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Alzheimer’s disease is the fifth leading cause of death for people aged 65 and older, and is 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.
The toll of this disease on patients is cruel and tragic, but the effects of Alzheimer’s go far beyond the patient, to family members and friends who act as caregivers. To provide some perspective on the impact of this condition on caregivers, the June episode of Physician Focus with the Massachusetts Medical Society features two health care professionals from Summit ElderCare in Worcester. Founded and sponsored by Fallon Health as an alternative to nursing home placement, Summit ElderCare is one of six PACE programs (Programs of All-Inclusive Care for the Elderly) in Massachusetts.
Susan Hardy, M.D., a board-certified internist with a subspecialty in geriatric medicine and Summit’s Associate Medical Director, and Brenda King, Psy.D., a clinical psychologist with specialties in health psychology and gerontology and Summit’s Behavioral Health Specialist, join program host and primary care physician Bruce Karlin, M.D. to discuss Alzheimer’s, the toll it can take on caregivers and families, and steps they can take to ease the burden of caregiving.
“A lot of times people actually move into the role of caregiver without realizing that that’s what they’re doing,” says Dr. King. And many are affected: More than 15 million Americans provide unpaid care for people with dementia, according to the Alzheimer’s Association.
“Caregiving for many people is really quite insidious,” she says. “It starts off small, with a few manageable things, but as the person with dementia declines, other people are doing many more of the ordinary functions of the person. Caregivers become overwhelmed before they ever realize they’re spending so much time and energy doing it.”
The doctors warn that because the disease progresses slowly, the onset of dementia or Alzheimer’s in a person may not be evident to others at first. And the denial by some family members --- that mother, father, or grandmother doesn’t have the condition -- can present additional difficulties and another barrier to early action.
“Knowing early is helpful,” says Dr. Hardy. “There are treatments for Alzheimer’s and dementia, but more important, it gives everybody a chance to plan, to understand what’s likely ahead, and what resources you might need before you end up in a crisis.”
Adds Dr. King: “Managing the care and talking together is one of the most important things families do. When people have a hard time coming to terms with it [Alzheimer’s], part of it is because they don’t know where to go or what to do. Finding resources is difficult, but it’s really important.”
Support of caregivers is critical, she says, because “without caregivers who are supported, the person that they’re taking care of isn’t going to be taken care of.”
The doctors agree that the emotional, physical, and financial 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.
The doctors’ prescriptions are clear: caregivers should take care of themselves and seek resources to help provide the care.
Dr. King recommends what she calls “therapeutic selfishness” – the idea that caregivers need to take time to focus on themselves, to care for themselves, by paying attention to their own physical, emotional, and social well-being. By doing so, their health will be better and they will be better able to care for the patient.
Dr. Hardy’s advice: Act quickly and don’t try to ‘go it alone’ as a caregiver. “It’s important to seek help early and seek education about what’s likely to happen. Caregivers have a very difficult job. There’s help available and they should find it.”
Watch the above video for and in-depth discussion, including conversation on what families can do when some members are in denial about the condition; how a team approach, such as the one used at Summit ElderCare, can enhance care; and specific steps to take in exercising “therapeutic selfishness” in caring for the caregiver.
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MMS/Richard Gulla
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