Expert Q&A on Eating and Drinking - Thursday 23rd June, 3-4pm

[Mark_W]

Eating and Drinking can become a difficult issue for people with dementia, and it can be a challenge to care for a person with dementia and ensure that they remain healthy.

Our next Q&A will be on the topic of Eating and Drinking. Gemma from our Knowledge team will be answering questions on Thursday 23 June from 3-4pm.

If you have any questions you’d like to ask, just post them in this thread and Gemma will answer them on the day.

Or please email them to us at talkingpoint@alzheimers.org.uk: we’d be happy to ask them on your behalf.

Thanks

 

[Torontonian]

Eating and Drinking

Good afternoon,

Hoping I am posting at the right place..

My mom with Alzheimers and Dementia (Vascular), was hospitalized a couple of weeks ago twice.. First was the diverticuloses (imflammation) in the bowels.. it was fixed with a 5 day of antibiotic IV as she wouldn't take any pills.. She was sent home after five days of stay at the hospital and given prescription for another 5 days of pills/liquid antibiotic... the long term home staff were unable to get her take her tablets so after a couple of days she developed fever and not feeling well. She was sent to another hospital and was diagnosed with pneumonia - bacterial one; not the influenza kind... This time they kept her for 7 days with IV antibiotics and IV for hydration as she now not eating at all or drinking anything... We managed to give her a piece of chocolate once and a few sips of drinks once or twice..

All the blood tests show there are no infections or irregularities with her system and she is being sent to home today.. Since she has been hospitalized twice in the span of 2 to 3 weeks, she is unable to stand as well.. She has not taken a step or two...

I have read a bunch of comments about sudden decline and not eating or drinking but then I read most of the loved ones suddenly started to eat and drink..

I am hoping my mom will do the same but I am worried..

 

[Mark_W]

Thanks for the question and yes you're in the right place. We're just about to get started on the Q&A where Gemma will be answering your questions on Eating and Drinking. But first let me ask Gemma to introduce herself and tell us a bit about what she does for the society.

 

[GemmaJ]

Hello everyone!
Thank you for inviting me along today. My name is Gemma, I work in the Knowledge team here at the Alzheimer's Society. I am responsible for our information on health and well-being.
I look forward to your questions on eating and drinking

Gem

 

[Torontonian]

Thanks for the question and yes you're in the right place. We're just about to get started on the Q&A where Gemma will be answering your questions on Eating and Drinking. But first let me ask Gemma to introduce herself and tell us a bit about what she does for the society.

Thank you Mark!

 

[Torontonian]

Hello everyone!
Thank you for inviting me along today. My name is Gemma, I work in the Knowledge team here at the Alzheimer's Society. I am responsible for our information on health and well-being.
I look forward to your questions on eating and drinking

Gem

Hi Gemma!

 

[GemmaJ]

Good afternoon,

Hoping I am posting at the right place..

My mom with Alzheimers and Dementia (Vascular), was hospitalized a couple of weeks ago twice.. First was the diverticuloses (imflammation) in the bowels.. it was fixed with a 5 day of antibiotic IV as she wouldn't take any pills.. She was sent home after five days of stay at the hospital and given prescription for another 5 days of pills/liquid antibiotic... the long term home staff were unable to get her take her tablets so after a couple of days she developed fever and not feeling well. She was sent to another hospital and was diagnosed with pneumonia - bacterial one; not the influenza kind... This time they kept her for 7 days with IV antibiotics and IV for hydration as she now not eating at all or drinking anything... We managed to give her a piece of chocolate once and a few sips of drinks once or twice..

All the blood tests show there are no infections or irregularities with her system and she is being sent to home today.. Since she has been hospitalized twice in the span of 2 to 3 weeks, she is unable to stand as well.. She has not taken a step or two...

I have read a bunch of comments about sudden decline and not eating or drinking but then I read most of the loved ones suddenly started to eat and drink..

I am hoping my mom will do the same but I am worried..

Hello Torontonian,

Thank you for your question.

I’m sorry to hear that your mum has had such a difficult time recently. It sounds like it has really taken it out of her and you.

