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Driving, Dementia and Today’s Technology

Driving, Dementia and Today’s Technology

By Michael Ellenbogen

Michael behind the wheel

In 2010 I was thinking of buying a new car but I did not want to invest the money as I was not sure how much longer I would be able to drive. I live with dementia, and I feared I would need to stop driving any day. This went on for years and I was still able to drive. So I finally made the decision to buy a new car in 2013.

That was the best thing I could have done as the new technology helped make up for some of my skillsets that had weakened over the years. It not only improved my driving capabilities, it made me a much safer driver.

At the end of 2017 I had been reading about all the amazing new safety technologies that exist in some new cars. Knowing that these technologies would help make me a safer driver, I decided not to wait for more years to pass, and I went and bought a new car.

While I know not everyone can afford to do this, for those that can I highly recommend you look into using technology to your benefit if you are living with some type of dementia. The one problem I did run into was reading the new manuals and being able to apply the changes to the options. This time around it was much harder for me to read the manuals. My wife helps me greatly in setting it all up to insure it is set up the way I want it. While I may not be able to set it up I sure know how to use it is once it its set.

While there may be some features I will never know how to use, it is important to not fear making the change. This is the best thing I could have done, and I already love the safety features and how they are making driving so much easier.  This new car will allow me to drive much longer than I would have been capable of driving in my old car. I also had to limited my night time driving in the recent years as I had difficulty seeing the road at night. This new car changed that and I now feel very comfortable driving at night. I only wish the self-driving cars were available. I was also very surprised as I was able to still negotiate a great deal. I actually saved over $2,600 on the asking price. This disease is really amazing on how some skills are so impacted and yet others still work with some extra help.

Below are some of the safety features from Toyota. While the vehicle has these features, it is important to insure some of them are turned on in order to function the way they are intended to.

Anti-lock Brake System (ABS) – Helps prevent brakes from locking. The ABS monitors the speed of each wheel to detect locking. When it detects sudden braking, it will release braking pressure for a moment and then provide optimum braking pressure to each wheel. By repeating this process in a short period of time, it enhances steering control during sudden stops. As a result, it will also help improve the ability of stopping the vehicle.

Automatic High Beams (AHB) – is designed to help you see more clearly at night without blinding other drivers. Designed to activate at speeds above 25 mph, AHB rely on an in-vehicle camera to help detect the headlights of oncoming vehicles and taillights of preceding vehicles, then automatically toggle between high and low beams accordingly to provide the appropriate amount of light. By using high beams more frequently, the system may allow earlier detection of pedestrians and obstacles.

Bird’s Eye View Camera with Perimeter Scan – allows for drivers to check their surroundings with a full 360-degree view of their vehicle before pulling into a small parking spot or pulling up next to a curb. It provides a panoramic, seamless image in high definition that leaves no room for mistakes. With this system, drivers can rest assured knowing they’ll be able to detect any hazards before it’s too late. It uses cameras strategically mounted around the vehicle to give drivers.

Blind Spot Monitor (BSM) – indicator light up in the outside mirrors and hear a tone to confirm that the system has been engaged. When a vehicle in the next lane enters your blind spot on either side, the indicator will light up in that side view mirror. If you signal a lane change in that direction while the vehicle is still there, the indicator will flash to get your attention.

Brake Assist and Smart Stop Technology – This technology can sense when you hit the brakes in an emergency situation and apply even more force to help you stop faster and avoid a collision. The Smart Stop Technology automatically stops the vehicle when both the accelerator and the brake pedal is pressed at the same time, just in case you need to bring your new Toyota to a quick stop!

Dynamic Radar Cruise Control (DRCC) – is intended for highways and similar to “constant speed” cruise control, DRCC lets you drive at a preset speed. DRCC uses vehicle-to-vehicle distance control, which adjusts your speed, to help you maintain a preset distance from vehicles ahead of you that are driving at a slower speed. DRCC uses a front-grille-mounted radar and an in-vehicle camera to detect vehicles and their distance. If a driver is traveling slower than you, or within your preset range, DRCC will automatically slow your vehicle down without deactivating cruise control. If DRCC determines you need to slow down more, an audio and visual alert notifies you and brakes are applied. When there’s no longer a vehicle driving slower than your set speed in front of you, DRCC will then accelerate and regular cruise control will resume.

