Memory Special Report
Overcoming the Stigma of Alzheimer's Disease
Because of the nature of Alzheimer’s disease treatment, delaying diagnosis may make it more difficult to treat the disease.
No matter what the diagnosis, the shift from “healthy” to “sick” alters how you perceive yourself and how others perceive you. Sociologists refer to this as the effects of “labeling”—once diagnosed, people carry the label of their illness and, in turn, the benefits and stigma of all its expected behaviors. The very real fear of a terminal illness and the potential for social exclusion and loss of identity, dignity, and competency all coalesce to create a powerful stigma around Alzheimer’s disease. In some cases, fear of this stigmatization may prevent patients and their families from seeking an appropriate medical diagnosis—even as the symptoms of dementia become plainly obvious. Unfortunately, this all-too-common delay may seriously undermine a patient’s chances for effective treatment.
Delaying the diagnosis of Alzheimer’s disease
A recent survey of caregivers conducted by the Alzheimer’s Foundation of America (AFA) suggests that avoidance and denial are common reactions to the symptoms of Alzheimer’s disease in a spouse or a parent. In fact, people with Alzheimer’s disease may face their symptoms sooner than would-be caregivers.
The AFA’s Investigating Caregivers Attitudes and Needs (I CAN) survey analyzed the attitudes of 539 caregivers. The survey found that 57% waited an average of two years from the onset of Alzheimer’s disease symptoms in a family member before seeking a formal diagnosis of Alzheimer’s disease. The wait was even longer among survey respondents who cited denial and stigmatization as the primary reason for not seeking an immediate diagnosis. If the patient was concerned about the stigma of Alzheimer’s disease, it took an average of three and a half years to receive a diagnosis. When caregivers worried that a loved one would be stigmatized after being diagnosed with Alzheimer’s disease, the time between the onset of symptoms and diagnosis was even longer—an average of six years.
Illness itself may play a role in why people experiencing the symptoms of Alzheimer’s disease delay a trip to the doctor, because the earliest symptoms of dementia are difficult to recognize. It may also be that putting off what they might fear is “the inevitable” gives people the illusion of buying themselves Alzheimer’s-free time. Some caregivers resist seeking a formal diagnosis for their family member, fearing that the stigma of Alzheimer’s disease will cause their loved one to slip into depression, thereby robbing them of valuable “worry-free” time. Others fear that knowledge of Alzheimer’s disease could hasten its progression, thereby unleashing the “self-fulfilling prophecy.”
These protective instincts may actually be counterproductive, if not harmful. For one, the anxiety of not knowing—for both patients and caregivers—can be a tremendous burden that can lead to serious depression. Most important, because of the nature of Alzheimer’s disease treatment, delaying the diagnosis may make it more difficult to treat the disease.
The best time to treat Alzheimer’s disease
Although people progress through the stages of Alzheimer’s disease at different rates and may live anywhere from eight to 20 years with the disease, some experts believe that early detection is the key to slowing the progression of Alzheimer’s disease. Evidence suggests that the three cholinesterase inhibitors currently available to treat Alzheimer’s disease—Razadyne (galantamine), Exelon (rivastigmine), and Aricept (donepezil)— may delay mental decline and minimize behavioral symptoms. However, the FDA has approved these drugs for use only in mild to moderate Alzheimer’s disease.
The other approved treatment, Namenda (memantine), is approved for treatment of the later stages of the disease. The effectiveness of combination therapy with cholinesterase inhibitors and memantine is also limited to early and moderate stages of Alzheimer’s disease. Many professionals point out that early recognition allows more in-depth discussion of wills, durable powers of attorney, financial matters, and treatment preferences, in case the person becomes unable to make health care decisions in the future. For these reasons alone, catching Alzheimer’s disease early is the best course of action.
Fighting the Alzheimer’s disease stigma
The stigma of Alzheimer’s disease thrives on isolation and fear. Fifty percent of caregivers in the I CAN survey reported that they would be interested in more information and support groups, and 69% mentioned the need for more assistance from friends and family — clear indications that many feel like they are going it alone. Despite the fact that Alzheimer’s disease is a devastating illness, there are ways to help patients live full and engaging lives after the diagnosis. Structured activities with others who are dealing with the disease, for instance, may considerably lessen the social consequences of Alzheimer’s disease.
A study published in a recent issue of the European journal Aging & Mental Health found that participating in group psychotherapy helped people with Alzheimer’s disease significantly bolster their self-image. One participant noted that when he first came to the psychotherapy group after being diagnosed with Alzheimer’s disease, he thought he was “going crazy.” But by the end of the sessions he was able to joke with others about his condition and no longer associated dementia with the label of craziness. Another participant explained that the group helped her “overcome the feeling of being different,” suggesting that isolation and Alzheimer’s disease do not have to go hand in hand.
Anecdotal evidence also suggests that the apparent connection between Alzheimer’s disease and the arts may challenge the stigma of helplessness and incompetence associated with the condition—though few scientific studies have been done examining the benefits of art therapy.
Willem de Kooning, the Dutch-born American abstract expressionist painter, created widely appreciated works as he developed Alzheimer’s disease. Experts, including the world-renowned neurologist and author, Oliver Sacks, have also observed musicians with Alzheimer’s disease who have lost their entire memory but continue to play beautiful music. Similarly, specialized art programs for groups of people with Alzheimer’s disease and their caregivers have found that art can spark complex emotions and interpretive powers in people with dementia.
There is certainly no denying that Alzheimer’s disease and dementia drastically alter a family’s life. However, once a diagnosis is made, people with Alzheimer’s disease and their caregivers can openly seek the range of treatment, support, and recreational activities available to them. If you or a loved one are experiencing the symptoms of dementia, challenge the stigma of Alzheimer’s by seeking out the proper diagnosis and treatment.
Posted in Memory on January 29, 2007
