96yr old dad with Lewey Body Dementia doesn't want to eat! What to do?

Just relax and let it be. Offer but don't be invested in him cooperating. It's OK.

My mom has Lewy Body. If she chooses to stop eating I will not interfere. At 90 she has expressed her desire to leave this earth. I would not want to “save” her because of my need for her to stay here. Her quality of life is so poor {her words not mine}. I would encourage fluids…milk, water, juice even milkshakes. PS: I was a clinical nutrition dementia staff member for 27 yrs.

I fully sympathise; I understand how helpless this must be making you feel.

My mum has eaten very little for the last 13 years, since her brain was damaged by a stroke at the age of 63. Now that she has developed vascular dementia, she barely eats at all. Many days, not even a mouthful of solid food.

Mum is prescribed nutrition supplement milkshakes 4 times a day, which she hates but manages to drink with some difficulty. These aren't really sufficient, but they are keeping her alive. I don't know for how much longer.

I find it especially difficult because on good days my mum is lucid, funny, and can reason, but she cannot make herself do something she doesn't want to do. Those good days are becoming rare, though.

The thing to do is always give food that your father enjoys, gently encourage, but don't get stressed when he doesn't eat. All that would do is make both of you unhappy.

Now that your father is disinclined to eat, his appetite probably won't improve. There'll be good days and bad days. Don't take it personally and don't make your dad feel bad about something over which he no longer has any control.

The best we can hope for is to keep our loved ones as comfortable as possible, which for our parents now includes not being forced to eat when they don't want to. Once you can accept this new reality, it will be easier for you and help you to cope better with your caregiving duties.

Wishing you all the best, and comfort and peace for your father.

At this age and with dementia, just let the appetite be. Don't offer too much and don't force it.

Cream of wheat can be pumped up calorically by cooking it with whole milk and adding butter. You can increase the protein with protein powders or stir in nonfat powdered milk. Ice cream is THE miracle food. That seems to be the food anyone will eat.

I know it is frustrating to watch their decline, but this is his body/mind shutting down. Make sure he stays hydrated and let him eat when he wants to. You might try eating when he eats or sitting with him when he eats to try and keep him focused on the task. My mom will forget what she is doing so then I will spoon feed her so that she will get a couple of bites down.

My mom is now under 100 lbs, I figure once she stops eating all together it will be time for hospice. It is very hard and I certainly understand your anxiety over it all.

Mamacrow: The elderly appetite isn't what it was when they were younger, e.g. my mother took three separate days to finish a Panera Bread 'bear claw' pastry. They just don't expend enough calories.

I can relate so much. My Dear Husband has Parkinson’s with Lewy Body. His birthday was the 7th. He turned 77. In the last year he went from 165 to 111. He eats pretty good at breakfast and loves ice cream with whipped cream on top. He also loves to drink Coke and Sprite. Not the best to drink but a few sugar calories. He nibbles lunch and usually skips dinner. One day he wants steak, the next salmon. But whatever he wants, he gets. It’s the least I can do. He can’t feed himself at all due to severe tremor, can’t walk, can’t dress himself or go to the bathroom. He’s at home in Hospice care but I’m his only helper. My fibromyalgia is so bad from wrestling him in and out of bed, on/off toilet, in/out of wheelchair. I can’t take care of him at this pace anymore. I’ll be talking to the Nurse Practitioner tomorrow about next step. If I wait much longer I won’t be able to care for either of us.
Take care of yourself first. Prayers to all. 🥰

Going through this with a LO is always difficult and what is important for us is not for them. My LO is 69 with aTBI that is now into late onset Alzheimer’s. He has lost weight and is not very active but it’s a battle I couldn’t win and have had to change approach. Because of rapid cognitive decline after a case of Covid he was no longer safe at home and neurologist said memory care was the answer. Meals were a struggle he’d wander and forget to eat and he had trouble using utensils. Working with therapist helped to make things easier all around. Red plates encourage them to eat and finger foods or small bites are easy to manage which helped some but he couldn’t sit still for very long. we hit on idea offering premier drinks and small snack as he walked past. The only thing holding his attention at times is old tv shows so again an offering made during Gunsmoke would also be accepted. Being on this journey with them is not easy because we know their days are numbered and the condition is not one they will get better with. As a retired nurse I have been so into healing that now preparing for a death was not something I saw coming so soon. The accident that led to this stage was not expected and I have had to get mental health counseling to help in dealing with this. Support groups and taking care of yourself right now is actually most important for you over getting him to eat. Harsh as it may sound whether or not he eats will not change a thing. What it did do was make us the caregiver feel like we are doing something good for them because it was something we could control. I’m at the stage I can’t control anything but to visit and be there in the present. A frozen coke icee is more important at times and he doesn’t know who I am most times and sits long enough to enjoy a snack with his drink and then he wanders around. I remind myself what we had and try to make a few new memories and remember to breathe and laugh. Anything other than that stresses everyone out and accomplishes little to nothing . Hang in there, he’ll be fine but you need to take care of you first and foremost .

