Care Partnering, Challenges & Solutions, Toward better care

30 reasons people living with dementia might decline to eat

Some people say there are no stupid questions. I beg to differ. I regularly see stupid questions, or perhaps ignorant questions would be more accurate, being asked about people who live with dementia.

Often the questions come into my inbox from Quora. I answer the occasional one, like this query from a grandson for example. Most I ignore because the answers may be easily found with a quick google search.

Then there are the questions such as this that make me hot under the collar: “What does it mean when a person with dementia refuses food?” To which I couldn’t help but answer pointedly: “Oh for heaven’s sake. People with dementia are PEOPLE. Their behaviour is NORMAL. Ask yourself why you might refuse food, and you will have the answer to your question.”

I went on to give a list of thirty potential reasons someone living with dementia (or someone NOT living with dementia for that matter) might decline to eat:

  1. He is not hungry
  2. She doesn’t care for the food she’s being offered
  3. He doesn’t like the way the food is presented (e.g. the colour, the texture, the fact that it’s pureed, or not, or it doesn’t even LOOK like food)
  4. She doesn’t like the smell of the food
  5. He doesn’t like the taste of the food / the food tastes bad.
  6. The food is too hot or too cold
  7. She is sick
  8. She is tired and doesn’t feel like eating
  9. He is in pain
  10. Her tummy is upset, she has cramps
  11. She’s having trouble swallowing and she’s afraid she might choke
  12. He’s so sedated with drugs that he’s not interesting in eating or he physically can’t eat
  13. She doesn’t remember how to use the utensils, and she doesn’t want to be impolite and use her hands
  14. It’s not his usual mealtime; it’s too early or too late
  15. Someone is telling her / giving her an order to eat and she hates people telling her what to do
  16. Someone is trying to feed him, when he is perfectly capable of feeding himself
  17. She needs help to eat, but she’s too afraid to ask or there’s no around to help her
  18. It’s too noisy / it’s too quiet
  19. She’s tired of eating the same thing all the time
  20. The place he’s in is unfamiliar; he prefers to eat where he usually eats
  21. She prefers to eat what she wants, and no one asked her what she wanted
  22. The lights are too bright / the lights are too dim.
  23. He feels constipated / she needs to go to the bathroom
  24. She is surrounded by strange people and she wants to go home and eat with her family
  25. She wants to sit with her friend at another table, but she’s not “allowed”
  26. His dentures don’t fit properly and it’s hard for him to chew
  27. She doesn’t seem to have her dentures anymore, and she can’t eat properly without them
  28. Whenever he eats, he gets some kind of adverse reaction, so he’s refusing to eat to avoid the reaction
  29. She saw someone crush pills into her food, and she doesn’t want to take the pills
  30. He’s at the end of life, and I doesn’t feel like eating anymore

No doubt there are other reasons I haven’t thought of. The important thing is to remember that people who live with dementia are just like the rest of us. They are human beings with thoughts, feelings, needs, likes and dislikes.

If we took the time to ask ourselves smart questions about why people who live with dementia behave as they do, we wouldn’t need to ask stupid and ignorant ones!

And BTW, all of this is yet ANOTHER reason we need to #BanBPSD.

More posts and PDFs in the “20 questions”series.

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

20 questions to ask when a care partner or resident walks around at night

“wandering” is not a symptom of dementia

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Joy, Life & Living, Love, Memories

beauty & the bbq on the back deck


July 8, 2017: The images popped up unbidden on my Facebook page–did I want to re-share this photo album from five years ago today? My chest tightened. A prickly ball make its way up my throat, and lodged at the top of it.

I’d “forgotten” about the dozens of delightful meals we’d eaten on the back deck in the summer of 2012, the one before Mom went into what I came to call “ElderJail.” I hadn’t thought about the hundreds such meals–breakfasts, lunches and dinners–we’d enjoyed over the 40 years she’d lived in the big red brick house on the hill. But when FB reminded me, I was flooded with memories.

There’s something really important everyone should know about Alzheimer disease:

A diagnosis of dementia is no more a death sentence than life itself is. People who live with dementia have the capacity to experience joy, love, sadness, happiness, grief and wonder just like we all do for a very long time. And that capacity is enhanced when they are surrounded by people who care deeply for them, and who help them engage life in whatever way they can in the moment.

On July 8, 2012, when Mom was well into the mid “stages” of Alzheimer disease, we savoured a meal of fresh vegetables I grilled on the barbecue. The food was delicious. The late-afternoon sun cast long soft shadows across the edges of the field. Mom looked beautiful and happy.

I’m grateful for the time we had, despite the challenges we also endured, and I’m pleased to share these thoughts and images with you today.

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Our stories, Who cares?

i know what they liked to eat

Grilled cheese sandwhich

This is one in series of posts called “Little things count.”

From JR:

I work at an assisted living facility. Three people have passed this month; Clyde was on of them. I’m the cook and I never met these beautiful souls. But I know what they liked to eat.

Geoffrey wouldn’t eat anything but ham salad sandwiches. Nothing else. One day I made meatloaf with mashed potatoes and gravy. He ate that. It made me smile when his dish came back clean as a whistle.

Martha was on a puréed diet. I would make sure to give her the extra sweet purée dessert. My Mom was on purée before she died and wouldn’t eat anything but dessert. Loretta loved grilled cheese so she got one everyday on my shift.

Now Geoffrey and Martha and Clyde are gone and I’m sad I don’t know what Clyde liked to eat. Fly high you beautiful souls. I never saw you, but you touched my life and I’m thankful.

It’s the little things that count.

Share your “little thing” in the comments.

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Care Partnering, Challenges & Solutions, Life & Living, Love, Videos

another day at the alzheimer cafe

Alzheimer's cafe take twoThings were going along swimmingly at the Alzheimer’s cafe: Mom had buttered the toast and was reading the sticky notes that sat on the kitchen counter by the fridge.

I was filling our plates and capturing everything on video, when at 2:15 it all went suddenly and horribly wrong! It’s easy for me to see my faux pas and its impact – can you?

And do you notice anything different in this clip than in the first one here? It’s all one great big learning opportunity LOL 🙂

August 23, 2014

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