a diagnosis of Dementia, advocating for dementia patients, Alzheimer's, Alzheimer's Disease, Dementia, diagonsis of Alzheimer's, LDS, LDS women, Mormon, Mormon women, the stigma associated with Alzheimer's, the stigma associated with dementia diagnosis
As many of you may know, I’ve been working on an advocacy project for Alzheimer’s patients. A group of six of us from University of Washington Tacoma joined with the Alzheimer’s Association here in Washington State. Together we became over eighty strong as we made our way down to Olympia to talk with our lawmakers about the necessity of a State Alzheimer’s Plan. The weekend before our visit, the State Senate had already passed bill #6124 to begin the creation of a Washington State Alzheimer’s Plan. The bill now rests with the Health Care Committee of the House. But the expectation is that it will also pass the House before the legislators finish this legislative session.
This is all good news. But that’s all it is. The real test will come when the details have been sorted out and recommendations for this plan have been made. Then the major decisions around funding will determine where Washington State stands in terms of its growing elderly population.
Here are some facts. Washington State’s current elderly population stands at 12%. It’s expected to grow to 20% in fifteen years. There are currently 150,000 Alzheimer’s patients in this state which has the 4th highest death rate due to Alzheimer’s in the nation. These patients are cared for by 350,000 individuals, who are most likely family members. If a cure is not found, these numbers are expected to TRIPLE by 2050, giving us over 1 million Washingtonians living with Alzheimer’s, either as a patient or a caregiver. While other diseases that claim the elderly such as breast cancer, stroke, and heart disease are on the decline, Alzheimer’s numbers are rising to epidemic proportions. Needless to say, Washington State is on the cusp of some very important decisions regarding its citizens.
All of this is extremely important, but what must be remembered s that we’re not really talking about numbers here. We’re talking about people’s lives. As I’ve written about this, I’ve had some folks contact me to tell me that they also deal with or have dealt with Alzheimer’s or some other form of dementia within their families. One friend wrote to clear something up for me. She told me that Alzheimer’s is just one of many forms of dementia, and that perhaps we should make this clear so that dementia patients who don’t have Alzheimer’s but have some form of dementia also get the necessary help. So, I called the Alzheimer’s Association about this, and they said yes, they care and advocate for all dementia patients. They’ve chosen to use the diagnosis of Alzheimer’s to stand in for all dementia diagnoses because there are so many different kinds of dementia and Alzheimer’s is the most recognized. I understand their decision, but from here on out, in my blogs about Alzheimer’s/ Dementia, I will be referring to Dementia as the diagnosis more often. It’s an important distinction to make as we deal with the many facets of the disease, including the stigma that comes with a diagnosis of dementia.
In an earlier post, I wrote about an interaction I had with a man a couple of weeks ago when I asked for directions to the Alzheimer’s Association offices. It wasn’t until then that I considered the stigma associated with this disease. Since that day, I’ve paid closer attention and researched the matter to find that dementia is the new hushed diagnosis. It used to be cancer, or “the C word.” HIV was another disease that we spoke of in quiet whispers. Today, these two diseases are discussed openly. For cancer and HIV patients, this helps everything from their interpersonal relationships to the amount of funding for research and care that are available for that particular disease. That’s part of my goal in writing about this. To dismantle the stigma that is associated with dementia so that these patients, our family members, can receive necessary care. But what’s just as important is that they receive the respect they deserve, because not that long ago, they were us.