From your responses, it sounds like your brain knows but your heart wasn’t ready. I’ll just echo what everyone else said so you have one more cheerleader to help your heart get there. He can survive a long time on just breakfast but I’d keep healthy snacks around. My mom likes this nut and dried fruit mix so I let her have all she wants of it and keep it where she can serve herself. With his swallowing issues, you may not be able to do that but if there is something you can keep handy, maybe he will eat it in the afternoons. You are doing right but I, too, believe it is time to let him stop eating for the most part. I think if he eats breakfast, he will do just great.

my best to you as you face these last stages with him.

Stop battling. This negatively affects both of you - and negates your intention for him to be as calm as possible (which affects his emotional and physical well-being). Shift to a place of gratitude that he still 'goes outside and tinkers with whatever ..." This is huge. He is as present as he can be. Be grateful for these moments he finds joy or engagement in life.

Instead of screaming, shift that energy and emotion to being present with him, regardless of what he is eating or not eating. Do not let these moments 'pass you by' by being consumed with what he is eating/not eating. You first need to understand why you feel as you do; why you are so adamant that he eats as you feel he needs.

You do not mention MD recommendations.
What does his MD say about his eating behavior?

While not the same situation, my client (104 years old) ate a fairly hearty breakfast 'first meal of the day' (which I prepared) and didn't eat much the rest of the day. While my client was 8 years older than your dad, it is important to realize that the digestive system slows down - as does everything else. Incidentally, she LOVED egg nog which was in the stores at the time. I gave her a large glass of it to start with realizing that if she didn't eat much else, she got a wallop of calories and enjoyment. She then also ate eggs, salmon, fruit, etc.

As you are concerned with him eating (enough), I would focus on bullet drinks (ie., blender smoothies) as then lots of vitamins-minerals-supplements / food can be added, and even whatever he may really like (chocolate? caramel? cinnamon? fruit?). Try combinations and see how it goes. For my client, she liked rice pudding and other high calorie 'puddings' or desserts (i.e., Belgian chocolate 'pudding'). Bananas are excellent as they add texture and most people like them (in addition to being healthy and easy to digest).

I would focus on educating yourself as to what MD says he needs and take it from there. Loss of appetite certainly has to do with depression, 'ready to go'.
It isn't cut and dry.

Be aware of your focus / reasoning and decisions based on your desire to 'keep him going' vs what he needs to do / what is a natural process. Understand your motives, sadness / grief. This is difficult and emotions are mixed with fear and wanting him to be here with you as long as possible, and you are focusing on diet (in this writing) to keep him alive.

Get the support you need, perhaps join a support group.

Gena / Touch Matters

Try keeping small snacks of his old favorites in bowls around where he sits. Potato chips, pretzel crisps, if he has teeth nuts and Peanut m&m's are both good. Avoid wrapped foods. The baking aisle will often have small peanut butter cups or snickers bites for cookies. Have you tried jello with fruit?

Taste and smell diminish with age, particularly with dementia, so food doesn’t have as much appeal as it did before. Eating is such a primal activity that it’s hard to see a loved one not want to eat. At this age he doesn’t have the same nutritional needs we do. Let him eat what he wants and when.

Some great suggestions here - thank you! My mom is 95 with dementia, she has stopped wanting to eat too. Sounds like the cream of wheat is better than what we are doing, and I’m going to try it, but she will eat cereal so we add crushed almonds, add a little whey and serve with a vitamin D milk/vanilla protein drink mix. We add blueberries and bananas. She has very few teeth (she won’t wear her bridge and is now non-compliant at the dentist/doctor offices) which complicates things so we eat a lot of PB&J’s, tune salad, chicken salad and egg salad sandwiches. If he likes ice cream, there are protein ice creams you can try. We try to make every waking moment one with joy, but It is also clear that she is ready to leave us. The best we can do is make our best faith effort to give her the best life possible and embrace the inevitable. Sounds like you are doing just that.

Oh dear friend,
As the body winds down the elder has less and less appetite. It's a natural and common occurrence.
Try to stop the battles and let him live as he wants. Eating what he wants. The hardest part is realizing that our days and his, are limited and this is his time to begin those final days and months. God bless you as you love him each day more and more.

My MIL lived for a YEAR on less than 500 calories per day. Many days it was only a cup of coffee with 3 tablespoons of BOOST in it. And that's ALL she'd eat/drink.

We were told she'd die within 3 weeks at that level of starvation, but she lasted another year.

Nobody forced her to eat anything, ever. Once in a great while she'd ask for a milkshake, but those shakes from McDonalds are not really eating 'healthy.'

MIL's CG's (the kids) were told not to push food at her, and they didn't. I cleaned out her fridge after she died and all that was in there was Diet Coke and some rotted hardboiled eggs. Oh, and mustard.

I know it seems 'mean' to not be able to get your LO to eat, but at some stage of the game, it's just not a priority for them. Leave him be. Just try to keep him hydrated and that's probably the best you can do.

Dear MamaCrow,
When my dad was in Rehab, he also wouldn't really eat, I thought he was going to just die. The doctor's gave him some kind of appetite stimulant (I'm sorry can't remember name). Even though he didn't eat a lot it did help and he said he felt more like eating on it.
So get to the doctor and get an appetite stimulant!
Best Wishes!

