Alzheimer's Society

During the later stages of dementia most people will become increasingly frail due to the progress of the illness. They will also gradually become totally dependent on others for all their care. Knowing what to expect can help everyone to prepare.

Each person with dementia experiences their illness in their own individual way. The symptoms described in this sheet do not necessarily indicate that a person is in the later stages of the disease, as several of them are also sometimes experienced in the earlier stages. However, the symptoms described below are very likely to occur in the later stages.

Symptoms in the later stages

Memory loss

Memory loss is likely to be very severe in the later stages of dementia. People may be unable to recognise those close to them or even their own reflection. They may no longer be able to find their way around familiar surroundings or identify everyday objects. However, they may occasionally experience sudden flashes of recognition.

The person may believe that they are living in a time from their past and they may search for someone or something from that time. Use this as an opportunity to talk about the past and try to reassure the person.

Even if a person has severe memory loss, they may still be able to appreciate or respond to outside stimuli such as music, scent and touch. For more information see the Alzheimer's Society advice sheet Coping with memory loss.

Communication

The person with dementia will experience increasing problems understanding what is being said to them and what is going on around them. They are likely to find it difficult to communicate with other people. They may gradually lose their speech or they may repeat a few words or cry out from time to time. However, verbal language is only one way of communicating. The person's expression and body language may give clues about how they are feeling.

Continue talking to the person as though they understand; this helps to preserve their dignity. There may still be moments when the person seems to make an appropriate response. For more information see the Alzheimer's Society advice sheet Communicating.

Loss of mobility

Many people with dementia gradually lose their ability to walk and to perform everyday tasks unaided. One of the first signs of this is that they shuffle or walk unsteadily. They may also seem slow or clumsy and be more likely to bump into things, drop objects or fall. A stroke, arthritis or the effects of a fall may also affect a person's mobility.

An occupational therapist can give advice about equipment and adaptations to aid mobility and make the person's surroundings safer. See the Society's information sheets Adaptations, improvements and repairs to the home and Equipment to help with disability.

Some people with dementia eventually become confined to a bed or chair. A physiotherapist can give advice on how you can help the person to move without injuring yourself.

Eating and weight loss

Most people with dementia lose weight in the later stages of the illness. Occasionally, people eat too much and put on weight.

The person may need help and encouragement with eating and drinking. A speech therapist may be able to help if chewing and swallowing are a problem due to the muscles and reflexes no longer working properly. Ask the GP for a referral. For more information see the Society's advice sheet Eating.

Incontinence

Many people lose control of their bladder in the later stages of dementia. Some also lose control of their bowels. Seek help from a community nurse or local continence adviser. Your GP can refer you. For more information see the Society's advice sheet Coping with incontinence.

Puzzling behaviour

People in the later stages of dementia sometimes behave in ways that others find puzzling. 'Puzzling behaviour' varies from person to person but some common examples are described below.

• The person may become more agitated in the late afternoon and early evening. This is sometimes known as 'sundowning'. It may help if you can give the person more individual attention at this time - arranging regular help at this time of day can be very useful.
• The person may react aggressively if they feel threatened or cannot understand what is going on around them. See the Society's advice sheet Dealing with aggressive behaviour for ways to prevent aggression and to deal with it if it does occur.
• The person may rock backwards and forwards, use repetitive movements or keep calling out the same sound or word. If they are calm, this may simply be a useful coping mechanism. However, if the person seems tense, they may be distressed. Check their physical needs, comfort and wellbeing.
• Hallucinations, in which the person sees, smells, hears, tastes or feels things that are not really there may occur. Delusions, in which the person develops distorted ideas about what is happening, also become more common. Try to distract and comfort the person if they are distressed. For more information see the Society's advice sheet Hallucinations and delusions.
• Some people are restless because they need more physical activity. They may feel calmer if you can help them to walk at different times throughout the day or do gentle exercises, or if they can rock themselves in a rocking chair, for example.
• Excessive hand activity, where the person constantly wrings their hands, pulls at their clothes, taps or fidgets or touches themselves inappropriately in public, becomes more common. Rummage boxes, containing objects that feel interesting or are related to the person's past, may help to keep their hands occupied.
• Periods of physical inactivity during which the person remains still, with their eyes open but not focused on anything, may increase.

The reasons for these types of behaviour are not always clear. It may be partly due to the progress of dementia and partly due to distress. There are several things to consider that may help.

