Dementia & Alzheimers

How to be a Care Giver for those in Need

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This section describes physical symptoms that occur in end stage dementia. The person with dementia with these symptoms is progressing towards the terminal phase, when death will occur. The problems described in this section usually require the person responsible (lawful substitute decision- maker) to make decisions about treatments, including whether or not to use certain life- prolonging medical treatments. These treatments may not always add to the comfort or quality of life of the person with dementia.

If you are a person responsible for a person with end stage dementia it is helpful to know that you can ask as many questions as you need, so you understand the benefits and risks of any treatments being considered. Recent research has shown that people dying from dementia receive less aggressive medical care, and more comfort care, if their person responsible understands the course of the dementia and likely scenarios that may happen in the final months of life.

As the brain fails and the person’s bodily systems alter, medical issues multiply and become more difficult for doctors to treat. Some of the more common physical symptoms and medical complications that increase the chance of death include eating and swallowing problems, weight loss, and repeated fevers and infections.

Other problems may include pain, shortness of breath, and pressure ulcers. Unexpected events may also occur that require treatment. Eating and drinking problems Difficulties with eating and drinking, refusing to eat, swallowing, and chewing problems are common in end stage dementia, so common that about 86% (8 or 9 people out of 10) with end stage dementia have an eating problem. Earlier in the course of the illness, the person with dementia needs help to eat and drink, because confusion and lack of coordination of the muscles stops the person getting enough food and fluids. Eventually other problems with eating begin. The food is held in the mouth for a long time without swallowing, or the food is chewed and chewed, as if the person has forgotten how to swallow. Towards the end of life, a person with dementia may let the food fall from the mouth without any attempt to eat it, despite encouragement from carers. Often when a person appears totally uninterested in food it is a sign that they are nearing the very last weeks and days of life. Watching a loved one refuse to eat can be distressing for family members and carers. If this happens to the person you know with dementia then talk it over with the carers and your family so that you get some support for yourself.
A person with end-stage dementia usually eats and drinks a lot less than normal. As a result he or she may lose weight and become dry (dehydrated). The dryness in turn can cause other problems, such as constipation.

Swallowing problems
Swallowing problems are very common, and are one of the main signs of end stage dementia. A person with dementia who develops swallowing problems may have a very limited life span of only a few months, although this is not true in every case. Signs of swallowing problems include appearing to choke when eating, and/or coughing after eating. The medical term for swallowing problems is dysphagia. A Speech Therapist can assess dysphagia and provide detailed information to allow carers to feed the person correctly. If dysphagia is not managed, food and fluids may go down the wrong passage and enter the lungs. This can cause a condition called aspiration pneumonia, which is a type of lung infection caused by the food or fluid. Antibiotics and possibly admission to hospital are needed to treat aspiration pneumonia. A person with swallowing problems can usually continue to eat, with the food mashed or pureed, and fluids thickened. Sometimes however, no matter how carefully the right-textured food and fluids are given, repeated bouts of aspiration pneumonia occur. One of these bouts will be fatal to the person. The options may be to continue feeding, knowing the high risk of death from pneumonia, or to stop feeding and maintain the person’s comfort until natural dying occurs. The comfort of the person with dementia is the most important factor in this difficult situation.

When a person has swallowing problems from dementia it is sometimes suggested that a feeding tube be inserted into the stomach to give the person nourishment through the tube. Recent expert opinion is that feeding tubes are not advisable for people with dementia. There is no evidence that they prolong life, prevent aspiration pneumonia, or improve the quality of life of the person with end stage dementia, which are the usual reasons for inserting them.

The decision about whether or not to use a feeding tube is very complex, and needs to be considered carefully for any person with dementia. Sometimes if tube feeding is started, a decision needs to be made when the person is dying to stop the feeds, because otherwise death will be more uncomfortable. The decision to stop feeding is often more emotional and difficult than the decision to start the feeds. Careful spoon feeding, with food and fluids of the right texture, allows a person living with dementia to enjoy the smell and taste of the food for as long as they are willing and able to eat.