It’s understandable to be worried and it is a difficult situation. There is no easy answer as to whether your mum will suddenly start eating and drinking again. The main thing is to keep trying to get her to eat and drink. It can help to use her favourite foods, food that is easy to swallow (e.g. soups, soft food, milkshakes etc) and try building up. Keeping her comfortable, offering sips of water and juice can help. It can also help to go for higher calorie food.

Have the hospital offered any support or advice on ways to support her?

Being in hospital is difficult at the best of times and for people with dementia it is extra hard. It is a big shock to the system and it can take a long time to readjust after being ill. If she isn’t moving much, it is likely her appetite is decreased because she’s not using at much energy – have they offered any support to get her a bit more mobile?

Also, as dementia progresses people tend to eat less and need less food and drink. Does your mum have a problem with her swallow? You said she didn’t take her pills and this may be causing problems with eating and drinking. It would be a good idea to ask for input from a Speech and Language Therapist to see if this might be contributing to the problems.
I hope some of this is helpful. Good luck for you and your mum.
Gemma

 

[Mark_W]

We've also had a lot of questions pour in via email on this topic so we're going to try and answer as many as we can.

-----

Good morning,

I have recently joined talking point for Alzheimer’s and I am supporting my Mum who is presently in a nursing home. Since my Mum went into the home in January she has not eaten or taken fluids, in the early days we were still able to encourage some fluids but now it’s very limited. Mum is bed bound and doubly incontinent very little
communication except the odd swear word or yes. She was a large lady so I know she has been living of her excess fat but now she is being to look haggard.

I am struggling to explain to my Dad why mum is not eating and drinking and that no she will not walk or recover again any advice would be appreciated, and how long can someone go without food and fluid before it becomes a danger. We have a DNAR in place and LPA and want her treated Palliative were possible.

Thank you

Angie

------

 

[GemmaJ]

We've also had a lot of questions pour in via email on this topic so we're going to try and answer as many as we can.

-----

Good morning,

I have recently joined talking point for Alzheimer’s and I am supporting my Mum who is presently in a nursing home. Since my Mum went into the home in January she has not eaten or taken fluids, in the early days we were still able to encourage some fluids but now it’s very limited. Mum is bed bound and doubly incontinent very little
communication except the odd swear word or yes. She was a large lady so I know she has been living of her excess fat but now she is being to look haggard.

I am struggling to explain to my Dad why mum is not eating and drinking and that no she will not walk or recover again any advice would be appreciated, and how long can someone go without food and fluid before it becomes a danger. We have a DNAR in place and LPA and want her treated Palliative were possible.

Thank you

Angie

------

Hello Angie,
Thank you for sharing your situation.
It is really difficult to watch someone’s dementia progress, especially when you don’t understand what is happening and why it is happening. It sounds like your dad is having a difficult time with the situation, and I’m sure your support is invaluable. It must be very tough on you as well, I hope you are finding ways to support yourself.

In the later stages of dementia your mum’s appetite will decrease (it is part of the disease progression) and she is likely to have problems with swallowing (which makes eating and drinking harder)
As a person with dementia reaches the later stages of dementia their body will begin to shut down, this means that they stop taking food and drink. Sadly this can be quite a slow process and it can go on for a long-time, which is very painful to watch. However, a person with advanced dementia should still be offered food and fluids (even if these are just mouthfuls or sips) for as long as they are interested and can take them safely. The focus should be on making sure they are comfortable. Other things that can help are encouraging sips of fluid (where possible) and things like keeping the lips moist, providing sips of iced water or juice and applying lip balm.

It’s not easy to explain to someone that the dementia is progressing and the person is reaching the later stages where the body begins to shut down. Would your dad find it helpful to speak to a professional such as a doctor or nurse about dementia and how it progresses? Sometimes this information is easier to take from someone in a professional context than a family member.

With regards to what you can do, I think it helps to be honest, and explaining that dementia is a progressive illness which means it gets worse, and as it does progress it becomes harder and harder for the person to manage everyday tasks. With regards to the eating and drinking, explaining that it is a natural part of the progression of dementia, and that your mum isn’t suffering. It is just her body’s way of adapting as the disease progresses. It is very painful to watch and it is a natural response to try and protect yourself from difficult situations. I think all you can do is be there for your dad and try to explain that it is the disease and that the important thing is to make sure your mum is comfortable. You should also make sure you have an opportunity to manage your own feelings about the situation. I know this is difficult but it is important for your well-being.

