Our interview with a Care Manager from the Alzheimer’s Association of Greater Michigan showcases some of the most important issues in raising Alzheimer’s awareness.
For all the progress we’ve made in the diagnosis and understanding of Alzheimer’s disease, we’ve still got a long way to go. One of the hurdles, according to Kate Williams, LMSW, is in the area of raising Alzheimer’s awareness. Williams is a Henry Ford Health System Counselor/Care Manager for the Alzheimer’s Association – Greater Michigan Chapter.
The Greater Michigan Chapter, which was founded in 1981, covers 60 counties and serves over 140,000 individuals with dementia, as well as supporting their families and caregivers. In her clinic, Williams works with patients and families going through the diagnosis process, and she has firsthand experience with the challenges we still face in battling the disease. We’ve interviewed her about what it’s like to help lead the charge against Alzheimer’s disease.
Q. What are the biggest hurdles to generating awareness about Alzheimer’s?
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A. I think people don’t want to think about it. It’s a very scary disease, and because there’s no cure, and there’s limited things we can do in terms of slowing progression, people would prefer not to think about it, and to think it happens to someone else and not to them.
Q. How has public awareness changed over the years?
A. I think it is slowly changing, but I think there’s a lot of misinformation out there. This is such an exciting time in brain health, when things are changing rapidly, and so what we thought of as Alzheimer’s 20 years ago is very different from what we know now. That’s a barrier for people in learning more. We are hopeful for the future—what people think of as Alzheimer’s is really the middle and late stages, and now it’s being detected so much earlier. Getting the message out there has been difficult, though.
Q. What are some of the biggest myths that people have about Alzheimer’s?
A. That dementia and Alzheimer’s are the same thing. Dementia is an umbrella term like cancer, and Alzheimer’s is just one type of dementia. Some types are treatable, so it’s important that people get it checked out, because it may be something that can be reversed.
There are myths about what causes Alzheimer’s and what might cure it, like the mercury fillings in your teeth, or if you do 3 crosswords a day it might prevent Alzheimer’s. That it’s heavily genetically based. That it only happens to old people; about 200,000 people in the U.S. have it before the age of 65.
Q. Who uses your organization?
A. Patients and families, local caregivers, people that live very far away and don’t have a lot of experience or hands-on knowledge but want to know more. Community groups who have questions or concerns and want to educate their constituency. Parents, kids, spouses—just about everyone.
Q. Are there any interesting programs for Alzheimer’s patients in your region?
A. We just started a group with the Detroit Institute of Art called Minds on Art—guided tours of the DIA galleries using a special art appreciation program, and then an hour in the DIA studios making art. It’s four people with memory loss and their care partners. It’s a nice way to socialize and also to meet people going through a similar issue. There’s also been research showing positive outcomes for brain health, more independence in ADLs, etc.
We have a really innovative program with one of the local hospitals where we put social workers into the primary care and neurology offices, so it’s a one-stop situation. The social worker is there to provide resources, education, and counseling. We’re one of very few places in the country that do that.
We also have a summer camp for kids who are dealing with a parent or grandparent who has Alzheimer’s. It’s just a day camp where they can get support from other kids that are going through it, and we get them involved in advocacy and awareness so that they feel like they are doing something to help.
Q. What’s the best book you’ve read about aging? Was there a particular book that influenced you?
A. The book I really like is called Understanding Difficult Behaviors by Robinson, Spencer, and White. I really like it because it’s like a car manual. You figure out what’s the problem that someone’s having, then you flip to that section—it’s really user-friendly.
The 36-Hour Day, just for being so comprehensive. So many people I speak to, after they’ve read it, they say, I had no idea other people felt this way. It captures the experience without making it scary, and makes it relatable.
Q. What are some of the greatest challenges and rewards of working on behalf of the Alzheimer’s Association?
A. I think it’s frustrating for all of us that Alzheimer’s is very poorly funded compared to other disorders. Many other disorders have funding from the government in the billions, and we have 450 million. There’s still that stigma even from other professionals—even from doctors—that there’s nothing you can do, that people shouldn’t know about this, that they shouldn’t be told their own diagnosis because it’s too depressing.
I think the rewards are from the patients and families. It’s very rewarding to help people keep their loved ones at home. It’s very rewarding to help people understand what’s happening and to destigmatize it. People with memory loss are still people, and to help others put the disease to the side, and still deal with the person as an individual—there’s still laughter to be had in life, and to get to experience that and help others to experience that is extremely rewarding.
Q. Is there anything else you’d like to share with our readers?
A. Just remember that there’s someone in every state, in every part of the nation, who can help you. The Alzheimer’s Association has a toll-free number, 1-800-272-3900, or visit www.alz.org.
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