This is an interesting and thought provoking article."What we're seeing is that Alzheimer's is not a typical disease model," she says, "precisely because the health and well-being of the caretaker is affected as well as the patient. I know when I assume the care of an Alzheimer's patient, I am also caring for the caregiver."
With Alzheimer's, the Caregiver Is a Patient, Too
Alzheimer's Disease and other forms of dementia do not affect just the patient. These diseases gradually rob patients of memory and other intellectual abilities, leaving them unable to perform routine tasks. As the disease continues to destroy brain cells, patients increasingly depend on family members or others to carry out simple tasks like shopping and getting dressed. Ultimately, most patients will need complete care, adding to the caregivers burden.
Alzheimer's disease is the most common form of dementia, affecting up to 4 million Americans - and untold millions of family members and others who care for them. Physicians now recognize that Alzheimer's caregivers themselves often require care and attention, says Diana R. Kerwin, MD, Medical College of Wisconsin Assistant Professor of Medicine in the Division of Geriatrics and Gerontology.
"What we're seeing is that Alzheimer's is not a typical disease model," she says, "precisely because the health and well-being of the caretaker is affected as well as the patient. I know when I assume the care of an Alzheimer's patient, I am also caring for the caregiver."
Caregivers who accompany patients to the Froedtert Senior Health Program's Geriatric Evaluation Clinic, where Dr. Kerwin practices, are screened for "caregiver stress" and see a gerontologic nurse and social worker who will answer their questions, provide information and help create a plan for care of the patient. Caregivers are given a kit with information about support groups and community services, including adult day care, home care agencies, assisted living, skilled nursing facilities and respite care.
Stress, Depression Are Common
According to the Alzheimer's Association, more than 80% of Alzheimer caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression. It's not difficult to see why.
The national Family Caregiver Alliance terms caregiver depression "one of today's all-too-silent health crises." The alliance estimates that caregiving spouses between the ages of 66 and 96 who are experiencing mental or emotional strain have a 63% higher risk of dying than people the same age who are not caregivers.
"Alzheimer's causes progressive memory loss, and in the later stages patients can develop behavior problems," Dr. Kerwin says. "It's distressing for the caregiver to suddenly have to cope with their loved one's anger, hallucinations, paranoia, aggression or inappropriate conduct in public. It's upsetting when, as the disease progresses, the patient no longer recognizes the spouse or loved one."
Caregivers often experience feelings of guilt, believing they are not doing enough to help, she adds. Spouses and adult children feel grief and loss, not unlike a death in the family - except that instead of being sudden, it's spread out over years. Alzheimer's is a progressively worsening disease, but the rate of progression from mild to advanced can vary widely, from three to 20 years. As Alzheimer's progresses, the loss of brain function itself will cause death unless the patient has one or more other serious illness.
When the Child Becomes the Parent
For an adult child who cares for a parent with dementia, taking on the role of caregiver is a role reversal and takes some adjustment. "It can be a difficult transition for a child to take on the role of 'parent' and decision-maker," Dr. Kerwin says. "The child often needs to be empowered to step in and begin caring for their ailing parent - making sure their parent takes his or her medication, for instance, or telling their parent they should not drive, and making difficult decisions about when the parent is no longer able to safely live alone."
Those caregivers are often already juggling multiple responsibilities with their own spouses, children and careers. In some cases, adult-child caregivers with siblings feel resentful if they must bear the brunt of their parent's care, Dr. Kerwin says. If the adult-child caregiver is the only sibling living in the same city as the parent he or she often feels isolated, overwhelmed and underappreciated.
And sometimes, whether the caregiver is a spouse or an adult sibling, out-of-town siblings or other family members who see the parent infrequently may think the caregiver is exaggerating the extent of the Alzheimer's patient's decline. The out-of-town family members may feel guilty about not being able to help from a distance, and when they do visit, they may criticize or ask to change the care their parent is receiving.
Caregivers are often fatigued from carrying out their new responsibilities, Dr. Kerwin says. "I see them neglecting their own health. It's not unusual for caregivers to suffer not only depression but also higher levels of hypertension. We recommend they have annual physicals, during which they should be sure to tell their primary care physician that they are caregivers. We also recommend they participate in support groups and learn about the community resources available."
Other concerns caregivers regularly express are loss of concentration due to their caregiving responsibilities and fear that they themselves might eventually get the disease.
Warning Signs for Caregivers What are some warning signs of caregiver stress? According to the Alzheimer's Association, they include:
Anger
Anxiety
Denial
Depression
Exhaustion
Health problems
Irritability
Lack of concentration
Sleeplessness
Social withdrawal
Caregivers who regularly experience these conditions should seek help from their physician, says the Alzheimer's Association.
Financial Strain Heightens Burden
In some families, the presence of Alzheimer's disease also brings financial problems that can add to stress and depression. Caregivers sometimes give up paying jobs for the unpaid one of caring for a loved one. They often find additional responsibilities are thrust on them, such as overseeing medications for their patient, knowing if or when the patient's care should be transferred to a nursing home, and taking on power of attorney duties along with living wills and advanced directives that specify whether terminal patients should undergo extreme measures to keep them alive.
The national Family Caregiver Alliance estimates that approximately 80% of the long-term care in the United States is provided without compensation, sometimes around the clock.
"The responsibilities are vast," Dr. Kerwin notes. "It's important for caregivers to regularly take some time for themselves, away from their caring responsibilities."
Barbara Abel
HealthLink Contributing Writer
The Medical College's Center for Healthy Communities, along with the local non-profit organization Community Care for the Elderly Partnership, has developed a Caring for Caregivers Program to support Medicaid- and Medicare-eligible residents in the community who care for frail relatives, often those with dementia. For more information, contact Tovah H. Bates, PhD, Assistant Professor, Family & Community Medicine, at 414-456-4305, or Community Care for the Elderly at 414-385-6600.
For more information on this topic, see the HealthLink articles End-Stage Alzheimer's - the Long Goodbye and Current Research on Alzheimer's, Memory Loss, and Aging.
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