Dennis Marek: Enhancing care through music and memory

March 10, 2018

One of the advantages of spending a few weeks in south Florida is the chance to see other parts of our country. It is also the chance to experience cultural things not necessarily around at home. While spending a week in Ft. Myers, my wife convinced me to accompany her to a presentation at Florida Gulf State University. The program was on Alzheimer’s disease. As I have previously written, this is going to be the downfall of our health and medical system if it goes unchecked.

The first speaker was Dr. Jessica Langbaum, a neurologist devoting her life to dementia, its causes and its elimination or control. Needless to say, her presentation was professional and incisive but a bit depressing when the facts of where we are today was outlined. We have no silver bullet pill. And as I have written previously, we are learning diet and exercise are about the only choices to slow down this dreaded condition.

Dr. Langbaum’s message was we have to choose prevention practices rather than waiting for the cure. These include our attention to details on what we eat and how we hope to minimize Alzheimer’s disease and dementia.

The second speaker was Dr. Richard Isaacson. Here was an enlightening speaker on what we know and don’t know about this disastrous onset. Some very amazing facts came out. First, starting prevention upon visible onset is about 20 years too late. Scientists now agree the onset of the amyloid in the brain could be occurring as many as 20 years before the cognitive impairment becomes apparent.

Dr. Isaacson also talked about the genes that come from our parents, ApoE. There are three variants — ApoE2, ApoE3, and ApoE4. We all have two, one from each parent. So, there are six combinations. A pair of 2s or 3s is the best. Chances for Alzheimer’s disease are the lowest although not impossible. Two 4s is really scary. But even scarier is two 4s can lead to a very early onset.

After his presentation and at a break, I asked Dr. Isaacson if he had been tested for the gene, as there are many people who do not want to know. My sisters have chosen not to know even though our mother did have confirmed Alzheimer’s at age 80. Dr. Isaacson surprised me with his answer. He had been tested in 2004. But he had chosen not to find out his two genes until last year. He was not willing to tell me his combination, but when I asked if he shared the results with his siblings, he responded he had not. I then have two dilemmas. Do I test and know, and if I do, should I share with my two sisters? One thing I did decide is if I am pretty good at 75, I certainly do not have any earlier onset of dementia.

After the break, there was one more speaker, Dan Cohen, who spoke of caring for people who suffer from not only dementia but all forms of aging. Here was the most inspiring part of the morning. Cohen is part of the Alive Inside Foundation, which is dedicated to healing the loneliness and disconnection of our elderly who are confined to a nursing home or even at their own homes with assisted care.

Cohen spoke of the disassociation families have when their parent or spouse is placed in a nursing home facility. The care is now there, and they stop coming or seldom come. The family members seem to divorce themselves from the parent or spouse. The pain of visits and the loss of the person they once knew is often just too great. But the patient still suffers from loneliness. There are often bouts of depression and even outbursts of temper. But Cohen and his group have an answer — music. Music through headsets playing the favorite songs of the patient. There is a video that is worth more words than I ever can write. It shows a patient with his head down, fists clenched and totally unresponsive to questions of the family member.

Then a headset is placed on the patient with an iPod, and his favorite music flows. The head comes up, the eyes widen, and soon the patient is singing with the music he is hearing. That is followed by a responsive conversation, something that a few moments before would have seemed impossible. Other patients with their own headsets are seen dancing, moving with the music, or just keeping time with the music.

It seems that the sense of hearing is the last sense to leave us. The deep memory of favorite music has lasted in these otherwise almost comatose patients. The video must be watched. It is on YouTube, called “Alive Inside,” and is heartwarming.

There has been some resistance with care facilities, who merely want to broadcast generic tunes over their intercoms, but there are now grants that have provided every resident in some facilities with a headset and an iPod. The association will program each iPod with that person’s favorite tunes of yesterday.

But therein lies a problem. What are your mother’s favorite tunes? Merely playing Frank Sinatra or Elvis Presley for everyone through a speaker will not comfort those who did not have these singers or players on their favorite list. So, before these terrible moments happen to you, your parent, your spouse or friend, sit down and get his or her playlist.

Cohen took a short break and asked us to write down five of our favorite singers. After we did, we exchanged the list but folded it so the names were not shown. He then asked us to name those five singers from our partner or friend. My wife got four of mine, but I got only one of hers. I guess we listened to my music more than hers when we were together. I know the five now.

The day was sad and yet hopeful. The prognosis for the disease was sad, the hope for an easy cure, sadder, but the prevention information was important. The added joy in watching almost comatose people come alive with their own headsets, iPods and music was incredible. Watch the videos, and then encourage any rest home or nursing home to consider music though memory as a comforting pleasure for those with few pleasures.