At the time of this writing, Tony Bennett gave a concert with Lady Gaga. In spite of severe memory loss, Mr. Bennett gave a flawless performance. This is an example of procedural memory. In Mr. Bennett’s case, he had sung his songs thousands of times over decades. His “library of songs” is an over-learned skill. For most of us, skills like reading are over-learned. We learn to read in pre-school or kindergarten and then read every day for the rest of our lives.
Every time we do a specific activity, we reinforce the neural network that is responsible for the activity. Think of it this way. It is morning and I walk my dog across my lawn. I turn around, and I see my footprints and Amira’s dog prints in the wet grass. When we come back from our walk, our footprints are gone. The grass has sprung back into its original shape. This is what happens in the brain when we do something once and never do it again. Or only do it once a year or once every couple of years. The memory “path” is very faint or completely disappears. On the other hand, if we do something daily, or multiple times a day, we create literal “roads” in the brain that are made of layers of neurons. These roads are similar to the path in my yard where no grass grows. The previous owner, who lived here for 25 years, always had dogs. They ran around the yard along the fence. This constant dog traffic has created a dirt path. Now my dog runs around the same yard, reinforcing that dirt path. If we move tomorrow and the new owner does not have dogs, the dirt path may become grown over with grass and weeds. It will probably take a few years for the grass and other plants to completely erase the dirt path.
In the case of Tony Bennett, his wife encouraged him to sing daily, listen to his music, and look at photo albums to keep his memory roads clear and working. Her efforts helped him to maintain his access to all of his memories that helped him to perform at his concert.
Well-meaning family and formal caregivers sometimes start to “overdo” for persons living with dementia. “I don’t want her to get hurt” or “I don’t want him to feel embarrassed” or “It is just so much easier if I do (fill in the blank).” What people do not realize is that once a person with dementia forgets how to do an activity or task, he or she is rarely able to relearn it. There just aren’t enough nerve cells and brain chemicals to knit together a new memory.
I (stupidly) remarried in 2014 and became the carer for my (now ex) husband’s mother who had dementia. When I first met my Mary, she was sitting in her bathrobe in a recliner. She had just lost her husband of 60-plus years. She was a frail, sad, birdlike woman. She needed a walker and could get to and from the bathroom. Her son was extremely concerned that she would fall and injure herself, so he constantly told her to sit down. Like every 10 minutes. If he found her standing or walking around the house, he would fuss: “Go sit down before you hurt yourself.” She was miserable.
When I became her caregiver, I encouraged her to move around our house. I wanted to find things that Mary would enjoy doing. At the time, my husband traveled extensively for his work and was gone for days at a time. Without his constant fussing, Mary was essentially free! One of the first things I started was weekly outings, starting with a shopping trip for an updated wardrobe. Because Mary had lost so much weight, everything she owned was several sizes too big. Mary was thrilled; she began getting dressed every morning and sporting her new outfits.
I discovered that Mary had been an avid and talented gardener. She would talk about her flowers and plants for hours. Inspiration struck. I put several plastic tubs on my back deck and we planted herbs and flowers in them. We went out every evening after dinner and watered or weeded the tubs. Then we would sit out on the deck and read together. Mary started washing dishes and helping with light housework. She gained weight, became stronger, and seemed much happier. She still had dementia, but having her on a schedule and keeping her active helped her to stay fairly independent with her own care. Her decline was slowed down.
Every time her son returned from his business trips, he would fuss at both of us because of Mary’s mobility. “She is going to fall and break something.” What he failed to realize was that his “care” was not only making her more unhappy and depressed, he was increasing her risk of falling because he was keeping her from walking around regularly. He was stealing away her ability to do things. When a person with dementia stops doing a task, they risk forgetting how to do that activity. As the disease moves on, they are unable to remake those memories. When I encouraged Mary to make her salmon patties or to help with the flowers, I was keeping her task memories alive. I was pushing away the day where she would become dependent on others for her care. And speaking of salmon patties, Mary made them every Friday for as long as she lived with us. Sadly, she died from congestive heart failure eight months after I became her caregiver. I’m grateful for the experience because it humbled me and enhanced my ability to help family caregivers!
