Today's ingredient is actually food; no really, it is.
Today I want to talk about how the dementia patient's relationship with food changes throughout the stages of the disease.
Since what goes into their mouth is one of the few things they can control over the course of the disease the changes from beginning to end can be substantial.
During the beginning stage of the disease your loved one will typically maintain a diet very similar to what you have seen them eat in years past. If you are already making them meals or even buying their groceries at this point just making sure they are getting a healthy balanced diet is really all you'll need to watch for.
Replacing sugary treats with some healthy options can be good for them too. In doing this though, please keep in mind those favorite treats your loved one has- just always had to have- don't all need to go.
Moments of joy are so very important. As they move forward in this disease they are fewer and harder to find. Food is one you can give them. It's simple, it's easy and it makes them smile.
Once your loved one moves into the middle stages of dementia one of the first things you may notice in regards to their eating patterns is that they might forget to eat or they may eat a lot less than what you are used to seeing them do.
This can happen for many different reasons. They may originally cut back on their food intake simply because eating has now become hard for them.
They may have a hard time letting you know what they like and don't like or if their meal is too warm or too cold. They may not even be able to see the food that is put on their plate anymore.
Are they having trouble seeing what is on their plate? If this is the case studies show that switching their white plate out for a red one may be a very simple quick fix.
In a study done at Boston University they found this:
Out of Sight Out of Mind
If you couldn’t see your mashed potatoes, you probably wouldn’t eat them.
That was the premise that BU biopsychologist Alice Cronin-Golomb and her research partners adopted when they designed the “red plate study.” Their idea was to see whether senior citizens with advanced Alzheimer’s disease would eat more food from red plates than they did from white ones.
Cronin-Golomb’s team, led by then-BU postdoctoral fellow and current Senior Lecturer in Psychology Tracy Dunne (GRS’92, ’99), tested advanced Alzheimer’s patients’ level of food intake with standard white plates and with bright-red ones. What they found was astonishing—patients eating from red plates consumed 25 percent more food than those eating from white plates.
By simply changing the color of the plates you are serving their food on you can make things easier for them and maximize the amount of food they consume at each meal.
Modified utensils and cups can also be game changers at meal time.
Grabbing a fork that has a large red handle will be so much easier for folks who are beginning to have trouble manipulating the smaller typical dinnerware.
In addition, if your loved one is having more difficulty tilting their head, a cup with the nose cutout could be just what they need to make sure they stay hydrated and prevent spillage.
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If you're finding that changing tastebuds seem to be more of the issue, the better you know your patient the better chance you'll have of getting foods they like and will eat. Person Centered Care is something I discussed at length in my previous post.
If you are caring for someone you dont know very well or you are still learning, you can try giving them a few different choices at mealtime until you learn the things they like and the things that make them go yuck!
You may also notice that the sweet treats go quicker at this stage of the disease than anything else you put in front of them.
According to the Alzheimer’s Association although in early stage dementia you are hoping to cut down on refined sugars, in the later-stages of Alzheimer's, if appetite loss is a problem, adding sugar to foods may encourage eating.
So letting them have that cookie or the ice cream they love is not necessarily a bad thing.
As you would for yourself, always be sure to test the temperature of what you are setting in front of them. Too hot can be dangerous and too cold can be gross. A dementia patient at this stage of the disease will not remember to do that on their own.
Be sure to keep mealtimes calm and comfortable. Too much stimulation can put your loved one into overload and make it nearly impossible for them to concentrate on eating.
If you notice your loved one seems tired at meal times and you are having trouble getting them to eat enough simply because they are just too sleepy, offer finger foods throughout the day. Sitting down at 8, noon and 5 to have scheduled meals just may not be a thing anymore. The more they have food available to them, the more likely they are to get the recommended amount of calories for the day.
If you are sitting at a meal with them don't just assume they are done when you notice a pause in their eating. Slow and steady wins the race. They may just not have the energy to eat as fast as they once did.
Another issue during these middle to late stages is that your loved one may just forget to eat altogether. Luckily they have you there to remind them.
Preparing the meals, setting the scene, bringing your loved one to the table and having a seat with them (no one likes to eat alone) are all ways to remind your loved one to eat without actually "reminding them to eat".
Watching what you're doing, seeing the food in front of them, seeing you eat, all of these can be nice visual cues to help them along.
On the flip side of this your loved one may ask repeatedly for meals they just ate. They don't remember eating lunch so they must not have had any today.
There are a couple ways you can choose to handle this.
If it is safe and healthy for them to have a small snack when they ask for food again, this may be perfect in the moment. They may just still be hungry and not had quite enough at meal time.
However, if you know they have had enough you may chose to redirect. Start a whole new conversation or begin a whole new activity. Redirecting is a wonderful skill to have as a dementia caregiver and will come in handy time after time.
Once your loved one moves into late stage dementia, the changes in their diet may become even more pronounced.
Your loved one may now have swallowing difficulties; this is known as dysphagia.
It is very common in people with dementia as the disease progresses.
When swallowing becomes harder your first step may be to switch them to a mechanical soft diet.
This diet is made up of food that is easy to eat without biting or chewing.
Moving forward foods can be pureed, finely chopped, blended or ground to make them smaller softer and easier to chew.
You may also need to add in protein shakes at this point, such as Ensure, to make sure your loved one is getting enough calories. Ensure shakes come in different flavors so you can cater them to your loved ones taste.
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There are also options for thickening your loved ones daily liquids to make them easier to swallow. Ie; their juice, milk or water.
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As always before you add or change things for your loved one consult their physician.
When end of life is near, it is very common for your loved ones to stop eating altogether. With all the physical disabilities they are now dealing with along with the exhaustion of dealing with this disease for so long, they get tired.
A patient deciding not to eat can be a sign that the body is preparing for death.
They are not starving to death.
During the last weeks, days or hours of life, it's normal for people to eat and drink less than usual or not at all. When someone is dying: their body slows down and needs less energy. They may be unable to process food and drink.
At this point in the disease it is not beneficial to try to force them to eat or drink.
It can be one of the hardest things that you as a loved one will have to go through.
When it gets to this level it may be time to reach out to your local hospice groups to find a good fit for your loved one and your family.
Your loved one's physician can help you figure out what your next best step should be. If your doctor believes that to
be hospice, they should be able to get you the information about all that hospice is and does and also the locations near you.
Hospice can help you to understand what is happening and help your loved one be as comfortable as possible through this end of life process. Hospice can also be there for you. You too will need to have a soft place to fall. Somewhere with people that truly get it and can offer sound advice or just a warm hug.
I know that hospice can be a very scary word but they are truly a Godsend for folks at the end of life and their families.
No matter which stage of dementia your loved one is currently living in, the issue of food will always be there.
The more you know the easier it will be for you as their caregiver and most importantly the easier it will be for them to get what they need.
As with anything you encounter along this journey, you can always reach out to the Alzheimer’s Association at any time for anything.
They are the experts on all things dementia and can offer their advice or just an ear.
If you are in the US, you can always call the Alzheimer’s Association 24/7 Helpline (1-800-272-3900) to vent, get advice, & resources.
Thank you for writing this post. I hope that nobody in my family or any of my friends will ever get dementia but with this, I’ll at least know how to help them through it all.
I learned something truly insightful today about how dementia affects a person's relationship with food. It’s fascinating—and a bit heartbreaking—to see how one of the few things they can control changes as the disease progresses. Thanks for sharing.
Thanks for sharing this. I learned a lot in this post!