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Caregivers Value Quality of Life in Alzheimers

Wed, 10/11/2000 - 12:00am — Karen Stevenson
Description: 

People who care for the 4 million Americans suffering from Alzheimer's disease consider quality of life just as important as efforts to prolong the patient's life when choosing treatment options, according to researchers in a study reported in the October 10th issue of Neurology. Lead author Dr. Jason H. T. Karlawish, of the University of Pennsylvania Health System in Philadelphia, and his team interviewed 40 primary caregivers of Alzheimer's disease patients, none currently living in a nursing home. The caregivers were asked how their choice of treatment was affected by the potential to lengthen their charge's overall survival, to slow the progression of the disease, or to delay the transfer of the patient to a nursing home. The investigators also measured the caregivers' willingness to risk the development of negative side effects from a treatment in order to affect the overall course of the disease's progression.

Over 50% of caregivers said that improving the patient's quality of life was a more important treatment benefit than either lengthening survival time or delaying a move to a nursing home. Other benefits similarly valued included preserving the patient's memory; ability to communicate and recognize the family; improving the patient's mood; and improving the ability to manage basic daily physical activities. Karlawish and his colleagues also found that the caregivers' ability to assess quality-of-life issues was influenced by his or her own level of depression and burden--so that their judgment when choosing treatment might be affected by a desire to alleviate their own related stresses.

Overall, most caretakers were willing to risk possible side effects in order to delay the disease progression by 1 year--with the goal of delaying a move to a nursing home playing a major role in the caregivers' assessment of quality of life.

People who care for the 4 million Americans suffering from Alzheimer's disease consider quality of life just as important as efforts to prolong the patient's life when choosing treatment options, according to researchers in a study reported in the October 10th issue of Neurology. Lead author Dr. Jason H. T. Karlawish, of the University of Pennsylvania Health System in Philadelphia, and his team interviewed 40 primary caregivers of Alzheimer's disease patients, none currently living in a nursing home. The caregivers were asked how their choice of treatment was affected by the potential to lengthen their charge's overall survival, to slow the progression of the disease, or to delay the transfer of the patient to a nursing home. The investigators also measured the caregivers' willingness to risk the development of negative side effects from a treatment in order to affect the overall course of the disease's progression.

Over 50% of caregivers said that improving the patient's quality of life was a more important treatment benefit than either lengthening survival time or delaying a move to a nursing home. Other benefits similarly valued included preserving the patient's memory; ability to communicate and recognize the family; improving the patient's mood; and improving the ability to manage basic daily physical activities. Karlawish and his colleagues also found that the caregivers' ability to assess quality-of-life issues was influenced by his or her own level of depression and burden--so that their judgment when choosing treatment might be affected by a desire to alleviate their own related stresses.

Overall, most caretakers were willing to risk possible side effects in order to delay the disease progression by 1 year--with the goal of delaying a move to a nursing home playing a major role in the caregivers' assessment of quality of life.