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Posts Tagged ‘Michael Ellenbogen’

Cruising with Dementia

Alzheimer’s Speaks Radio

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Dementia: Learning to Shift from Crisis to Comfort

November 11th – 18th, 2017

This cruise is ideal for anyone dealing with or who has dealt with dementia. If you fall into any of these categories, you will find this week-long Bahama’s cruise a must for you and your family.

  • Those diagnosed with early to mid-dementia are welcome to join us with their Care Partner (family, friends and/or professional).
  • Families and friends who have a loved one with dementia
  • Professionals working with those dealing with dementia.
  • Advocates for dementia.

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Join Us as we Relax, Rejuvenate,

Get Educated and Connected

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Radio Host, Lori La Bey founder of Alzheimer’s Speaks has pulled a very special team together for a one of kind heartfelt cruise filled with fun, life lessons, techniques and insights to assist all parties with understanding and meeting the needs of those dealing with diagnosis.

The team’s goal is to provide a comfortable setting to relax and learn. By coming together as a common community, we can assist individuals, families and friends along with professionals to integrate life with dementia; maximizing moments and identifying and creating joy.  You will learn simple techniques which have a huge impact, which allows individuals to live graciously with the disease. There will be plenty of time to relax and play while you mix in a much-needed vacation in a supportive, uplifting learning atmosphere.

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A Cruise of Hope!

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Alzheimer’s Speaks and Kathy Shoaf, RN, BSN, ATP of Elite Cruises and Vacation have given a lot of thought to this collaboration and are very excited to bring people together for a common cause to learn, share insights and build a new community of support filled with great resources.  Not only will you learn from two dynamos’ shifting dementia care here in the United States, but these two are collaborating with others around the world to give you expansive knowledge and cutting edge information.

A Dynamic Duo at Your Call: 

Lori La Bey & Cyndy Luzinski

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Lori La Bey –

Moving Humanity Forward

Lori La Bey is the founder of Alzheimer’s Speaks, a Minnesota based advocacy group making an international impact and providing education and support for those dealing with Alzheimer’s disease and other dementias.  Her own mother struggled with dementia for over 30 years.

Lori is a highly sought after speaker, trainer, and advocate for new delivery systems and attitudes towards those with memory loss.   In November of 2013, she was appointed to be an International Ambassador for the Purple Angel Project, the new global symbol for dementia.

Lori ignited the fire that sparked what is believed to be the first Memory Café in the U.S. in Roseville, Minnesota in 2011, and the first Dementia Friendly Community in the United States, in Watertown, Wisconsin in 2013. She was also involved with the launching of Dementia Caregivers Re-Entry Initiative fall of 2016.

Named the “#1 Influencer Online for Alzheimer’s” by Sharecare and Dr. Oz

In the fall of 2015, Lori become a Platinum Sponsor and helped launch the new Hollywood film, “His Neighbor Phil,” which highlights a wide range of emotions families struggle with, as well as the great depths of simple joys while on their path with dementia.  The film and talk back will be part of this cruise.

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Lori is driven to provide a variety of free resources to connect family, friends, professionals, advocates and those just interested in learning how to live positive and purpose filled lives with dementia.

Lori La Bey’s show, Alzheimer’s Speaks Radio is also believed to be the first program dedicated to dementia in the world, along with the first webinar series called, “Dementia Chats™,” whose experts are those diagnosed with the disease.  Her goal is to continue to develop and provide unique delivery systems that have 24/7 access.

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Cyndy Luzinski

A Mover & Shaker making a Difference!

Cyndy Luzinski is an advanced practice nurse and dementia practitioner. She is a strong advocate for community collaboration and providing person centered dementia care. She is especially enthused to help others learn one of the person-centered care approaches called “Contented Dementia” because she has experienced how this simple approach makes remarkable differences in the lives of those who use it. Cyndy enjoys one on one consultation with families and facilitating a dementia care partners’ support group and two Memory Cafes in Fort Collins, CO. She is passionate about helping people discover that there is still a lot of living to do and joy to be shared even when dementia becomes part of the life journey. Cyndy is part of the Northern Colorado Music & Memory team and is also on the B Sharp Arts Engagement team responsible for the innovative program which allows people living with dementia and their care partners to attend the Fort Collins Symphony and participate in a research study related to music and cognition. She was named by the Coloradoan’s Mind + Body magazine as one of the 2016 Northern Colorado Superwomen.   Cyndy is the founder of the volunteer initiative to build and sustain “Dementia-Friendly Communities of Northern Colorado.”

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Lori La Bey & Cyndy Luzinski

Actively Changing How Caregiving is

Perceived, Received and Delivered

Lori La Bey and/or Cyndy Luzinski will facilitate discussions with those who know the disease best, as part of our team is living with a dementia diagnosis!

Yes, You Read that Right

You will be shocked and grateful for the honesty and insights you will gain from those living with the disease.  Each Expert Panelist is an international advocate.

Expert Panelists are International Advocates

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Michael Ellenbogen

An International Dementia Advocate & Connector

Michael is currently in his mid-fifties. Michael was diagnosed with Alzheimer’s Disease at the age of 49. He no longer can work and had to give up his career as a high-level manager in Information Technology. Michael now spends his time increasing awareness of this disease, and works to increase funding for research. He also wrote a book called, “From the Corner Office to Alzheimer’s,”  Which outlines his experience with Alzheimer’s.  Michael serves on the Leadership Board for Dementia Action Alliance and is a Dementia Advisor for USAgainstAlzheimer’s.