Electronic Brake-force Distribution (EBD) is incorporated in Toyota’s ABS technology.  EBD helps keep a vehicle more stable and balanced when braking.  During an abrupt stop, momentum can cause a vehicle to tilt forward, reducing the brake force of the rear tires.  EBD responds by redistributing brake force.  Wheels with more braking effectiveness receive more brake force and wheels with less effectiveness receive less brake force, helping to prevent brake lockup.  EBD is especially helpful when carrying cargo.  Sensors recognize the extra load the cargo puts on the rear axle, so brake pressure on the rear wheels is increased because the extra weight improves braking effectiveness.

Enhanced Vehicle Stability Control (VSC) – Helps prevent wheels from slipping sideways when cornering or sudden steering. VSC is a system that helps prevent side skids and help stabilize the vehicle while turning on a curve. When the vehicle senses a loss of traction or a slip, braking is automatically applied to all 4 individual wheels and engine power is reduced to help secure the safety of the vehicle. For example, if the steering wheel refuses to turn from over-speeding (under-steering), the vehicle will take control to steer toward the inner curve. Also, when the vehicle begins to spin from abrupt steering handling (over-steering), the vehicle will take control to steer toward the outer curve.

Front and Rear Parking Sonar – When your speed drops below 6 miles an hour, the sonar graphic will appear in the Multi-Information Display and you’ll hear beeping to warn you that the system senses another vehicle or obstacle very close to vehicle. If the transmission is in Drive, only the front sensors activate. When you shift into Reverse, both the front and rear sensors come online. The speed of the warning tone and color of the graphic will give you an idea of how close you are. A constant tone and red indicator means you are very close.

Lane Departure Alert (LDA) – Under certain circumstances, LDA is designed to detect lane departure on roads with clear markings. LDA only activates when you’re traveling at a speed of 32 mph or faster. When you hear and see the alert, after carefully checking the road around you, you should safely direct your vehicle back to the center of your lane.

Pre-Collision System (PCS) – Uses an integrated camera and laser or radar to help detect other vehicles in front of you. It can prompt you to take action using audio and visual alerts if it determines a frontal collision is likely. If you notice the potential collision and apply the brakes, PCS may apply additional force using Brake Assist (BA). If you don’t brake in time, PCS may automatically apply the brakes for you, helping to minimize the likelihood of a frontal collision or reduce its severity.

Pre-Collision System with Pedestrian Detection (PCS w/PD) – Using an in-vehicle camera and radar to help detect a vehicle or a pedestrian in front of you, the PCS w/PD can help you mitigate or avoid a potential collision. If the system determines that a frontal collision is likely, it prompts you to take action using audio and visual alerts. If you notice the potential collision and apply the brakes, PCS w/PD may apply additional force using Brake Assist (BA). If you don’t brake in time, it may automatically apply the brakes to reduce your speed, helping to minimize the likelihood of a frontal collision or reduce its severity.

Rear Cross Traffic Alert (RTCA) – helps when you’re backing out from a parking space, and the vehicle is in reverse and speed is less than 5 MPH. It detects vehicles approaching from the right or left rear traveling between 5 and 18 MPH. If the system senses cross traffic, it warns you by flashing the side near indicators and sounding a warning tone.

Traction Control (TRC) – Helps prevent wheel slippage when the vehicle is starting or accelerating on wet or slippery roads. When you are starting the vehicle, or accelerating on a wet surface, you could lose control of the wheel because of wheel spin. TRC will help prevent such events from happening. TRC continually monitors the condition between the tires and the surface of the road. When it detects wheel spin, the system applies brakes or slows down the engine to regulate spinning and help ensure proper contact of tires. This help prevents the car from becoming unstable. There might be the cases in which the half-side of the wheel runs off or the wheels spin off on the snowy road. And also there might be the case that the current traction control might not be working well. In those cases, Auto LSD is one of the technologies which both improve start ability and run ability.

Source: www.toyota.com

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Boating & Dementia – The Day My Dream Sank

The Day My Dream Sank

Boating and Dementia

By Michael Ellenbogen, Living with Dementia

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I have been a very lucky person. I have had the opportunity to own 5 boats in my life time. The last boat I had was sold because my wife and I had no time to use it because of our jobs. That was about 17 years ago. I really did not have the time again due to our work schedules.

