"Caregivers have always played a vital role in providing direct care. That is why we call them caregivers. They also make decisions for patients," said Jason Karlawish, MD, an Assistant Professor of Medicine in Geriatrics at Penn's School of Medicine and lead author of the study. "In fact, by the moderate to severe stages of the disease, caregivers make most of the treatment decisions, including when to say 'no' to a particular therapy."
The two-year study evaluated 102 caregivers of patients with mild to severe stages of Alzheimer's disease. Seventeen percent of these caregivers did not want their relatives to take a risk-free medication that could slow the disease, and half of the caregivers did not want their relatives to take medication with a risk of side effects (a three percent risk of gastro-intestinal bleeding.) Patients were evaluated using interviews that assessed the severity of their dementia. Quality of life was measured using both a single question to assess overall quality of life, and a 13-point scale that measured, among other things - physical health, energy, mood, memory, and the ability to do chores, have fun, and interact with family and friends.
Among the other key study findings were that a caregiver's characteristics - mental health, financial burden and race - also drove their decision to decline a treatment when there was a risk or side-effect to the treatment. Caregivers suffering from depression - which can be a result of the stress and burden of caregiving - were more likely to decline a treatment. Financial burden and race were also factors more likely to lead to declining treatment: study participants who ranked themselves as having "just enough" or "not enough" funds at the end of the month were more likely to decline treatment, where prescriptions can cost a few hundred dollars per month; non-whites were also more likely to decline treatment, although no data confirmed why this was the case.
"Understandably, we focus on starting treating early. But we need to think about the other side of treatment - stopping it. Now that we understand why caregivers refuse a dementia-slowing treatment, we can better plan for patient care and develop future treatment guidelines that incorporates the caregiver's experience," said Karlawish. "This planning could ultimately help caregivers and physicians in determining an appropriate time to end treatment for Alzheimer's disease, based on factors influencing quality of life. It also shows that managing the health of the caregiver is an integral part to treating a patient with Alzheimer's disease. When you have one person with Alzheimer's disease, you have at least two people to take care of."
Funding for this study was provided through a Paul Beeson Physician Faculty Scholars Award and the National Institute on Aging.
It is estimated that about five million Americans are currently living with Alzheimer's disease. Another 360,000 new cases are diagnosed each year. The number of Americans living with Alzheimer's disease is projected to increase to 16 million over the next 50 years. Annual costs for direct medical care of a patient with Alzheimer's disease are estimated at $50,000. Current treatments used to slow the progression of the disease include Vitamin E and cholinesterase inhibitors - Aricept, Exelon and, possibly, Memantine (which is currently under review by the Food and Drug Administration.) However, each treatment has limitations: all are minimally effective for the most severe stages of Alzheimer's disease, and each has different side effects.
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