"Alzheimer's is like a monster under the bed. You have two choices: You can either look under the bed and scope out the monster and see what tools you have to fight him, or you can sit there and wait for him to come. There's so much you can do if you know early on."Download the Voices of Alzheimer's Disease Report (36 pages)
Summary(extracted from the report)
The intent of this report is to illuminate the experience of being in the early stage of Alzheimer‟s disease or related dementia and to share the perspectives of those affected 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. Throughout the document, quotes taken directly from people with Alzheimer‟s disease provide a window into the consciousness of those still capable
of offering this level of insight. The themes that emerged from this nationwide discussion outline a road map of sorts to offering empowerment and appropriate engagement. This summary of themes is a brief, but telling, review of the perspectives that were shared.
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. They acknowledge the fears and uncertainties that accompany a diagnosis but seek support in remaining viable and respected members of society, retaining their person hood and ability to contribute.
Negative associations with Alzheimer‟s disease are shown to have a direct impact on the relationships between people with the disease and most everyone with whom they come into contact. People described the change in interactions that occur with their family and friends, colleagues and co-workers, as well as with the medical community. People with early-stage Alzheimer‟s seek to work together with all those in their life to improve their interactions in a way that will result in their continued positive involvement and acknowledgment of their ideas and contributions as valid. Demonstrating a strong desire to be active in advocacy and awareness-raising, the challenge is set to diminish the existing stigma and enable the
continuation of their person hood.
Dissatisfying Interactions with the Medical Community
People with early-stage Alzheimer‟s report significant challenges in effectively navigating both the diagnostic process and the follow-up treatment and care they receive. They express difficulty securing a valid and timely diagnosis, particularly those with early-onset Alzheimer‟s, and describe a severe burden associated with the current diagnostic testing procedures. Once Alzheimer‟s is 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
There is a strong desire to participate in research and make contributions to the larger field of scientific inquiry to gain both potential benefits for themselves as well as to aid future generations of those affected by this disease. They 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 repeatedly expressed. Still, they acknowledge the benefit of the services that are available, 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.
Further, they describe the need for expanded and enhanced support services to educate them about the disease and what to expect, while keeping them apprised of new developments in available research and emerging treatments to fight their decline. There is a pronounced need for improving existing support services and increasing accessibility of these services.
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 increasingly reliant on loved ones and other care providers. There is a hope that recognition of these fears will lead to their own personal inclusion in the decision-making process and that their involvement will lay appropriate plans across a range of areas to help minimize the negative consequences of disease progression.
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. They propose and seek solutions that will enable them to meet this need over time, and 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. Whether in their local community or with federal policy makers, they hope to tell their story and in doing so, put a “real face” on this disease.
If they are enabled to continue participating in the activities they have always enjoyed then the current practice of dwelling on their condition and treating them as a disease will be assuaged. In their hearts, people with early-stage Alzheimer‟s want to enjoy life and they demand that those without the disease assist them in achieving their pursuit of happiness to the extent possible.
It is well known that Alzheimer‟s disease is complicated and ultimately devastating to those who live with the disease. As it gradually progresses, it impacts not just the individuals affected, but also their families and friends. Further, today Alzheimer‟s disease remains fatal. But, the late manifestation of the disease no longer represents the whole picture of how people with Alzheimer‟s are affected.
This report brings a much needed perspective that highlights the
experience of those that have not yet progressed to the point of requiring comprehensive care services. Rather, they retain many of their capabilities, seek to remain as independent as possible and contribute to the world around them. People in the early stage of dementia seek to partner with others to express themselves and to remain the people they have always been, despite their condition.
A first step to better understand the unique needs of people with early-stage dementia has been taken through this nationwide discussion of Alzheimer‟s by people with Alzheimer‟s. Going forward, there is a shared responsibility -- for people with or without the disease -- to preserve humanity and work toward a world that welcomes the contributions of people living with Alzheimer‟s disease.
Early-stage Alzheimer's patients 'don't want to be stigmatized'
Original content Alzheimer's Reading Room