Author: Laura Elliot

By:  Gail Elliot, Founder, DementiAbility Enterprises Inc.

In the past few years, colouring has become a favourite pastime for people of all ages.  In dementia care, this trend has also been catching on. It is wonderful to see that people with all different levels of cognitive and/or physical ability are now spending their leisure time showcasing their inner creativity. Having said that, there is still much to be done when it comes to introducing people with dementia to colouring.  Regardless of whether a person in your care enjoyed colouring in the past, he/she may enjoy colouring now.  However, you might benefit from thinking about using DementiAbility’s WOW Model (including needs, interests, skills and abilities) when considering what might work best.

When individuals are challenged by either cognitive and/or physical challenges, traditional colouring pages may not set a person up for success.  DementiAbility teaches care partners to think about the needs, interests, skills and abilities of each person when making decisions about “What to do” (the last W in the WOW Model).  When thinking about what types of pages might be best, it is important to consider interests from the past, including what types of pictures would be of interest now (such as cars versus shoes or flowers). It is also important to think about the individual’s current abilities, and skills from the past.  When thinking about abilities, it is important to determine how simple or complex a colouring page should be and whether the person would be better suited to markers versus paints or colouring pencils.  Those with mild cognitive impairment are often able to tackle more intricate designs and shapes, while those with more advanced cognitive and/or physical impairment may need something quite simple. Moreover, one needs to consider whether perceptual deficits, visual challenges and/or fine more skills might impact the ability to stay inside the lines of the item that is being coloured.  

With each of these considerations in mind, DementiAbility has created colouring books that that are aimed at setting individuals up for success.  When we first introduced our colouring books, we created five colouring book titles with a black background.  Why?  I had learned that a black background can set people up for success. When I introduced my mom to colouring, in the later stage of her dementia, I gave her a canvas to colour (with bright markers) that had an image with a black background (unlike the traditional colouring pages that has a white background/on a white page).  Her first masterpiece was beautiful.  Since that had been so successful, I found another canvas for her and I left it with her it to work on when she had time on her own.  When I returned, I found she had started it but didn’t finish it.  I asked her why. She said she didn’t like it.  Upon closer examination, I could see she had “gone over the lines” and tried to rub out the “mistakes”.  I then looked closer at the other piece of art. She had gone over the lines on that one too, but with a black background it was not obvious to the eye.  Voila! A new way of thinking about colouring in dementia care – and other areas of care where people benefit from being “set up for success”.

Mike Browne, our artist, has now created all of our books into a series called, “Pictures that Pop”.  The first set of colouring books did not have the black background on every page, but as we replace our existing stock, all will be on a black background.  At the moment, DementiAbility has 11 colouring books (visit www.dementiability.com to place an order).  The easiest book, for people with few cognitive abilities, is “Shapes”.  The other books have a variety of images that are set up for people with different abilities.  The books with a black background include shoes, sports equipment, sports, shoes, dogs and flowers.  Amazon also has some of these titles, making the books available internationally using your local/county’s Amazon website (search for DementiAbility colouring books “Pictures that Pop”).  If you live outside of Canada, Amazon is a great choice, because you don’t have to pay excessive shipping charges or duty.  

As we say in the book, “Get out your markers, coloured pencils, crayons and paints – and have fun!”

By: Gail Elliot, Gerontologist & Dementia Specialist 

Founder, DementiAbility Enterprises Inc. 

www.dementiability.com 

Question: What is one of the best ways to set a person with dementia up for success when asking about specific facts related to his/her life story?   

Answer:  Provide written facts, along with hard copies of photos – and put the details into a book for all to access and use.  

Think about it for a minute. What questions do many people ask older adults on a regular basis?  Do you have children? Do you have grandchildren?  Where did you live? Did you work? Where did you work? What did you do? When we ask people with dementia these questions, we are often, but not always, met with a blank stare, or they look at us with frustration and disappointment when they cannot remember the answer. For those with the blank stare or obvious frustration, the memories may be locked away at the moment.  Unlock the memory bank, and set each person up for success, using the facts and photos provided in a “life story book” – and then seek opinions related to the discussions that follow.   

A book of facts and photos – a book that captures the details about a person’s life, to remind them of the people, places, facts and events from their past – not only helps the person with dementia, it helps those who provide support and care.  A “Life Story” book – a memory book – can help to stimulate memories, while also providing rich opportunities to open up the lines of communication between the person with dementia and those who provide support and care. And, in fact, when using the DementiAbility WOW Model, these details may help care partners to better understand the needs of the individual. There is nothing more rewarding for loved ones than to see a person’s face light up when they share the details on the pages presented in front of them.  One photo, along with supporting facts, may generate cascades of other memories from the past. Families are often surprised with the clarity of the facts that are shared – after the initial facts have been seen and read.  

