Alzheimer’s disease is a cruel affliction, robbing individuals of memory, motor activity, and the ability to plan and organize. Children, families, and friends can become strangers; a cherished home containing a lifetime of memories can turn into an odd, uncomfortable environment.
Currently, some 5.3 million Americans have Alzheimer’s. It is the most common form of dementia, a term describing a decline in a person’s mental ability severe enough to interfere with daily living.
Though Alzheimer’s is not a normal part of aging, most of those affected are over 65 years of age, and with our population becoming older, that number is likely to increase substantially. Estimates are that by 2025 another two million seniors will become afflicted.
It is the fifth leading cause of death for people over 65, and the only cause of death among the top 10 in America that cannot be prevented, cured, or even slowed, according to the Alzheimer’s Association.
While the toll of Alzheimer’s on individuals is cruel and tragic, the effects of the disease go far beyond the patients, to family members and friends who act as caregivers. That includes many people: More than 15 million Americans provide unpaid care for people with dementia.
Caregiving can be insidious and difficult, and it can catch people by surprise: a person can become a caregiver without actually realizing that’s what he or she is doing. It may begin with small tasks, but as the patient declines, a caregiver starts doing many more of the ordinary functions previously done by the patient, such as shopping, cleaning, paying bills, or driving to appointments. A caregiver can become overwhelmed before they ever realize the huge amount of time and energy spent in providing care.
A key step in caregiving is the early recognition that a loved one is affected by the disease. Yet the slow progression of Alzheimer’s, which can delay detecting the onset of the disease, and the denial by some family members that mother, father, or grandmother doesn’t have the condition, or “isn’t that bad,” can present barriers to a timely diagnosis and thus prevent early action by the family.
The importance of early recognition is that it gives everybody a chance to plan, to understand what’s likely ahead, and what resources might be needed – before a crisis occurs. Recognition can begin with the individual’s primary care provider and may include a physician specializing in geriatric medicine or a behavioral health specialist.
Managing the care and talking together are some of the most important things caregivers and families can do. While it’s hard for families to come to terms with the disease, finding resources to support the caregiver is critically important. Without caregivers who are supported, the person being taken care of isn’t going to get the care he or she needs.
Those who are or will be providing care must recognize that the emotional and physical costs of caregiving can be enormous – and harmful. Caregiving can actually become a form of chronic stress, which can lead to depression, anxiety, and poor physical health. Neither the patient nor the caregiver is well served with those conditions. Creating additional stress, and possibly a financial burden, could be the cost of hiring a caregiver or dealing with the lost income of a wage earner in the family who must become a full-time caregiver.
Caregivers should consider practicing what we call “therapeutic selfishness” – the idea that they take whatever time is needed to care for themselves, by paying attention to their own physical, emotional, and social well-being. By doing so, their health will be better, they will be better able to provide the necessary care, and the loved one will receive better care.
The search for resources that can help in providing care can start with the loved one’s primary care provider or the local council on aging. Caregivers and families should not feel they have to ‘go it alone.’ Assistance is available; it’s a matter of finding what’s best for the patient, the caregiver, and the family and the particular situations each face.
For more information, visit the Caregiving Center of the Alzheimer’s Association at www.alz.org/care or the Family Caregiver Alliance at www.caregiver.org. For a video discussion and additional resources, visit www.physicianfocus.org/alzcaregivers.
Susan Hardy, M.D., is associate medical director, and Brenda King, Psy.D., is behavioral health specialist with Summit ElderCare in Worcester, one of six PACE programs (Programs of All-Inclusive Care for the Elderly) in Massachusetts. Physician Focus is a public service of the Massachusetts Medical Society. Readers should use their own judgment when seeking medical care and consult with their physician for treatment. Send comments to PhysicianFocus@mms.org