Meaningful Interactions Provide Outlets
People with dementia are vibrant, wonderful people…who happen to have a little, or maybe a lot, of forgetfulness. Here’s the thing…the drive, the search for meaning, the desire for affection, the desire to be HEARD…remain. What changes is that the OUTLETS for the expression of these important desires and drives get cut off by the dementia…regardless of the type. The loss of these outlets create anger, frustration, irritability and other behaviors. Sensitive and meaningful interactions with others can reduce the isolation felt by people with dementia.
My son, Mark, is an avid fisherman. When he lived at home, he kept his bait (those big red night crawlers) in the garage fridge, which also happens to be where I keep overflow food and defrosting items.
WARNING: THIS NEXT PART IS REALLY GROSS!!
One Saturday, I opened the garage fridge to retrieve some ground meat I had put in to defrost. There were FRIGGING GINORMOUS NIGHT CRAWLERS EVERYWHERE!! I lost it. Stephen King couldn’t make this stuff up. Apparently, they either were hungry or were seeking an escape route or both. They had squeezed out of the foam container by pushing the plastic lid up (or maybe Mark hadn’t closed it tightly enough). Another fun fact: these critters can scrunch themselves up so that they appear to be an inch long, but can stretch out to NEARLY A FOOT!! I found this out because all had stretched out to their maximum capacity. Some were stretched out within the folds of the white accordion gasket that lines the edge of the refrigerator door; others had tunneled through the plastic wrap of the meat and were feasting away. A couple of outliers were channeling their inner Spiderman by hanging on the sides of the fridge. I kid you not, I think there were 20 of these dang things so I’m not sure if they had had a worm orgy, invited friends, or simply engaged in cellular division.
At the time, the fridge was relatively new and in great working order (other than needing to be dewormed), so tossing it out was not an option. After unleashing my volcanic temper and spewing language that could melt titanium, I handed Mark a bucket, rags, and some bleach and put him in charge of Operation Worm Cleanup. I felt bad after the initial eruption of Mount Rita, so I helped. Mother-son bonding time, yay. And then inspiration struck.
These worms are a great metaphor for dementia-related behaviors!!!
The night crawlers did not have a meeting and decide to freak out the red-headed human. They were being worms. Worms move around and eat stuff. I created the situation by allowing the hungry worms to be in the fridge in the first place and then placing food in their vicinity.
The person with dementia does not do things to tick off the caregiver. The individual’s personality and drive and need for a purpose remain. Dementia keeps those pieces boxed inside the person. The person with dementia wants an outlet for that drive and energy but is no longer able to channel these desires into appropriate (for us) venues. If I do not provide an outlet for that energy, drive, or purpose, then I create a problematic situation. If the environment is not a good fit for the person’s personality, you will see behaviors that may not make sense, may be dangerous or may increase the effort of caregiving.
The trick is to provide outlets by providing safe activities that are aligned with the person’s pre-dementia personality, occupation, and favorite hobbies. That activity may have to be modified a bit to make it safe. For example, I have a neighbor with dementia who was an active gardener. He still loves to mow the lawn. Multiple times a day. No matter how hot outside, he is mowing the lawn. He will not stop until the mower runs out of gas. His wife was terrified of dehydration, heat stroke, or an injury from the mower. When his wife tried to bar him from mowing the lawn, he became extremely angry. So his wife gave up and let him mow the lawn to his heart’s content.
Knowing what I do for a living, my neighbor’s wife asked me for some ideas. I recommended a cordless electric lawn mower with the blades removed. I own two (that’s another story for another day). I know from personal experience that you are lucky if the battery lasts an hour, even less on hot days. Their son took my advice and bought dad a new cordless electric mower for Father’s Day. Son also removed the blades as an added precaution. Now, my neighbor mows for about an hour and the mower stops. He takes it into the garage, where his wife pulls out the battery and puts it on the charger. It takes a couple of hours for the battery to charge, creating a mandatory break. Win-win, everyone is happy.
And if you have nightcrawlers in your fridge, feed them cornmeal. If we had done that, they probably would have stayed in their container.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.