How long someone can go without food and fluid before it becomes a danger will depend on the situation. It is natural in the later stages to stop taking food and fluids, as the disease progresses and the body shuts down. If the reason for not eating and drinking is because of the dementia progressing then it is usually best to let it progress naturally. This is very difficult because it can feel like the person is being starved or unnecessarily dehydrated, however, it is part of the disease process and they are not suffering. In this situation most medical professionals agree that artificial nutrition and hydration is not appropriate. However, it is still possible to keep the person comfortable.

Have you been able to speak to anyone in the nursing home about your mum’s situation? It might be helpful to have a chat with them about how they manage situations where people aren’t eating and drinking when the person’s dementia has progressed to the later stages. It will also give you the opportunity to talk about what your mum wants and what you want. I would also ask if they have any input from a palliative care team. I think this would help the situation.

I hope this is helpful and if you have any more questions please let me know.

Gemma

 

[Mark_W]

And we've had this question from Chris:

-----
Hi

I am in Australia, and my husband has been diagnosed with vascular (and possibly mixed) dementia. He has gone off eating and doesn't seem to recognise the signals of hunger any more.

His diet starts off OK in the day - he eats cereal with some soy blueberry yoghurt. For the rest of the day it is hard to get him to eat anything of consequence. If he could he would live on ginger-nut biscuits and icecream!

I try to tempt him with blueberry and banana smoothies (sometimes with Sustagen or an egg added), cheese and biscuits, avocado, grapes, other fruits, walnuts. He won't eat meat, fish, chicken, eggs, vegetables apart from avocado, maybe a little lettuce and tomato. He does love prawns and I buy big bags of those (frozen) and give in to cooking those for him on occasion. I make pumpkin soup with sweet potato and carrots added and he will drink some of that. But it is under sufferance.

In addition to the other stuff I am doing now for him, I find it exhausting trying to come up with ideas for food, and would be grateful for any thoughts on this .

Many thanks

Chris
-----

 

[GemmaJ]

And we've had this question from Chris:

-----
Hi

I am in Australia, and my husband has been diagnosed with vascular (and possibly mixed) dementia. He has gone off eating and doesn't seem to recognise the signals of hunger any more.

His diet starts off OK in the day - he eats cereal with some soy blueberry yoghurt. For the rest of the day it is hard to get him to eat anything of consequence. If he could he would live on ginger-nut biscuits and icecream!

I try to tempt him with blueberry and banana smoothies (sometimes with Sustagen or an egg added), cheese and biscuits, avocado, grapes, other fruits, walnuts. He won't eat meat, fish, chicken, eggs, vegetables apart from avocado, maybe a little lettuce and tomato. He does love prawns and I buy big bags of those (frozen) and give in to cooking those for him on occasion. I make pumpkin soup with sweet potato and carrots added and he will drink some of that. But it is under sufferance.

In addition to the other stuff I am doing now for him, I find it exhausting trying to come up with ideas for food, and would be grateful for any thoughts on this .

Many thanks

Chris
-----

Hi Chris,
Thank you for your query. It sounds like you are doing a fantastic job of supporting your husband, and he is really benefitting. Although I can understand that you find it exhausting, it’s not easy to plan food for someone when you’re trying to balance all the other aspects of their well-being as well.

It is common for people with dementia to go off eating, especially as the dementia progresses. There are lots of reasons for this including cognitive impairment (meaning someone has problems recognising food and concentrating), lack of appetite, problems with recognising and communicating hunger, poor co-ordination, getting tired easier, and physical and sensory impairment (i.e. sight and /or hearing loss).

It sounds like you’re trying really hard to make sure your husband has a well-balanced diet (and it’s not easy). A well-balanced diet is important, but for people with dementia especially as it progresses it can help to focus less on what they eat and more just that they eat. This can be difficult because you want to make sure your husband is eating well, but if it’s a choice between not eating (and exhausting yourself and your husband) and eating biscuits and ice cream, the biscuits and ice cream are at least being eaten. You can always try to put some healthy food with the sweet food and see if that works.

People’s taste buds change as they get older, and also as a result of dementia. This tends to mean they like stronger, sweeter food. People with dementia can also enjoy unusual flavour combinations (such as chips and yoghurt). It is also not uncommon for people with dementia to have a less varied diet.