Then came my diagnosis of Alzheimer’s disease (AD) in 2009 at age 49, after struggling to get a diagnosis for 10 years. Because of that I was forced to retire. The thought of owning a boat again never left my mind and I kept looking at boats but I had the fear that I would decline in another year or two and would no longer be able to control a boat.

I once had great skills and could easily control a twin-engine boat and move it sideways into any position I wanted. That requires lot of knowledge and multitasking. I was fairly sure I would not be able to do that anymore because of my AD. Over the years I kept looking at boats every chance I could and I just had this dream to buy another but I was so afraid of the added limitations that have been placed on me. Then I realized that the two years were now 4 to 6 years and while I did decline it was not as bad as I thought it would be. I guess I am also lucky there, if one could look at this dam disease in that way.

So I decided to look for a used boat.

While I found many, I was always afraid to buy them because of the possible repairs needed. That is another problem. I once was able to do most of the work on the engines and keep the boat well maintained. I am no longer capable of doing it for reasons I cannot even explain. I don’t even wash and maintain my car, which was always sparkling clean. Something in me has changed; something that would make me look lazy if you did not know I have AD. I just don’t do things anymore. So as you can see this would create many other issues, but I figured I was going to finally live out my dream. I used to say we were the poor boaters because we had to do all of the work, while many had their boats well maintained and they just came down to enjoy them.  That would add a lot to the cost but I knew this was my last opportunity if I was going to do this.

I have been able to find ways to make up for my inabilities.

was even looking for a boat that had what is called a bow thruster. That would allow me to have more control to make up for my loss of skills. This looking went on for years, and I finally came to the conclusion that I would look at a new boat to insure all of the issues would be handled under warranty.

As I tested new boats I found that the high-end boats had technology installed that would make up for my lost skills, and I was so relieved that I now felt very comfortable and all of the issues were now being addressed. But what was great with this new boat is it had a joystick feature. This option allows a novice to look like a professional. It’s almost like playing a game. Whichever way you move the joystick the boat does it all automatically. That is no easy task when you know what is involved. I find the new boats totally amazing. I also now had the confidence that I also knew in my mind that my wife would be able to step in if needed.

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I set my sights on 2016 Regal 35 Sport Coupe

After some negotiations I was having very high anxiety and fear of what I would consider the unknown. I was very surprised that my wife was even okay with making such a purchase. When it comes to deals I always got some of the best deals. With all of these issues and lack of commitment it is like being on a roller coaster.  One minute I wanted it so bad and then came so many fears and I was unsure of the ones I did not know of. One of my problems is that I can no longer see all of the issues at once but can only think about one at a time.

I finally told the sales guy of the issues and did not go through with the deal. He said if he could resolve all the issues I could take a test ride to see if I would feel comfortable being behind the wheel. They finally came back with such a great offer that I could not refuse. As we had to put things in writing I realized many of the things that made me feel comfortable were not being put in writing.  Things that were said were not the same. All this was creating even more anxiety for me. It does not take much to do that but all this started the roller coaster effect and feeling sick to my stomach at times, but I really wanted this boat, so I continued thinking we would overcome all this.

I was not being as sharp as I use to be

I also realized I was not being as sharp as I use to because I could not keep track of all of these issues and needed my wife to do it who just kept letting them getting away with each of these issues. I was also wondering what I did not know that I did not pick up on. I figured we could work this out by the final signing as I had made my request.

In the meantime, we started purchasing many items for the boat as it is like buying a new home in some ways and you need a lot of things. I had forgotten all that. I had made a list of items needed and went into the store to buy them. I came out spending a lot of money and bought many things. Then I realized most of the items on the list were not even purchased. That just created more concerns of my inabilities to get things done right and my wife was not helping as much as I was counting on. I had forgotten how expensive all this was. It was not the money but trying to keep track of all of these things. I just figured I would get over it but seeing them all pile up on my floor was starting to become a bit overwhelming and added to the already existing anxiety.

The night before the sea trail I had trouble sleeping. I had so much anxiety and fear. I even felt like I was going to have a heart attack as I was getting pain in my chest. I finally told my wife and she said we were not going to get the boat. I was so relived and prepared to do that.

But then we saw the boat again at our sea trail and it was such a great looking boat that I had decided to move forward with the deal and take the risk. I kept telling myself it would get better once it was over and I pushed on.

