Eating And Drinking At The End Of Life
People with dementia can develop problems with eating, drinking and their ability to swallow at any stage of their illness, although it is most common to see this at the more advanced stages. In this section you’ll be able to explore why this happens and how you can help.
When a person with advanced dementia takes in only a very limited amount of food and fluids or can no longer swallow safely, it can be an extremely difficult and emotional time for family and care staff as they try to work out how to best respond and care for the person with dementia. It is important to try and maintain eating and drinking, even in very small amounts, for comfort and enjoyment. Speech and language therapists can help and advise about swallowing changes at this time.
What happens when Pete can no longer swallow? Will he just starve to death? I dont want him suffering.
A woman speaking about her husband who has dementia.
Rule Out Any Physical Problems
The first thing you should do when a patient stops eating is to rule out any physical problems like mouth sores, toothaches, ill-fitting dentures, infections or medications that may be affecting the patients appetite. If they have stopped eating because of any physical problems, deal with the problem and try change the foods and drinks offered. Give flavored food that requires minimal to zero chewing. Avoid foods with stringy and hard textures or any mixed foods like cereals.
Why Do People With Dementia Have Trouble Swallowing Food
Refusing to eat, closing the mouth, or spitting out everything thats given to them on a spoon. Its extremely common in the most advanced stages of Alzheimers disease for this extremely complex phenomenon to appear during feeding. This is when the family first comes into contact with the neurological condition of dysphagia.
You might say well, I sometimes choke during meals when drinking or eating certain things. This is true, its happened to all of us at some time or another. In fact, these uncomfortable experiences are due to the fact that, although it may not seem like it, eating and drinking are complex functions carried out by the brain. Therefore, many of them require conscious control.
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How Physical And Sensory Difficulties Can Affect Eating
People with dementia can have physical and sensory difficulties that can affect eating and drinking. This page has information about common problems and tips for managing them.
Some physical and sensory difficulties will be symptoms of dementia. But people with dementia can also have problems such as constipation and sight loss.
Problems with co-ordination
People with dementia may have difficulty picking up items such as cutlery or a glass. They may also have trouble putting food into their mouth. A person with dementia may not open their mouth as food approaches and may need reminding to do so. Some people may also have other conditions that affect their co-ordination, such as Parkinsons disease. This could lead them to avoid mealtimes because they are embarrassed by their difficulties or want to avoid struggling.
Encouraging the person to eat for example, by trying finger foods may help someone who has difficulties with co-ordination. You may find these other ideas helpful:
- If the person is struggling with using a knife and fork, cut up food into smaller pieces so it can be eaten more easily, perhaps with a spoon.
- If the person seems to have difficulty using cutlery, you may need to prompt them and guide their hand to their mouth to remind them of the process involved.
- If you are able to, speak to an occupational therapist about aids and equipment that can help, such as specially adapted cutlery, lipped plates or non-spill cups.
Chewing and swallowing
Constipation
Eating And Drinking Difficulties In Dementia
- Forgetting to put the food into their mouth, forgetting to chew or swallow it and talking with mouth full.
- May repeatedly chew and not swallow the food.
- Leave most of their meals.
- Physical difficulties chewing certain foods.
- Overfilling their mouth and eating quickly.
- Poor coordination of swallow food may go down the wrong way.
- Worry that they have not paid for their food.
- Believe that the food is poisoned.
- Not recognising the food as something edible.
- Getting tired and giving up eating.
- Spitting out lumps.
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How To Find Help For Caregiving
As the person moves through the stages of Alzheimer’s, he or she will need more care. You may not be able to meet all his or her needs at home anymore. It’s important to know your limits, take care of yourself, and to seek help whenever you need it. Learn more about getting help with Alzheimer’s caregiving and finding ways to care for yourself. If caring for the person has become too much for you, you can also learn more about finding long-term care for a person with Alzheimer’s.