• Make sure that the person's spectacles are clean and hearing aid is functioning properly, if they use these.
• Check whether the person's medication is appropriate or whether they might be ill or in discomfort (see 'Health risks' below).
• Check that they are not being overstimulated or disturbed by too many people, too much activity, harsh lights, loud noises or abrupt movements.
• Consider whether they may be understimulated. Gentle activities such as a hand massage, listening to favourite music or stroking a soft piece of fabric may help.
• Most importantly, make sure the person is comfortable - for example, not too hot or too cold, hungry or thirsty, or needing the toilet.

Health risks

Immobility

If the person with dementia remains in the same position - for example, in a bed or chair - for too long, they may develop pressure sores. Pressure sores need immediate attention as they can easily become infected and painful. Contact a community nurse straight away if you notice any signs of them. You can help to prevent pressure sores by making sure the person with dementia moves their position frequently. For more information see the Society's advice sheet Pressure sores.

As people become less mobile, they are also more likely to develop infections and blood clots on the lung. Helping the person to walk or to make arm or leg movements while sitting in a chair can help. A physiotherapist can advise on safe forms of exercise.

Medication

The side-effects of some drugs can increase confusion. Some people in the later stages of dementia are prescribed doses of drugs that are too high or drugs that are no longer appropriate to their needs.

If you are concerned about the effects of medication, talk to the person's GP. It may be possible to alter the dose or change the medication.

Illness and discomfort

A person in the later stages of dementia may be unable to tell anyone that they feel ill or are in pain. A sudden change in behaviour or increase in confusion is often a sign that something is wrong. If you suspect that the person is ill, contact their GP immediately.

Even if the person is not ill, they may be in discomfort. For example, they may be constipated, have sore gums or be wearing uncomfortable shoes. If you are worried that the person is in pain or discomfort, discuss this with the doctors or nurses responsible for their care.

Who provides care

Most people in the final stages of dementia live in a care home although some may be in hospital and a few may still live at home.

Home

If you feel able to provide care for the person at home, make sure that adequate community nursing and other forms of support are available. Check with your GP and social services.

Care homes

Some care homes are prepared to care for people with dementia at the end of their lives. However, interventions that are available in a hospital (see below) may not be available in a care home.

Hospital

Most people with dementia who are admitted to hospital during the final stages are admitted because of another illness. It is important to make sure that hospital staff are aware of the person's dementia.

If staff are not used to dealing with someone with dementia, carers may need to discuss this with the nurse in charge of the ward. A person with dementia will need reassurance and a calm, simple explanation of what is happening.

Interventions

If someone in the later stages of dementia becomes seriously ill, there may be a discussion about whether to try to prolong their life or to allow them to die naturally.

Interventions may include resuscitation after a heart attack, antibiotic treatment for pneumonia, or giving the person foods or liquids other than by mouth.

Resuscitation may be unsuccessful in people in the final stages of dementia; even when it is successful, there is a risk of causing further brain damage.

Only the doctor can make the final decision about whether to give or withhold treatment in the final stages of dementia. However, the views of relatives and of the person with dementia should always be taken into account where possible.

It may be helpful to discuss the issue of interventions with the person with dementia at an early stage in the illness, when they can understand. Some people with dementia put their wishes in writing in the form of an advanced decision (or living will). This outlines the kind of care and treatment they would like in the future when they may no longer be able to communicate their wishes. It may state whether they would want interventions to be made or whether they would prefer to let nature take its course, providing they are protected from undue pain or distress. See the sheet Advance decisions for more information and a form.

Cause of death

The life expectancy of a person with dementia is unpredictable; the disease can progress for up to around ten years. Although dementia is a lifeshortening illness, another condition or illness, such as bronchopneumonia, may trigger death and be given as cause of death on the death certificate. The person's ability to cope with infections and other physical problems will be impaired due to the progress of the disease. The person may die because of a clot on the lung or a heart attack. However, in some people no specific cause of death is found, other than dementia. If the person is over 70, ageing may also be given as a contributory factor. The death of a person with dementia could also, as with everyone, be caused by a condition not related to their dementia at all.

Depending on the circumstances and the practices of the doctor, dementia may be entered on the death certificate as the sole or main cause of death or as a contributory factor. If it has not been mentioned, you can ask the doctor to include it.

Information sheet 417

Last updated: May 2003
Last reviewed: August 2007