Authors

  1. REED, PETER S. PHD, MPH

Article Content

When thinking of what it means to be a person with Alzheimer's disease, what is the image that comes to mind? Where does this person live, and what are his or her day-to-day needs and activities? The classic image ripe in the minds of the public, which has resulted in damaging stigma being attached to everyone with the disease, is that of a person with extreme loss in physical, mental, and social function, living in a nursing home with no sense of self or surroundings. Yet for many with Alzheimer's, in fact most, this is not the reality. Not only do 70% of people with Alzheimer's still live at home in the community, but there is increasing recognition of the experience of people with early-stage Alzheimer's. People in the early stage of the disease are living very different lives from those living the classic image of late-stage Alzheimer's. However, both equally represent the reality of the disease, along with all those in between who have mid-stage Alzheimer's.*

 

This expansive continuum creates a challenge for professionals in terms of the manner in which they engage people with Alzheimer's, the strategies they use to provide appropriate care, and particularly in how they communicate about the disease with the public. Everyone describes the disease as degenerative and progressive, but many fail to understand what this means in terms of the gradual changes taking place over the course of many years. The progression may be subtle at times and blatantly obvious at others. Therefore, it is difficult to make the case for increasing care resources for those with the most extreme Alzheimer's-related disabilities, while simultaneously helping people understand the need to de-stigmatize the disease and welcome those with early-stage Alzheimer's to contribute as vibrant members of the community.

 

People with early-stage Alzheimer's retain many abilities and continue to participate in determining their own daily experience, despite existing difficulties with memory and activities of daily living. In a 2008 report by the Alzheimer's Association, Voices of Alzheimer's Disease: A Summary Report of the Nationwide Town Hall Meetings for People With Early Stage Dementia, people with Alzheimer's clearly articulate the difficulty they face in sustaining relationships and remaining involved in the community. They describe this difficulty as existing not because of the disease's actual impact on their functioning, but rather because of the perception of the disease's impact held in the minds of those around them. People with early-stage Alzheimer's rightly demand that they not be prematurely viewed as incompetent and incapable and that they be afforded the chance to sustain their sense of purpose and personhood.

 

Yet, we know that Alzheimer's disease is progressively degenerative. In moving from early- to mid-stage Alzheimer's, people experience significant impairment and decreased judgment. They often lose their sense of self, have difficulties recognizing loved ones, and need significant assistance with activities of daily living. In a sense, this transition may be characterized as the point at which direct control over many decisions necessarily shifts to others, including family or friends in the community or professional healthcare providers in various settings. As people transition to the late stage of Alzheimer's, their care needs are extreme because their disability is complete across multiple domains. Ultimately, Alzheimer's disease is terminal.

 

It is difficult for professionals, who want to engage people in the best possible way, to reconcile this range of experiences. As a start, professionals should recognize the continuum and strive to enable people with early-stage Alzheimer's to remain fully engaged, while offering individualized support matched to remaining abilities and needs as the disease progresses-all the way through offering end-of-life care. If it is difficult for professionals, it is staggering for a person with early-stage Alzheimer's to admit the future impact of the disease while vehemently demanding their independence. Still, there is nothing more powerful in advocating for increased resources than a person who can clearly detail their current experience while acknowledging the reality of the future. Consider an example directly relevant to current policy discussions. In order for a disease to be classified such that those with it receive Social Security Disability payments under the Compassionate Allowances condition, one element is that it be considered terminal. This means that younger persons with early-stage Alzheimer's disease must admit to themselves the terminal and devastating nature of the disease while they struggle to maintain their personhood and place in the community, to receive the money they need to survive. This stance undoubtedly causes a great deal of cognitive dissonance and is a testament to the strength of those affected.

 

Alzheimer's disease is a challenging and difficult disease under any circumstance. In part, the challenge is made even greater by the wide range of experiences of those affected by it. When you have only a few seconds available in a media opportunity, helping the public embrace people with minimal disability, while also recognizing the needs of those with extreme disability, is nearly impossible. Still, I believe that as professionals, we have a responsibility to continue to educate the public, and each other, on the full scope of the disease and to acknowledge all realities so that we enable those with early-stage Alzheimer's without diminishing a reconition of the challenges associated with the extreme effects of the disease in its later stages.

 

*Author's note: Defining the implications of the disease continuum becomes even more complicated when you include those with memory impairments not significant enough to be classified as Alzheimer's and consider the debate over whether mild cognitive impairment is a precursor and earliest phase of the disease. For the purposes of this brief discussion, I am restricting the scope to known Alzheimer's disease and exclude consideration of mild cognitive impairment. [Context Link]