Caring for someone with dementia who is near the end of life
Please be aware - this information is for healthcare professionals.
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People with dementia may have problems with thinking, memory, behaviour and mobility. It can be difficult to know when someone with dementia is near the end of life but there are signs you can look out for.
Palliative care for advanced dementia involves communicating with the person with dementia and helping with any symptoms. If you can still plan care with them in advance, then it's important to do this. Then everyone who is involved in their care knows how they want to be supported.
On this page:
Key points
- Dementia is caused by diseases in the brain. It's not a natural part of ageing.
- Dementia can affect a person's thinking, memory, behaviour and mobility.
- It is difficult to know when someone with dementia is getting near to the end of life, but there are signs to look out for.
- End of life care should always be person-centred. This means finding out about the person and providing care that meets their needs and wishes.
- Good communication through regular, meaningful contact is very important.
- Use what you know about the person to help them feel more comfortable, safe and reassured at the end of their life.
- If you are unsure about anything, ask for help from your manager or another healthcare professional.
What is dementia?
Dementia is a group of symptoms that develop when a person's brain is damaged by diseases like Alzheimer's disease or vascular disease in the brain (vascular dementia).
Symptoms of dementia can include:
- memory loss
- confusion and needing help with daily tasks
- problems with language and understanding
- changes in behaviour.
Dementia is progressive which means that symptoms may be mild at first but get worse over time.
Who is affected by dementia?
Nearly one million people in the UK are living with dementia.
It mainly affects older people. 1 in 11 people over the age of 65 in the UK have dementia. And because we have an ageing population, this number is increasing. But younger people can also develop dementia.
In 2022, dementia (including Alzheimer's disease) was the leading cause of death in England and Wales.
Find more information about dementia at Alzheimer's Research UK.
What are the main types of dementia?
The most common types of dementia (starting with the most common at the top) are:
- Alzheimer's disease
- vascular dementia
- dementia with Lewy bodies
- frontotemporal dementia.
There are also rarer types of dementia caused by other diseases.
Between 50-75% of people with dementia have Alzheimer's disease. Vascular dementia can be a consequence of having a stroke, or it may be caused by damage to the small blood vessels in the brain.
Dementia with Lewy bodies can affect people who have Parkinson's.
Find more information about dementia in people with Parkinson's.
A person can have more than one type of dementia, like Alzheimer's disease and vascular dementia. This is called mixed dementia.
Someone's early symptoms may be linked to the type of dementia that they have. As it progresses, these early differences between dementia types may become less obvious.
Early symptoms of dementia
Everyone's experience of dementia is different but there are some common early signs and symptoms.
A person with dementia will have cognitive symptoms at first. This means having problems with memory and thinking, and includes changes in behaviour, personality and speech. They will usually only develop physical symptoms later.
Dementia symptoms in the early stages may include problems with the following:
- Memory. They may find it difficult remembering things that happened recently.
- Concentrating, planning or organising. Someone may struggle to make decisions, solve problems or follow a series of steps (such as cooking a meal).
- Language and communication. They may find it difficult to follow a conversation or to find the right word for something.
- Misunderstanding what they see. They may find it difficult to judge distances (such as on stairs) or perceiving the edge of objects. They may misinterpret patterns or reflections.
- Confusion about time or place. A person may lose track of the time or date or be confused about where they are.
- Mood changes or difficulty controlling emotions. They may become unusually anxious, irritable, sad or frightened, lose interest in things and experience personality changes.
Read about symptoms associated with specific types of dementia at Alzheimer's Research UK.
Dementia treatments
Dementia is progressive and there is currently no cure. But there are medicines and other non-drug treatments that may help with the symptoms of some types of dementia, such as Alzheimer's disease or Lewy body dementia.
So, for example, while current treatments for Alzheimer's disease do not slow or stop it, they may help to manage the symptoms for a while.
Physiotherapy and speech and language therapy can help with movement, communication and swallowing problems. Occupational therapy can help someone with dementia to keep their independence for longer.
Non-drug treatments like talking therapies are generally available for people with a recent diagnosis.
Read about treatments for dementia at Alzheimer's Society.
Advanced or late stage dementia
When someone has advanced dementia (or late stage dementia) it's likely that it will have a big impact on things like memory, communication and everyday activities. How quickly their symptoms get worse can depend on the type of dementia they have. It also varies from person to person.
Signs and symptoms of advanced, or late stage dementia
These are some of the most common symptoms of advanced dementia, but there can be many more. And it's important to remember that each person with dementia experiences it differently.
Severe memory loss
Someone may not recognise people important to them or remember where they live or who they are.
Problems with verbal communication
They may not understand what you're saying and may lose the ability to speak. Instead, they may use sounds, gestures and body language.
