Why We Need to Fight Alzheimer's Stigma
Vice President of Constituent Services,
Commentary — Why We Need to Fight Alzheimer's Stigma
Alzheimer's disease is an epidemic that threatens healthcare systems and is contributing to worsening economic conditions around the globe. According to the Alzheimer's Association's 2012 Alzheimer's Disease Facts and Figures report, one person develops the disease in the United States every sixty-eight seconds, while more than 5 million Americans are living with the disease. But Alzheimer's doesn't only affect individuals — it affects entire families. There are 15.2 million friends and family members of individuals with Alzheimer's and other dementias who provide 17.4 billion hours a year of unpaid care. Indeed, caring for people with Alzheimer's and other dementias in the U.S. will cost an estimated $200 billion in 2012.
Yet, Alzheimer's continues to be misunderstood, and the people who live with it (as well as their caregivers) are often stigmatized, in part due to this lack of awareness and understanding of the disease. Stigma can prevent people from seeking a diagnosis or medical treatment, even when symptoms are present; from developing support systems after a diagnosis; from making plans for their future and striving for the best quality of life possible while they're able to do so; and from participating in clinical trials or other research studies.
People with dementia and their care partners often feel disconnected from society and sometimes even from their friends and family members. The misconceptions and stigma around the disease create unnecessary barriers that prevent those affected from living a full life, impede progress in improving care and support services, and limit funding for research.
Many people report hiding their diagnosis, concerned that their ideas and opinions will be discounted or that others will avoid them. Often, people who contact the Alzheimer's Association report being treated differently by friends and family members. Many friends and family members simply drift away, leaving the person with dementia feeling abandoned and isolated.
Stigma and lack of awareness also affect Alzheimer's disease research. For example, the federal government funds Alzheimer's research at lower levels than several other major diseases, even though the cost of caring for persons with Alzheimer's is significantly higher.
Too Many Persistent Myths
Much of the stigma around Alzheimer's originates in long-standing myths. For starters, Alzheimer's and memory loss are not a natural part of aging. As people age, it is normal for them to experience occasional memory lapses; Alzheimer's is more than occasional memory loss. It is a disease that causes brain cells to malfunction and, ultimately, die. When this happens, an individual eventually may forget the name of a longtime friend or relative, or how to find her way back to a home she's lived in for decades. Those memories will never come back. Alzheimer's is also fatal. It destroys brain cells and causes memory changes and loss of body functions. It slowly and painfully takes away a person's identity, ability to connect with others, and think, eat, and talk.
It is important to note, however, that people with Alzheimer's, especially in the early and middle stages of the disease, can take part in many everyday activities. They have the same needs as anyone else for social interaction and engagement in meaningful activities. The Alzheimer's Association encourages people living with Alzheimer's or other dementias to be involved in making decisions that affect them for as long as they can in order to help maintain their autonomy, dignity, and self-esteem.
Taking Steps to Address the Stigma Surrounding Alzheimer's Disease
To mark World Alzheimer's Month, the Alzheimer's Association is unveiling a list of tips created by the Alzheimer's Association National Early-Stage Advisory Group, comprised of men and women from across the country who provide the association with their unique insights, based on personal experience, about the needs of people living with Alzheimer's as well as those of their caregivers:
- Be open and direct. Engage others in discussions about Alzheimer's disease and the need for prevention, better treatment, and an eventual cure.
- Communicate the facts. Sharing accurate information is key to dispelling misconceptions about the disease. Whether through a pamphlet or link to online content, offer information to help people better understand the disease.
- Seek support and stay connected. It is important to stay engaged in meaningful relationships and activities. Whether family, friends, or a support group, having a network is critical.
- Don't be discouraged. Denial of the disease by others is not a reflection on you. If people think that Alzheimer's disease is normal aging, see it as an opportunity to educate them.
- Be part of the solution. Advocate for yourself and millions of others by speaking out and raising awareness.
In order to help people implement these tips, and to stay better connected in general, the Alzheimer's Association recently launched ALZConnected, a social networking community designed specifically for people with Alzheimer's disease and caregivers. Registered members of the site can connect and communicate with people who understand their challenges, ask questions, create public and private groups organized around a dedicated topic, and share solutions to dementia-related issues.
Beth Kallmyer, MSW, is the vice president of constituent services for the national Alzheimer's Association in Chicago. The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support, and research.