Earlier this year, the Alzheimer’s Association released their annual Alzheimer’s Disease Facts and Figures Report. Among the findings:
- At present, an estimated 5.3 million Americans have Alzheimer’s disease.
- This number is projected to rise to 13.8 million by 2050.
- Alzheimer’s disease is the sixth-leading cause of death in the U.S., and fifth-leading cause for those age 65 and older.
- Alzheimer’s is the costliest disease to society—$226 billion in 2015.
- This year family caregivers of people with Alzheimer’s and related disorders will provide care that is worth an estimated $217 billion.
Perhaps the most surprising finding was that fewer than half of people with Alzheimer’s disease or their family caregivers report that they were told the diagnosis by their doctor.
Alzheimer’s Association Vice President Beth Kallmyer says, “These disturbingly low disclosure rates in Alzheimer’s disease are reminiscent of rates seen for cancer in the 1950s and 60s when even mention of the word cancer was taboo.” Yet as the Alzheimer’s Association points out, today more than 90 percent of people with cancer are told of the diagnosis.
What is the reason for this reticence? Perhaps doctors think they are sparing patients and families bad news. Past studies have shown that patients and families may drift along in a sort of diagnostic limbo, making accommodations for the changes in their loved one’s cognitive abilities, which they might chalk up to the normal changes of aging. Yet studies also show that most people would want to know the diagnosis—and even though doctors might fear causing emotional distress, it’s important that the diagnosis be shared. According to Dr. William Klunk, Chair of the Alzheimer’s Association Medical and Scientific Advisory Council, “Based on the principles of medical ethics, there is widespread agreement among health care professionals that people have the right to know and understand their diagnosis, including Alzheimer’s disease.”
The Alzheimer’s Association emphasizes the numerous benefits of early diagnosis:
- Better access to quality medical care and support services.
- More opportunity to participate in decisions about care.
- Ability for informed consent for current and future treatment plans.
- Possibility of participating in clinical drug trials.
- Maximum benefit from available treatments.
Says Kallmyer, “It is of utmost important to respect people’s autonomy, empower them to make their own decisions and acknowledge that people with Alzheimer’s have every right to expect truthful discussions with their physicians. When a diagnosis is disclosed, they can better understand the changes they are experiencing, maximize their quality of life, and often play an active role in planning for the future.”
Source: Regency Memory Club and IlluminAge reporting on the Alzheimer’s Association’s 2015 Alzheimer’s Disease Facts and Figures. Full text of the report can be viewed at www.alzheimersanddementia.com. For more information about Alzheimer’s disease, visit the Alzheimer’s Association website (www.alz.org) or call 800-272-3900.