Caring for someone with dementia at the end of life

Please be aware - this information is for healthcare professionals

What is Dementia? Dementia is not a disease in itself. It is a word used to describe a group of symptoms that occur when the brain is damaged by diseases such as Alzheimer’s disease and vascular disease in the brain. 

The symptoms that people experience may include memory loss and difficulties with thinking, perception, problem-solving and language. The symptoms will depend on which areas of the brain are affected by the diseases.

While dementia mainly affects older people, younger people (under the age of 65) can also develop dementia.

What are the main types of dementia?

Alzheimer’s disease is the most common cause of dementia, accounting for around two-thirds of cases in older people. Vascular dementia is another common form, while dementia with Lewy bodies and frontotemporal dementia are less common.

It is possible to have more than one type of dementia at the same time. Alzheimer’s is sometimes seen with vascular dementia or dementia with Lewy bodies. You might hear this called ‘mixed dementia’.

The symptoms of dementia vary depending on the disease(s) causing it. You can read more about the symptoms associated with different types of dementia on the Alzheimer’s Society website.

What are the symptoms of dementia?

Each person is unique and will experience dementia in their own way. The different types of dementia tend to affect people differently, especially in the early stages.

A person with dementia will often have cognitive symptoms (problems with thinking or memory). They will often have problems with some of the following:

  • Day-to-day memory - difficulty recalling events that happened recently
  • Concentrating, planning or organising - difficulties making decisions, solving problems or carrying out a sequence of tasks (eg cooking a meal)
  • Language - difficulties following a conversation or finding the right word for something
  • Visuospatial skills - problems judging distances (eg on stairs) and seeing objects in three dimensions
  • Orientation - losing track of the day or date, or becoming confused about where they are.

Are there any treatments for dementia?

There are treatments that can help with the symptoms of some forms of dementia for a period of time, but there are currently no treatments that slow, halt or reverse the changes in the brain caused by the diseases. There are currently no treatments specifically for vascular dementia or frontotemporal dementia.

In the case of vascular dementia, a doctor may prescribe medication to treat underlying cardiovascular risk factors like high blood pressure or diabetes. Physiotherapy, speech therapy or occupational therapy may be offered to help with speech or movement problems. Non-drug treatments such as cognitive therapies may be available and can help some people with dementia to manage their symptoms.

For more information on dementia see Alzheimer’s Society’s factsheet, 'What is dementia?' 

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How will dementia affect my patient at the palliative stage?

The main types of dementia are progressive diseases, so symptoms will get worse over time.

A person with later-stage dementia often deteriorates slowly over many months. They gradually become more frail, movement and communication will become increasingly difficult and they may have more infections. 

Someone with later-stage dementia will need more help eating, dressing, washing and using the toilet. In the advanced stages, functions like swallowing may become more difficult.

A person with later-stage dementia may also have symptoms that suggest they are close to death, but continue to live with these symptoms for many months. This can make it difficult for the person and their family to plan for the end of life.

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What are the key things for generalist health and social care professionals to remember about dementia at the palliative and end of life stage?

It is difficult to know when a person with dementia is coming to the end of their life. However, there are some symptoms that may indicate the person is at the end of their life:

  • Limited speech (single words or phrases)
  • Needing help with everyday activities
  • Eating less and swallowing difficulties
  • Incontinence and becoming bed bound.

When these are combined with frailty, recurrent infections and/or pressure ulcers, the patient are likely to be nearing the end of their life. If the person has another life-limiting condition (eg cancer), their condition is likely to worsen in a more predictable way.

In the later stages of dementia people are likely to have difficulty with verbal communication. They may have limited or no speech and reduced ability to understand what is being said. People with dementia may use non-verbal communication and behaviour to express needs and feelings. They will still respond at an emotional level, even in the later stages. It’s important to use non-verbal communication and take your time.

People with dementia are at risk of receiving poor care because they are not able to say what they want. For example, a person with dementia may be in pain but unable to verbalise it –  they may cry out or become restless instead. This is an attempt to communicate a need, but can often be dismissed because they have dementia.

There are things you can do that may help. You can ask the person what’s wrong. Even if they can’t verbalise it they may be able to point or show you in some other way. Knowing the person may help as there may be something they always do when they’re in pain.

You can also use pain assessment tools. There are ways to manage pain in advanced dementia that will improve the person’s quality of life and make sure they are comfortable. If the person’s behaviour changes then it is important to investigate possible causes.

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As a health and social care professional, what special considerations should I make in my approach to providing care for someone with dementia?

Supporting people with dementia at the end of their life requires a team approach. Often, there will be many people involved in the person’s care at the end of their life. Good communication and information sharing helps to ensure the person receives the care they need.

You should find out if the patient has an advance care plan. This document may note their preferences about the care they’d like to receive, including what they want to happen, what they don’t want to happen and who’ll speak on their behalf.

It’s also good to be aware of the person’s cultural and spiritual needs and make sure these are respected.

Touch and human contact can be important. Sitting with the person, talking to them, brushing their hair and holding hands may help. A calm and familiar environment is usually best for a person with dementia at the end of their life. Stimulating the senses, for example with music and aromas the person likes, can also help. The focus should be on making sure the person is as comfortable as possible.

Knowing the person will make it easier to provide person-centred care at the end of life. It’s a good idea to find out if the patient has a copy of  'This is me', a document that records their wishes, likes, dislikes etc. If you can’t speak to the person, ask those close to them if they have a copy.

Keep any family or friends informed about what is happening in a gentle, sensitive and supportive way. This will help reassure them that their loved one is getting the care they need. You could consider signposting them to appropriate services, such as an Admiral Nurse (specialist dementia nurses) or local Alzheimer’s Society. It can also help to give them an opportunity to talk about what is happening.

If you are unsure about anything or have any concerns seek advice from a colleague, manager or another health care professional.

This content has been provided by Alzheimer's Society  and Alzheimer's Research UK 

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Points to remember

  • Dementia is caused by diseases, and is not an inevitable part of ageing.
  • Because dementia is caused by different diseases, it is not always memory that is affected first.
  • Alzheimer’s disease and vascular dementia are the most common forms of dementia.
  • It is difficult to know when a person with dementia is approaching the end of their life.
  • Good communication is really important.
  • Use what you know about the person to enhance their end of life experience.

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