Sep 13, 2012

Survey Finds Caregivers Misperceive Behavior Changes as Normal Aging

“Caregivers need to be prepared for the expected and, moreover, the unexpected,” Hall said. “Managing and influencing outcomes of both cognitive and behavioral symptoms of Alzheimer’s disease is all about getting educated, getting resources and also taking care of themselves.”

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Survey Finds Caregivers Misperceive Behavior Changes as Normal Aging
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Just like many people incorrectly believe memory loss is a fact of life in growing older, survey results released today by the Alzheimer’s Foundation of America (AFA) reveal that many caregivers also mistakenly interpret various behaviors as a normal part of aging—rather than as symptoms of Alzheimer’s disease or another dementia.

As a result, they now believe those false impressions delayed their loved one’s diagnosis of the incurable brain disorder.

Conducted by Harris Interactive for AFA, the survey of relatives and friends who care for people with dementia examined how behavioral symptoms compare to cognitive symptoms such as memory loss and confusion in their impact on diagnosis, disease management, caregivers’ well-being and other issues.

Respondents report the most frequent behaviors, exhibited daily to about once a week, are irritability, sundowning or late-day confusion, anxiety and sleeplessness.

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Survey Finds Caregivers Misperceive Behavior Changes as Normal Aging, Delaying Diagnosis of Alzheimer’s Disease

The survey, “Alzheimer’s Caregivers: Behavioral vs. Cognitive Challenges,” found that only 14 percent of respondents feel they are managing the person’s behavioral symptoms better than their cognitive ones. And it revealed that healthcare professionals are suggesting a multi-pronged treatment for behavioral symptoms, including non-drug interventions—an approach that clinicians are advancing more than some medications and that many caregivers say works well.

“The survey findings sound another loud wake-up call that we must address this public health crisis, and reinforce that education and early detection must be among the nation’s key strategies in tackling it,” said Eric J. Hall, AFA’s president and CEO. “Families can’t afford missed opportunities for help that can result from a timely and proper diagnosis.”

Similarly, the results bolster the urgency of several objectives of the historic National Plan to Address Alzheimer’s Disease, released last May by the federal government, including greater awareness and education, early diagnosis, and limiting use of antipsychotic drugs.

“Behavioral disturbances are some of the most devastating consequences of Alzheimer's disease and other dementias. The earlier they are recognized and addressed, the better,” said Jacobo Mintzer, M.D., chairman of AFA’s Medical and Scientific Advisory Board and co-director, Alzheimer’s Research and Clinical Programs at the Medical University of South Carolina and staff physician at the Ralph H. Johnson VA Medical Center in Charleston, SC.

According to the survey, two-thirds of respondents who provided care prior to diagnosis believed their loved one’s behaviors were “just a normal part of aging.” Among them, 67 percent said these thoughts delayed obtaining a diagnosis. Most often, mostly or only cognitive symptoms (40 percent) or a combination of cognitive and behavioral symptoms (40 percent) triggered a doctor’s visit, far outweighing mostly or only behaviors (12 percent) as a factor.

To cope with behavioral challenges, 80 percent of caregivers report that the clinician suggested medication: either a prescribed name brand drug (67 percent) or a generic version (30 percent) specifically for Alzheimer’s disease or a related dementia; or medications to treat specific behaviors aside from those approved for Alzheimer’s disease (26 percent), such as anti-depressants (45 percent), anti-anxiety medications (28 percent), antipsychotics (21 percent) and mood stabilizers (12 percent).

While the U.S. Food and Drug Administration (FDA) has not approved any medications to specifically treat the behavioral symptoms of dementia, doctors are permitted to prescribe a drug for a different indication than what the FDA has approved it for, known as off-label use.

Moreover, among caregivers who confide in physicians or social workers, 82 percent of physicians and, more so, 92 percent of social workers have suggested behavioral modifications, environmental changes and other non-drug interventions, such as communication techniques, support groups, reducing noise and clutter, and activities like music and artwork.

“Behavioral treatments are the treatment of choice,” Mintzer said, “but unfortunately, these approaches are not always feasible or effective. When neuropsychiatric symptoms of dementia like severe agitation, aggression and severe symptoms of depression appear, they can be a real challenge to a patient’s and caregiver’s quality of life, be life threatening and become a medical priority so in those cases most clinicians will use pharmacological interventions.”

But, he added, “A savvy clinician should have all available tools at his/her disposal to provide the best care available. People with dementia deserve nothing less.”

What do caregivers find works best for behavioral symptoms? About one-third of respondents believe non-drug options sticking to routines (53 percent). Among individuals with dementia taking at least one medication, 47 percent of caregivers say medications to treat specific behaviors other than those specifically approved for Alzheimer’s disease help a lot—more than double those (21 percent) who say an Alzheimer’s-specific drug medication helps a lot.

While nearly half of caregivers say they manage both classes of symptoms equally well, fewer feel they are coping well with more severe behaviors: irritability, anger, inappropriate sexual behavior, aggression, personality changes, and paranoia and/or suspiciousness.

Aggression (59 percent) and fear of self-harm to the diagnosed person (54 percent) or injury to other family members (48 percent) would be the most likely reasons for long-term care placement of loved ones. Women (35 percent) are less likely than men (48 percent) to feel they can handle aggressive behavior.

The behaviors by people with dementia are triggered most often by frustration followed by unfamiliar surroundings and a “desire to go home,” the majority of caregivers believe.

Concerning the impact on their own lives, caregivers are rocked by both behavior and cognitive symptoms, with each equally impairing their own health—in particular, causing fatigue and difficulty sleeping—as well as limiting their social and work lives.

“Caregivers need to be prepared for the expected and, moreover, the unexpected,” Hall said. “Managing and influencing outcomes of both cognitive and behavioral symptoms of Alzheimer’s disease is all about getting educated, getting resources and also taking care of themselves.”

Currently, an estimated 5.1 million Americans are living with Alzheimer’s disease, and, with advanced age posing the greatest risk, the incidence is expected to skyrocket as the nation’s population ages. Informal caregivers provide more than 80 percent of all long-term care services at a market value of $450 billion annually.

About the Survey
Harris Interactive conducted the online survey between April and May 2012 of a nationwide cross-section of 750 non-professional caregivers—relatives or friends—of individuals with Alzheimer’s disease or a related dementia who live alone or with the caregiver; females reflect 61 percent of caregivers and 62 percent of diagnosed individuals. On average, respondents spend about 57.2 hours per week on caregiving responsibilities and have been providing care for slightly more than four years. The survey was funded in part by Avanir Pharmaceuticals and released by the Alzheimer’s Foundation of America in September 2012.

About the Alzheimer’s Foundation of America
The Alzheimer’s Foundation of America, based in New York, is a national nonprofit organization that unites more than 1,600 member organizations nationwide with the goal of providing optimal care and services to individuals with dementia, their caregivers and families. Its services include counseling and referrals by licensed social workers via a toll-free hot line, e-mail, Skype and live chat; educational materials; a free quarterly magazine for caregivers; and training. For more information, call toll-free 866-232-8484 or visit .

Full survey results, including ethnic disparities, can be found at

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