Mobility and physical problems
Many people gradually lose their ability to move around without help and become at risk of falling or having a fracture. This can be caused by a decline in visuospatial ability, attention and coordination, as well as physical comorbidities such as joint pain and muscle weakness. They may need a wheelchair or be unable to leave their bed.
Some people may still be able to move around with support and this should be encouraged where possible.
Changes in mood and behaviour
A person with advanced dementia may react strongly to situations that cause them fear, discomfort or distress. For example, if they do not understand why someone is washing or dressing them, they may react defensively or with sudden emotional outbursts.
They may not be able to self-regulate their actions and this may lead to inappropriate or risky behaviour. This can be very upsetting for them, and those around them. Sometimes the person may behave like this because they cannot tell you that they have a physical or emotional need. They may be feeling pain or need the toilet – or they may be feeling lonely.
It's important to remember that people with dementia often try to communicate through their behaviour, especially when they are no longer able to speak.
A sudden increase in distress or confusion can also sometimes be a sign of delirium.
Bladder incontinence
This is common in late stage dementia. Some people will also have bowel incontinence.
Read more about bladder and bowel incontinence.
Problems with eating, drinking and weight loss
People with dementia can develop problems with eating and drinking, and there are different reasons for this.
Read Marie Curie's information about hydration and nutrition in palliative care.
What is the life expectancy for late stage dementia?
It is difficult to say what the life expectancy is for someone with advanced, or late stage, dementia. And this can make it difficult for the person and the people important to them to plan for end of life care.
Their condition will usually get worse slowly over many months. They will gradually become more frail and need more help with everyday activities like eating, dressing, washing and using the toilet. They may lose weight if swallowing and chewing has become more difficult.
Someone may also have symptoms that can make you think they are close to death but live with these symptoms for many months.
Dementia and end of life care
If you know the person well, it will make it easier to provide person-centred care, focused strongly on what they want and need at the end of life. If they are unable to tell you their preferences, speak to people who know them well, who could be their family, friends, or a partner.
It's most important that everyone who is caring for them, including healthcare professionals, uses their knowledge of the person to guide the care they provide.
You should also check if the person with dementia has given anyone lasting Power of Attorney. If they have, this person can now make decisions for their health and welfare, on their behalf.
Read our information about Power of Attorney.
'This is me' leaflet
Find out if the person has a 'This is me' document. This is their record of the things they want the people caring for them, including healthcare professionals, to know about them.
For example, it may tell you about these things:
- their cultural and family background
- important events, people and places from their life
- their preferences and routines.
If you cannot now ask them directly, ask the people important to them if they have a copy of this. The person with dementia may also have these details recorded in an advance care plan.
Read information about This Is Me at Alzheimer's Society.
Check for an advance care plan
Find out if the person with dementia has an advance care plan.
This document may record their preferences about the care they receive, including:
- what they want to happen
- what they do not want to happen
- who they want to speak on their behalf.
It may also include an advance statement or an advance decision.
Read our information for professionals about advance care planning.
Find out about their cultural and spiritual needs
Find out what you can about the person's cultural and spiritual needs. You can use any advance care plans or documents to find out about their wishes. You could also ask the people important to them what they know about the person's cultural or spiritual beliefs, or practices.
Everyone involved in the person's care should respect and support these needs – they are just as important as medical care.
Read more information about providing spiritual care at the end of life.
Focus on communication
People living with dementia are at risk of receiving poor care if they cannot communicate their needs.
For example, a person with dementia may be in pain or discomfort but not be able to tell you. This may mean that they cry out or become restless. They may be trying to communicate a need, but this can be dismissed because they have dementia.
Losing language skills
When someone with dementia speaks more than one language, they may lose the language or languages they learnt later in their life.
They may now only be able to understand the language they learnt first in life. This is sometimes called reverting to their mother tongue.
It may help if there is someone who can talk to them in their first language, or if you are able to look up words in that language. A healthcare professional may be able to access an interpreter to help.
Find more information about reverting to your mother tongue at Alzheimer's Society.
Non-verbal communication
Someone with dementia will often tell you about their needs and feelings in non-verbal ways. For example, through body language, gestures and facial expressions.
It's very important to continue to communicate with them, even if you think they do not understand. Meeting their communication needs is an important part of caring for the emotional wellbeing of someone with dementia.
The following things can help with communication:
- Try to maintain eye contact.
- Think about your non-verbal communication as well as your tone of voice.
- Some people may find touch and human contact reassuring. Sitting with the person, talking to them, brushing their hair and holding hands may help.
- Stimulating the senses can help, for example with music and aromas that the person likes. The focus should be on making sure that they are as comfortable as possible.
- Take your time and take your cues from them.
- Use what you know about them as person to engage with them. This could include hobbies and interests they've had. It can help to make use of a range of resources such as photos or objects and things from their past.
The most important thing you can do is to engage with them by using what you know about them to make a connection with them.
