Living Well...Despite Alzheimers
Mike Good, an engineer-turned-dementia advocate, talks to Frank Samson, on the Aging Boomers, about his motivation to create an online resource center for people living with dementia. He has truly created a community of families, friends, and caregivers who can benefit from the education, ideas, and support found on his site.
Frank: We have another great guest with us today. His name is Mike Good. After 20 years in the high tech industry, 15 of which were in the defense industry, Mike Good left his engineering career to give back to his community. For the last three years, Mike has been immersed in helping the aging population with a primary focus on Alzheimer's and dementia. Mike has spent extensive hours researching, interacting with families, and caring for people with dementia. Mike is the founder of togetherinthis.com, an online resource helping family members who care for someone with Alzheimer's or other forms of dementia. Through short and informative articles and easy-to-use tools such as his Introductory Guide to Alzheimer's, he has helped caregivers and others take control and have peace of mind, so they're onboard with doing the right thing. Mike, thank you for joining us on The Aging Boomers.
Mike: Thanks Frank, it's my pleasure and an honor to be on your show. 25,000 listeners, that's exciting.
Frank: Yes, and thank you for everything you do. Talk about giving back! I would love to learn more about what you are doing. You were in the high tech industry for about 20 years. What made you go into this industry and set up an online resource site? What made you go this route?
Mike: That's a very good question and one that I get asked a lot. I am an engineer and I don't have any family members, or close friends with Alzheimer's or dementia. When I left my career, my goal was to give back to my community. I wanted to create a technology company to develop assistive technologies for older adults, and others with special needs. As I continued to immerse myself in the healthcare community here in San Diego County, I kept hearing about this disease called Alzheimer’s. I met people identified as caregivers of somebody living with dementia. As I continued to listen to their stories, something just kept tugging at me. I saw how complex the disease was. A colleague of mine suggested that I turn my focus to memory impairment, but due to the complexity, I quickly dismissed his suggestions.
Then one day, I was attending a conference. There were over 100 people in the room, and the presenter asked the audience to raise their hands if they knew somebody with Alzheimer’s. To my surprise nearly half the room raised their hands. I did not. It was at that moment that every ounce of my focus turned to Alzheimer’s. I realized how many people truly needed help. How could I turn my back on them? So from there I launched “Together in This," which was born with a mission to help families find tactical information and tools to make their situation easier.
Frank: Not being from the healthcare industry and not having a loved one with the disease you must have had to do a lot of research. How did you do your research, who did you talk with, how did you put this all together?
Mike: In the beginning I thought I was going to create this new computer system, so what I had to do was start going to every networking meeting and training seminar I could find. I visited hospitals and sat in board of director meetings, which were open to the public. I put four to five thousand miles on my truck the first year. I was spending 40 to 60 hours just on that. I learned about how to build a business. I thought I was going to hire engineers and get investments during that time. I realized that nobody knew who Mike Good was. They said things like, “This guy is coming out of defense, who is he?” I always felt out of place. But I learned a lot by going to all those events.
Frank: What is your goal? Right now you have a great site with a lot of information on it. How is it different from going to the Alzheimer's Association? Or other organizations? How is your site different and how do you foresee it to be even more different in the future?
Mike: When I switched my focus to Alzheimer's and dementia I did it green and ignorant, just like a new caregiver who is thrust into the role of caring for a parent or family member with dementia. The first place I turned to was the internet and I found it to be overwhelming. The good thing about the internet is everything we could ever want is there and the bad thing about the internet is everything is there. Information is hard to find and it is overwhelming. So while there are a lot of great sites, oftentimes finding that tactical “how-to” information that's specific to your unique needs as a caregiver is hard, and that overwhelm can cause you to shut down. My goal is to have Together in This be a resource that's easy to navigate, find the information and training, if you will, that's vital to helping you overcome the unique challenges that Alzheimer's presents.
I'm trying to keep the website in an easy-to-use format. I’m trying to keep it organized, and everything you can find is readily available. Also, I see it transitioning to provide more personalized training, by uniting other dementia care experts from around the country, if not the world. One of my main colleagues is from Canada. Bridging the gap between those experts who walk the walk with the families who are now starting the journey.
Frank: The site is togetherinthis.com?