Sequencing is important to follow or I could damage the boat

When the captain came on board he started to explain how I needed to do certain thing in sequence otherwise I could do damage to the boat’s electronics. Here is a person who the day before had trouble using the remote for the TV. All of this makes me really question my abilities. Then there were the markers on the water I needed to follow.  I was a bit confused and concerned about doing the same as the captain when I was on my own. It did not help that most of the water in the area was low of 3.6 feet at mid tide.

There were some issues with the boat but think they could have been resolved.  But then again there were various markers that were being pointed out to me that I would need to remember later so I could navigate safely. In my mind I was wondering how I could possibly do that when I have so much difficulty remembering. Then as I looked around me on the open water I became panicky and scared as I just felt so overwhelmed that I was trying to hang on to a dream that I was no longer capable of doing. As much as I loved this boat and it was the best boat I had ever had for just one week. I had to finally come to the realization that my AD has made it impossible for me to do this safely.

I had such difficulty making decisions throughout all this time, and I believe my old self would have never even allowed me to spend so much money, but all of my executive functions seem to be a mess. I think the lesson to be learned here is that we must learn to simplify our lives, but that is easier said than done because I still want my boat. I realized deep down it has to be this way but it does not make it easier.

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It’s times like this when I really hate this dam disease.

It has taken away all of my hobbies. So I guess that last boat did not count since I only kind of owned it for a week. This is just so hard for me to accept.

Here is a Dementia Chats Session when we talked about decision making and Michael shared with the group more details about deciding to purchase a boat or not.

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Dementia-Friendly Vision For State and National Implementation

Dementia-Friendly Vision

For State and National Implementation

By Michael Ellenbogen

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For anyone who knows Michael Ellenbogen, this 51 page report will not surprise you one bit in terms of the detail and thought this man living with dementia has put into this paper.  Michael is one of the strongest voices and well connected to boot, of people living with dementia and trying to improve life for the next person diagnosed.  Michael was the first person diagnosed with dementia to speak to the World Health Organization last year.  Yet Michael will be the first to say, he is just one of many wonderful hard working people who is diagnosed with dementia trying to improve life for those living with the disease and those that care for them.

Given the length of the document I will not post it here, but instead give you a link to Read and Download It.

I would love to hear your thoughts and comments once you’ve had a chance to review it.  What do you agree or disagree with?  What else do you think is needed?  Talk to us and share your ideas with the world.

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Join Dementia Chats Tuesday Morning

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Join us and meet some of our experts:  Harry Urban, Paulan Gordon, Michael Ellenbogen, Truthful Loving Kindness, Laurie Scherrer, Robert Bowles, Faith Riverstone.

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Important Announcement – Dementia Chats Webinars Changes Time

Important Announcement 

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Help Spread The Global Symbol For All Dementias – The Purple Angel Documentary

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Brilliant and Bold Commentary Regarding People with Dementia Being Activists

Here is the brilliant and bold commentary regarding people with dementia being activists.  I personally want to thank Eilon Caspi for submitting such a well thought out piece.  This is something everyone concerned about dementia should read.

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June 3, 2015

Commentary on Michael Ellenbogen’s Statement as Quoted in a Washington Post Article by Fredrick Kunkle on May 27, 2015: More people with Alzheimer’s are becoming activists – which brings its own challenges. The article can be accessed here: http://tinyurl.com/p87dz9e

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During a recent meeting of the National Advisory Council on Alzheimer’s Research, Care and Services held on January 26 this year, a staffer read aloud Michael Ellenbogen’s statement:

“What do we need to do to get the attention of people like you? Will it take someone like me to have some sort of shootout like Columbine before someone will take notice? I would not do that but I am trying to get your attention, and I am failing and dying at the same time.”

This statement has led the Department of Health and Human Services (the federal agency that hosts the meetings of National Advisory Council on Alzheimer’s Research, Care and Services) to consider Michael a security threat and to ban him from its premises. In addition, the Alzheimer’s Association disassociated itself from him and told him that he could no longer speak for them.

Does Michael’s statement represent a serious problem and real threat? Or does it represent an opportunity to bring real change in the rights, perception, approach, care, quality of life, and dignity of millions of people living with dementia?

As a society, we have a choice here and my hope is that a serious dialogue will continue to be held about this complex ethical concern, and that it will be possible to carefully sort it out so that we’ll end up choosing the most constructive, dementia-friendly, responsible, safe, and humane option. The stakes are high.