If you know there are foods your husband will eat and enjoys, I would focus on giving him these. You can still try to create a balanced diet, but if there is food he likes it is likely to be more appealing for him to eat these and easier for you. It’s not ideal, but the main thing is he is eating.

Does he like fruit? Sometimes chopped up fruit or berries work well for people who have a sweet tooth and it can be left somewhere visible where he can snack on it. Instead of icecream, could you try frozen yoghurt? Or just normal yoghurt?
You could also try adding honey, chutney or sweet sauces to food. Making food sweeter or stronger tasting might make it more appealing.

For encouraging his appetite/ helping him to remember to eat you could try food that smells nice when it’s being cooked. Smell is really important when it comes to eating and can trigger wanting to eat.
Small, regular snacks often work well when people have less of an appetite, as does leaving ‘finger food’ around the house. That way it can be picked up and eaten easily when the person sees it. It can also be easier to put together (e.g. a bowl of grapes, sandwiches, tomatoes etc).
Don’t be afraid to try new flavour combinations.

I hope some of this helps, I know it’s not easy but you’re doing a fantastic job. Good luck! Let me know if you have any more questions.
Gemma

 

[Mark_W]

We've also had this question from Helen:

----
My mother is now experiencing difficulty with eating and it often takes me ages just to get her to eat and drink and also to take tablets. Do you have any suggestions of what I can do to make this process easier? I am giving her a softer diet which includes soups, rice pudding, mashed banana, complan, jellies and other soft desserts.

Any advice would be appreciated.

Helen
----

 

[GemmaJ]

We've also had this question from Helen:

----
My mother is now experiencing difficulty with eating and it often takes me ages just to get her to eat and drink and also to take tablets. Do you have any suggestions of what I can do to make this process easier? I am giving her a softer diet which includes soups, rice pudding, mashed banana, complan, jellies and other soft desserts.

Any advice would be appreciated.

Helen
----

Hello Helen,

Thank you very much for sharing your situation and your question.
It is common for people as their dementia progresses to experience difficulty eating and drinking. There are lots of reasons for this including lack of appetite, problems with communicating and recognising hunger and thirst, poor co-ordination, becoming easily tired and difficulties with chewing and swallowing.
It can be difficult and stressful when eating and drinking takes a long time, both for you and for your mum. The effort needed to eat and drink can be exhausting.

It can help to offer small regular snacks, rather than a larger meal. Finger foods can help, although this is slightly harder if someone is on a softer diet, but you could try soft sandwiches with no crust (e.g. egg mayonnaise), soft fruit (e.g. banana), milkshakes (with a straw in them), yoghurt with a spoon etc.

Try not to rush your mum (I know this is easy to say) but if she feels comfortable it will make the experience much easier. Also often people with dementia want to eat, but it takes them a long time and the food is taken away before they finish. Positive encouragement and gentle reminders may be helpful.

With hot food, if it is taking someone a long time to eat it may go cold before it’s finished. This can be really off-putting and means that someone doesn’t eat, even though they want to. It can help to provide the food in small portions and then reheat other portions as you go. That way it doesn’t go cold so quickly.

It can help to look for opportunities to support your mum to eat, rather than set times. Is there a time of the day she is more alert? You could try and get the ‘main’ meal in then and provide small regular snacks throughout the rest of the day.

The environment is really important for supporting someone to eat. Making sure it is quiet and supportive can make a real difference. Letting the person choose where they want to eat can help.

Other things to consider are the foods your mum enjoys. It’s usual for older people and especially people with dementia to develop a taste for sweeter, stronger foods. If she feels the food is bland she may not want to eat it. You could try adding honey, sauces, herbs and spices to help make the food more appealing.

Has your mum been referred to a dietitian or a speech and language therapist? If not, it might help to ask for a referral. They can advise on diet and ways to support a person with dementia who is having difficulties eating. With regards to the difficulties with medication it might be worth speaking to a pharmacist or GP to see if they have any suggestions or if the medication comes in a different format e.g. liquid.

I hope some of this helps. It’s never easy and it often requires a bit of trial and error to find something that works for you and your mum. Good luck, let me know if you have any questions.