Manage pain
Someone with advanced dementia may not be able to tell you if they are in pain so it's important to look out for signs of distress or discomfort. If the cause of their pain is not resolved or treated promptly, the problem could get worse and they may suffer physical harm or injury. They may also become very distressed.
There are things you can do that may help if you think the person is in pain, including:
- First ask them what's wrong and ask if they can show you. Even if they cannot say what's wrong with words, they may be able to point or show you in some other way.
- Use what you know about them as there may be something they always do when they're in pain, such as a particular facial expression.
- 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 someone's behaviour changes, it is important to investigate possible causes and rule out pain.
Pay attention to eating and drinking
The person with dementia may have lost their appetite or have difficulty swallowing safely. In the last days of their life, someone with dementia may stop eating or drinking. People around them may find this distressing, but it's normal for people who are approaching the end of life.
You should offer someone in the last days of dementia food and drink for as long as it is safe, and they show an interest. It's important to keep their mouth comfortable – provide sips of fluids and keep their lips moist and clean.
Read more about hydration and nutrition in end of life care.
Consider the room and the environment
Whenever possible, it's best if the person with dementia is in a calm, familiar environment and with the people important to them. They might enjoy things that stimulate their senses, such as familiar music or aromas (such as lavender) and hand massages.
Someone with dementia may have said where they want to die in an advance statement, through conversations with people important to them, or in an advance care plan.
Support the people important to the person with dementia
Keep people important to the patient informed in a sensitive and supportive way about what is happening. This will help reassure them that they are getting the care they need.
You may also want to tell them where they can find more support. See useful organisations for people with dementia and their carers.
Last stages of dementia before death
While it is difficult to know when someone is experiencing the last stages of dementia before death, there are some signs and symptoms that may indicate this.
These include:
- a limited ability to speak (typically single words or phrases) or not being able to speak at all
- becoming more withdrawn
- eating less and having difficulty swallowing
- bowel and bladder incontinence
- inability to stand or walk, problems sitting up, and becoming bed-bound
- sleeping most of the time and being difficult to wake.
When these signs are combined with frailty, repeated infections and/or pressure ulcers, then someone is likely to be nearing the end of their life. If they have another life-limiting condition, for example cancer, their condition is likely to get worse in a more predictable way.
Signs that death is near
When someone is within a few days or hours of dying, further changes may include:
- their condition getting worse more quickly
- loss of consciousness
- not being able to swallow
- becoming agitated or restless
- irregular breathing
- a chesty or rattly sound to their breathing
- cold hands and feet.
Read more information about the signs that someone is in their last days or hours of life.
These changes are part of the dying process. Recognising them can help you support the person who is dying and the people important to them too.
It's very important to support someone with dementia who is near death to be as comfortable as possible until they die.
When to ask for support
Supporting people with dementia at the end of life requires a team approach. There may be many people involved in providing the person's end of life care.
Good communication and information sharing will help make sure the person with dementia receives the care they need.
If there's anything you're not sure about or you have any concerns, ask for advice from a colleague, manager or another healthcare professional.
There may be certain professionals who can advise on specific issues. These may include a GP, district nurses, social workers, other care staff and specialists.
Useful resources
Support for people with dementia and carers
Alzheimer's Society – end of life care information for patients and their families
Support line: 0333 150 3456
Alzheimer's Scotland – specialist services for people with dementia and their families
Dementia UK – expert one-on-one advice and support for families living with dementia via Admiral Nurses
Helpline: 0800 888 6678
Admiral Nurses – specialist dementia nurses
If you're caring for someone who's living with late stage dementia in Wales Marie Curie's Dementia Care and Respite Services are here to help.
For professionals
Social Care Institute of Excellence (SCIE) – End of life care in dementia: an introduction
NICE Clinical Knowledge Summary - Dementia
Alzheimer's Research UK – a range of booklets about dementia including information on specific types of dementia, guidance on lowering your risk and different language versions.
Rules of thumb: End of life care for people with dementia – a guide for healthcare professionals providing dementia care at the end of life. It can be used for training, to support decision-making and to help discussions with family members and advocates.
The Many Faces of Dementia - online learning course developed by UCL for Future Learn, exploring key issues in dementia care.
Books for healthcare professionals
Dementia Reconsidered, Revisited: The Person Still Comes First (2019). Dawn Brooker and Tom Kitwood (Open University Press)
Essentials of Dementia: Everything You Really Need to Know for Working in Dementia Care (2018). Shibley Rahman and Professor Rob Howard (Jessica Kingsley Publishers)
Enhancing Health and Welbeing in Dementia: A Person-Centred Integrated Care approach (2017). Dr Shibley Rahman (Jessica Kingsley Publishers)
This content was provided with support from Alzheimer's Research UK and Alzheimer's Society.
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
