The first research to examine how caregivers view Alzheimer’s disease treatment shows they highly value maintaining the quality – rather than simply the length – of life for Alzheimer’s patients, and they are willing to accept risks to slow the disease. The study is published in the October 10 issue of Neurology, the scientific journal of the American Academy of Neurology.
The authors of the study concluded that “Caregivers generally are willing to tolerate notable amounts of risk to slow AD progression. Factors that describe the caregiver’s experience and perception of the patient and the patient-caregiver relationship influence how they want to treat the disease. This information may be useful for decisions about how to study and prescribe AD treatments.”
The study asked 40 caregivers to compare two possible benefits from a hypothetical Alzheimer’s drug. Nearly 70 percent said delaying nursing home care was a more important benefit than an additional year of life. More than half said there were treatment benefits they would rank even higher than either of those options. These include quality-of-life benefits such as maintaining memory, the ability to communicate with and recognize family, and the ability to perform daily tasks.
“This area of research may help us decide which new treatments should be developed, as it helps us better answer ‘What is success?’ for Alzheimer’s patients,” said Jason Karlawish, M.D., lead author of the study from the Alzheimer’s Disease Center at the University of Pennsylvania Health System. “It’s very complex and difficult to answer, especially when you remember the disease has no prevention or cure, and the patients may be unable to make treatment decisions. Slowing the progression is often the number one goal.”
The study found that although “66% of the caregivers feel that survival is at least a ‘very important’ outcome of treatment,” 69% questioned also felt that a delay in placing the patient in a nursing home was even more important than survival.
“We’re just starting to study quality of life in the Alzheimer’s field,” said Karlawish, “But it’s what matters to most people. Without it, the extra drugs and therapies don’t mean as much.” The study also showed most caregivers would take some risks to see benefits from the hypothetical drug, although the risks they would accept ranged widely from mild bleeding to the need for a transfusion to possible death.
Caregivers who were adult children, more educated and working 20 hours or more per week were more tolerant of risks, as were those with a family history of the disease. “It came as somewhat of a surprise that caregivers were willing to make tough decisions to fight a tough disease,” said Karlawish. “We’ve typically thought of caregivers as more of protectors, rather than risk-takers.”
Alzheimer’s disease currently affects one in 10 people over age 65 and nearly half of those over age 85. More than 19 million Americans say they have a family member with the disease, and 37 million say they know somebody affected with Alzheimer’s. The number of Americans with Alzheimer’s disease is expected to grow from four million today to 14 million by 2050 if no cure or prevention is found.
Alzheimer’s disease is a gradual degenerative brain disease. Early diagnosis is important as early intervention and treatment can improve the patient’s quality of life. People with Alzheimer’s may experience memory loss, difficulty performing familiar tasks, problems with language, disorientation to time and place, and significant mood or personality changes. Most people with Alzheimer’s disease eventually become unable to care for themselves.
The American Academy of Neurology, an association of more than 16,500 neurologists and neuroscience professionals, is dedicated to improving patient care through education and research.