maine residents with Alzheimer’s and other dementias in 2011 was $931,050,350.
For the person with dementia, caregivers make the difference between living at home or placement in a nursing home. They make the difference between the affected person feeling confused, agitated and lost versus contented, alive and whole.
Typically, caregivers have not been trained to address the unique behavioral needs of persons with dementia. Caregivers give unselfishly but pay a price with deteriorating health, greater risk for chronic disease, shortened life expectancy, isolation and lost wages.
They often feel stressed, burdened and depressed. In Maine, this is especially true since we have a culture of “taking care of our own” and many only reluctantly ask for help. If this isn’t enough, caregivers typically balance this work with their “real” job and caring for children.
Policymakers must not lose sight that the caregiver is the “hidden patient.” While defraying cost to public programs by providing “free” care, this same caregiver may be incurring additional health care expenses as a direct result of long-term physical and emotional stress.
If you are a policymaker, beware of saving dollars in the long-term care sector by building long-term care services on the backs of unpaid caregivers. These backs wear out and eventually cost the long-term care system more dollars with nursing home placement.
There are existing resources that provide guidance and support, but caregivers may need to be directed to them and encouraged to participate. The Maine Savvy Caregiver Program is one such resource.
This is a 12-hour evidence-based training program for family caregivers of persons with Alzheimer’s and other dementias. Caregivers meet in groups of six to 10, two hours per week for six weeks. A trained facilitator leads the class.
The program is offered through a statewide partnership between Maine’s Office of Aging and Disability Services, Maine’s Agencies on Aging and the University of Southern Maine School of Nursing.
It is partially funded by a grant from the U.S. Administration for Community Living, so there is no current charge to participate. This funding stream will eventually end, but the needs of caregivers will not, with Maine’s population age 85 and older projected to increase 52 percent by 2020.
We might think that issues associated with caregiving are not going to affect us — however, if you have an aging parent, spouse, partner, sibling or neighbor, dementia could be knocking at your door. As a state, we need to explore public and private options to fund ongoing caregiver resources.
More than 1,000 Maine caregivers participated in the Savvy Caregiver Program over the past three years. The program outcomes are overwhelmingly positive. Caregivers are more knowledgeable about dementia, more confident and satisfied in their role, less depressed and better able to ask for help and take care of themselves.
Five months after taking the Savvy Caregiver training, one rural caregiver, a woman who had been caring for her husband for three years and was at a loss for where to go for help, put it this way:
“I’ve learned to reduce some of the stresses in my life. I’m relearning to say ‘no.’ My attitude is more understanding because I have a better grasp of what the world of someone with dementia may be like and I know how to help. I wish I knew about this earlier.”
All family caregivers should be applauded for the work they do night and day. They should also be supported with resources.
Linda Samia, Ph.D., R.N., is assistant professor of nursing and Savvy Caregiver Program evaluator at the University of Southern Maine School of Nursing in Portland.