Problems In The Mouth
A person with dementia may have a sore mouth or gums. Their teeth may be sensitive or painful. Dentures or dental plates may no longer fit correctly, making it difficult and painful to chew, in which case support the person to see a dentist as soon as possible. Dental treatment may be necessary or dentures may need to be adjusted or remade if the fit is poor.
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Signs And Symptoms Of Swallowing Difficulties
Knowing what to look for is imperative since dysphagia is common in seniors with Alzheimers disease and other types of dementia. Patients may not be capable of communicating discomfort or difficulties to their caregivers.
There are recognizable, yet often subtle, signs and symptoms that indicate dysphagia. When these signs occur, it is important for caregivers to address them as soon as possible, Ryba urges. Treatment and management will depend on an official assessment called a swallowing study, which is commonly performed by a speech-language pathologist .
Swallowing And Cognitive Aspects
The worst cognitive performance in screening tests of memory, language, praxis, orientation, attention, and executive functions was related to several aspects of swallowing, suggesting that there is a complex and reciprocal relationship between impairment of cognitive performance and swallowing disorders in dementia.
Studies have described that the cognitive deficits found in AD may lead to the interruption of the necessary and preparatory actions for swallowing11. Easterling CS, Robbins E. Dementia and dysphagia. Geriatr Nurs. 2008 29:275-85.,66. Horner J, Alberts MJ, Dawson DV, Cook GM. Swallowing in Alzheimer’s disease. Alzheimer Dis Assoc Disord. 1994 8:177-95.. Differently, other authors did not find any association between cognitive alteration and signs suggestive of dysphagia when evaluating institutionalized elderly women using the DREP3232. Guerin O, Andrieu S, Schneider SM, Milano M, Boulahahssass R, Brocher P. Different models of weight loss in Alzheimer disease: a prospective study of 395 patients. Am J Clin Nutr. 2005 82:435-41..
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Chewing And Swallowing Problems In Dementia
People with dementia may experience difficulties chewing and swallowing as their dementia progresses. The person may become reluctant to eat if they are in pain or are frightened that they will choke on the food they are given. In addition, the person may struggle to find the words to tell you that they are having difficulties. Over time the person may be reluctant to eat and drink and, as a result, the person will lose weight.
A person with dementia may have a sore mouth or gums. Their teeth may be sensitive or painful.
You may be interested to read the feature, Eating and drinking at the end of life, in the section on End of life care, which also looks in particular at problems with swallowing.
How To Connect With The Person
Communicating with a person with late-stage Alzheimers disease can take effort and patience. Though that persons ability to respond may be limited, it is important to continue to interact:
- Continue to visit with the person even if responses are limited.
- Try to speak calmly and slowly be aware of the tone and volume of your voice.
- Consider sharing familiar stories with the person.
- Make eye contact, say the persons name and smile.
- Use other methods of communication besides speaking, such as gentle touching or massage.
- Have the person listen to music or calming nature sounds.
Learn more about how to communicate with a person who has Alzheimer’s disease.
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During Eating And Drinking
- Staying with the person throughout the meal and assist by gradually supporting them, with the ultimate aim to encourage complete independence e.g. consider starting the person off then phasing out assistance.
- Try offering an empty cup/spoon to prompt a swallow.
- Prompt or model eating behaviours as well as giving verbal prompts .
- Talk about the smell/taste of the food use a gentle tone of voice.
- Try not to rush them.
Before Eating And Drinking
- Respect their food and drink preferences, may need assistance with choosing their meals.
- If you are concerned about their nutrition you can ask the nurse about what extra snacks are available and if a dietitian is required.
- Sit at their eye level if they require assistance with feeding. Try experimenting with strong/different tasting foods explore what they really enjoy.
- You may need to offer little amounts of food, often .
- Provide high calorie foods.