Weight loss
Weight loss is commonly associated with the final stages of dementia. Earlier in the course of the illness weight is lost because the person is too restless to eat, or does not recognise the food and doesn’t eat enough. In the end stage of dementia, weight is lost despite the person being given adequate amounts of food and fluids. This is due to complex changes in the body due to advanced disease. This kind of weight loss also occurs when a person has advanced heart, lung or liver disease, or advanced cancer. Weight loss due to advanced illness, including dementia, cannot be reversed, even if food supplements such as fortified drinks are offered.

Infections and fevers
A person with dementia who is eating and drinking less and unable to walk has a weakened immune system. The likelihood of an infection increases. Repeated infections are one of the signs of end stage dementia. Developing a fever, a change in behaviour or an increase in confusion due to delirium are signs that a problem has emerged. Common sites of infection are the bladder and /or kidneys (urinary tract infection) or lungs (pneumonia). The chance of the person with end stage dementia having pneumonia is very high. About 40% (4 in 10) people with end stage dementia can be expected to have at least one episode of pneumonia.

Infections of the lungs or urinary tract can make the person extremely ill (septic). These infections are often the cause of death in end stage dementia. Treatment of an infection will depend on the goal of care. If the goal of care is to prolong life, then strong antibiotics, possibly provided intravenously (IV) via a drip line into a vein, or as an injection into the muscle (intramuscular or IM injection), will be given. Prolonging life by giving antibiotics is not always possible. A time comes when the burdens of giving IV or IM injections, which include possible transfer to hospital for the antibiotics; pain due to the injections; and an upset stomach and loose bowel motions caused by the antibiotics, outweigh any benefits from the antibiotics. The alternative choice is to provide palliative (comfort) care at this time. Antibiotics may be given by mouth if there is a chance they will increase the comfort of the individual with the infection. Other treatments to maintain comfort include pain medication (analgesics) and medications to dry up secretions. Extra oxygen may be used if required. Care can usually be given in the residental care facility.

Pain
As many as 80% of older people living in residential care facilities are known to have pain from conditions like arthritis. Most of them, even those without dementia, don’t say anything because they think that feeling pain is normal.
It is every person’s right to have his or her pain assessed and managed so they are comfortable. If the person you know with dementia has a painful condition like arthritis, always tell the GP so any pain treatments can be reviewed.

In the last few months of life, distressing pain affects about 40% (4 in 10) of people with end stage dementia. Pain is difficult to assess when the person with dementia cannot respond to questions. As discussed earlier, signs of distress include a change in the person’s behaviour (an increase or decrease in an existing behaviour, or a new behaviour starting). Everyone who knows the person with dementia well can have a role in observing for possible pain, and making sure he or she is kept comfortable.

Management of pain
Mild pain can be managed using simple measures such as changing the position of the person in the chair or bed, massaging, distracting the person by playing music, or taking them in a wheelchair outside, as well as giving medications. The individual’s doctor will prescribe the safest and most beneficial medication if pain is present. If pain persists, strong medications and treatments will be discussed and started if needed.

Shortness of breath
Shortness of breath (dyspnoea) is a distressing symptom that may be present for some of the time in almost half of people with end stage dementia. Treatment should be discussed with the doctor so plans are made to manage the breathlessness if it is distressing. Extra oxygen may be given for a period to help keep the person comfortable.

Pressure ulcers
Pressure ulcers are also known as bed sores or decubitus ulcers. They are mainly due to lying or sitting in the one position for a long time so that pressure on one spot cuts off the blood flow to that area. The skin in the area starts to die, and ulcers can develop, which can quickly enlarge. Most commonly affected sites are the bony areas on the body, particularly the skin over the tail bone (coccyx), hip bones, heels and elbows. Pressure ulcers can be difficult to treat and have severe complications, including infections and abscesses. To prevent pressure ulcers, the person needs to be moved regularly so that they are lying or sitting in a new position to protect the skin in the risk areas. Often aids like air mattresses are used to distribute the body pressure evenly and keep the blood flowing to the areas where pressure ulcers might start.

Unexpected events
Unexpected medical events can occur to any person, including a person with severe or end stage dementia. Some of these events may include heart attacks, strokes, falls that cause injury, seizures (fits) and problems associated with other medical conditions the person has. This group of problems can lessen the quality of life of the person with dementia, without actually being the cause of death.
The unexpected events may require admission to hospital for investigation (often quite invasive) to find out their cause and provide treatment. How unexpected events are managed will depend on the goal of care for the person with dementia.