Survey Finds Large Communication Gap Between Doctors and Alzheimer's Caregivers

Alzheimer's Association
Thursday, 7 June 2001

Gap may hinder more effective treatment of people with Alzheimer's

A new survey finds that caregivers of family members with Alzheimer's disease are not receiving all the information they want from primary care physicians as they deal with the challenges of caring for a loved one who has Alzheimer's, although physicians believe they are meeting caregivers' needs.

Substantially less than half of caregivers surveyed said they actually received information from physicians about their top concerns. But most physicians interviewed for the survey said they do provide the information on those issues. The survey also found a large gap between caregivers and physicians on whether physicians provided recommendations on how to cope with caregiving.

The Alzheimer's Association commissioned the survey to assess the perceptions of Alzheimer caregivers and physicians about how they communicate on Alzheimer's treatment and caregiving issues.

"Alzheimer caregiving is particularly hard work, and caregivers face enormous physical and emotional stresses in taking care of their loved ones," says Orien Reid, chair of the Alzheimer's Association's national board of directors and a former Alzheimer caregiver. "Caregivers need information and support to cope with this devastating disease. Not having all the information they need decreases their ability to make sure family members are receiving the most effective treatment and care and increases their guilt and frustration as they try to figure out how to cope with the disease."

Five hundred primary care physicians who treat elderly patients, including those with Alzheimer's disease, and 376 Alzheimer family caregivers from across the United States were interviewed in April and May by Roper Starch Worldwide. The survey results were presented today at a media briefing on Alzheimer's disease held by the American Medical Association. The survey was made possible with the support of Janssen Pharmaceutica Products and Ortho-McNeil Pharmaceutical.

The survey found large gaps between what caregivers and physicians say they discussed on treatment and caregiving issues when family members were first diagnosed with Alzheimer's disease:

- 57 percent of caregivers said they wanted information about what to expect as the disease progressed, only 38 percent said they received such information. But 83 percent of physicians said they do provide information on that issue to caregivers.

- 52 percent of caregivers said they wanted information about the effect of Alzheimer's on a person's ability to do daily tasks and to cope. But only 28 percent of caregivers said they received information on that issue from physicians, while 91 percent of physicians said they provide such information.

- 46 percent of caregivers said they wanted information about medications and what to expect from them. 41 percent of caregivers said they actually received information, but 91 percent of physicians said they talked to caregivers about the issue.

- 55 percent of caregivers said they received recommendations from their doctor related to caregiving from their physicians, but 97 percent of the physicians surveyed said they gave such recommendations.

- 31 percent of caregivers said they got recommendations from their doctor on where to find help and services, but 88 percent of physicians said they provided such recommendations.

- 24 percent of caregivers said they received recommendations about support groups from physicians, but 74 percent of physicians said they provided such advice to caregivers.

At the same time, the survey did find several positive results about physicians' awareness of Alzheimer's disease and concerns about caregivers and about the importance of early diagnosis of the disease:

- 80 percent of caregivers said physicians wanted to hear their concerns and questions when they first discussed the possibility of a family member having Alzheimer's, and 80 percent of caregivers said physicians are knowledgeable about the disease.

- 90 percent of caregivers and 94 percent of physicians agreed that early diagnosis of Alzheimer's is important, primarily because treatment is more effective when started early in the disease process and can help stabilize the disease. However, physicians are not fully communicating why early diagnosis of Alzheimer's is important. While 88 percent of physicians said early diagnosis is important because treatments are more effective when started early, only 53 percent of caregivers gave that reason.

- Also, 81 percent of physicians said they considered cholinesterase inhibitors – currently the only FDA-approved class of drugs available to treat symptoms of Alzheimer's disease – at least somewhat effective.

"The good news from this survey is that unlike the not-too-recent-past, it appears the vast majority of physicians are now fairly knowledgeable about Alzheimer's, recognize the importance of early diagnosis and of early treatment and understand the benefits of communicating with family caregivers," said Reid, whose mother died of Alzheimer's. "But the bad news is that while doctors think they are providing caregivers the information they want and need, something in the communication process is hindering caregivers from getting the information in a way that is useful to them."

"We are making great progress in increasing awareness about Alzheimer's,"said Reid. "But we must continue to educate caregivers so that they are empowered with the knowledge they need to ensure the most effective care for family members, and physicians need to be more sensitive to the needs of caregivers that they may not be aware of."

"This is not a one-time process but must be an ongoing communication process throughout the course of the disease. We need to get information to families in the right amount, at the right time, and in a way they can easily understand and use. Doctors and families don't have to go through this alone. We encourage physicians to tell caregivers to call the Alzheimer's Association for information and help, including educational programs and support groups, not only to help them take care of their loved ones but also to take care of themselves," Reid added.

The toll of Alzheimer's disease is not limited to those with the disease. Other research has shown that caregivers have more health problems than others their age because of the physical and emotional strain of caregiving. They report 46 percent more physician visits, use 70 percent more prescription drugs, are more likely to be hospitalized than their peers and are three times more likely to become clinically depressed than others in their age group. One study of older persons over a period of four years found that elderly spouses who are suffering from the strain of caregiving are 63 percent more likely to die than other spouses of the same age.

Alzheimer's disease, a progressive, degenerative disease of the brain, affects four million Americans, and 19 million Americans say they have a family member with the disease. As the Baby Boom generation moves into the age of highest risk of the disease, Alzheimer's could affect up to 14 million baby boomers by 2050. Alzheimer's affects one in ten people over age 65 and nearly half of those over age 85.

The disease process may begin in the brain as many as 20 years before the symptoms of Alzheimer's appear. A person will live an average of 8 years and as many as 20 years once the symptoms appear. Because symptoms of Alzheimer's disease usually appear several years before the disease is diagnosed, many patients do not receive medications that could ease their symptoms and possibly delay their admission to a nursing home or other facility.

The average lifetime cost of Alzheimer's disease, per person, is $174,000. The total annual cost of Alzheimer care in the United States today is at least $100 billion.

The Alzheimer's Association is the premiere source of information and support for the four million Americans with Alzheimer's disease. Through its national network of chapters, it offers a broad range of programs and services for people with the disease, their families and caregivers and represents their interests on Alzheimer-related issues before federal, state and local government and with health and long term care providers.

The largest private funder of Alzheimer research, the Alzheimer's Association has committed more than $100 million toward research into the causes, treatment, prevention and cure of Alzheimer's.

In addition to a comprehensive Web site at www.alz.org, the Alzheimer's Association has a national 24-hour information and support line at (800) 272-3900 that offers such options as immediate connection to a care consultant and assistance in languages other than English.

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org