Building diet resources after my father's early-onset diagnosis - seeking your experiences

robp

Hello everyone,

My father was diagnosed with early-onset Alzheimer's earlier this year, and through our journey, we've found it challenging to find good dietary resources and support. I'm working on building an online resource to help others facing similar challenges.

Before building it, I'd really value hearing about your experiences:

1. What's been the most challenging part of making dietary changes? (Like finding recipes, grocery shopping, meal planning, etc.)

2. For those following specialized diets (like ketogenic/Mediterranean/etc.), what are your biggest daily struggles in trying to stick with it? Which diet are you trying to adhere to?

I want to ensure whatever I build actually addresses the real problems we all face in this journey. Your experiences would be incredibly helpful in shaping this resource to be truly useful for our community.

Thank you for any insights you're willing to share

Carl46

The hardest part for me was having to make meals from two menus because others in the household refused to eat what I was supposed to eat.

I eat what my doctor told me to eat. At each meal, divide the plate into quarters. One quarter protein, one carb, two veggies. No fried food, no red meat. So, pretty close to Mediterranean diet. As a result, I am no longer diabetic and no longer a customer for King Size, a mail order clothing company.

If you really want to eat healthy, buy a diabetic cookbook and use it. What diabetics are supposed to eat is actually what everybody is supposed to eat.

One of my friends went on the keto diet, in those days called the high protein diet. He lifted weights as well. He looked great, right up to the day of his heart attack at age 45. The keto, paleo, and similar diets are high fat diets, and not good for humans.

harshedbuzz

@robp

Hi and welcome. I am sorry for your reason to be here but glad you found this place.

IME, most mainstream physicians recommend a heart-healthy diet like DASH or the Mediterranean Diet for everyone. It is included in the Best Practices for PWD.

1. The biggest part of making dietary changes is getting buy-in from others. This lack of enthusiasm, IME, may be rooted in a baked-in preference for the food they grew up on (my DH, lean to a fault who loves junk), ignorance around nutrition (my son who lives on Chipotle insisting brown rice isn't a carb) and my dad (with dementia with a palate that craves sweet).

2. In dementia, the changing palate can be an issue early on. One of my first clues was dad's consumption of ice cream and cookies; growing up this was not anything he ate. Before dementia my parents both ate along the Mediterranean Diet lines— broiled fish, chicken, a huge salad, veggies and maybe a jacket potato. As a kid, he took us out to an ice cream parlor every Friday night after doing payroll at his shop where we had sundaes and he had a cup of coffee and sometimes a BLT.

As his dementia progressed, he preferred foods that were easy— soups, chicken fingers, foods that were sauced or in gravy and easy to swallow. Further into the disease progression, it's typical for appetite to tank and it becomes a challenge to get any kind of calories in. Hydration can be an issue at this point as well.

HB

HollyBerry

I think the most salient piece of advice is that none of us can make someone else eat anything they don't want to eat, especially once they have AD. I can put healthy food on the table but I can't force my partner to eat it. She just came to me announcing that she's going to have a granola bar. She's not hungry, she's bored, and it's the fourth one she's had today (that I'm aware of), and she has refused my offers to make her some real food. So now she's had too much sugar, she's bored, she's not hungry any more, and she's crabby. When I'm ready for supper in a couple hours, she'll insist she's not hungry, but once I start to eat she'll want something different from what I'm eating and she'll want it NOW. It's worse than having small children, because with small children you can set limits and teach good eating habits, but with adults with AD, that ship has sailed.

Way back in the beginning, she was much more open to eating healthy food if she thought it would help her brain. She discovered a vitamin pusher and spent hundreds of dollars a month on supplements and various other things. Then she stopped abruptly one day and never went back. Her motivation to do anything to help her brain has diminished, not just healthy eating, because she can't see an immediate effect and doesn't have the capacity to think ahead to things that are intangible.

If you seriously want to offer food and nutrition advice to caregivers that we would actually follow, offer us grace to provide food that makes our loved ones happy and generally healthy, and to take care of our own food and exercise habits first. Don't make people feel guilty because they're not preparing beautiful salmon and vegetable dinners for a person who's going to offer the expensive salmon to the dog and then walk away from the rest of the meal and ask for ice cream.

(sorry if this sounds harsh. My biases are showing. I have two degrees in nutrition and a long career in the field, along with a partner with food allergies who willingly eats about a dozen different foods these days - coffee, eggs, toast, cheese, granola bars, sweet potatoes/fries, rice/beans/corn with Mexican seasoning, ice cream… She says nothing tastes good to her, takes a few bites and walks away.)

fmb

@HollyBerry said:

If you seriously want to offer food and nutrition advice to caregivers that we would actually follow, offer us grace to provide food that makes our loved ones happy and generally healthy, and to take care of our own food and exercise habits first. 

I second every word of this.

While we should all aspire to eat a healthful diet, by the time dementia appears, an unhealthful diet has already done its damage. The effect of diet as a contributing factor in the development of dementia is not clear. Assuming testing has been done to rule out reversible conditions that can mimic dementia (B12 deficiency, Thyroid problems, etc.), dementia is not a disease that can be reversed by diet or other interventions.

