One of the most distressing phases during the span of time caring for someone with dementia can be when the person has stopped eating or drinking. As hard as it is to see, this is often a natural part of the disease. As a caregiver, it is important to understand some of the causes of this stage of the disease, what it means for the person you care for and some ideas that may help.
Eating and drinking is a complex process that involves the control centre in the brain and strong muscles in the neck and throat. As dementia progresses, it affects these areas, which then expresses as symptoms the carer sees such as coughing or choking, clearing the throat, grimacing when swallowing, exaggerated movements of the mouth or tongue, refusal to swallow or holding food in the mouth, or spitting food out.
In the end stages of dementia, when this phase typically develops, the need for food and fluid intake gradually declines over time and the body has already started to adjust. Activity has typically also decreased, so the person does not need to take in as many calories. Understanding this and observing activity levels can help the caregiver see why not as much food or drink is needed. A medical professional can make observations and reassure the carer that dehydration is not a factor or take steps to help.
ANH refers to any method used to provide food and fluids to anyone who is unable to swallow or take in food through the mouth. Usually, ANH is administered through a feeding tube that passes through the nose into the stomach, but may also be done through a tube that goes directly into the stomach wall. Fluid is also given intravenously or inserted under the skin subcutaneously. Sometimes ANH is difficult for the person with dementia. Forced feeding at this phase is a point for a debate in the process of care and is not recommended.
Health professionals and caregivers, who understand that this is a normal part of the disease process may decide against ANH. Inserting tubes is distressing to the person with the disease who may tug or pull on the tubes, sometimes pulling them out. Insertion sites can be sore or become infected. The person living with dementia may not understand why they have to be in the hospital for the procedures and could be distressed by unfamiliar surroundings.
Recent studies, in fact, indicate that giving food and fluids by ANH may actually do more harm than good. Giving food through a tube does not stop coughing or choking. Sometimes fluids may get into the lungs, causing pneumonia. Being confined to bed reduces mobility, furthering weakness and causing the development of dangerous infections such as bed sores. The latest studies show that one-third of people with advanced dementia who have a feeding tube inserted die within one month.
As a caregiver, the most important concern is that the person with dementia is not suffering. Once we understand that this is a normal part of the disease, it makes it easier to see why the person does not need as much to eat or drink. In most cases, they will not show any sign of being hungry or thirsty, but if they do show interest, have an assessment done and get recommendations on what type of alternatives you can give to keep them comfortable.
If the person wants to eat or drink but struggles with swallowing, it is important to have a healthcare professional assesses their ability to swallow, such as a Speech Therapist or General Practitioner. A balanced diet at this stage is not so important. Rather, offer the person foods and drinks that they appear to be able to swallow and appear to be desirable foods. If they want only sweet things or cold things, accommodate them.
A clinical study completed in Korea compared the swallowing problems of people with late stage Alzheimer’s with those having vascular dementia, and found that those with Alzheimer’s had more trouble swallowing fluids, while those with vascular dementia struggled more with swallowing food. Also important is the finding that those with frontotemporal dementia have links to behaviour which affects the food relationship. Some individuals may eat compulsively, eat only sweets or will eat very quickly, shoving food into their mouths until they choke. Knowing these facts are important in discussions regarding how to proceed with caring for these different aspects of the diseases.
First, rule out any physical problems such as mouth sores, a toothache, ill-fitting dentures, infections or medications that could be affecting appetite. Then, try changing the food or drinks offered. Give soft but flavourful food that requires minimal chewing, and a variety of temperatures with each meal. Avoid hard foods, foods with stringy textures and mixed foods like cereal. Use smaller utensils and specially designed drinking cups. Have the person sit upright in a comfortable position. Allow extra time as it can take some extra effort, but will be worth it as you see them enjoy a meal.
Disclaimer: Please be aware the above article is merely information – not advice. If you need medical advice, please consult your doctor or another healthcare professional.
Article originally published June 23, 2017.
5
4
4.5
Thank you for this information. Even though I didn’t know all of this, I did. Doesn’t make it any easier,but it lets me know I am doing the right thing. She does like sweets. I try to leave fruit cut up for her, and leave it where she walks by and see it. Thanks again for the good information.