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The Connection Between Dysphagia And Dementia
In Alzheimers and dementia patients, some degree of difficulty swallowing will occur during the disease trajectory, and it is a common indicator of disease progression. In this case, the cause is a loss of gag reflex and/or decrease in level of consciousness, which requires increased care and supervision, explains Ryba.
Dementia progresses differently in each person, so it can be difficult to know what to expect and when. However, dysphagia often presents in late-stage dementia patients who tend to have difficulty communicating and may even be nonverbal. For this reason, dementia caregivers should watch carefully for any signs of swallowing issues. Aspiration pneumonia is one of the most common causes of death in Alzheimers patients, Ryba laments.
If swallowing issues present in the early or middle stages of dementia, a family member may misconstrue the subtle signs and assume that their loved one is acting out or does not enjoy the food they are being served. However, perseverance and encouragement cant solve this dilemma. Undiagnosed and untreated dysphagia could jeopardize a dementia patients well-being.
What To Do About Body Jerking
Sudden twitching or jerking, known as myoclonus, is another condition that sometimes happens with Alzheimer’s. The person’s arms, legs, or whole body may jerk. This can look like a seizure, but the person doesn’t pass out. Tell the doctor right away if you see these signs. The doctor may prescribe one or more medicines to help reduce symptoms.
Read about this topic in Spanish. Lea sobre este tema en español.
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The Frailty Phenotype And Dysphagia
Frailty is the condition when the person is stressed she has diminished ability to carry out important practiced activities of daily living . It should be distinguished from disability. Fried et al developed a physical phenotype of frailty consisting of weight loss, exhaustion, weakness , slow walking speed and low physical activity. This physical phenotype is highly predictive of falls, declining mobility and activities of daily living, hospitalizations and death . The FRAIL is a rapid screen for frailty that has been validated as a predictor of poor outcomes in over 25 studies . It consists of fatigue, resistance , aerobic , illnesses and loss of weight . Guidelines for the management of frailty have been published . They recommend identification of frailty with a validated tool and, in persons who are frail, a progressive resistance exercise program and management of polypharmacy.
Frailty is associated with an increased prevalence of dysphagia . The major components of frailty leading to increased dysphagia are sarcopenia, functional impairment, and drugs affecting swallowing . Frailty is often associated with increased inflammation .
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Where To Find Help And Support
Living with a dementia can bring different changes to a persons life that are individual to them. As a carer, there are many ways you can help support them in their everyday life and activities.
If you have any concerns about the person you are caring for, you can speak to the persons GP for advice.
They can refer you to a relevant health professional including:
- dietitian
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Other Options For Seniors Who Cant Swallow Pills Anymore
Nearly 97 percent of people who tried the lean-forward technique for capsules said the strategy was helpful, while 88.5 percent of people who used the pop-bottle technique with tablets said the same. These two methods were highly effective for many people, but there is no one-size-fits-all approach to making medications easier to take, especially for older adults with swallowing issues and those who struggle to understand and follow instructions.
Fortunately, there are some alternatives that seniors and their caregivers can try. For example, some pills can be cut into smaller, more manageable pieces or crushed and added to food or drinks. Soft yet thick foods like yogurt, pudding and apple sauce are commonly used to facilitate medication administration.
Certain medications can even be prescribed in a liquid form. Drug compounding services are an important resource for seniors who need their prescriptions specially prepared in liquid dosages. However, liquid medicines arent necessarily a cure-all. Many older adults with moderate to severe dysphagia must use food and beverage thickeners to eat and drink safely and prevent aspiration. In some cases, taking medications with these thickeners can affect how they are absorbed by the body.
Early Eating Problems For People With Dementia
Youre probably extremely familiar with certain of the early signs of dementia. For example, forgetfulness, spatial disorientation, and the progressive loss of expression and understanding of language. However, sometimes, the processes associated with food tend to go unnoticed. Theyre as follows:
- Faced with the sensation of hunger or thirst, the person might react emotionally and not behaviorally. In fact, instead of eating or drinking, they get carried away by their bad mood or irritability.