With so many challenges facing the PWD and caregiver, arguments over eating are just one more stressor for both. Inability to make informed decisions about what to eat is an integral part of the disease from the fairly early stages on as executive function disappears. As dementia progresses, the perception of taste and texture changes. Even in Stages 3 & 4, my DH was a very picky eater and wanted exactly the same foods nearly every day. The Tam Cummings DBAT lists a preference for sweets over other food as early as Stage 5. It has been postulated that this is because the brain requires more glucose because it is working harder to compensate for its deficiencies. As the physical changes associated with dementia occur, the PWD's ability to swallow is greatly impaired. If a stroke has occurred (as is my DH's case), even his ability to move his tongue to get food from the front of his mouth to where it can be swallowed is impaired. Inactivity requires a reduced caloric intake, reducing the appetite. Eventually there comes a point where any calorie is a good calorie as the body slowly shuts down the digestive process. My DH is now is late Stage 7, residing in an ALF with hospice care. Up until this week he was officially on a diet of puree and thickened liquids. If you have ever tried to eat puree, you know how unappetizing it is. Sometimes I couldn't even tell what the food was supposed to be. Taste, texture and odor are lost. Because his plates were returning to the kitchen virtually untouched, they are now serving him only what he will eat. He is now eating only yogurt, pudding, (occasionally) applesauce, and ice cream. Thickened liquids are also unappetizing and, although necessary if the PWD aspirates thin liquids, are more difficult to drink, leading to less fluid intake. I am grateful for every calorie he ingests, no matter how unhealthful it would be for a healthy person. Our hospice nurse agrees. He is dying of a terminal illness. Nutrition is a moot point.

The other part of the equation, and the one I think is even more important, is that the caregiver must maintain their own health. I know that by the time I come home from seeing DH at his residence, the last thing I want to do is cook a supper for one. When I get a rare day at home all day, I try to cook things that can be frozen in meal portions so I can eat fairly well on busy days. Unfortunately I end up eating too much convenience food out of sheer exhaustion. Now that winter weather is here, exercise is just a little housework or a walk on the local trail if I can get it in before dark.

Carl46

FMB, you are so right. I give nutrition advice from time to time, usually repeating something I have read since I am not an expert. When I do so, I am mainly directing the advice to the caregivers, who need to stay healthy for themselves and for the people who depend on them. No food is healthy until someone eats it. I nudge my wife toward healthy choices, but I know she will accept only the healthy things from a fairly limited menu.

robp

https://alzconnected.org/discussion/comment/229236#Comment_229236

Not harsh at all! Actually, the point around "offer us grace to provide food that makes our loved ones happy and generally healthy." is a big part of the challenge my parents have experienced. They only find sources online that show "perfection" but not how to strike a balance. Their doctor says "just do your best" but online sources only show "what perfect looks like" which isn't always realistic.

trottingalong

@HollyBerry nailed it. I tried the healthy diet. As this disease progresses, I look just to get my DH to eat more than junk food. He’s always been wiry, now he’s just thin. He can’t taste anything but sweetness, so he gravitates towards sugary items. I fix him breakfast and dinner and snack in between. At this point, what’s it reality matter what he eats as long as I can get him to eat. Usually I can get breakfast burrito into him and a decent dinner.

LamBee

When my aunt first came to live with us, she was in pretty bad shape. My mom assured me she was ok, but when I flew down to visit her, her electricity was turned off and she was eating salmon frozen dinners, and didn’t want to throw out the ones that were spoiled. She was actively drinking very sour milk, too.

When she came to live with us, I knew she was in good physical shape for her 91 years, and liked to eat healthy. After getting her to the doctor and finding out she had a-Fib, high blood pressure, and moderate kidney damage, I did what I could in the beginning to offer her choices that were to her liking, but also not too high in salt or protein. We started with new foods during lunch, where I could see what she liked and add it to the rotation, if she would eat it. She doesn’t have diverticulosis/diverticulitis, or diabetes, so I found Sargento makes little cheese and dried fruit or nut snack packs. These are great in the middle of the day, she can feed herself, and it keeps her attention…especially if it has little dark chocolate pieces. I learned that she likes blueberries and strawberries, so, now and then I will boil up some quick oats and add some frozen strawberries or blueberries. We tried doing fresh, but they had a tendency to start to turn before she could finish them. She gets her small cup of coffee in the morning, because she likes it and I won’t deprive her of that. Same thing with her Klondike Krunch bar each night, or warm cocoa in the winter.

Sometimes for breakfast we’ll do toast, rather than oatmeal, or a cranberry or blueberry muffin from the supermarket bakery. I don’t do eggs or bacon in the morning except for special occasions. Lunch, she’s a big fan of salads, and I try to get ones that have just a lil bit of protein in the way of shredded cheese or grilled chicken. I also have fruit jello on hand with mandarin slices in it, and packs of pudding, to switch things up now and then. During the day I pour for her either low-fat milk, or a few tablespoons of apple or cran-apple juice mixed with a healthy dose of water. It keeps her hydrated, and she likes it, without a lot of extra sugar.

I will be the first to admit, though I’d love to make salmon for her for dinner, or other elaborate meals with lots of prep, it normally doesn’t happen. My DH is a picky eater. So, during the week I’m cooking one meal a night, with quick backups for her (or him) if one of them gets picky. But, I can do this because I’m home with her, if I had young kids, or worked outside of the home, I don’t think I could do it. Pasta-based meals have helped me keep weight on her thus far. If I put bread on her plate at dinner (including sandwiches), she’ll give it to our dog. Fridays is the day I don’t cook if I can help it, and we get takeout.