Caregivers Value Quality of Life in Alzheimer Therapy
 

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By Alan Mozes

NEW YORK (Reuters Health) - 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.

`We're just starting to study quality of life in the Alzheimer's field, but it's what matters to most people. Without it, the extra drugs and therapies don't mean as much,'' lead author Dr. Jason H. T. Karlawish, from the University of Pennsylvania Health System in Philadelphia, said in a statement.

Karlawish and his team interviewed 40 primary caregivers of Alzheimer's disease patients. None of the patients were living in a nursing home. The team reports their findings in the October 10th issue of Neurology.

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, however, 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 may 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.

``What is success for Alzheimer's patients?'' Karlawish commented. ``It's very complex and difficult to answer, especially when you remember the disease has no prevention or cure.''

Alzheimer's disease affects 1 in 10 people over the age of 65. The total number of affected people in the US is expected to grow to 14 million by 2050 in the absence of prevention or cure.

SOURCE: Neurology 2000;55:1008-1014.

 


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