During the later stages of dementia most people will become increasingly frail due to the progression of the illness. They will also gradually become dependent on others for all of their care. Knowing what to expect can help everyone to prepare. It can enable the person with dementia to think about the kind of treatment and care they might want, and allows them to write an informed advance decision before they reach this stage so they can have input into how they will be cared for. It also allows carers and family to think about these aspects too.
The later stages of dementia can be a distressing time for carers and relatives. There is support available if you need it. Alzheimer’s Society’s National Dementia Helpline can provide information, support, guidance and signposting to other organisations. Details are at the end of this factsheet.
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 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. (See factsheet 526, Coping with memory loss.)
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. (See factsheet 500, Communicating.)
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. (See factsheet 429, Equipment, adaptations and improvements to the home.)
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.
(For more information see factsheet 511, Eating and drinking.)
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:
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. For more information see factsheet 502, Managing toilet problems and incontinence.
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. For more information see factsheet 525, Unusual behaviour.
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:
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.
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 ulcers (bed sores).) 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 and our factsheet on Exercise and physical activity for people with dementia (529) also gives some examples.
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. (See factsheet 408, Drugs used to relieve behavioural and psychological symptoms in dementia.)
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:
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.
The anti-dementia drug memantine is used to treat severe Alzheimer’s disease, and may be used to treat moderate disease in some cases. It can help stabilise the condition and maintain important skills such as feeding and walking, and may improve symptoms of aggression and restlessness. In 2011, memantine was recommended by the National Institute for Health and Clinical Excellence (NICE) as part of NHS care for the treatment of severe Alzheimer’s or moderate disease where drugs such as donepezil cannot be taken. Access to the medication may still vary across the country.
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. 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.
If a lasting power of attorney has been set up, the doctors must consult with the attorney before initiating or withdrawing any treatment. It may also 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 and lasting powers of attorney’ below.
End of life treatments may include:
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.
The life expectancy of a person with dementia is unpredictable, and the disease can progress for up to around 10 years. It is estimated that a third of people with dementia at any one time will be in the later stages of the disease. Although dementia is a life-shortening illness, another condition or illness (such as pneumonia – an infection in the lung) may actually cause a person’s death. This other condition or illness will most likely be listed as the cause on the person’s death certificate. Pneumonia is listed as the ultimate cause of death in up to two-thirds of people with dementia.
The person’s ability to cope with infections and other physical problems will be impaired due to the progression 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 contributing 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 contributing factor. If it has not been mentioned, you can ask the doctor to include it if you wish.
In England and Wales people can write an advance decision to refuse treatment (sometimes written as ADRT and previously known as a living will or advanced directive). This sets out the types of treatments they would not want doctors to provide at the end of their life. This is 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. It also enables healthcare professionals to provide the best person-centred care and treatment they can. Person-centred care is an approach that focuses on the person as an individual.
In Northern Ireland people are able to make an advance directive, which is similar to an advance decision. An advance decision (or advance directive) needs to be made when the person is still able to make decisions for themselves so it is important to start thinking about it early on.
In addition to making an advance decision to refuse treatment, people in England and Wales may also make a lasting power of attorney (LPA) which appoints someone to make decisions about their treatment and care on their behalf – once they have lost the ability to do so for themselves. This can include decisions about refusing life sustaining treatment. For more information see factsheet 472, Enduring power of attorney and lasting powers of attorney. LPAs are not available in Northern Ireland. People in Northern Ireland should contact Alzheimer’s Society’s Northern Ireland office for more information about the alternatives.
Nearest tube – Elephant & Castle underground station (Northern and Bakerloo lines).
Nearest Railway Station – Elephant & Castle
Buses from Elephant and Castle – ask bus driver for Burgess Park. Bus numbers: 12, 171, 148, 176, 68, 484, 42, 40, 45