Does these organizations’ response reflect a “dementia-friendly” and “person-directed” approach or more of a biomedical, psychiatric, pathology-oriented, and fear-based approach towards people living with dementia?

Does the response reflect the way our society relates to and treats these individuals? Is it a reflection of the persisting and harmful stigma widely-held about this population?

Should it be concerning that this response is coming from organizations that are supposed to have deep understanding of the lived experience of people with dementia?

Nobody should have to feel offended, threatened, or concerned for their safety by anyone’s remarks, including those made by people with dementia. With adequate and timely support, people in the earlier stages of dementia can and should take responsibility for their words and actions and, if they made other people feel threatened, they need to apologize and actively work hard (within their cognitive limitations and abilities) to find ways to avoid making such statements in the future.

I believe that several dementia-specific person-directed practice principles need to be taken into consideration in this case. These include:

One of the fundamental principles of communication with persons living with dementia is to listen to the underlying emotional message behind the words. Did these organizations truly follow this basic rule? This is not to suggest in any way that the statement should not be carefully and professionally evaluated (see below). Any real, implied, or perceived threat to the safety of people should be promptly and seriously reviewed and evaluated, no matter if the person expressing them has dementia or not.

A second principle is to get to know the life history of persons living with dementia in an in-depth manner. Doing so often helps understand the person and his verbal, non-verbal, and behavioral expressions in the present. Did anyone take the necessary time to learn about Michael’s remote and recent life history thoroughly and directly from him, his wife, his close friends, or from reading his heartbreaking and eye-opening book? The name of Michael’s book is From the Corner Office to Alzheimer’s Disease. For those interested, my review of Michael’s book is available on Alzheimer’s Speaks Blog using this link: http://tinyurl.com/qyz8k9c

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Doing so, would enable to put Michael’s statement in a life-course perspective (e.g. How much he has done and sacrificed personally to improve the lives of thousands of other people living with dementia around the world; if Michael has explicitly expressed in the past that he is considering hurt someone, to my knowledge, it was in the context of ending his own life because of the worsening disabilities caused by his dementia and his wish not to become a burden on his family). Learning about Michael’s recent life-history would also enable to take into full consideration his unimaginable psychological suffering caused by the disease combined with the frustrations caused by lack of sufficient progress in developing (and adequately funding) psychosocial approaches (formerly called non-pharmacological approaches) to support and meet the human needs of people living with the disease and their care partners (family and paid). This, I believe, is likely the context for Michael’s statement.

A third principle is that many people with dementia may say things that they don’t intend and/or would not otherwise say if they were cognitively healthy (most would be mortified if they knew what they have said). Here I relate to problems with impulse control, disinhibitions, lower ability to regulate emotions such as strong frustration and anger, as well as reduced ability to anticipate the consequences of one’s statements.

If Michael would be willing, a compassionate whole-person interdisciplinary assessment could bring to the surface insights into his actual thinking process, cognitive disabilities and abilities, and his personal perception of the situation. Results of such assessment could inform the way this event could be perceived, revisited, and resolved.

Skilled experts should be able to sit with Michael as equals and assess his condition and thought process and determine whether he is truly considered a threat to others. I doubt it but given that the statement has already been made, perhaps this needs to be done to reassure the public and the organizations in question and others with which Michael collaborates that their safety is not under threat. If determined otherwise, then a humane and respectful approach should be considered and implemented to ensure the safety of people in these organizations and the general public.

Michael’s criminal record should be reviewed to rule out any possibility that he has made serious threats to harm others or has been violent in the past (before and after his dementia onset). Again, to reassure people who truly felt threatened for their or others’ safety, I believe that this needs to be done. Physically aggressive behavior and violent tendencies in people’s past often (though not always) predict similar behaviors in the future (whether one has dementia or not).

Some people with specific Dementias such as the behavioral variant of Fronton-Temporal Dementia, Korsakoff’s Syndrome, Chronic Traumatic Encephalopathy, among other forms of dementia, are more prone to and capable of inflicting serious harm to those around them. If not done very recently, an accurate diagnosis and assessment could and should be conducted with Michael. Even if he is diagnosed with one of those forms of dementia shown in the past to have higher probability of engaging in physically violent behaviors towards others, it still doesn’t necessarily mean that he, or other people with these conditions, will engage in violent behaviors towards others. Every person with dementia is unique and the actual impact of dementia on every person is different. Ongoing interdisciplinary individualized assessment is the key.