Frank: Even though this is a podcast and they're only hearing our discussion, maybe you could try to help people visualize what they'll see when they go to your site. What are the various areas they will find? What will they learn?
Mike: I’m trying to keep the site organized with a couple of categories to start with so that people can drill down. There's basically an area for the caregiver to get information about how to take care of themselves and how to deal with the disease. There's a section on patient care, so that's more about how to take care of your loved one or your friend who's impacted by the disease. I am always researching on how to find publications and tools that I review and authenticate. Then I have a whole publications and tools section that puts those all in one place. The idea is to try to help that family member who comes there to get information quickly without having to search and find it themselves.
I've done 11 online training courses now, with the extra one that I mentioned. They can find those training videos there on everything from aggression and behaviors to learning how to understand what reality their loved one with dementia may be experiencing, and how to cope with it.
Frank: I went to the site, Mike, and I saw that you have conducted interviews with people who have been diagnosed with the disease. What kind of experience has that been for you?
Mike: Thank you for bringing that up. For me, you have to talk to the people that are dealing with the disease to share proper information. It's been extremely eye opening. I came in with a lot of misconceptions. I pictured Alzheimer’s as the person in the wheelchair in the nursing home, or grandma sitting in her rocker and just being senile. It's so much different from that. And these folks that I've interviewed are living, at early ages, under 60, with a diagnosis. They're living positively and living well with the disease. They're sharing their diagnosis with people, because they have overcome the embarrassment that is associated with mental health. By doing that, they have opened up their world to let other people in to help them. That has helped them to stay socially active, and participate in society. That to me is more powerful than any medication.
They keep teaching me lessons. I cannot even keep up with them on the internet. A couple of them are active. Some were diagnosed more than 10 years ago with Alzheimer’s. One gentleman for instance, still uses his wood lathe and does wood working. So it's knocking down those misconceptions that we have as a society.
Frank: Have you set up, or thought about setting up forums for caregivers, or people with the disease, so they can communicate with one another online?
Mike: It's been in the back of my mind. There are some great forums right now. I see a lot on Facebook pages where people turn to get support from others, which is vital with this disease. For people with dementia, there are dementia mentors. A lot of people who are living with the disease are involved with that. So right now I'm observing them. I'd rather promote them at this time then try to, for lack of a better a word, compete with them.
Frank: What do you think has been the most sought after information on your site?
Mike: That is a great question. A lot of people come to my publications and tools section, so it's hard for me to tell exactly what they're downloading from that page. I recently released a guide for preparing your home for someone with Alzheimer’s. 80% or more of all people with dementia are cared for at home by an untrained family member. So making the home what I call Alzheimer's friendly is very important to allow them to live an enriched and happy life, and delay the need for any kind of assisted living situation. That guide is a really big hit.
I also get a lot of people who are dealing with behavioral issues like aggression and anxiety, so there are downloads from the webinar training course that we did on that.
Frank: I originally told you, no trick questions, I didn’t want to put you on the spot, but, I may put you on the spot here. Knowing that you are not coming from the industry, what are some of the most surprising things that you have learned? Relating to the industry of Alzheimer’s what are some of the things that come to mind that say “Wow, I never thought the information was going to be this way?” I know you mentioned going to the networking meetings with most of the people raising their hands. I'm sure that was enlightening. What other types of things come to mind?
Mike: I don't know why I thought of this, but as a person who doesn't have a close family member or friend with the disease, when I go out locally and tell people what I do, they're shocked. At first, I didn't really understand that, and they actually push me away because they feel like I have an ulterior motive. My true passion, in my heart, is all about helping, and as I mentioned to you right now, I don't have income from the site. Most people are going to nine-to-five jobs so they don't have the time like I do. People are often shocked when somebody wants to help, but who is not directly impacted by the disease. So I had to overcome that, and I'm not sure if that really answers your question.
We also got to help a lot of people open their minds and be willing to share about the disease with other people like neighbors and friends who do take an interest. Many people keep quiet about the disease, and even the professionals sometimes whisper about it, but we need to stop doing that. We need to talk out loud about it, we need to share it so that everybody can learn, because ignorance breeds fear. That's why neighbors hide from somebody that may have a mental illness.