Gemma

 

[Mark_W]

This one is from Carol via email:
----
I would like to ask if it is common for dementia sufferers to become obsessed about food . My father has had to lock all the food in cupboards,have a separate fridge in the garage so that my mother cannot keep eating .

She has eaten frozen pizza,heated up a tin of tomatoes on the stove in the tin itself and has even tried eating raw mushrooms most recently as that was all she could find !
My father struggles with understanding as to why she continuously talks and obsesses about food and drink . Many thanks .

Carol
----

 

[Torontonian]

Hello Torontonian,

Thank you for your question.

I’m sorry to hear that your mum has had such a difficult time recently. It sounds like it has really taken it out of her and you.

It’s understandable to be worried and it is a difficult situation. There is no easy answer as to whether your mum will suddenly start eating and drinking again. The main thing is to keep trying to get her to eat and drink. It can help to use her favourite foods, food that is easy to swallow (e.g. soups, soft food, milkshakes etc) and try building up. Keeping her comfortable, offering sips of water and juice can help. It can also help to go for higher calorie food.

Have the hospital offered any support or advice on ways to support her?

Being in hospital is difficult at the best of times and for people with dementia it is extra hard. It is a big shock to the system and it can take a long time to readjust after being ill. If she isn’t moving much, it is likely her appetite is decreased because she’s not using at much energy – have they offered any support to get her a bit more mobile?

Also, as dementia progresses people tend to eat less and need less food and drink. Does your mum have a problem with her swallow? You said she didn’t take her pills and this may be causing problems with eating and drinking. It would be a good idea to ask for input from a Speech and Language Therapist to see if this might be contributing to the problems.
I hope some of this is helpful. Good luck for you and your mum.
Gemma

Thank you for your wonderful answer and suggestions..

At the second hospital, they had done the speech and swallow test and all is good in that department... When we offer food or drink, she says I'll eat it later.. not hungy.. I just finished eating.. these are the kind of answers we get. At the first hospital stay, she was more alert, agitated and wanted to go home and out all the time... but the second hospitalization (6 days after the first).. she is not altogether there, not realizing where she is, not agitated at all... on top of everything else she has developed rashes in her abdomen and groin area.. so this may also be causing some distress as she is very itchy.. it has been a couple of weeks with a quite a decline..

Today she is going back and hoping this will change.

By the way, the hospital discussed with us as to what next steps would be if she does not eat or drink... either a tube through the nose or a tube inside the stomach.. We have rejected both... the last resort will be that she will be hydrated through an IV... We may do the last resort after a day or two seeing if she will pick up and start eating and drinking..

Thanks again for your reply Gemma and Mark!

I shall read other daughters/sons/caregivers responses to see how the others are helping their loved ones.

All the best to everyone!

 

[GemmaJ]

This one is from Carol via email:
----
I would like to ask if it is common for dementia sufferers to become obsessed about food . My father has had to lock all the food in cupboards,have a separate fridge in the garage so that my mother cannot keep eating .

She has eaten frozen pizza,heated up a tin of tomatoes on the stove in the tin itself and has even tried eating raw mushrooms most recently as that was all she could find !
My father struggles with understanding as to why she continuously talks and obsesses about food and drink . Many thanks .

Carol
----

Hello Carol,

Thank you very much for your question and for sharing your situation.

It is not uncommon for people with dementia to obsess over food, sometimes this can be due to the type of dementia the person has. People with behavioural variant fronto-temporal dementia are particularly likely to obsess over food and over eat. But it is something that can affect people with all different types of dementia.
People may overeat and obsess over food because they can’t remember when they last ate and/or worry about where their next meal is coming from. They are also likely to constantly ask and search for food. This can be very difficult to manage, but knowing that it is the person’s dementia and not them, may help. Often this type of behaviour can reduce as the person’s dementia progresses.

There are some things which might help you and your dad to manage the situation. It can help to make sure your mum has something to do and is stimulated so that she isn’t bored or lonely. Having activity, social stimulation and a routine may help to distract her from constantly seeking out food.

Consider leaving fruit (or another healthy snack) within your mum’s sight. That way when she is hungry she can reach for this, rather than trying to prepare something or go searching for food elsewhere. It also means you know the food she is eating is healthy.
Some carers find it helps to monitor portion size, offer food only at meal times or provide regular smaller portions throughout the day and by removing certain foods from the house.

