The Steele Report: Living with Dementia

Hi friends!

Today I’m sharing a local news show, the Steele Report, that features our Dementia Friendly Action team. It originally aired on January 12, 2020. You can watch it here:

Steele Report Waterloo Dementia Friendly Action Team

You’ll see me talking about dementia, along with my friend Kevin, who lives with Lewy-Body Dementia in our community. Kevin discusses how he contemplated suicide after diagnosis, his goal of continuing to live as independently as possible in our community, and how he depends on the kindness of both friends and strangers.

In addition to focusing on dementia more generally, the show discusses resources available to those living in my area (northeast Iowa) but I’d encourage you to explore what services might be available in your own area.

In the United States, you can see if there any chapters of the Alzheimer’s Association nearby: https://www.alz.org/

Keep in mind that the Alzheimer’s Association provides support not just for those with Alzheimer’s but for those who live with other types of dementia as well.

If you live in the United States, you can also locate your area agency on aging. If you aren’t aware of one nearby, you can search here: https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx

In addition, I would encourage you to check out what you could do to make your community dementia friendly: https://www.dfamerica.org/

On this show, you’ll see a couple of my current and former students, as well as me, talking about dementia, its challenges, and how to seek out support. However, the most powerful words come from Kevin, who is living with Lewy Body Dementia.

Not everyone with dementia wants or is able to speak about their experiences, but Kevin has stepped up to the plate to do so. To Kevin and everyone else who lives with dementia and continues to teach me what that experience is like, thank you. I try to be a good student.

I’ve read and written research articles on dementia. Books on dementia take up space on my bookshelves at both works and home. I go to conferences, seminars, and workshops. I probably do 40 or so presentations on dementia each year, and I teach a college class called Families, Alzheimer’s, and Related Dementias.

But when I spend time with someone who lives with dementia, I always learn something new. Always. In this field, you need a combination of professional and personal experiences. Book knowledge and street smarts, or something like that. I continue to rack up more smarts the more I communicate with people who live with various types of dementia and their families. I’m sure some of my friends with dementia sometimes want to call me out because I don’t understand their experiences, but they are too patient and too kind when I just don’t get it.

And, since it’s the New Year and everyone is talking goals and resolutions, I’d like to say this…I want to keep continuing to learn about dementia. When I started studying dementia about 10 years, I thought I knew a lot. Looking back, I knew virtually nothing. In 10 years, I might look back at 2020 and think I knew nothing now.

And that’d be fine.

Because it would mean I continued to learn.

 

6 Comments

  1. Elaine, thank you for sharing this program!! There are so many people who do not know how to interact with people who have been friends for decades and now have a form of dementia!!! So rather than be supportive they dump their friend and their caregiver when they desperately need their support!! Education has to be the key!! Thank you to all of your team for providing valuable information to provide that bridge!!! I know, I have experienced this in my family, and it hurts a lot!!!

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    1. I’m sorry you’ve experienced this in your family. We need to work on teaching people how to be friends with someone with living with dementia and their care partners. Every once in a while, I will do a presentation and someone will come up and tell me that they showed up to learn how to better support a friend or neighbor that has dementia. I want to figure out how we can get more people to do this!

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  2. What a special blessing you are to the world. There is so many people suffering with dementia, both directly and indirectly, but so few people know enough to care. You are changing all that. You are making this a better world. I can hardly imagine the shock and fear one must experience when finding they have dementia. The support you are bringing about will go far in satisfying the need for help.

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