The later stages of dementia

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, and can enable the person to write an informed advance decision before they reach this stage so they can have some say over how they will be cared for.

Symptoms in the later stages

Each person with dementia experiences their illness in their own individual way. The symptoms described below do not necessarily indicate that a person is in the later stages of the disease, as several of them can also be experienced in the earlier stages. However, these symptoms are very likely to occur 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 may search for someone or something from that time. It can be helpful for those around them to 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. (See Factsheet 526, 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.

Those around the person should continue talking to them as though they understand. This helps to preserve their dignity. There may still be moments when the person seems to make an appropriate response. (See Factsheet 500, 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 Factsheet 428, Adaptations, improvements and repairs to the home, and Factsheet 429, Equipment to help with disability.)

Some people with dementia eventually become confined to a bed or chair. Those who are caring for the person should seek advice from a physiotherapist on how to help the person to move without injuring themselves.

Eating and weight loss

Most people with dementia lose weight in the later stages of the illness, although occasionally people eat too much and put on weight. The person may need help and encouragement with eating and drinking. If chewing and swallowing are a problem, due to the muscles and reflexes no longer working properly, the person may choke on food or develop chest infections, so it is important to seek help. The GP may be able to refer the person to a speech therapist, or to a nutritional specialist for advice on a special diet. (For more information see Factsheet 511, Eating.)

Incontinence

Many people lose control of their bladder in the later stages of dementia. Some also lose control of their bowels. If this happens, the person's GP should refer them to a community nurse or local continence adviser. (See Factsheet 502, Coping with incontinence.)

Behaviour that seems puzzling

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'. Those caring for the person sometimes find it helps to give the person more individual attention at this time, or to arrange extra help at this time of day.
• The person may react aggressively if they feel threatened or cannot understand what is going on around them. (See Factsheet 509, Dealing with aggressive behaviour.)
• 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. It this happens, it is important to check their physical needs, comfort and well-being.
• Some people experience hallucinations, in which they see, smell, hear, taste or feel things that are not really there. Others develop delusions, in which they experience distorted ideas about what is happening. If the person is distressed, distracting and comforting them can help. (See Factsheet 520, Hallucinations and delusions).
• Some people are restless because they need more physical activity. They may feel calmer if they are helped to walk at different times throughout the day or to do gentle exercises, or if they can rock themselves in a rocking chair, for example.
• Excessive hand activity becomes more common. Here, the person constantly wrings their hands, pulls at their clothes, taps or fidgets, or touches themselves inappropriately in public. 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.

Tips: Helping minimise discomfort and distress

The reasons for these types of behaviour are not always clear, but they 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

There are a number of factors that can be a risk to a person's health that are common during the later stages of dementia, including immobility, medication and illness or discomfort.

Immobility

If the person with dementia remains in the same position for too long - for example, in a bed or chair - 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. It is important to help prevent pressure sores by making sure the person with dementia moves their position frequently. (See Factsheet 512, 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 anti-dementia drug memantine is licensed for the treatment of severe dementia. It can help stabilise the condition and maintain important skills such as feeding and walking, and may improve symptoms of aggression and restlessness. However, memantine is not approved by the National Institute of Health and Clinical Excellence (NICE) for routine use as part of NHS treatment and care, so access to it varies across the country.

Other drugs that are frequently prescribed for behavioural symptoms such as aggression can have severe side-effects, and may increase the person's 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.

Anyone who is concerned about the effects of the person's medication should talk to their GP. It may be possible to alter the dose or change the medication. (See Factsheet 408, Dementia: drugs used to relieve behavioural symptoms.)

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. Anyone who suspects that the person is ill should 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 teeth, or be wearing uncomfortable shoes. If in the person may be in pain or discomfort, it is important to discuss this with the doctors or nurses responsible for their care.

Where will the person be cared for?

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 the person's loved ones feel able to provide care for the person at home, they need to make sure that adequate community nursing and other forms of support are available. This information is available from the GP and social services.
• Care homes − Some care homes are prepared to care for people with dementia at the end of their lives. However, some 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 actually admitted because of another illness. If this is the case, it is important to make sure that hospital staff are aware of the person's dementia.
• Hospices - Hospices offer palliative care when the illness is no longer treatable. Palliative care focuses on reducing physical and psychological distress and providing support to the family at the end of life. Most people in the late stages of dementia require good basic nursing care, which can be provided at home by the district nursing team or in nursing homes. A few have rather more complex symptoms or social problems, which may benefit from specialist input from hospices or palliative home care services. If in doubt, contact your local hospice to discuss the person's needs.

If staff are not used to dealing with someone with dementia, the person's partner or family may need to discuss their needs with the nurse in charge of the ward. Meanwhile, the person with dementia will need reassurance and a calm, simple explanation of what is happening.

What interventions are offered?

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, and 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 if the person with dementia has put their wishes in writing at an earlier stage in the illness. See 'What you can do: advance decisions' below.

What is likely to cause the person's eventual death?

The life expectancy of a person with dementia is unpredictable, and the disease can progress for up to around ten years. Although dementia is a life-shortening 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, and 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. Alternatively, the death of a person with dementia could be caused by a condition that is completely unrelated to their dementia.

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 if you wish.

What you can do: advance decisions

Under the new Mental Capacity Act, people are strongly encouraged to write an advance decision (previously known as a living will or advanced directive), setting out the types of interventions they would not want doctors to provide at the end of their life. This is particularly important, as it means that people in the early stages of dementia have the opportunity to shape and make choices about any palliative care that they may need as the illness progresses.

For more information about advance decisions and the Mental Capacity Act, see Factsheet 463, Advance decision (which includes a form to create an advance decision) and Factsheet 460, Mental Capacity Act 2005.

Your local Alzheimer's Society branch will always be willing to talk to you and offer advice and information to support your needs.

For more information, Dementia Catalogue, our specialist dementia information resource, is available on the website at alzheimers.org.uk/dementiacatalogue

Factsheet 417

Last updated: October 2008
Last reviewed: October 2008

Reviewed by: Professor Clive Ballard, Director of Research, Alzheimer's Society