Currently, there are 5.7 million Americans living with Alzheimer’s or a related dementia, a number that is expected to rise as the aging population grows. Alzheimer’s is already the sixth leading cause of death in the United States and the only one that cannot be prevented, treated or cured. One of the primary concerns of people living with Alzheimer’s or dementia and their care partners is facing the stigma that surrounds this disease.
Stigma is the use of negative labels to identify a person with a disability or illness. Stigma around Alzheimer’s disease exists, in part due to the lack of public awareness and understanding of the disease. Those that have been diagnosed with Alzheimer’s often report their disease being misunderstood because of the myths and misconceptions others have about the Alzheimer’s.
The stigma experienced by some people diagnosed with Alzheimer’s disease or dementia is very real and can have detrimental consequences. Some patients attach a stigma to their condition viewing it differently than they do other “physical” diagnoses, even though the symptoms of Alzheimer’s and dementia are manifestations of physical changes in the brain. Consequently it is common for patients to disguise their symptoms from family members and health care providers and avoid discussing their memory problems. Failing to share their symptoms and concerns may result in patients receiving a diagnosis in the moderate or late stage of disease.
Conversely, those that are with open to their family and medical professionals at the first signs of cognitive and memory changes will generally receive a diagnosis during the early stage of the disease. Having an early diagnosis is key, as it gives those living with Alzheimer’s an explanation into what is happening and time to prepare for what is to come. Because Alzheimer’s runs a course of many years; understanding the disease, developing a support team and seeking out proper advice are important steps for someone that is diagnosed and their care partners.
Elizabeth Smith-Boivin, Executive Director of the Alzheimer’s Association, Northeastern New York Chapter says, “When someone receives an early diagnosis of dementia they, and their care partners, have the opportunity to make decisions about the future together. This includes legal, financial and long-term care planning. In addition, the person with the diagnosis can take advantage of available treatments and explore the possibility of participating in clinical trials. Lastly, an early diagnosis can provide someone with dementia and their care partner early access to local resources and support services, such as those provided by the Alzheimer’s Association, which they can utilize throughout their journey.”
Another barrier to overcoming the stigma associated with Alzheimer’s disease is that health care providers may avoid disclosing a diagnosis of Alzheimer’s in an effort to spare the patient from a potentially difficult diagnosis. In 2015, the Alzheimer’s Association released a Special Report that disclosed that fewer than fifty percent of people with Alzheimer’s disease reported being told of their diagnosis.
“Educating our health care providers on the importance of early diagnosis is key. The sooner someone is diagnosed the more time they will have to plan, connect with resources and find support,” says Smith- Boivin.
Stigma, lack of awareness and delays in diagnosis also impact Alzheimer’s disease research. Research is generally conducted on those in the beginning stages of the disease, which means when someone receives an early diagnosis they have more opportunities to participate in clinical trials and advance our understanding of this disease. Discovering a cure for Alzheimer’s disease requires both an economic investment in research and an increased number of participants engaged in clinical trials.
One of the things that has helped reduce the Alzheimer’s stigma is the number of high profile people who have shared their Alzheimer’s diagnosis with the public. Ronald Reagan wrote a letter to the public disclosing his Alzheimer’s diagnosis in 1994, Glen Campbell, announced his diagnosis in 2011, and Pat Summit, the legendary University of Tennessee women’s basketball coach, went public with her early-onset Alzheimer’s diagnosis in 2012. Most recently retired Supreme Court Justice Sandra Day O’Connor released a letter that announced her diagnosis of dementia. The openness of these individuals has helped raised critical awareness about the disease, increased the concern about Alzheimer’s and has ultimately helped people feel more comfortable talking about it.
“When someone well known discloses their diagnosis, it helps to both fight stigma and encourage more people to come forward and get help. We always see an increase in inquiries when a respected public figure discloses their diagnosis,” says Smith-Boivin.
If you or someone you know are concerned about or have been diagnosed with Alzheimer’s encourage them to reach out to the Alzheimer’s Association for access to the many resources that are available. The Alzheimer’s Association has a free 24-Hour helpline for more information please call 800-272-3900 or visit www.alz.org.