Dementia brings with it a wide variety of symptoms and associated behaviors. One of the most distressing and difficult to deal with can be the tendency to stop eating and drink and avoid food and drink.
This aspect of advanced dementia is extremely troubling from a caregiver’s perspective, and can be dangerous for the ongoing health of the patient.
In this article we are going to explore the reasons why people with dementia stop eating and drinking, what the associated health problems that result from this behavior can be, and what you can do to help a loved one exhibiting these symptoms.
What Causes It?
There are a number of reasons why people with dementia stop eating and drinking, some physical, some mental.
For many people, advanced dementia brings with it a number of physical ailments that make eating and drinking difficult. For some, changes in the parts of the brain that control swallowing mean that they have trouble getting food down. For others, dysphagia or muscle weakness make swallowing difficult as well. Mouth sores, which are a common problem for patients with dementia, can also make it unpleasant or even painful to eat and drink.
On the other side, changes in sensory and sensation awareness can make people with dementia stop eating and drinking; either because they no longer enjoy the sensation, or because things taste differently or unpleasant. They can also lose their sense of when they are hungry or thirsty, meaning they find it hard to remember to eat or drink. Depression, a common symptom of dementia, can also cause patients with dementia to lose interest in eating and drinking.
What Health Problems Can Occur from Lack of Nutrients and Water?
Dehydration can be a severe problem for people with late stage dementia. Without enough water or other fluids, their body will not be able to function properly - they will experience weakness, confusion, an elevated heart rate, and even potential organ failure.
By not eating enough to sustain themselves, patients with dementia can experience significant weight loss. This can have an impact on the immune system, and make it more difficult for the patient to fight other infections and illnesses that they might experience. Weight loss can also make it more likely for them to suffer a fall, and make it more complicated for them to live independently.
What Ways Can You Help Someone with Eating and Feeding Issues in Late-Stage Dementia?
Loss of appetite is a natural part of growing older, and for many with dementia, a reduction in eating and drinking is not a problem. But it is important to ensure that your loved one is still receiving adequate nutrients and fluids, as mentioned above.
People with dementia should be encouraged and helped to continue eating and drinking normally for as long as possible, even if the amounts are significantly reduced. This might mean something as simple as changing their crockery, so the food is easier to see, or helping them by putting drinks directly into their hands. It is also worth paying attention to their tastes, as these can change as they move into advanced dementia.
If they become unable to feed themselves, there are a number of options, although they are usually methods of last resort.
Open feeding or hydration with a tube
One option is to insert a tube into the stomach of the patient, either through the nose or directly through the stomach wall. An intravenous drip can also be an option to deal with dehydration issues. However both these methods come with significant downsides, and they tend not to be recommended.
Is artificial nutrition and hydration (ANH) a good option?
As mentioned above, artificial nutrition and hydration (ANH) is the catch-all term for any form of feeding or hydration that does not go through the mouth. This can be tubes directly to the stomach, intravenous drips, or several other methods.
ANH does take care of the problem of a patient with dementia refusing or being unable to eat or drink, in that it provides vital fluids and nutrition to keep them alive. However, it often does far more harm than good.
ANH doesn’t prevent choking, coughing, or water and food going down ‘the wrong way’ into a patient’s windpipe. It can cause infections, as patients with dementia will often attempt to remove tubes or drips themselves, causing damage. It does not prevent weight loss, and can significantly reduce a loved one’s independence and quality of life.
Most people decide against ANH and most experts will advise against it. For example, the General Medical Council in the UK recommends that patients with end-stage dementia not be fed through a tube, as it requires hospital admission and can be risky in other ways.
Will my loved one die from starvation or dehydration?
As loved ones with dementia age, and the disease progresses, their food and drink requirements are significantly reduced. Their activity level will have decreased drastically, and as they are using less energy they will require less sustenance and hydration.
During end-stage dementia, reduced food and drink intake merely becomes part of the ‘natural’ process of end of life. Your loved one is not dying from starvation or dehydration, their body is merely adjusting to the situation it finds itself in.
The most important thing to do at this stage is to educate yourself to understand the stages of dementia, and support your loved ones as much as possible.
Is my loved one with late-stage dementia suffering?
The most common and important preoccupation for caregivers is that their parents or relatives with dementia are not suffering. This is why self-education is so important. Understanding that a loss of appetite is a normal, natural part of dementia, and that people with dementia tend to require far less food and drink to function, can help family caregivers process and deal with these changes.
In the vast majority of cases, people with dementia who eat and drink less will not be in pain or suffering. It is always worth ascertaining whether the loss of appetite is normal, or caused by some external issue, and you may want to check with a physician to rule out other issues. In general, however, the best thing to do is ensure that your loved one is comfortable, be supportive and affectionate, and make sure that they have access to the foods that they do still want to eat.
Consider hiring help
Caring for loved ones with late-stage or end-stage dementia can be challenging and traumatic, and it is often a sensible idea to hire help. Senior Helpers provides a wide range of in-home care services, as well as end-of-life care. Senior Helpers caregivers will work closely with you to help keep your loved one as comfortable as possible as they make this transition, and support you and your family so that you can focus on spending quality time with your loved one during their final days. Discover more information about the services we provide on our website.
When to get help
While loss of appetite in late-stage dementia is normal, there are cases where urgent help is needed, and it is important to watch out for the warning signs. Call 911 if you see any of the following signs or symptoms:
- Dark yellow/brown pee
- Sunken in eyes
- Fast heart rate
- Erratic breathing
- A more sudden change that doesn’t seem to be due to the dementia
Changes in the behavior of a loved one with dementia can be extremely troubling, and a loss of appetite is one of the most concerning aspects of the disease for many caregivers. Helping and supporting a loved one during end-stage dementia can be tremendously challenging, which is why services like Senior Helpers are so important.
To find out more about what we can offer you and your loved ones, get in touch today, and our customer service team will be delighted to help with whatever queries you have.