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  • Writer's pictureJadene Sloan Ransdell

04 Could This Be Alzheimer's?

Jadene Sloan Ransdell

Originally published November 30, 2014


This post has been difficult to start. Nearly six weeks ago I met with Matt's team and Tom Buckley, who has become my Down syndrome and Alzheimer's dementia mentor. I met Tom shortly after I moved to Clearwater and was serving on the board of directors of UPARC, a local program for people with developmental disabilities. Tom was selected as the executive director during my time on the board. He has dedicated his life to people with disabilities and currently works at The Lucanus Center in Hollywood, Florida and is a member of the National Task Group on Intellectual Disabilities and Dementia Practices. (http://the-ntg.org)


Tom has helped Joe and me begin to understand that Matt is not displaying "behaviors" that are aggravating and frustrating but exhibiting symptoms of Alzheimer's dementia. Each time we talk, I see more clearly why the neurologist diagnosed early dementia nearly two years ago. So many of the symptoms are subtle; before we had the information Tom has provided we often thought that Matt was just being stubborn or extremely slow. Now that I am learning more about Down syndrome and Alzheimer's, and am recognizing Matt's symptoms, it can be overwhelming to think about for very long. It took me over a month to look at my notes because the team had discussed things we are seeing and that are clearly characteristics of Alzheimer's in people with Down syndrome.


When the team met, one of the first things Tom inquired about was the changes we have seen with Matt. Tera, Matt's Behavior Analyst was actually the first to notice the subtle changes. She has worked with several individuals who have Down syndrome and Alzheimer's dementia. She stated that she has been noticing changes over the past three years. He seemed to be more agitated, especially in the Fall of each year.


Some of Tera's first observations occurred during his time at the VA Center. Matt has worked there for almost 4 years and has always enjoyed the time with "his soldiers." His work day usually lasts from about 9:15 a.m. until 3:00 p.m. His responsibilities include writing his mark on thank you cards that he then passes out to the veterans. Sometimes, the social worker will ask that he visit specific patients. He loves signing "hello" to the patients and those he meets in the halls. He has certain patients that he visits regularly, and on occasion, has not been able to when it was the designated time. That small disruption to his routine has caused extreme agitation, complete with vocal noises and huffing and puffing. Usually, there are not a lot of expectations placed on Matt at the VA Center, so, fortunately, it does not happen often.


More recently, Tera has observed Matt signing "movie" while he eats his lunch. Matt's signs aren't always literal and this communication is more that he is ready to end his day, go home and have some quiet time. He is often ready to leave as early as noon or 12:30 p.m. She has also seen an increase in Obsessive Compulsive behaviors. She watches as he prepares to knock on a patient's door; he puts a stick or some other object in his hand then goes to knock. He will repeat this several times before he actually knocks on the door. When he gets anxious, he displays more tic behaviors...turning his head, rocking on one foot, licking his fingers.


He has also shown less interest in some of his favorite activities, one of them being swimming. (His current home was chosen because Matt has always loved having access to a pool and he spent much of his free time in the water, happily splashing anyone who mistakenly got in the "zone.") This past summer, he had to be coaxed to go outside and would stay in the pool only for short periods of time. Part of his evening routine for several years has been to walk Mia, the family dog. More recently, he has chosen to not go on walks and has even stopped running with Mia in the park.


Sandie, his in-home support staff has told us that he now needs more prompts to do tasks he previously completed with relevant ease. In the past, on laundry day, he would gather his dirty clothes, take them to the laundry room and put them in the washing machine with one prompt. More frequently, he will make it to the washer and just stand there. He has had similar experiences brushing his teeth and getting dressed. He has stopped in the middle of the task and has just stood with a blank stare on his face, as if he had no idea what he was supposed to be doing.


Tom explained to us, that what Matt used to complete relatively quickly now takes longer because it takes longer for him to process. While we may be waiting for a minute or more, to Matt it seems to be a nano-second. Tom uses an analogy I have shared with several people since the first time I heard it explained this way.


The protein that is created in the 21st chromosome is evident in the plaque and tangles in the synapses of the brain. It is the plaque that slows the processing down. Tom talks of memories being books in a library. When we are young, we can easily maneuver throughout the library to retrieve the "book" that has a particular memory. As Alzheimer's progresses, it is more difficult to move through the desks and chairs and shelves to get to the particular book we are seeking. And sometimes we forget we were looking for the book. A few minutes later, after our brain has reset, we may try to retrieve the book again. (For those of us who are caregivers, this is where we may see our loved one repeating a question, or claiming they have eaten breakfast when they haven't.)


Alzheimer's is a devastating disease that will rob Matt of his memories and us of the love and companionship we once knew. When I think of this, I get very sad. So I must focus on what we can do to help Matt have the very best life for the rest of his life. Tom, the National Task Group and the folks at The Lucanus Center have learned that by creating a Dementia Capable Environment, the effects can be slowed. Here are some of the things Tom has told us we can do to help Matt now.

  • Recognize that we are seeing symptoms of Alzheimer's and not behaviors that need to be changed.

  • Keep tasks as simple as possible so that Matt can do as much as possible on his own. If he loses purpose in his day, he won't have a reason or desire to get up each morning.

  • Structure the environment so it is not complex. Leave only a couple of items of clothing in his closet for him to choose.

  • Never lower expectation for Matt. Ask questions in ways that he can answer them. Retrieving words and forming them into speech or signs is a complex task so "Yes" or "No" questions may be all we can get.

  • Watch what is said in front of Matt... or within his hearing. Even though he may not have the capability to "speak" to us as he has in the past, he is aware of what is being said.

One of the most important things I have learned, thus far, is that Matt needs to be able to age in place. He needs Sandie and Kandie. They are the people he is used to spending his day with. He needs his "job" at the VA Center because it is important to him and gives him a sense of worth. He needs his team to advocate for him; Michelle has been his friend for over 15 years and knows a lot about what Joe and I want for him, and Tera has been a caring and innovative member of the team, as well. Matt also needs his family to be close to him. We have noticed that he is having memories from when he was a little boy and Joe and I help the rest of the team recognize why he is reacting in a very different way than usual. And he has recently seemed to really need time to snuggle with me and to have me sing his favorite childhood lullabies.


Over the next few months Matt will have the opportunity to work more directly with members of the National Task Group as he becomes the first person with Down syndrome and Alzheimer's to work with the memory centers on the west coast of Florida. There is so much to learn and so much to do; with the support of many people we are working hard to make sure Matt ages with dignity. He deserves that and decidedly more.


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