Most people with advanced dementia have difficulties eating and drinking, this too is for many reasons. Some patients don't recognise the food in front of them, especially if it is minced or pureed as is often the case and this is the case with mom. Now that she is more alert I am feeding her the minced food again as well as fortified liquid. Mom insists that everything put in front of her is fish or if the vegetable is green, then it's cooked spinach and mom hates both, needless to say, she won't eat them. Some patients will eat the condiments on the table or sugar packs or even take a bite of their napkin and again this is because the dementia has taken away that part of the brain that identifies what is food and what isn't.
Depression can also play a role in eating. Although a person may not be able to express it, they might be depressed and often a depressed person does not have an appetite. In many, the plaque that destroys the tissue and areas of the brain has taken away the hunger response, so they simply don't feel hungry. It's very hard to feed a person who isn't hungry at designated meal times. This is why, in most facilities like mom's there are small kitchen areas where sandwiches, cookies, fruit, yogurt and beverages are always available.
There can also be the opposite changes in dementia patients. Some of them will crave sweets and only eat sweet foods or they will eat only certain foods. My mom seems to only want to eat soup, mashed potatoes and dessert, but she always liked dessert. Other patients literally forget that they already have a mouthful of food but with continue to take bite after bite after bite without swallowing so of course this puts them at risk for choking. Other patients completely forget to swallow and they also pose a risk for choking. With mom, she will chew and chew and chew and chew and not swallow unless she is encouraged to take a drink of water. When she does try to swallow, instead of pushing the bolus of food to the back of her mouth she pushes it to the front of her mouth and out all over her chin. We have a system. I give her a bite of food, watch her chew about 10 to 12 times and then I either encourage her to take a drink (she can lift the cups to her mouth now) or if she is too shaky, I give her a drink and the food is properly swallowed.
Patients like mom also have a tendency of pocketing food. Instead of swallowing they move the food towards their cheeks and it sits there, not swallowed like a chipmunk. Mom occasionally does this so I always check her mouth after every meal. This isn't an intention behaviour, it's another symptom. Pocketing not only can cause choking but it can also cause aspiration pneumonia as over time little particles of food will be inhaled. Pneumonia is one of the major causes of death in dementia patients, so the pocketing of food has to always be checked.
Of course any dementia patient who has Parkinson like symptoms has difficulty eating. They simply can't control the shaking or the muscles in their hands. Lately, I have been trying to encourage mom to hold a spoon and get a bite of food and then eat it. Sometimes she tries and can do it but then a minute later instead of putting the food in her mouth she will put it into her cup of water. Other times, she is just to shaky to hold a utensil.
As dementia progresses the muscles become rigid. This applies to all muscles, including those in the jaw and the throat. A few months ago we were starting to see this in mom but the muscles have gotten some strength back again and her swallowing is much better. Her swallowing is so much better now, we no longer need to use the straws to drink liquids. When the muscles get too rigid, a dementia patient simply can't chew or swallow. If they can't chew or swallow then they can't eat solid food. If they can't swallow at all, they can't take in any food and unfortunately they can't take in liquid either. People can last 3 minutes without oxygen, 3 weeks without any food but only 3 days without any water. I watched mom's swallowing for months and will keep on watching it because when any person can no longer take water and without medical intervention, well the end is near. Mom's personal directive is no tube feeding and this includes water.
The other reason why I feed mom is because it's time together. As we wait for the food we will chat and often I will eat a meal while I feed mom because it gives both of us a sense of togetherness and family time. We all grew up with our parents and we all spent time around a kitchen table or in a dining room, eating, talking, arguing or laughing and everyday I do that with mom. It doesn't matter that we are eating in a large dining room with other people and not at home around the table or that I am feeding her. What does matter is that it's meal time, together but I do miss the sound of my mother's voice, yelling through out the house or the neighbourhood "Come and get it!!!!'.
Thank you
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