On day four of DAI's World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia. Thank you Mike, for allowing us to share it here, and for being so actively involved in one of our peer to peer support groups, in our Action group, as well as representing DAI as a keynote speaker at the ADI2018 conference in Chicago.
I STILL have a life to live
Hello, my name is Mike Belleville. A little bit about myself, I was diagnosed with younger onset Alzheimer’s when I was 52 ½, and 2 ½ years ago my diagnosis was changed to Lewy Body Dementia. I am now 57 ½.
My wife Cheryl and I were obviously shocked to get such a diagnosis and I have to admit I went into a deep depression afterwards. I was very involved in my community at the time, serving on a number of our town’s committees where we lived.
All that stopped after the diagnosis and after a few months my beautiful wife of 37 years said enough is enough. How fortunate was I that she decided to call our local Alzheimer’s Association chapter here in Massachusetts, USA. We met with a consultant, started to attend support group sessions together and went to their education programs.
It was there that they made me realize that I STILL have a life to live, I can STILLlearn new things, I can STILLdo the things I enjoy doing and most importantly that I STILLhave a voice and I plan on using that voice for as long as I can. I tell people that the Alzheimer’s Association saved my life (obviously not the literal sense). But they gave me my voice back and I am now trying to use it to advocate for all of us who are living with any form of dementia and our care partners. I want to let people know who may have been given this diagnosis that you can still live a very productive meaningful life and that you still have so much to offer to others, I also want to educate people who may not know about the disease to help eliminate the stigmas that are associated with it.
I love movies and one of my favorites is Shawshank Redemption. I love Morgan Freeman (I wish I had his voice LOL) he repeats a line in the movie that Timothy Robbins told him:
“Get busy living or get busy dying.”
I have chosen to get busy living. I have been fortunate to be involved with a number of organizations but nothing quite like Dementia Alliance International.
DAI is helping people like me and countless others use their voice to help make a difference. They offer educational seminars, online virtual support groups and are leading the way Internationally in getting the stigma reduced when it comes to what people think about when they hear the word dementia and even more importantly they are on the front lines in getting world leaders and organizations to rethink how they are treating people living with dementia. Thank you, DAI, for helping all of us to continue to live a life most people think we couldn’t after getting our diagnosis.
Mike Belleville © 2018
Please consider making a donation to DAI, so that DAI can continue to support members like Mike.
The following is an examaple of Mike using his voice as a keynote speaker at the ADI Conference in Chicago. You can watch his excellent presentataion here, and read his full speech notes below.
https://youtu.be/9XVe1rZ-Zww
PEOPLE WITH DEMENTIA AND ASSISTIVE TECHNOLOGIES
Co-authored by Mike Belleville and Carole Mulliken © 2018
Presented at ADI Chicago by Mike Belleville
| Hello everybody, my name is Mike Belleville. I am a member of the Dementia Alliance International or DAI, which is an online group of people with dementia determined to demonstrate that a person can live well with dementia. DAI members are here at the conference, and are eager to speak to you, so when you spot one of us, please come up and say hello. We’re all happy to answer any of your questions and share our own journeys with you. |
| Marianne Schulze (2010) explained that It is our right as disabled adults to be treated respectfully and as whole human adults with access to all aspects of life. 1. We miss our healthy brains. Try driving across the country in a four-cylinder car with only three cylinders working right. You’d be frustrated, fearful, and exasperated the whole time. Now imagine what it is like to “drive” a brainthat works like that. Is it any wonder that we get so irritable? 2. The best technologies and innovations improve one or more parts of our brains to function nearly the way they worked before our diagnosis. 3. You can help grant our fourth wish, we need our service providers, and our governments to help minimize all the stressors placed on our family and friends by our dementia. Please do! |
| We’re not naïve enough to think that technology can prevent families from experiencing the financial devastation that dementia can cause, but we believe that technology can minimize its impact early in the disease process and allow people to live at home longer. Let’s talk about three types of promising technologies. |
| Sociologist Read Bain stated in 1937 that, "technology includes all tools, machines, utensils, weapons, instruments, housing, clothing, communicating and transporting devices and the skills by which we produce and use them. Bain's definition is still being used among scholars and social scientists. We at DAI believe in both the scientific and the social science definitions. Sadly, far too few people with dementia ever get offered the soft technologies (with the exceptions of prayer and meditation) because soft technologies never occur to either their doctors or their caregivers. Yet their importance cannot be overstated. Volumes of research support the effectiveness of the “soft” approaches that are listed in the slide. No-one with dementia wants to have human relationships replaced only by hard technologies. |
| The late Joe Eades of Saint Louis was a plastic and reconstructive surgeon who spent several months each year in third world countries, surgically repairing impoverished children with facial deformities for free. But Alzheimer’s cut his career and his life short. Joe’s therapist wife, Virginia Eades, used her Christian beliefs and therapy training to assure Joe remained joyous and feeling loved throughout his Alzheimer’s journey. This picture of Joe was taken within six months of his passing. |
| Our favorite technology is living, breathing; furry tech. Furry companions often replace the people who disappear from our lives after diagnosis. These technicians have sensory skills, which we lack. Breeders have spent centuries developing animals who can understand, appreciate, and respond to human needs. Furry technicians help us control our moods and reduce agitation. Pets listen, show appreciation, play, don’t judge us for our losses, comfort us, kiss us, keep us safe, take us home, and sometimes connect us with others. Dogs are often social catalysts throughout the disease process. Morrison (2007) reported statistically significant improvements in blood pressure, heart rate and in depression, anxiety, perception of quality of health and loneliness. The artist for the left side photo is, unfortunately, unknown. |
