Survey: Caregivers attribute Alzheimer’s symptoms to normal aging behaviors, delaying diagnosis

While many people incorrectly believe memory loss is inevitable in growing older, a new survey reveals 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 believe those false impressions delayed their loved one’s diagnosis of the incurable brain disorder.

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

The survey, "Alzheimer's Caregivers: Behavioral vs. Cognitive Challenges," conducted by Harris Interactive for the Alzheimer’s Foundation of America, found that only 14 percent of respondents feel they are managing the person’s behavioral symptoms better than their cognitive ones. It also 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.

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, 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 reported 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).

The survey also found that 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.

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

While nearly half of caregivers said 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.