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Laurie Scherrer

Teaches Us How to Live Beyond the Diagnosis

Laurie was diagnosed with Early Onset Alzheimer’s & FTD in August of 2013. Unable to continue a professional career she turned her focus towards helping others through their dementia journey. She is a Dementia Mentor and active in many support groups. On her website, dementiadaze.com Laurie shares her feelings, challenges and symptoms in hopes of encouraging other Persons with Dementia to explore a life well lived with disease. Laurie is on the technology committee for Dementia Action Alliance.

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Harry Urban

A Calming Voice in Trying Times

Harry Urban’s life changed 13 years ago, when his world came crashing down on him with a diagnosis of dementia, of the Alzheimer’s type. Harry has refused to let the diagnosis ruin his life and so he created a social medial group called “Forget Me Not,” on Facebook which expanded to several sub – groups along with a Spanish group called No Me Olvides which is a dementia group designed for the Spanish community.

Harry writes a blog called “My Thoughts on Dementia” where he records his daily thoughts and feeling living with dementia. He also Co-founded a group called “Dementia Mentors” that provides mentors for any form of dementia.

Harry’s latest attempt to raise dementia awareness is creating a webinar called “Welcome to My World with Harry Urban” which features people living with dementia discussing ways they have adapted to their dementia and what they do to find happiness living with dementia.  Harry is a voice that inspires us all.

Each of our Experts living with dementia is a founding member of Dementia Chats™ a free webinar series which discusses everyday topics and has brilliant insights to help those diagnosed and those dealing with dementia live better together.  Dementia Chats Mission is to Shift Our Dementia Care Culture™. Our goal is to remove stigmas related to the disease by engaging people in conversation, answering their questions, listening to their comments and raising awareness in a positive light. We are firm believers in giving hope and empowering others to live with the disease not as the disease.

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Receive Resources, Tips & Tools

In addition to having a great time while you meet others with similar interests, you will receive access to resources, tips and tools to help you live better with and alongside dementia. Join us as we set sail together to become dementia friendly.

Learn About the New Global Symbol

for Dementia

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The Purple Angel symbolizes a guardian over those living with dementia, their families and friends and those helping to raise awareness of the disease. The Purple Angel Project became embraced by individuals and organizations around the world and so the globe was added to show the impact and collaboration of this movement.  Now, there is one symbol representing a global message raising awareness, hope and empowerment for all people living with dementia, their families and care partners.

Join Us as We Set Sail to

Shift from Crisis to Comfort Together

Our Itinerary and Tentative Progaming

Nov. 11th, 2017, Saturday – Private Cocktail Party prior to dinner

Ft. Lauderdale – Head Out to Sea

Nov 12th, 2017, Sunday – Time TBD – Am Devotion

Bahama’s       9:30am- 11:30am Program

Optional Land Excursions

Nov. 13th, 2017, Monday –  Time TBD – Am Devotion

At Sea      9:30am – 11:30am Program

Group Lunch in Dining Room

1:30pm – 3:30pm Program

Nov. 14th, 2017, Tuesday –  Time TBD – Am Devotion

San Juan    9:30am – 11:30am Program

Group Lunch in Dining Room

Optional Land Excursions

Nov. 15th, 2017, Wednesday – Time TBD – Am Devotion

St Thomas    Optional Land Excursions

Nov. 16th, 2017, Thursday – Time TBD – Am Devotion

 At Sea   9:30am – 11:30am Program

Group Lunch in Dining Room

1:30pm – 3:30pm Program

Nov. 17th, 2017, Friday –       Time TBD – Am Devotion

Half Moon Cay Private Island       10:00 – 11:30am Impromptu Memory Cafés on the Island

Optional Land Excursions

Nov.18th, 2017, Saturday –      Depart Ship

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Make Your Reservations Now

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Contact Kathy Shoaf, RN, BSN, ATP

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Phone: 219-608-2002 

Website:   EliteCruisesAndVacationsTravel.com

E-mail:   Kathy.shoaf@cruiseplanners.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.

Additional Resources:

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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.

For Additional Resources on Dementia and Caregiving

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Join Dementia Chats Tuesday Morning

Join Dementia Chats Tuesday Morning

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Dementia Chats™ was created with the intention to educate people living with dementia; their care partners both family and friends as well as professionals and advocates.  Our Experts are those diagnosed with dementia. We have been doing this series since July of 2012.  Learn more about Dementia Chats.

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

Join Our Next Live Session  Oct 27th, 2015

All sessions are recorded and archived below.

11am EST, 10am CST, 9am MST, 8am PST and 4pm London time

On the 2nd & 4th Tuesdays each Month

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Important Announcement – Dementia Chats Webinars Changes Time

Important Announcement 

Dementia Chats Webinars Changes Time

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The 2nd and 4th Tuesday of Each Month NOW AT:

11am EST, 10am CST, 9am MST, 8am PST and 4pm London time.

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For More Resources and Information on Dementia and Caregiving

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

Purple Angel Documentary –

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Help Spread The Global Symbol For All Dementias

Learn about the documentary being filmed and how you can help.

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Watch Dementia Round Table Hosted by Gary Joseph Le Blanc

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You could make a difference for your loved one with Alzheimer’s.

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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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