Making Alzheimer's treatment decisions - Caregiving

USA Today (Society for the Advancement of Education), Feb, 2004

A caregiver's assessment of an Alzheimer's patient's quality of life is the key factor in determining if and why some caregivers decline to use a treatment that slows progression of the patient's disease, according to a study from the Institute on Aging at the University of Pennsylvania School of Medicine, Philadelphia. The findings reveal that caregivers are most likely to decline medications slowing Alzheimer's disease if they assess the patient's overall quality of life as fair or poor. For example, a husband may stop treatment on his spouse when she no longer can remember family members and only can communicate with them as strangers. When there is a risk associated with the medication, the number of caregivers who decline treatment rises substantially.

"Caregivers have always played a vital role in providing direct care. That is why we call them 'caregivers.' They also make decisions for patients," says Jason Karlawish, assistant professor of geriatric medicine. "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."

It is estimated that about 5,000,000 Americans have Alzheimer's disease. Another 360,000 new cases are diagnosed each year. The number of Alzheimer's patients in the U.S. is projected to increase to 16,000,000 over the next 50 years. Annual costs for direct medical care are estimated at $50,000 per patient. Current treatments used to slow the progression of the disease include Vitamin E and cholinesterase inhibitors. However, each has limitations: they are minimally effective for the most severe stages, and have different side effects.

Besides patient status, a caregiver's characteristics--mental health, financial burden, and race--affect the decision to decline a treatment when there is a risk of side effect involved. Caregivers suffering from depression--which can be a result of the stress and burden of caregiving--are more likely to decline a treatment. Financial burden and race also are factored into altering care. 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 as much as a few hundred dollars per refill; nonwhites also were more likely to say no to treatment.

"Understandably, we focus on starting treatment early. But we need to think about the other side of treatment--stopping it," Karlawish contends. "Now that we understand why caregivers refuse a dementia-slowing treatment, we can better plan for patient care and develop future ... guidelines that incorporate the caregiver's experience. 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.... When you have one person with Alzheimer's disease, you have at least two people to take care of."