A fourth principle is that by far the most important asset we can have when we interact and care for persons living with dementia is developing close trusting relationships with them. This is hard to build and maintain and easily destroyed. Once you develop it, you are in a good position to truly understand the person and the underlying meaning of his/her verbal and non-verbal expressions. In this case, it could enable these and other organizations in interpreting Michael’s statement as a desperate call from an aching heart for a fundamental change in the way our society perceives, approaches, cares for, and treats these individuals. How many people from these organizations took the time and effort to develop and maintain this close trusting relationship with Michael?

I do know that a few people involved in the Advisory Council did try to assist Michael over the years to increase the likelihood that his messages in his speeches will be more receptive by and less offensive towards council members. I do not know the extent to which these efforts were successful in the past but clearly it wasn’t this time.

The fifth principle is that dementia is a disability (see Americans with Disability Act) but cognitive disability tends to be invisible. This creates the potentially dangerous illusion that persons living with dementia are fully capable of functioning as people with healthy brains. An experienced and skilled professional should have been assigned to review Michael’s transcript several days prior to the speech. It sounds as though his transcript was either not reviewed or not carefully reviewed. If it was, the statement would have been easily identified, brought to Michael’s attention, and, knowing him, he would have left it out and the ordeal would have been prevented.

Which leads me to the sixth principle. Preparation, preparation, preparation. Or being proactive, rather than reactive. Unfortunately, in the majority of interactions with people with dementia most people and organizations still use a reactive approach (i.e. the tendency to respond only after a problem occurs; nursing homes are a sad example of that but this is also very common at the home setting with burned out and unsupported family members and in the community in general). This approach is inconsistent with the Anticipatory Care Approach to people with dementia (coined by Prof. Christine Kovach).

Were the conditions for success proactively and thoughtfully created for Michael before his words were read at that meeting? The voice of people living with dementia is too precious to be left without gentle and attentive professional guidance (which must be done collaboratively in a true partnership with these individuals). Working with Michael on his transcript while preserving his key messages in a respectful way and at the same time alerting him for potentially problematic statements would have avoided the unfortunate event. Without downplaying the fact that Michael freely chose to use these words, it also begs the question of Did the staffer who read Michael’s statement during the meeting identified the problem prior to the meeting (i.e., during his/her preparation for the reading) and, if so, what did he/she do about it when he/she discovered it?

The seventh principle is that person-directed approaches to people living with dementia should be driven predominantly by focusing on their remaining abilities, not their disabilities. Their disabilities need to be proactively identified and compensated for in a timely manner. They need our help and support to function the best they can despite their limitations.

True “culture change” means being guided by hope, not fear. By opportunities for thriving and innovation, not life-limiting barriers used (too often) in the name of safety. Take the sad example of typical nursing homes, which focus excessively on safety and while doing so often deprive people with dementia of their right to adapted autonomy and life worth living. Again, this is not to suggest that safety of people should not be protected; it must but in a reasonable and wise way and always based on skilled, ongoing, and timely individual assessment.

Could it be that this event reflects blame the victim approach? Is Michael being blamed for using these words when there is a reasonable likelihood that the limitations caused by his dementia have contributed if not directly caused him to choose this statement? Michael himself acknowledged it. This approach is used frequently in all settings were people with dementia live and during daily interactions with them in the community.

Mourning the losses each step of the person’s journey with dementia and genuine acceptance of the changes that come along with it are critical for the ability to support them, understand them, work with them, and gain from their invaluable insights. These organizations know this principle well but did they truly walk the walk in this case? Nobody ever said that working with and caring for people with dementia is easy. It requires tremendous amount of empathy, patience, determination, and creativity.

Has Michael, whom I know to be a very compassionate, and empathic person, ever said anything of this nature to anyone around him…family members, friends, co-workers, neighbors? I doubt it, but this could and should be checked to reassure people that he doesn’t have these lifelong inclinations.

Michael’s words were read already

Michael’s words were read already, but it is worth restating that at the same sentence he was quoted saying that he won’t do it. Did this part of the sentence receive the appropriate weight in this discussion? Once a person with dementia is labeled “violent” or “security threat” we tend to stop seeing who the person really is and what caused him to say what he said. There is always a good reason and function behind verbal and behavioral expressions of persons with dementia. It is the job of people who come in contact with those living with dementia to decode and identify the reasons and fulfill their unmet human needs, which commonly underlie their verbal and behavioral expressions.

