My husband has dementia and now seems to have trouble eating. Any tips?

My dad had frontotemporal dementia and also had swallowing problems that would come and go. They first time, it appears shortly after diagnosis while he was trying to eat soup. Then it ended a few days later.

He would do something they call “pocketing” food in his mouth, just kind of rolling it around and leaving it there without swallowing. He absolutely hated ThickIt and all blended beverages (Ensure, smoothies, etc— we tried them all). His appetite just withered away as well, and I have to assume his sense of taste was severely altered as well. The last year or so of his life, all he would consume was a small bowl of vanilla ice cream and maybe 3 ounces of orange juice per day. He did go in home hospice 4 months before he died and he did pass from aspiration pneumonia. If anything, I was grateful because on top of dementia, he also had two different kinds of cancer plus kidney failure and other problems.

Good luck!

Talk to his doctor about a referral to a speech therapist. The speech therapist will evaluate the quality of his swallow and advise you on the best consistencies and tips for his specific swallowing issues. Until he gets to his speech evaluation: make sure he sits fully upright, have him tuck his chin towards his chest while swallowing, have him "double swallow" to make sure food or fluids are fully swallowed, and follow a swallow of food with a swallow of liquids. Check his cheeks to make sure he is not "pocketing food."

@CaringWifeAZ, @Samad1, and others
Unless you are an SLP (Speech Language Pathologist) who has done an evaluation, please do NOT advise using thickening agents or what to eat. Thickening is not prescribed for every swallowing issue. There are 3 levels of thickener available (nectar, honey, pudding) and if someone is not using the proper one, it may cause more issues.

As others have already suggested for ANY swallowing issues, it is imperative to be evaluated by an SLP with swallowing experience. All SLPs learn about swallowing but not all have had a lot of experience. I have found the better swallowing therapists are often affiliated with Rehab/SNFs because they are treating patients with Parkinson's, Strokes and other chronic diseases with swallowing issues.

The McNeil Dysphasgia Swallowing Therapy has been the most effective therapy for my husband. He has had swallowing issues with a feeding tube for10 years, but right now it is only used for meds and can eat a soft diet... but only as advised by his therapist. In fact, he has been advised not to use thickener but use thin liquids.

The most important thing to remember is try help him have good oral health because it is not necessarily the the aspiration itself that causes pneumonia, but the bacteria that goes down with whatever is aspirated.

@KLM700
Anyone can choke/aspirate at any time even if a swallowing evaluation did not reveal a specific area of weakness. You can aspirate on your saliva or even as a result of acid reflux. Aspiration is when something enters the trachea or further down to the lungs. Basically anytime you cough when swallowing, you probably aspirated. However elderly, especially with dementia, often do not have a strong enough cough to clear everything out which may lead to pneumonia.

Hi Starfish2295,

Swallowing problems are very stressful for the patient as well as the caregiver. They can cause major health problems, especially, aspiration pneumonia, which is dangerous and difficult to treat.



When Swallowing Is Compromised
Swallowing involves complex neuromuscular coordination among a number of organs to allow food and fluids to pass from the mouth into the esophagus, safely bypassing the windpipe. A slight impairment anywhere in the process may result in food or fluids going the wrong way and into the windpipe, causing severe coughing.
·      Watch for signs of swallowing issues early in the course of dementia progression. If necessary, consult a speech therapist sooner, rather than later, to evaluate any swallowing issues.
·      Prepare yourself for a choking emergency by learning the Heimlich maneuver. Check for classes at your local hospital or community center.

The Danger of Food Aspiration
Swallowing problems tend to develop in the late stage of dementia progression, and sometimes as early as the middle stage. As the patient loses the ability to chew their food completely or swallow it safely, the possibility of food or fluids entering their windpipe grows more likely.
The entry of food and fluids into the windpipe is usually accompanied by severe coughing. Even if the patient is able to cough strongly enough to expel the errant food from their windpipe, some of the food may still end up in their lungs (food aspiration), which may result in lung infection (aspiration pneumonia).
Managing swallowing problems is a primary concern for caregivers because severe coughing is highly stressful, to the point that the patient may refuse to eat and drink altogether.
Puree Meals
Eventually, the patient will be unable to chew and swallow regular foods. At that point, there will be no choice but to puree their meals.
·      Thoroughly cook beans, peas, and other solids to make chewing and swallowing easy and to postpone having to switch completely to pureed meals.
·      Use a home blender or food processor to puree food to a consistency similar to yogurt. Pureed food does not require any chewing, is easier to swallow, and is less likely to end up in the patient’s windpipe or lungs.

Swallowing problems impair the patient’s ability to drink fluids also. This time, the difficulty is due to the liquids being too thin, which makes it easy for the liquid to find its way into the patient’s windpipe and lungs.
·      Use food and beverage thickeners to thicken fluids, including drinking water. You can use commercial thickeners, or make your own using cornstarch.
·      When preparing liquids, add just enough thickener to get the liquid to the needed consistency (see below). Add a little mint or sugar to make it more palatable and reduce the taste of starch.
·      Initially, liquids need to be thickened just a little, similar to the consistency of syrup in canned fruits. But, over time, more thickening will become necessary. Eventually, the patient may need liquids at a consistency similar to that of honey or yogurt to be able to swallow safely.

When the Patient Cannot Drink From a Cup
At some point, drinking from a cup may become impractical, as the patient will have difficulty controlling the amount of liquid they take in with each sip. To prevent aspiration, you may use a syringe to serve liquids to the patient one sip at a time, typically 5CCs per sip. Alternatively, you may spoon-feed liquids to the patient.