If you would like to learn how to put a memory book together – a book that captures the rich details of a person’s past – consider registering for the DementiAbility one-hour free workshop, delivered via Zoom, scheduled for March 2, 2021 at 10:00 am (Eastern Standard Time – Toronto time).  DementiAbility is offering a free downloadable version of Gail and Laura Elliot’s memory book, called “Let’s Talk About Me: My life in facts and photos”, for those who sign up for the workshop.  Once you register, you will be sent the link 48 hours before the workshop. Directions for downloading the memory book can be found on the registration page. This is a great time to put a memory book together – and a time when people living with dementia need it the most.  Join us on March 2^nd to learn more. Register here!

(Also called Lewy Body Disease and Dementia with Lewy Bodies)

By: Gail Elliot, Gerontologist & Dementia Specialist, DementiAbility Enterprises Inc.

www.dementiability.com

While it took time, the truth was finally revealed: Robin Williams died of Lewy Body Dementia. There are a number of different types of dementia, each with its own set of distinguishing characteristics, including, but not limited to:  Alzheimer’s Disease (AD), Vascular Dementia, Lewy Body Dementia, Frontotemporal Dementia and Mixed dementia. Dementia with Lewy Bodies is far less common than Alzheimer’s Disease (which, according to the World Health Organization, AD includes about 60-70% of dementia cases).  

According to the Alzheimer Society of Canada, “Dementia with Lewy bodies occurs because of abnormal deposits of protein called alpha-synuclein that develop inside the brain’s nerve cells. The deposits are called “Lewy bodies” after the scientist who first described them, Dr. Freidrich Heinrich Lewy” (Alzheimer.ca).

At the end of the day, it isn’t the incidence or prevalence of any form dementia that should concern us the most: it is the impact that dementia, all forms of dementia, has on individuals and their care partners.  While each form of dementia holds its own challenges, dementia with Lewy bodies has a number of challenges that are often difficult to address and overcome.  The story of the beloved actor and comedian Robin Williamshelps to shed light on these struggles in the movie called Robin’s Wish.

I highly recommend that you watch Robin’s Wish, a poignant documentary about Robin Williams and his struggles with Lewy Body dementia. The story is told from the perspective of his wife, Susan Schneider Williams, his doctors and others who knew Robin Williams during those difficult final two years of his life.  As you watch this movie, pay attention to the “reserve capacity” (spared abilities) that Robin Williams showcased as the disease took over his brain, and how his cognitive reserves pushed him to finish the contracts he had committed to, and how his reserves allowed him to continue to ride his bike and stay relatively connected to others – in spite of the damage that was taking place in his brain.  You will learn about how he battled his inner turmoils through that period of time, when his brain was eroding within him.  In spite of all of this, as rehearsals and filming carried on, Robin Williams continued to show up for work and read and remember his lines, although struggling in a way that was uncharacteristic of this famous, seasoned actor. As the disease progressed, the Lewy bodies increasingly infiltrated his brain and he increasingly questioned his performance at rehearsals and during filming. You will see how the inner turmoil was ruthless. Susan shares how difficult it was when his anxieties and delusions heightened, especially at night. Near the end of the documentary, you will learn about Robin’s wish.  Be sure to keep a box of tissues on hand as you watch this movie and learn about Robin’s journey and Susan’s deep devotion to her beloved husband.

After seeing this documentary, I can clearly state: my wish is that Robin’s Wish will shed light on Lewy Body dementia. We need people to understand what Lewy Body Dementia is – and what it can do to a person’s brain and behaviour.  Join me in spreading the word about this documentary and let’s shed light on this dreaded disease with the goal of getting people to seek a proper diagnosis.

In closing, I want to send a sincere thank you and shout out to the producers, the scientists and most of all Susan Schneider Williams for her courage and commitment to sharing this story and for shedding light on the final days of her husband’s difficult journey.  With deep appreciation, I say, “Thank you! Thank you! Thank you!”

If you would like to know more about the prevalence of Lewy Body dementia, read on . . .

The prevalence of Lewy Body Dementia seems to be relatively unknown, as the percentages cited by different countries, and on different websites, vary widely (ranging from about 4% – 25% of the dementia cases).  For example:

• According to the Alzheimer Society of Canada, Dementia with Lewy bodies accounts for about 5 – 15% of all cases of dementia (https://www.alzheimersresearchuk.org/dementia-information/types-of-dementia/dementia-with-lewy-bodies/ )
• In the USA, on the Alzheimer’s Association website (https://www.alz.org/alzheimers-dementia/what-is-dementia ), you will find that it is estimated that about 5 – 10% of those with dementia have been diagnosed with Lewy Body Dementia.
• Alzheimer’s Research UK states that dementia with Lewy Body makes up around 10 – 15% of the cases of dementia ( https://www.alzheimersresearchuk.org/dementia-information/types-of-dementia/dementia-with-lewy-bodies/ )
• Queensland Brain Institute, University of Queensland, Australia, estimates that Dementia with Lewy bodies makes up about 4% of the those with dementia (https://qbi.uq.edu.au/brain/dementia/types-dementia ).
• And Dementia Connections suggest that the range of Lewy Body dementia cases ranges between 10% and 25% of all cases of dementia (https://www.dementiaconnections.ca/blog/2017/9/21/dementia-defined ).