The later stages of dementia

2. Symptoms in the later stages

Each person with dementia experiences the 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 of most dementias.

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 stimuli such as music, scent and touch. It is important to continue to talk to the person, even if they can't respond. 

Problems with 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. Many people can still receive and return emotional signals long after they have lost the ability to speak.

Those around the person should continue talking to them as normal, even if they don't think that the person is able to understand. This helps to preserve their dignity. There may still be moments when the person seems to make an appropriate response. 

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.

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 or community nurse on how to help the person to move without injuring the person or themselves.

An occupational therapist can give advice about equipment and adaptations to aid mobility. 

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. Weight loss can affect the immune system, making it harder for the person to fight infections. It may also increase the risk of falling and make it harder for the person to remain independent.

It is important to ensure that the person is getting enough food and liquid. They may need help and encouragement with eating and drinking. Problems with chewing and swallowing are common in the later stages of dementia due to the person's muscles and reflexes no longer working properly. These problems can cause the person to choke on food or develop chest infections, so it is important to seek help.

The GP or community nurse may wish to refer the person to a speech and language therapist or to a nutritional specialist. Nutritional specialists can advise on a special diet or, if the person is unable to eat or drink normally, they can carry out an assessment to see whether or not having foods or liquid through a tube would be beneficial.

Problems with continence

Many people lose control of their bladder in the later stages of dementia. Some also lose control of their bowels. This may happen all or most of the time, or may just be a case of occasional leakage.

Incontinence is not an inevitable symptom of dementia, but there are a number of reasons why someone with dementia could become incontinent. These include various medical conditions, a number of which are treatable. Possible causes include:

  • urinary tract infection
  • severe constipation
  • side-effects of medication
  • prostate gland trouble
  • forgetting to go to the toilet or forgetting where the toilet is
  • not recognising the need to go to the toilet.

If a person develops problems with continence their GP should refer them to a community nurse or local continence adviser who can give advice and help with getting incontinence pads and other aids. 

Unusual behaviour

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

The person may become more agitated and confused 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 be more prone to walking about at this time.

The person may react aggressively if they feel threatened or cannot understand what is going on around them. 

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. If this happens, it is important to check their physical needs, comfort and well-being. Feelings of pain, constipation, hunger and dehydration are key triggers for changes in behaviour.

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.

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. The person may constantly wring their hands, pull at their clothes, tap or fidget, or touch themselves inappropriately in public. A rummage box, made of an old shoe box or biscuit tin and containing objects that are related to the person's past such as pictures, knitting wool or tools (if they are safe), may help to keep their hands occupied.

The person may have long periods of physical inactivity where they remain still, with their eyes open but not engaged in any other activity.

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 glasses 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 pain (see 'Health risks' below).

Check that they are not being disturbed by too many people, too much activity, harsh lights, loud noises or abrupt movements.

Consider whether they may be bored or in need of stimulation. Gentle activities such as a hand massage, listening to their 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 common during the later stages of dementia that can cause problems for the person's health. These include immobility, the side-effects of 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. Other common skin problems include fungal infections and itching.

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

Side-effects of medication

All drugs can have side-effects and some of the drugs that are frequently prescribed for behavioural symptoms in people with dementia 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. 

Illness and discomfort

Infections can increase confusion in people with dementia. Infections can also speed up the progression of dementia. It is therefore important that if a person with dementia develops an infection it is quickly diagnosed and treated.

A person in the later stages of dementia may be unable to communicate to others that they are feeling unwell. A sudden change in behaviour or increase in confusion is often a sign that something is wrong. Sometimes infections can cause a person with dementia to become severely confused. This is known as 'delirium'. Delirium usually develops over one or two days. Symptoms of delirium include:

  • agitation or restlessness
  • problems concentrating
  • hallucinations or delusions
  • becoming unusually sleepy or withdrawn.
  • Anyone who suspects that the person is ill should contact their GP immediately.

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