Alzheimer's blog

Research advances, but real caring is also key in Alzheimer's effort

By Angela Lunde January 8, 2013

Many of you may have seen a New York Times article a week or two ago by Judith Graham titled, "United States Lags in Alzheimer's Support." The article talks about the recently released report from the U.S. Senate Special Committee on Aging on how the United States, Australia, France, Japan and Britain are responding to growing numbers of older adults with Alzheimer's and other dementias.

While each country has a strategy, the United States has only recently begun addressing Alzheimer's with any degree of organized effort and steam. The first national plan was launched last May when President Obama signed into law the National Alzheimer's Project Act (NAPA).

The article reported that a common focus of each country is on coordinating research more effectively, diagnosing Alzheimer's earlier and more reliably, and improving training in dementia care by medical practitioners. Each of these areas is undeniably important.

However, I'd argue that perhaps a more urgent priority ought to be on addressing and improving the day to day lives of those impacted by the disease. If effective plans aren't identified and implemented soon — plans that support people living with dementia and all of those impacted — we're facing devastating societal consequences.

These plans must undoubtedly include ways to keep people with dementia living at home as long as possible without families having to endure significant physical, emotional, and financial hardship as a result.

Plans must also include investing in ways to dramatically influence and improve long-term residential care across the United States.

And most important, as far as I'm concerned, would be a paradigm shift in the way we think about and treat individuals living with dementia. I'm speaking about the need to abolish the perception that wholeness, individuality and the need for respect somehow evaporate once a person is diagnosed with dementia.

The stigma attached to Alzheimer's is burdensome and far too many of us accept it. In other words, we discard the "wholeness" because our brains are fueled by the stigma and misconceptions that are attached to a person living with dementia.

Instead of seeing each person as whole with a disease affecting one part of their body (the brain), we tend to see dementia first and the person attached to the disease second.

And it only makes sense that the way in which people with dementia are viewed by society influences the nature of their care. If people believe that a diagnosis of dementia means that the wholeness of an individual is diminished or lost, then the quality of care and services gets devalued.

And let me address the issue of caring. Providing care to a person living with dementia often gets reduced to dressing, bathing, eating, toileting and other activities of daily living. What is absent here is the caring — an approach that isn't so much about "doing it" as it is about "being with".

Caring is about a relationship. It's about honoring that each one of us (with or without dementia) has a life history with unique interests and preferences, needs and desires, thoughts, feelings and emotions.

Caring is about truly knowing someone separate of any diagnosis. It's about opening up to the possibility that behind someone who is deeply forgetful is a person capable of more than we know.

The future offers hope that through improved organization and scientific collaboration we may be able to prevent or even cure diseases such as Alzheimer's. I support and applaud these efforts.

But I'll continue to champion ways to make lives better and more equitable for those in our communities and our society impacted right now.

A friend of mine who lives each day loving and caring for her husband with Alzheimer's captured it best. These are her words.

"It is deeply disturbing, even shocking, to learn that the United States is far behind other developed countries in addressing all of the issues surrounding Alzheimer's disease — from research to diagnosis and care. Although we might hope that our nation's leaders would be wise and compassionate enough to address this problem, it is absolutely clear to me that this will not happen without pressure from those of us who live with AD every day. If we have learned anything from the history of social change, whether it was the women's right to vote or civil rights for all, we know that change only occurs when people press their cause relentlessly on their leaders. This is a lot to ask of those of us whose hands are already full to overflowing, but this is not a choice for us. It is an imperative!"
Jan. 08, 2013