My remote reading of this incident is that it was a reflection of tremendous frustration accumulated over several years of Michael’s passionate, courageous, and determined advocacy work for (not against) the well being and safety of countless people living with dementia and those who care for them or otherwise interact with them in the community.

Michael’s dementia painfully progresses and, while he had numerous accomplishments in his advocacy work in recent years, he also experienced heartbreaking failures. Michael also copes with tremendous health challenges beyond his dementia. It is well known in the field that when people with dementia are under pressure (existential, health-related, and situational), they may say things that they would have not have said if they were cognitively healthy. As noted above, their frustration and anger threshold is lower than that of people without a serious brain disease. Looking at Michael (such as the picture published in the Washington Post article), it is very easy to forget that Alzheimer’s is a terminal disease.

Using an empathic approach to people living with dementia means doing everything we can to try and “step into their shoes” and strive to understand their lived experience. I believe that if the decision makers in the organizations in question would live a single 24-hour day in the shoes of people living with dementia, the whole case would either be prevented to begin with or approached differently after it occurred. We do it all the time with people with dementia. We assume things about them and then we (quickly) act upon these assumptions. My advice: Get to know Michael first as a whole human being, then his dementia, disabilities caused by it, as well as his remaining abilities (there are still many), and only then decide what would be the most reasonable course of action. If this has been thoroughly done, I take these last words back.

Michael has already apologized for his statement and should be released from the misery that this situation has brought him. While of course in no way I or anyone else should justify or support his statement, I think that it is important to recall and think about the main issue here: What did he actually try to accomplish on that day? Make people angry and feel threatened? Or improve the lives of people who struggle tremendously living with the disease in a society that does not provide adequate infrastructure to support them and their family and paid care partners?

If Michael needs additional and closer guidance in crafting his future speeches, this could be done without too much effort (I and I’m sure others will be willing to work with him on reviewing his future transcripts prior to his speeches). Ongoing, skilled, attentive, compassionate, and timely guidance could enable him to be successful in his advocacy work. Isn’t this what interacting and caring for people living with dementia is all about?

We have to remember that the true experts when it comes to the lived experience of dementia are people with dementia themselves.

They are the best teachers we have. Michael is not the only leading advocate when it comes to promoting the rights of people living with dementia. Good examples include Richard Taylor, Harry Urban, Robert Bowels, Kate Swaffer, and Sandy Halperin to name a few.

For Michael’s sake and for all other current and future leading advocates living with dementia who dedicate their lives for this human rights and public health issue, I believe that a serious reflection and discussion needs to be held to ensure that we do not fall into the trap of inadvertently being driven by the widely-held stigma and fear in our society about people living with dementia.

I believe that the voices of millions of people with dementia around the world, which are not heard due to their brain disease, can and should continue to be heard through Michael’s courageous voice and vision for a dementia-friendly society, as long as he still can…

In Michael’s words, “Never give up with your dreams, and drive forward until the end. You can still make a difference. Try to advocate for the ones who cannot, because we will be them one day.”

Would discontinuing collaborations with Michael end up doing disservice to a large and growing number of people with dementia who are no longer capable of advocating for themselves?

questioning_graphic

Let it be a story of hope, not fear. Of responsible compassion. Of true human connection and inclusion, not exclusion. Of true learning, not labeling. Of innovation, creativity, and progress. Of deep appreciation of what it means to be human and the importance of being interdependent on each other.

In the words of the late Prof. Tom Kitwood, author of the groundbreaking book, Dementia Reconsidered: The Person Comes First, “People with dementia may have something to teach the rest of human kind. If we make the venture one of genuine and open engagement, we will learn a great deal about ourselves.”

Copy of DC_HQ_062714_bannerpurple Disclosure: The author of this article have known Michael for over 2 years primarily from volunteering with him on the Dementia Chats webinar platform of Alzheimer’s Speaks (founder, Lori La Bey). The author did not attend any of the aforementioned Advisory Meetings.

Eilon Caspi picEilon Caspi Ph.D., Gerontologist & Dementia Behavior Specialist

Author of the upcoming book: The Guidebook for Prevention of Resident-to-Resident aggression in Dementia. Health Professions Press.

Website: http://eiloncaspi.com 

Archival Blog on Resident-to-Resident Aggression in Dementia: http://eiloncaspiabbr.tumblr.com

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