| Many tens of thousands of research investigations into noninvasive brain treatments + various dementias can be found on Google Scholar alone. We do not follow all these studies, although my collaborator Carole participated in two of them. There are numerous other non-invasive treatments under investigation. A study in photobiomodulation through the Quiet Mind Foundation currently seeks participants. See the last slide. And, of course, studies of much more invasive treatments like the implanted pacemaker for the brain exist as well. |
| “Nearly 90% of adults age 65+ want to stay in their current home and community as they age,” reports AARP. It is no different for people with dementia. Additionally, for people with dementia, their online CONNECTIONS may delay their ADMISSION to expensive care facilities indefinitely. The addition of online relationships can help reduce a caregiver’s burden as being the only social/emotional connection remaining for a person living with dementia. Now I’d like to introduce an entrepreneurial proposal, but to get there, we need to take a brief side trip into neuropsychology. |
| Glenn Smith’s work at the Mayo Clinic studied the cognitive abilities of people with four different types of dementia: Alzheimer’s, vascular dementia, dementia with Lewy bodies, and frontotemporal dementia. We greatly appreciate his generosity in allowing us to share his findings. Smith aggregated the neuropsychological profile results of lots of people with these four different types of dementia. The starred horizontal green line indicates the mean scores. If people all had equal ability in every capacity, they would score exactly at the mean (represented as being at the 0.0 level). But people aren’t like that. They have relative strengths and weaknesses among the cognitive domains like verbal comprehension and learning retention shown within the blue box. As you can see, the four dementias reflect WIDELY different cognitive capacities. For example, people with Lewy body dementia bottom out on one subtest where all three other types have results close to average, right along the mean. Smith’s study was published in Nature Reviews Neurology on Nov. 1, 2011. It is most important to keep in mind the extreme variance among the types. Tools designed to help people with one type of dementia may be of no help to people with a different type of dementia. Now we can talk about a potential entrepreneurial opportunity. |
| Most people know what a smart home can do for them. Deloitte describes many of them. However, we have a vision of what a smart home retrofit for people with dementia could be. What if there were a wearable device, a sensor that could detect agitation and anxiety? And what if that sensor could trigger a smart home to initiate a predetermined response tailored that person’s need. For me, it could be turning on my TV and playing a video of my wife or better yet, sending my wife a text message alerting her of my agitation, and she could call my TV that would be equipped with a Webcam so we could have a conversation. For someone else, it could be automatically turning on a Bluetooth speaker and playing a favorite music playlist. I hope you can see that the possibilities are endless. There are hundreds of sensors and hundreds of “what ifs”. I haven’t even gone into some of the safety features that could be incorporated into a smart home retrofit. One does not have to move to get into a smart home. We believe that one’s existing and already familiar home can be made smart with a retrofit. Those explorations can offer innovators and entrepreneurs intriguing possibilities. Just for grins, you can search You tube for “smart robots 2018” to see the newest bots, something else we don’t have enough time to delve into. |
| We need new SPECIALISTS – dementia “outfitters” -- to help tailor the components of a smart home retrofit to the needs of that individual. A recent slide showed some strengths and weaknesses of people with just four types of dementia. That is a starting point for an outfitter, but those are not profiles of one person. A dementia “outfitter” would make use of an individual neuropsychological profile, the needs of his/her family and the outfitter’s own detailed personal notes as a clinical observer. An outfitter could then purchase the equipment needed and install the equipment. Then train the person and his/her family how to use their new smart home. An outfitter is a medical/technical and a behavioral dementia specialist. Outfitters will combine training in cognitive neuropsychology with training in technology installation, in teaching, and maybe a few other things. Few if any people have all those skills. However, a nimble-minded entrepreneur willing to cobble together such diverse training would be a trailblazer in an entirely new specialization. MarketsandMarkets predicts the Smart Home Market to be worth 137.91 Billion USD by 2023. |
| Now, please study the profile of one of the four individuals described in this slide. Panelists, you do this as well, please. Can you list three existing technologies that should be in a smart home retrofit for this person. Think of two that have not been developed yet -- but should be. LEAVE AS MUCH TIME AS POSSIBLE…. OK. Are you challenged? Do you see the huge need and the entrepreneurial opportunity? Can you see the potential to keep a person living with dementia living at home longer? I would love to pose a challenge to anyone here that may have the authority, the expertise, and the financial means to help develop dementia outfitters. You can team up with a neuropsychologist, a person with dementia, another techie, and a learning disabilities teacher to make a difference in the lives of people with dementia and equally as important, in the lives of their families. |
| We hope you can see how “Dementia outfitters” can bring back an element of HOPE to people who need it most.We are not looking for technology to replace the things that we’ve lost the ability to do, rather we want it to enhance our lives allowing us to continue to live in our homes for as long as possible and with the respect and dignity that we all deserve. We also believe that this new potential opportunity cannot be fully realized without the input of experts and those experts are people living with dementia. Thank you for listening and for being here, you were a great audience. |
If you would like the power point slides, please email us at [email protected]