Why bother? This is one of the most commonly-heard questions regarding the diagnosis of Alzheimer's disease. Countless people raise it, from symptomatic individuals and family members, to clinicians and managed care companies -- and the list goes on.
The question seemingly stems from the harsh reality that there are no effective treatments to prevent, reverse or cure Alzheimer's disease -- a disorder notoriously labeled as the most feared, most costly, and fastest-growing health threat in the United States.
This apathy converges with fear, denial and insufficient knowledge about dementia among clinicians and the public to influence the current state of diagnosis, or lack thereof. Research indicates 29 percent to 76 percent of people with dementia or probable dementia have not been diagnosed by a primary care physician. The Alzheimer's Foundation of America (AFA), in a survey of participants in its National Memory Screening Day, held each November, found that only 17 percent had spoken to a health care provider about memory concerns (Alzheimer's Foundation of America, 2010 Survey of National Memory Screening Day Participants).
So why diagnose? First, because we can. Clinicians can diagnose Alzheimer's disease with 80-90 percent accuracy. The federal government pinpoints early detection as a key objective in its historic "National Plan to Address Alzheimer's Disease." The new Medicare Annual Wellness Visit includes detection of cognitive impairment.
In early November, the U.S. Preventive Services Task Force (USPSTF) issued a draft recommendation on screening for dementia. The task force stated it was unable "to estimate the balance of benefits and harms of screening for cognitive impairment." But, unlike its last review in 2003, the USPSTF concluded that there is now adequate evidence that some screening tools can accurately identify dementia.
Why bother? Not every memory problem equals Alzheimer's disease. Memory loss, confusion, personality changes, and other symptoms can indicate other conditions, such as thyroid problems, vitamin deficiency or depression. Here, burying one's head in the sand could prevent detection of a reversible condition.
And why bother if the symptoms are related to Alzheimer's disease or a related dementia? For one, proper diagnosis provides closure. A spouse, whose husband is being assessed for possible frontotemporal dementia, notes she wants "to be able to call his disease something." Similarly, a poll by the Working Mother Research Institute found that nearly half of female caregivers wished their parent with Alzheimer's disease had been diagnosed sooner.
For people with Alzheimer's disease, a diagnosis can mean improved quality of life. Clinicians can optimize medical management and prescribe available drugs that may slow progression of symptoms. Individuals can enroll in clinical trials, with the hope of helping themselves and advancing research. Nonpharmacologic interventions, healthy lifestyles like physical exercise, socialization and mental activities, environmental modifications, and supportive services can help maintain dignity, and offset negative behaviors and other challenges of the disease.
Moreover, when diagnosed in the earlier stages, individuals can undertake care planning, including handling legal and financial affairs, voicing end-of-life wishes, and making other decisions.
In 2005, at age 57, Mary Kay Baum was told she had young-onset Alzheimer's disease. She has no regrets about seeking a diagnosis. As a result, she participates in research studies as a "gift" to her children and others. Moreover, she has made dramatic lifestyle changes to try to keep symptoms at bay; among them, she left her stressful job in the ministry and moved to rural Dodgeville, Wis. -- a "healing place" -- where she spends several hours a day outdoors doing physical and creative activities.
Without an actual diagnosis, "I don't think I would have had the passion to focus on my cognitive health as well as I do," said Baum, chair of forMemory, Inc., a nonprofit organization that connects people affected by young-onset dementia.
For family caregivers, a diagnosis enables them to set wheels in motion as well. Getting educated about the disease and what to expect as it progresses, developing a care team, embracing resources for themselves and their loved ones, adjusting work schedules, and modifying future plans are among the to-do's that can help relieve the weight of this terminal disease. Increasing evidence supports the value of care management, especially in reducing caregiver stress and morbidity, delaying nursing home placement, and improving health outcomes for caregivers and care recipients.
Susan Poulos, of Greensboro, N.C., said her mother showed symptoms for several years before she finally went to a neurologist. "It was the elephant in the room," Poulos said.
"[Alzheimer's disease] is a hard diagnosis to swallow, but knowing it gave us permission to take action," said Poulos, who subsequently researched the disease and joined a caregiver support group. "I gathered as much information as I could so we as caregivers could be stable, solid and grounded to provide her with the best possible care given the diagnosis."
Just like we "bother" to diagnosis cancer, heart disease, HIV/AIDS and other illnesses with or without effective treatments, it's time to "bother" with Alzheimer's disease.