Frank: That's a great point. Years ago I remember my grandparent passed away from cancer. No one would talk about it. It was the C-word. And now it's the same thing, the A-word (Alzheimer’s) or the D-word (dementia) but you're right. More and more people have to talk about it, and you can't be embarrassed by it. You see it everywhere. Being in the industry, I'll go out to a restaurant and I can almost tell if someone is having some cognitive issues, just because I work with it all the time. People need to be aware. There’s a higher percentage of elderly, and if there's a higher percentage of elderly, the percentage is going to keep going up as time goes by, with people who have the disease.
Mike: True, and just to elaborate on that for our listeners, here is a stat… They say worldwide there is a new case every 3.4 seconds. If you do the math, that is 28,000 cases a day of a person with dementia and their families. When you think that simply and say there are three stages of dementia, well, at least a third of them are in the early stage. That means there are 15 plus million people living with it, they're in line at the grocery stores, they are at restaurants and they are still participating in society. You would never know they had dementia. Some see the signs a little bit more than others. But as you know, even when you visit a memory care facility, you can be sitting in the lobby chatting with somebody, and you don't know if that person has dementia or is visiting. So because it's an invisible disease, we often don't realize it.
Frank: Have you found people are open with you and share information? Have you run into any obstacles or barriers in doing your research or in helping in the overall cause? What challenges have you experienced?
Mike: I've learned how to overcome them. They're not walking around with a sign on their back, they are not necessarily going into the healthcare events. To meet people in my community that are caregivers or who are living with the disease, it's relatively ... I shouldn't say impossible, but it's very hard. So to overcome that, I actually started attending support groups, because I wanted to hear from them. I wanted to see what their struggles were, what their pains and needs are. That was great, I made a lot of friends, and I was hugged more in just a couple weeks than probably I'd been hugged in 10 years; they wanted somebody coming in from the outside helping. Back to what I mentioned earlier,however, is that because I don't have a close connection to it, these organizations saw me as having an ulterior motive, and rather than talking to me about it, they simply asked me not to attend.
I understand the privacy concerns and respect that. So what I found is that it is actually much easier to meet people online, because they're out there engaging on Facebook groups, or they're looking for information. Especially the person living with dementia, that's how I've found the people I've interviewed and made online friends. That has been the biggest challenge — getting to the people and talking directly with them, and it's taking time, but I'm getting there.
Frank: I know you've been at it for a few years, but sometimes it's nice to ask this question of someone from the outside coming in. From what you can see, do you think our country is going to be ready for what we call the silver tsunami?
Mike: Absolutely not, I think the world in general is disconnected again, kind of like what happened with cancer research, and HIV research, everybody's off in their own silos looking for a cure, but this is potentially one of the most complex situations there is. We're talking about a brain, right? I personally wish we'd turn our focus from looking for a cure to providing care, and that's care for the family member who is trying to help a loved one with this disease, who has underestimated the complexity of it, and helping family, friends, neighbors come together with society -- that's the vision I have. I think we're very far away from that, and we're definitely not prepared.
Frank: Yes, I would tend to agree, unfortunately. And unfortunately I only have a couple minutes left, so what I'd like to ask you Mike, is if you could share with our listeners how they could learn more about your site, where they can go, any words of wisdom to those out there listening who might be confronted with a loved one who has been diagnosed with the disease.
Mike: People can live positively and well with Alzheimer's for many years. Harry, is still doing wood working after 10 years. That what's key for that family member. It is clear you need to get a proper diagnosis of what's going on. Oftentimes dementia can be caused by a medication or vitamin deficiency, so just because there are signs doesn't mean it's an incurable dementia such as Alzheimer's. And for us boomers and Gen Xers that are coming up, we're going to be around Alzheimer's and dementia, so it's important when we see a family friend or neighbor having a little difficulty in a situation to be sensitive to what's going on and help educate ourselves and them. We need to come together as a community to help these families who are impacted by the disease. If we do that, we can just make everyone's lives so much better, and reduce the need for assisted living, which will be busting at the seams because there won't be enough of them. To find more about me, you can go to togetherinthis.com, you can contact me through the contact form, or I have social media links there as well. You can also visit me on Facebook,Twitter or Google+.
Frank: Mike Good. togetherinthis.com, check it out, great site. Mike, thanks again for everything you do, and thanks for joining us on the Aging Boomers. I'd love to have you back so you can update us on how things are going, all right?
Mike: That sounds great, Frank, thank you very much.
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