As with so much of providing care and support to a person with dementia, a lot of it is trial and error and there might not be a perfect solution. Although hopefully there will be a least bad option. We have a factsheet on eating and drinking which you might find helpful -


I hope you find some ways to manage the situation and if you have any questions please let me know.

Gemma

 

[Robertus]

Eating and drinking

I have some difficulty with my wife with eating and drinking, meals take a long time and one major problem is if we go to a restaurant to eat. She often just sits and looks at a meal, but does not eat it and we have sometimes left without her touching her meal. There is some difficulty in helping her choose what she wants but then as said she does not eat. Drinking can be a problem but is usually overcome by placing the cup in her hands. Tablet taking is a nightmare as she tends to hold the tablet in her mouth, sometimes producing it hours later. Overcome partly by grinding them down and mixing them with food or drink. Unfortunately not all of them dissolve as I would hope. Any suggestions woul be welcome

 

[Mark_W]

Dear Gemma, we have had considerable difficulty getting my wife, now in her 4th year of Alzheimer's, to eat a proper meal. We now find that (after cooking) chicken an veg, and then whisking all together in an electric mincer, that the puréed result (then spoon fed) goes down a treat. Also likewise with grilled salmon and boiled veg. Ensure also is excellent, obtained on prescription in powder form the GP, is first class, as are sweet deserts with custard and honey also to my wife's liking. However she is mainly spoon fed.

Regards cobnut54
-----

 

[GemmaJ]

Dear Gemma, we have had considerable difficulty getting my wife, now in her 4th year of Alzheimer's, to eat a proper meal. We now find that (after cooking) chicken an veg, and then whisking all together in an electric mincer, that the puréed result (then spoon fed) goes down a treat. Also likewise with grilled salmon and boiled veg. Ensure also is excellent, obtained on prescription in powder form the GP, is first class, as are sweet deserts with custard and honey also to my wife's liking. However she is mainly spoon fed.

Regards cobnut54
-----

Dear cobnut54,

Thank you for sharing your tips and it’s lovely to hear that you’ve managed to find ways to support your wife to eat.

Sadly problems with eating and drinking are common in people with dementia and it can take some creativity and trial and error to find solutions.

Have you ever had a referral to a dietitian or a speech and language therapist? They might be able to offer you some advice and support (if you need it).

Sweet desserts and adding honey tends to work well. I think due to the change is taste that people with dementia experience and a hankering towards sweet, strong flavours.
Our eating and drinking factsheet has some more tips and advice which you might find helpful.

If there is anything else I can help with please let me know.

Gemma

 

[March56]

Confusion with eating

Hello everyone!
Thank you for inviting me along today. My name is Gemma, I work in the Knowledge team here at the Alzheimer's Society. I am responsible for our information on health and well-being.
I look forward to your questions on eating and drinking

Gem

Hi Gemma
hope you can help
My mother was diagnosed two years ago with vascular dementia. At the moment she is fairly stable but has severe memory problems and is getting more and more confused. She doesnt seem to remember whether or not she has eaten and always says she isnt hungry. She has carers to get her meals (although she swears she gets her own and they do nothing!). I take her shopping weekly and she always wants sweet things: cake, biscuits, pastries etc. I dont like for her not to have a treat but she eats them all at once. I think its partly that she doesnt remember she's already had some and partly that she would rather have that than anything else. When the carers arrive she tells them she's not hungry - its because she's been eating cake, biscuits etc all day!
She also seems to forget that she has just had a meal. She will tell me she hasnt had anything to eat when there are the remains of a meal still on the table. One day I went to see her about 6pm when I got home from work, there was a dinner plate on the table, meal eaten on this occasion, but she was eating bread and jam, saying she was a bit hungry as she'd had no dinner.
Does vascular dementia stop people knowing if they are hungry or not? I can understand she forgots what she has eaten because her memory retention is very poor, but does it mean that they dont know if they are hungry or not? And is the need for sweet things part of it? I can buy cake, fruit, etc Saturday lunchtime and by Saturday night its all gone!
I have started to keep things back in my fridge and take them round to her a bit at a time.

Hope Ive posted this in the right place.