Bending the Arc

Earlier this month, in a recent presentation by Susan McFadden, co-founder of the Fox Valley Memory Project in Wisconsin, I learned some encouraging and meaningful things. Most notably is that all 72 counties in Wisconsin have dementia care specialists whose job description includes encouraging social opportunities for people with dementia. Actually, the word “dementia,” as Susan describes, is going away and will soon be replaced with a term that carries less stigma - “neurogenic disorders” or NGDs. More and more families, medical staff and caretakers are using the specific name of their loved one’s type of NGD when describing their disease.

Wisconsin is home to at least 130 “memory cafes” which are free social events designed for people living with memory loss and their caregivers. This is the most of any U.S. state, according to one national tracker. Other programs such as SPARK are located throughout Wisconsin, Michigan, Tennessee and Colorado. They provide programs for people with memory loss and their caregivers. 

Susan’s presentation took me back to the learnings from another presentation that CSA Regional Coordinators invited me to last October. The presentation, “Journeying with Sisters and Loved Ones with Dementia '' was presented by Dayna Hurst, a dementia and memory care specialist and consultant with the National Religious Retirement Office. It was from Dayna that I first learned that “dementia” is the umbrella word for several types of diseases to include Alzheimer’s Lewy Body, frontotemporal dementia, vascular dementia, chronic traumatic encephalopathy dementia, alcohol-related dementia, and others. Through Dayna I also learned a few ways to physically support our friends and family with a form of dementia, but maybe most impactful was learning how to support our loved one emotionally, as well as ourselves. Dayna stressed we need to let go of what was, let go of our own agenda, to accept that we are the ones who have to change because our loved ones no longer can, and of course, to support our own wellbeing.  

For these reasons, I was grateful to hear from Susan recently and to learn of the many wonderful opportunities our state offers for respite care, caregiver support, dementia education, and more. Unfortunately, many of these programs require participants to be able to ambulate without assistance, feed and toilet themselves, and interact socially with others, so these programs do not work for those with severe cases of dementia and additional medical issues.

But these efforts for others must continue to expand. In a January 2, 2024, article in the Milwaukee Journal Sentinel, it was reported that as of 2020 there are an estimated 120,000 Wisconsinites over the age of 65 living with Alzheimer’s, the most common form of dementia. We know those numbers will only continue to grow as Wisconsin’s population ages. Read the full article.

This has all grabbed my attention of late as one who is currently watching dear friends struggle with multiple diseases, including one or two types of dementia or “NGD.” It’s been as difficult to watch my friend slip away from her diseases as it is to watch her husband fight his stress, depression, and exhaustion in caring for her.