Legendary Lady Vols Coach Pat Summit passed away this week. As most of the world knows, Pat had early onset dementia, Alzheimer’s type. I don’t know the coach personally. Having moved to TN in 2001, I of course knew who she was. My only claim to her was meeting her nephew at a bar in March 2001 and dating him a few times, until I finally told my mom about it and she helped me rationalize how crazy the situation was. But, that’s a whole other conversation. Anyway, several people have asked me in the last couple days, “How does dementia actually kill someone?” They figure dementia affects your memory but most people don’t die from it.

First of all, there are several types of dementia. The most common, accounting for 60-80% of all cases, is Alzheimer’s. Alzheimer’s disease is most frequently equated with memory loss and depression. And, caused by plaque build up in the brain, twisted strands of the protein tau, and nerve cell damage in the brain. Vascular Dementia accounts for about 10% of cases, and is most often triggered by a stroke. Impaired judgement, inability to plan and make decisions are initial signs, and as the disease progresses, often Alzheimer’s type dementia sets in. Grandmother has Lewy Body Dementia. Similar to Alzheimer’s in the memory loss symptoms, but also causes sleep disturbances, hallucinations, and balance problems. Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein. When they develop in a part of the brain called the cortex, dementia can result. Parkinson’s Disease, Huntington’s Disease, Frontotemporal dementia, Cruetzfeldt-Jakob disease, Normal pressure hydrocephalus, and Wernicke-Korsakoff Syndrom are other recognized types of dementia. Many times, patients will have a combination of types of dementia, and this is referred to as mixed dementia.

Back to our original question, how does dementia kill you? The most basic answer is dementia is a disease affecting brain function. And, our brain controls all other functions of our body. So, when the brain starts shutting down, the body starts shutting down. Most dementia related deaths are either malnutrition or suffocation. The body doesn’t even know it is hungry, so you forget to eat leading to starvation. One of the most basic functions dementia patients lose, is the ability to swallow. The brain doesn’t tell that function to operate, so patients either choke and die, or the throat becomes blocked in their sleep and they suffocate. Because many dementia patients struggle with sleep deprivation, their immune system in general is weakened putting them at greater risk of developing other diseases and disorders such as diabetes, cancer, pneumonia, or even the common cold.

If you know my grandmother, you know she walks with a “drunken gait”. That is the dementia. It’s almost like a severe case of inner ear where her balance is just off. Sometimes, she will be standing in the middle of a room and not move. That is simply because she can’t. Not because she doesn’t have the strength to move, it is simply that her legs aren’t getting the message from her brain to walk. This makes patients extremely frustrated. They know they need to move, but just can’t make it happen. Grandmother also coughs and chokes alot. Again, this is caused by the dementia. Her swallow control is pretty rapidly declining. Sometimes she chokes on food, and sometimes it is just air. Her windpipe gets “clogged” and how most of us let out a quick cough or swallow to clear it, she doesn’t know how to automatically do that anymore.

As I have said many times, I absolutely hate this disease. It takes your dignity and self respect. It traps you in a terrible world. For several months grandmother has been wanting to buy new shoes. I got her a new pair of brown and black shoes for Christmas. But, she doesn’t remember having them, although she puts both on several times a day. Today, I finally broke down and took her to the shoe store, because I just couldn’t listen to it one more time. We get in the shoe store, and she doesn’t know where we are. I explain she wanted new shoes, so she walks around looking. A few minutes later, “What am I looking for here?” Shoes. We’re looking to buy new shoes. She picked out a pair, and of course they wouldn’t fit because of her feet problems. I directed her back to the specialty shoes that would work, and she cusses me and the sales lady about not paying $150 for the ugliest shoes she’s ever seen in her life. As soon as we get home, what does she say. “The next time you have a few minutes, I want you to take me to find some new shoes…..”

I hate that Pat Summit was taken by this awful disease. But, I hope with her death and Robin Williams wife announcing he had Lewy Body Dementia after his suicide, that more awareness is brought and we can find a way to better serve the vast population among us affected by this terrible disease.