This article is very good and helpful. I have been caring for my 90 year Dad and knew some of these facts. When my siblings got involved, there were many questions answered by this article.
My husband has been sleeping to excess and would eat only candy if he could. After reading this article I feel ok with him doing this as a sign of an increase of his problem and not feel guilty for his lack of eating normal food. He is 94. Caregiving is difficult when the family does not offer any help.
My mother is 81 years old and she’s been bedridden with bed sores and also she’s not drinking and eating anything and it’s after 5 days now.
R U ok?
My dad just passed away not even 2 wks ago.
Dad was NRR suffering ebd-stage dementia & a list of co-morbidities. He stopped walking end of April and couldn’t weight bear. Totally incontinent.
He then went a Palliative Unit for 4months.
He stopped eating & drinking 5 days.before he passed..
Their needs for food n fluid decrease as dementia progresses. Especially when immobile.
He had dysphagia.
He then slipped into a coma. He hyperventilated and was tachycardia for over 24hrs then slipped into a coma. My heart is truly broken. They didn’t give dad an IV for hydration & oxygen therapy. I asked them to give me 02 via nasal.prongs for comfort measures. But they told me giving oxygen would prolong his life maybe by a day so I agreed not thinking.
I now wish he went comfortably.
I am feeling guilty and totally unwell from stress.
If Ur loved one is not Palliative or NFR you then have a right to ask for IV hydration and NG feeds.
Best wishes,
Thanks for this article.. I feel ok now… after worrying of my elderly care with dementia.
Thank you so much for this important information. My Mother has Dementia, approaching 89, currently in a nursing home to find out she no longer can wear her dentures and was switched to pureed food and gel fluids. I was shocked, then explained by the caregivers, as to why, but decided to do my research to have a better understanding. Your information truly put me at ease.
My 93 year old mother stopped using her partial denture because she was afraid she would “swollow” it. She has lost 75 pounds since February, 2021. My heart weeps for her. She smiles at me and hugs me but doesn’t know who I am. I feel for all of you because I know exactly how you feel. I am so angry that no family member helps me and my dad is also a “do not Resuscitate” patient.
I sympathize with all of you. Both my parents have passed (dad at 78, mom at 81) and I feel guilty because I’m certain I could have done more for them to the point that they would still be alive today. I thought my father would certainly live to be 100. He never seemed old to me.
Reading Hellocare articles are so comforting and so informative. Your information is relevant to many aspects in Aged Care. Thank you.
My dad is also suffering from Dementia and he suffered TB meningitis 6 months back that spearheaded his illness to a deadly state. He now is bedridden with very less movements, with no ability to speak or eat. He is just 71. Since last 1 month , his apetite is also reducing and he has started holding food in mouth.
After reading this informative post , i have started understanding whats he is going through and whats the next phase.
I would say to all that caregiving is hard but its the minimum we can do for our lovedones and we should support them in those moments when they totally depend on us. Maybe thats how we can payback them for being with us all the time we needed them. Their return gift.
An excellent article. How can I receive a copy via email?
My mother had dementia I am pretty sure I am in the early stages of dementia, is there anything I can do to slow it down?
Thank you for this information.
My father-in-law has mixed dementia and we have seen a rapid decline in his health over the past 2 weeks. His food and drink intake reduced dramatically to just a few small bites and he was still able to swallow without any coughing or reflux. Over the past few days, he has stopped eating completely and only takes the occasional sip of juice. The nursing staff have tried to give him supplements but he just stores it in his mouth without swallowing. He is also almost completely unconscious with minimal reaction to familiar voices.
As he is a Catholic, we arranged for a priest to visit him today and said some prayers for him. We hope he found comfort in this and also hope that we did not request for this too soon. He is extremely frail so we want him to rest and be comfortable until the time comes when he passes and all his happy memories that have been lost over the past 2 years will be returned to him in heaven.
My prayers go out to anyone who has loved ones with dementia. It is the cruelest of diseases that no one should suffer with, especially when they are such a loving, gentle and caring person as my father-in-law has always been x
Sadly my father-in-law passed away on 3rd April 2023. He will be missed so much but his spirit lives on in his daughter and grandson x