Stigma cited as top concern for people living with Alzheimer's disease
New report summarizes issues voiced by those living in the early stage of Alzheimer’s disease
Hundreds of people living in the early stage of Alzheimer’s stated that the stigma associated with the disease is one of their top concerns during town hall meetings that the Alzheimer’s Association held across the nation. The Alzheimer's Association released “Voices of Alzheimer’s Disease: Summary Report on the Nationwide Town Hall Meetings for People with Early Stage Dementia” at the 16th annual Dementia Care Conference. The report is a qualitative analysis based on the first dialogue of more than 300 people living in the early stage of Alzheimer’s disease at regional town hall meetings and virtual town meetings held online at www.alz.org.
“People in the early stage of Alzheimer’s have a unique opportunity, prior to the truly debilitating effects of the disease, to play a role in decision-making and participate in planning their experience with the disease,” said Peter Reed, Ph.D., senior director of programs for the Alzheimer’s Association. “Those with early stage Alzheimer’s seek to be defined not by the memory loss and functional decline they have experienced, but rather by their remaining abilities.”
“Voices of Alzheimer’s Disease” illuminates the experiences those in the early stage of Alzheimer’s disease and shares their perspectives on how they wish to be viewed, respected, engaged and treated by the larger field of Alzheimer’s professionals and researchers as well as the public at large. Common themes include:
The stigma of Alzheimer’s and its impact on relationships
The overriding theme influencing much of the discussion is that people in the early stage of Alzheimer’s are misunderstood because of myths and misconceptions about the disease and that this misunderstanding leads to a dominant negative stigma associated with having the condition. People with early stage Alzheimer’s repeatedly point out that they are living with Alzheimer’s, not dying from it.
Dissatisfying interactions with the medical community
People with early stage Alzheimer’s report significant challenges in effectively navigating the diagnostic process as well as the follow-up treatment and care. They express difficulty securing a valid and timely diagnosis, particularly those with early onset Alzheimer’s, and describe a severe burden associated with experiencing the current diagnostic testing. Once identified, they seek more complete information about what to expect and the steps that can be taken to enhance their quality of life, both in terms of available medications and community resources.
There is a strong desire to participate in research and make contributions to the larger field of scientific inquiry to gain both potential benefit for themselves and aid future generations. People in the early stage of Alzheimer’s outline potential barriers to this contribution, specifically critiquing the present eligibility criteria for inclusion in research.
Uncertainty about availability of support services
A lack of knowledge about accessible and appropriate support services available in communities was expressed. Meanwhile, people in the early stage of Alzheimer’s acknowledge the benefit of the services that do exist, and in which they have participated. Specifically, they highlight the importance of securing appropriate support, and seek support groups that are offered in various modalities to connect with others that have a shared understanding of their experience.
Sources of major concern in daily life
People with early stage Alzheimer’s recognize the changes that are taking place in their own independence and functional ability. A major fear expressed in this discussion is the continued decline in independence and the prospect of becoming increasing reliant on loved ones and other care providers.
In particular, a major fear was expressed about the impact on their ability to continue driving. Viewed as a proxy for overall independence, there is a hope to remain as independent as possible, for as long as possible. People in the early stage of Alzheimer’s propose and seek solutions that will enable them to meet this need over time in a manner that preserves their safety.
Desire to stay involved and make a difference
Perhaps above all else, people in the early stage of Alzheimer’s demand to be heard and fight to remain engaged as contributing members of their community. They wish to be included in everyday activities and remain social. They hope to have the opportunity to take advantage of the abilities they retain to make a difference by raising awareness among the public and advocating for change.
According the 2008 Alzheimer’s Disease Facts and Figures, as many as 5.2 million Americans are living with Alzheimer’s disease and approximately half of those are in the early stage of the when they still retain many abilities and can contribute in the planning of their own care and future. In addition to the 10 million baby boomers who will develop Alzheimer’s, increased awareness and advancement in diagnostics and treatments will contribute to escalated numbers among those in the early stages of Alzheimer’s disease – dramatically changing the present landscape of the disease.
The Alzheimer's Association Dementia Care Conference provides care professionals the opportunity to connect with peers from around the country; learn from renowned aging experts; and participate in educational programs tailored to address the unique needs and demands of the profession. The 16th annual 2008 Dementia Care Conference is being held in Garden Grove, Calif., August 24-27 and boasts approximately 50 informational sessions.
Report: Voices of Alzheimer’s Disease: Summary Report on the Nationwide Town Hall Meetings for People with Early Stage Dementia (36 pages)
The Alzheimer's Association is the world's leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. For more information, visit www.alz.org.