- Many lose fine motor skills and manual dexterity in general. This results in problems cooking for themselves and they also might have trouble cutting their food. Furthermore, they tend to put too large pieces in their mouth, which increases the risk of choking.
- Likewise, swallowing problems appear in the intermediate stages of Alzheimers dementia. Even if the person tries to swallow, sometimes they cant. In fact, the automatic part of swallowing food or water becomes restricted.
- At other times, the person is unable to form a bolus because they dont chew. In other words, they keep the portion of food in their mouth without doing anything.
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Contact Sonas For Home Care Services In Florida
Caring for someone with Alzheimers disease can be overwhelming at times, and the team at Sonas Home Health Care is here to help. We refer loving and knowledgeable caregivers to provide expert Alzheimers care from respite services to around-the-clock care. Give us a call at or visit us online to Request a Free In-Home Assessment.
If you or an aging loved-one are considering hiring home health care services in Florida, contact the caring staff at Sonas Home Health Care today. .
Caring For Someone With Dysphagia
Desai wrote that caregivers can help prevent complications related to dysphagia by identifying its early symptoms and consulting with a physician who can refer them to a speech-language pathologist to assess and treat dysphagia.
Following a clinical swallow examination by a speech-language pathologist, the pathologist may conduct further testing to determine the cause of a patients dysphagia and provide treatment.
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What To Do If Dementia Patients Stop Eating
People with dementia may experience difficulty eating, swallowing, and drinking as the disease progresses. Although this behavior can occur at any stage of the disease, it tends to be most common in the late stages.
In late-stage dementia, the difficulty in swallowing limits the intake of food and drinks. This time can be difficult and emotional for the family or the caregivers of the patients as they have to figure out how to maintain the eating and drinking of their patients or loved ones.
Struggling To Swallow And End
In many instances, such as temporary difficulties that result from a stroke or prolonged intubation, working with an SLP who specializes in dysphagia can maintain or restore a persons ability to eat and drink safely. Each patient is different, which is why a professional assessment is crucial for devising customized care and nutrition plans.
In other cases where dysphagia is related to a progressive neurodegenerative disease like Parkinsons or Alzheimers, swallowing exercises, thickening agents and eating techniques recommended by speech-language pathologists will eventually lose their effectiveness. Sadly, as these conditions progress, so does the severity of swallowing difficulties. Put simply, seniors with late-stage dementia forget how to swallow, lose weight and become increasingly frail.
Once dysphagia becomes so severe that swallowing is no longer possible, the disease may have progressed to the point of considering an evaluation for hospice care, Ryba advises. For example, weight loss and the inability to feed oneself and swallow are fundamental hospice criteria. An evaluation by a hospice professional would be appropriate to determine if end-of-life care is appropriate.
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Ways To Make Eating Easier
1. Offer soft food that requires minimal chewing.
2. Use smaller utensils and specially designed cups which allow drinking whilst keeping the chin down .
3. Choose strong flavours rather than bland ones, as these can stimulate the brain to swallow, and also try to offer a variety of hot and cold food in one meal.
4. If the person youre caring for is extremely slow to swallow, try putting an empty spoon to their mouth, as if offering more food. This can act as a reminder to swallow.
5. Make sure theyre sitting upright and are as calm and comfortable as possible before you begin.
6. Consider thickening fluids to make the food easier to control, you can get advice about how to use them from your GP or a dietician.
7. Avoid small hard textures such as sweetcorn, peanuts and peas, and stringy textures such as cabbage, or bacon.
8. Cook food longer, mash it with a fork, or puree it in a blender or liquidiser.
9. Try not to offer mixed textures of liquids and solids, such as milk and cereal or minestrone soup as they can make choking more likely.
10. Be patient. Accept that meal times are probably going to take much longer than they used to, but try to prioritise them. If you can help the person you care for to eat more than they normally would, its probably worth the extra time and effort.
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