During the later stages of dementia most people will become increasingly frail due to progress of the illness. It may help if families prepare themselves by thinking through some of the questions that may arise in the final stages.
Most people in the later stages of dementia are looked after in residential homes. If you want to care for your relative at home you will need to find out from your GP and social services whether adequate community nursing will be available.
This can be a particularly distressing time for relatives as someone with severe dementia may fail to recognise even close family members. They may also fail to recognise familiar objects or be unable to find their way around their own home.
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Many people with dementia gradually lose their ability to walk, wash, dress and feed themselves. You may first notice that they shuffle or walk unsteadily. They may seem slow or clumsy. They may be more likely to bump into things or fall. A stroke, arthritis or the effects of a fall may also affect their mobility. An occupational therapist can advise on aids and adaptations that may make their surroundings safer.
Eventually the person with dementia may become confined to bed or a chair. Seek advice on how to help make them more comfortable and how to help them move without damaging yourself or them.
If someone remains in the same position for too long it is possible that they will develop pressure sores. It is therefore important that they shift their position frequently. As people become less mobile they become more vulnerable to infections and are at greater risk of developing a pulmonary embolism (a clot on the lung). Helping them to walk or do arm or leg movements in a chair if they don't find this distressing may help. A physiotherapist can advise on safe forms of exercise.
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Most people with dementia lose a considerable amount of weight in the later stages of the illness. Occasionally people eat too much and put on weight. People may forget how to eat or drink or may not recognise the food they are given and may need help or prompting. If chewing and swallowing are a problem because the muscles and reflexes are no longer working properly, the GP can refer the person to a speech therapist.
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Most people will lose control of their bladder and some may also lose control of their bowels. You can seek help from your local continence adviser.
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Someone in the later stages of dementia may be suffering from another illness but may be unable to tell you how they feel. The doctor should be contacted immediately if you suspect that the person is ill or in pain. A sudden change in behaviour or increase in confusion is often a sign. Even if they are not ill, they may be in discomfort - they may be constipated, for example, have sore gums or uncomfortable shoes. Check through various possibilities until you find out what is upsetting them.
The side-effects of certain drugs can sometimes increase the person's confusion. If you are concerned about the medication talk to their doctor. It may be possible to change the drug or alter the dose.
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The person with dementia will have increasing difficulties in understanding what is said or what is going on around them. They may gradually lose their speech, or repeat a few words or cry out from time to time. It is important to preserve their dignity. Continue talking to them in a calm soothing voice as if they understand. Even if they do not seem to recognise you, stroking their hand may be reassuring.
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Behaviour that you found puzzling in earlier stages of dementia may continue. For example, the person may be agitated or wander aimlessly up and down. They may be aggressive because they feel threatened, undress at the wrong time or in public, or they may be convinced they are in another phase of life and spend time searching for a long lost relative or grown-up child. Such behaviour usually diminishes or vanishes as the dementia progresses.
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Although the person with severe dementia may have lost most of their memory you may find that they still respond to music, scent, or the sight of a mobile. Or they may enjoy cuddling a toy or stroking a pet.
Most people who reach the final stages of dementia will be in residential or nursing care. But some may be in hospital and a few may still be at home. It is worth thinking through in advance where you would like the person to be cared for at the very end of their life and discuss this with the doctor and the rest of the family.
Some homes are prepared to care for people to the end. However, interventions that are available in a hospital may not be available in a residential or nursing home. If you would like the person with dementia to remain in the home rather than be transferred to hospital if there is a crisis it is a good idea to put this in writing so that it can be kept in their file.
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If your relative is already in hospital or admitted in the final stages of dementia you will need to discuss with the consultant the pros and cons of various types of treatment and intervention.
If they are admitted to hospital at an earlier stage of dementia because they are dying of another illness, make sure the doctors and nurses are aware of their dementia. This can sometimes be overlooked, particularly in an emergency. Obviously someone with dementia will need even more reassurance and calm, simple explanation of what is going on. If you find that the hospital staff are not used to dealing with someone with dementia, discuss this with the nurse in charge of the ward.
When someone reaches the final stages of life one of the main concerns is to ensure that they are as comfortable and pain free as possible. If you are worried that they may be in pain or discomfort, discuss this with the doctors or nurses.
Someone dying from another condition at an earlier stage in the dementia may be more aware of what is happening. They may be find your familiar presence very reassuring.
If someone with dementia becomes seriously ill there may be discussion about whether to try to prolong their life. The person's quality of life needs to be considered - are they are in a vegetative state or very distressed? Or are they still capable of some interaction or enjoyment? Ways of intervening may include resuscitation after a heart attack, antibiotic treatment for pneumonia, or giving food or liquids other than by mouth. Although only the doctor can make the final decision about whether to give or withhold treatment, your views as a carer should always be considered.
You need to think about what the person with dementia would want themselves. You will also want to discuss the details with other members of the family and medical staff. You may need to know, for example, that resuscitation is often unsuccessful in people in the final stages of dementia, and that even where it is successful there is a risk of causing further brain damage. You may prefer to let nature take its course, providing the person is protected from any undue pain or distress.
Despite the fact that dementia is a life-shortening illness, you may find that other causes of death are given on the death certificate. This is because the actual death may be triggered by another condition. Depending on the circumstances and the practice of the doctor, dementia may be entered as the sole or main cause of death, a contributory factor, or even omitted.
The person with dementia is likely to be very frail towards the end. Their inability to cope with infection and other physical problems will be impaired due to the progress of the disease. In many cases their death may be hastened by an acute illness such as bronchopneumonia. In some instances they may die because of a clot on the lung or a heart attack.
However, in some people no specific cause of death may be found apart from dementia and ageing. If the person is over 70 you may find age is given as a cause of death together with dementia. Many people die of other causes such as cancer or heart problems before they reach the final stages of dementia and these conditions will then be given as the cause of death. People who are affected by vascular dementia are more at risk of dying from a stroke.
You may feel strongly that dementia should be mentioned on the death certificate. If so, it may be worth discussing this with the GP or consultant and asking if this can be put in your relative's notes.
March 1997
Page Text supplied by The Alzheimer's Disease Society of Great Britain