Swallowing problems are often accompanied by excess saliva, mucus, or phlegm building up in the mouth or throat. To reduce chest congestion, ask your doctor to prescribe a mucolytic syrup.
A useful procedure to dislodge phlegm from lungs and air canal is lung physiotherapy. Follow the procedure below several times a day:
·      While t

My dad was put on thickening liquid and everything needed to be pureed. He had Dementia and Congestive Heart Failure. The choking was very dangerous. Please look into getting your husband tested. No solid foods.

Starfish, if he is having difficulty swallowing and is choking, he needs to be on thickened liquids and soft foods!

There are two great liquid thickeners, which are not pasty; Hormel Thick & Easy clear, and Nestle Resource Thicken Up. Both are available on Amazon. There are some other thickeners you can buy at the drug store, but they are essentially corn starch, and make liquid like an uncooked gravy - yuck!

Rule of thumb on soft foods, if you can't smash it with the back of a fork, it is not soft enough. Try puddings, applesauce, mashed banana, mashed potatoes, sweet potatos, and soft cooked carrots.
Hamburger or salisbury steak which you have cut up small, and gently smash with a fork. A little bit of gravy helps too. Other meats and vegetables are a difficult texture - I use a food processor to chop up meats or sandwiches to a minced texture. Most vegetables don't chop up well, they get stringy.

If you're having trouble getting enough protein and nutrients in his diet, try making protein shakes. You can make something like a smoothie, but for protein and vitamins, I buy Boost nutritional drinks, and I add Milk, juice, a little water, and I also add a clear thickener! You can also use instant pudding mix to thicken milk based drinks. Mix pudding in a blender, following the directions, and add an extra cup or two cups of liquid to thin to drinking consistency.

My husband can safely eat canned fruit filling, such as apple or cherry, and muffins are generally soft enough, but cut up in small bites, so he doesn't try to pick up and shove too much in his mouth. Your husband will probably require supervision or someone to spoon feed him, as he may not understand how to eat safely. My husband lives almost entirely on thickened protein drinks now, I mix up a large batch in the mornings, and pour into cups with a secure snap on lid, and use a bendy straw. He is able to feed himself independently this way.
When I got tired of washing a dozen plastic cups every day, I started buying ripple sleeve paper coffee disposable cups with a lid and a straw. I can re-fill at least once before tossing in the trash. Make life simple when you can. Taking care of someone with dementia is hard enough!

Discuss with his doctors and do not provide food or drink until evaluated.

Yes, a swallow study would be helpful. They will place a barium mixture in different types of food and liquid consistencies, and then look at how the food and liquid goes down.
A speech therapist who is experienced in feeding is a fantastic resource. The therapist can work with your loved one, give tips on how to prepare foods, and tips on how to set up the meal environment to maximize success. Also, there is a medication that my hubby takes called Hioscyamine that clears up extra secretions in the mouth and throat. I give it to hubby and hour before eating and it has so far decreased episodes of coughing on his own secretions during meals.
Eventually, folks with Alzheimers can no longer eat without aspiration.

they like finger foods

Starfish2295: He may require a swallow study.

When my husband was in the last stage of dementia, he stopped eating and before they could do swallow test, he went into a coma and hospice was called for those last few days. Hospice was wonderful. They will come and evaluate him if you want.

Starfish, your comment about choking screams for a need for a swallow study. He will be considered a risk for getting chronic aspiration pneumonia.
The speech therapist can then write up a plan on which foods to give. The therapists do the same for hospital patients.
If thickened liquids are to be given, you should stick with the plan

As people get older they can develop swallowing difficulties
sometimes it’s in their mi d- other times not
my father went thru a stage and tests showed he has a tear in his throat
so it would have been painful
after that - he would intermittently gagg on certain foods
chicken - for example
so a watch to see if certain foods trigger it
next - we found my dad had lost a little weight and his dentures no longer fit snug - the mouth can shrink
so his dentures started to rub on his gum causing pain ( nurse advised us denture gel ( glue) to keep dentures in place and that sorted that out
The food was taking longer to chew so we changed food to easy to chew food
sone we put in a mini blender to ease the chewing
the soft foods and soups helped
Then (and there’s more!)
it became a liquid think- not enough liquid in the body bringing on Alzheimer’s type symptoms and delirium
so we up’d water intake
frequent sips - no one will drink a glass full all of a sudden
after we hit the water issue corrected so did the other stuff
water is so crucial
we thought my dad was in cognitive decline
now water intake and soft meals and meal replacement drinks to help ( tgey even so compact ones that have little liquid so not so much a chore)
my father has his full mental faculties back
Eating with them also helped even if yours was just a cup of tea- the company
and we insisted dad hold his doll rather then rely on help eating and he started to eat more
it’s not an easy journey

Your primary care physician can get a swallow specialist to come to the house to perform a study.

Is this a wish not to eat or is this a matter of swallow deficit?
I would discuss with the doctor as you may require someone to give swallow deficit evaluation. Do not force food or fluid for sure until that is done.
If this is end stage swallow difficulties I would get a Hospice consult.
Good luck. Hope you'll update us with more information as you move along here.

Get his doctor to arrange a swallow study test right away, that's my advice.

As the disease progresses people with dementia often begin to have trouble swallowing (dysphagia).
https://www.agingcare.com/search?term=dysphagia

Hi starfish, this is hard to answer without more information. Your husbands dementia may have gotten to the point where he forgot how to eat, or he just doesn't have an appetite anymore. I would fill in with a protein drink, like insure, or boost.