My mother is 91 with moderate to severe dementia along with other significant medical conditions. She’s now in AL with hospice palliative care. I don’t get worried about what she eats. Whatever she wants is perfectly fine. Lately it’s Cheerios, chicken noodle soup and ice cream and normally not all of that in one day. We cannot and should not pressure them to eat. They’ll eat however much feels right. It is very hard to watch them decline and I wish you comfort and peace as you go through this.

If he likes breakfast how about adding a few nutritious items like a few flax seeds, chia seeds, sesame seeds etc. Not too many at the same time. . Juicing veggies is also an easy way to get nutrients into the body. Small quantities.

My 85 year old Dad with Alzheimer’s has lost quite a bit of weight since moving to Assisted Living. Doesn’t like the food, even the smell bothers him, he can get grumpy too. Lol!

He loves cereal and milk and does well with fresh fruit, like watermelon and bananas. We’ve just decided to supplement the food from AL with a few groceries like sandwich food.

He now seems to always want ice cream! Any kind. It’s funny and sweet. He’s like a big kid. But he’s 85, he lost weight he needed to lose and now needs to gain or at least maintain. If he wants ice cream, we get it. It brings him joy! I tease him…but he
his attitude is “ I’m 85 and if I want ice cream I can have it!” And I agree.

24/7 care for your Dad is a precious gift to him. Do take good care of yourself too!

Is this a change in behavior over a relatively short period of time or has the unwillingness to eat been gradual over months or years? Sometimes elders use food refusal as a way to establish their independence or to reassert their personhood, this often happens when they’ve lost the ability to do much for themselves. Some elders also refuse food when they are ready to give up. I’d like to say there is a correlation to those who have DNRs and those who don’t, but I haven’t found that to be connected.
If it is a sudden change, make sure to pay attention to dental health. A simple cavity or some change in dentures can make eating tough and they may not have the ability/awareness to relate that to you.

Maybe relax on the idea of formal meals. Offer him "snacks" - several small meals - throughout the day. Opt for protein and produce (fruit or veggies) since they have everything he needs - protein, carbs, fats, vitamins and minerals. Also try any of the high protein "shakes." In the hospital where I work, 5 high protein Ensure drinks (full size not the minis) is the same as 3 good meals a day.

Hospice prescribed my dad some cbd, which made his appetite perk up.

My mom is having swallowing problems so I've gone to soft foods only. She loves ice cream and I found the easiest way for her to eat it is to hand her a Klondike bar. She can hold it and eat it and not have to mess with a bowl and a spoon. Silverware has also become difficult.

My mom was never a big eater. She was always concerned about her figure. Ironically, she was a fabulous cook who served delicious meals.

When Mom became older she barely ate anything. She said that she wasn’t hungry. She ate a little bit of food because she knew that she had to. Her doctor didn’t want her to lose any more weight.

In spite of her tiny frame, she lived to be 95 years old. She had Parkinson’s disease and developed dementia towards the end of her life.

Mom did better when I served her food on small plates. She freaked out if she saw a normal sized portion of food in front of her, claiming that she couldn’t possibly eat that much food at once.

I would be able to get nutrients in her also by making healthy smoothies. There are lots of different recipes online that you can try.

Thinking outside of the box... I have acid-reflex but it doesn't bother me after breakfast. It does bother me after lunch and after dinner. I love bananas but it does a number on me hours later, which is surprising as one doesn't think acid-reflex from bananas but it can trigger in some people.

What helps me is having a Tums before lunch and dinner. I don't know if your Dad could try a Tums due to his swallowing.

People are still people. When my wife chose not eat, she typically did so by clamping her mouth shut. Occasionally though she’d had difficulty swallowing. Eventually all her foods were purées. Even so, refusing to accept a spoonful of food happened. My success with her was based in …. patience, finding alternative foods, diversions, and time. I also supplemented normal foods with Ensure now and then. Each meal took anywhere from 20 minutes to 2 hours. I found no easy solution, but was relatively successful in getting her nutrition up until the very end.

Yes. You should relax and let this be.
We all die.
At the point we get Lewy's, if your Dad is at all like my brother who at 85 got the same diagnosis, he is well ready to die.

The truth is that elders need little to nothing to live, to survive.

I would in no way attempt to change what my father ate, other than to keep it easy to swallow as swallow does become a problem for those with Lewy's. And I would let him eat as much as he liked of all the things he likes for the duration.

Now your Dad is 96 I think you should prepare yourself that he will soon be leaving you, and I think that you should make his exit as pleasant and easy for him as you are able.

Mamacrow, since your Dad will eat breakfast, try serving the same items for lunch and dinner.

I assume your Dad isn't physically active [like a lot of walking], if no, maybe in his mind he feels he is getting enough calories at breakfast, and that eating lunch/dinner makes him feel too full/bloated. And lets not forget, as we age our taste buds go on strike, thus some of our favorite foods no longer taste good.

Maybe time for Hospice? I usually try milkshakes when appetite goes. Gets calories in him. Make breakfast hearty for now.