We all know that Alzheimer’s Disease takes a terrible toll on the patient. But we too often overlook the price it exacts from the patient’s caregiver.
Alzheimer’s degrades memory and thinking skills, and eventually the ability to carry out the simplest tasks, often forcing caregivers are to provide 24/7 care similar to that required by a young child. Frequently these caregivers are family members, and strain of that round-the-clock care is not always well recognized – by the health care system, the community, or by caregivers themselves.
A recent article in The New York Times told the story of Mark Donham and his wife Chris, who developed early onset Alzheimer’s. Mark quit his job and became Chris’ full-time caregiver, dressing her, doing laundry and scheduling social visits with friends. As Chris’ Alzheimer’s progressed, she got to a point where she no longer recognized her husband, which made Mark feel as though his heart was being ripped apart.
During this physically, emotionally and psychologically rigorous time, Mark found himself in the emergency room for what he believed was a heart attack. It turns out that the symptoms Mark was experiencing were the result of stress and strain. In caring for his wife, Mark had neglected to take care of himself.
Such caregiver burnout is a serious threat. Researchers have found that the immune system can be weakened by the stress and strain that accompany caregiving for up to three years after the caregiving ends. This makes caregivers more prone to major illnesses.
The symptoms of burnout can be hard for outsiders and the caregivers themselves to recognize. They include weight gain or loss, choppy sleep patterns, daily habits that go by the wayside, and clinical depression. Burnout can be made worse when a caregiver is ashamed or afraid to ask for help and opts to handle the situation alone.
Thankfully, new resources and research are emerging to help caregivers care for themselves. Institutes like the National Alliance for Caregiving and the Alzheimer’s Association are leading the way on research into how the disease impacts caregivers, and also offer services like online communities and a 24-hour help line.
Other services for caregivers include adult day care centers, which offer some respite by providing care and services to individuals with Alzheimer’s while their primary caregivers take care of themselves. There are also new programs that allow caregivers to go on vacations with their loved ones. For instance, The Insight Memory Care Center in Virginia began offering caregiver cruises last year. These cruises let caregivers enjoy a vacation to the Caribbean without leaving their loved ones behind.
This approach to care and caregiving is in line with what many experts say –the best antidote to burnout is building a team. Caregivers benefit from both outside and family resources when caring for someone with Alzheimer’s Disease. If possible, involve other family members in the care plan. For instance, someone can be in charge of managing the finances, while another person could be responsible for household chores, and another for direct care to the individual.
It takes a village to care for someone with Alzheimer’s Disease. In the coming years, new research, resources and awareness of caregiver burnout should help provide even more of an external framework for caregivers to build their network of support.