Since my husband Albert died of dementia in 2010, we have seen remarkable changes in how our society understands and responds to Alzheimer’s disease and dementia.
During my caregiver experience, I could find few people who were willing to even talk about the disease, much less tell me where I could get the information and support I needed. The most useful thing my family doctor could tell me when Albert was diagnosed was, “Hang on for the ride!” I really resented that lack of help at the time, but now realize there wasn’t much more he could tell me.
As with any disease, before we can develop useful knowledge and resources, we must have public awareness and acceptance of our situation on a national scale. Until recently, that public conversation did not exist for dementia. Too often, people with dementia were treated as a family’s shame and shoved off into the shadows. Whether we intended to or not, in our ignorance we blamed the victim, making their plight even more terrible than it already was.
I am so happy to note that the state of Alzheimer’s Awareness has greatly improved. Not only is it acceptable to discuss the disease, but it is now approaching the status of a topic of great interest in popular culture. Let me give some examples.
This year, two major publications offering a fairly comprehensive knowledge of Alzheimer’s disease have appeared on supermarket newsstands. These are “Alzheimer’s: New Hope for a Cure” by Centennial Media LLC, and “The Science of Alzheimer’s” by Time Inc. Books. Both are priced at about $13.00, and though they may be mixed among the more frivolous tabloids that tell you about the squabbles of the royal family or who Brad Pitt is dating, they are far more substantial publications that deserve to be kept in one’s permanent library. And neither contains advertising.
The struggles of families experiencing dementia have also more frequently become the driver of dramatic plots for national-distribution movies. After “The Notebook” and “Still Alice” broke ground ten years ago, more recently we saw the Glen Campbell documentary “I’ll be Me” followed by “The Judge.” Last year brought us “The Leisure Seeker,” and this year’s release about a family struggling with dementia is “What They Had.”
In fact, popular culture has embraced the topic of dementia to the extent that we now see art forms as diverse as high opera and soap opera tackling the issue. Last summer,Opera Philadelphia presented “Sky on Swings,”and for some time now one of America’s longest running daytime dramas,the Sentinel Award-winning “General Hospital,” has included an Alzheimer’s story line.
This increase in the national conversation about dementia is good for several reasons. First, we need to remove any stigma from the topic of dementia for the benefit of those living with the disease, and their families. None of these chose this difficult path, nor should any be ostracized or isolated from society because of it. Though there is currently no cure or remediation for this fatal disease, those living with it deserve the best quality of life for as long as possible, and this requires public acceptance and understanding.
Second, if we are ever going to find medical solutions, including better-funded quality care, a public conversation is required. Political action always follows public demand, so we will never have the funding and support for the resources we need until the public demands it. Our government leaders need to realize and be constantly reminded that dementia is no longer a “minority” issue.
I believe we are moving in the right direction because the greatest segment of our population – the Baby Boomers – has reached the time of life most affected by dementia. Ten percent of this huge generation will get some form of dementia, and I have no doubt that they and their families will demand a greater allocation of public resources to deal with this long and expensive disease.
Let’s keep this conversation going. Even if we never find a cure for Alzheimer’s, it is our moral and social obligation to provide the best quality of life possible for the individuals and families living with dementia.
Until next time remember: “We all deserve the best”
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