When a person with dementia is nearing the end of life, compassionate care is essential for their comfort and dignity. Our dementia specialist Admiral Nurses share their advice on recognising this difficult stage and supporting the person you care for.
Dementia is a progressive neurological condition which is life-limiting – although many people with dementia may die as a result of other conditions (such as cancer or heart failure) before they reach its later stages.
Whether a person has dementia alone or other health conditions alongside, it’s important that plans are made to ensure they receive good end of life care. This can include a shift from treatments that may cause distress or have limited benefit, and more towards a focus on comfort care.
The end of life stage can be hard to identify and accept – by the person with dementia, if they are aware of what is happening, and their family members, who often play a vital role in supporting them. However, good end of life care can enhance the person’s quality of life and ensure their needs are met.
Amongst professionals, it’s usually understood that a person will move towards end of life care when it’s thought that they are within the last months or years of life. This can be very individual and is often difficult to predict, so it’s better to focus on their needs rather than on how long they may have left to live.
Signs that a person with dementia might be approaching the end of their life include:
- significantly reduced appetite, loss of interest in food and drink, or refusing it completely
- weight loss
- swallowing difficulties (for example, coughing/throat-clearing during or after eating or drinking, spending a long time chewing food, or storing food in their mouth)
- frequent infections
- reduced mobility, perhaps requiring care in a bed or chair
- frequent falls
- reduced communication
- becoming more withdrawn, or more agitated and/or restless
- sleeping more, seeming drowsy and less aware
- difficulties controlling their bladder and/or bowel (incontinence)
- needing help with most daily activities
If the person you care for is showing a number of these signs or you have any concerns, make an appointment to discuss this with their GP in case there is a cause that could be treated or managed better, such as pain or delirium.
If the person you care for is entering the later stages of dementia or another condition, it’s important to think about how their end of life care should be provided.
If possible, the person should be involved in making decisions about their future care before they reach a stage where they are unable to do so. This may include:
- Advance Care Planning: this covers how they would like to be cared for and where they would like to die, as well as matters such as decisions about their Will and funeral. You can download a template
- Advance Decision to Refuse Treatment: also known just as an Advance Decision, this states which treatments they do not wish to receive, such as antibiotics, ventilation and/or resuscitation. You can find more information on this in our booklet on Planning for your future, and on the NHS website
You might want to ask their GP for help and advice with putting together an Advance Care Plan or Advance Decision to Refuse Treatment. They may be able to advise on local resources that could support you, or you can call the Admiral Nurse Dementia Helpline for advice.
If the person with dementia has not previously made their wishes and preferences known, it should not be assumed that they are now unable to do so.
However, some people in the later stages of dementia may lack capacity to make some decisions, so other people may need to make these decisions on their behalf.
Making a clear, documented plan for end of life care will help everyone work together to support the person in the later stages of their life. It can bring a sense of calm and control to emotional situations and prevent having to make decisions in a crisis situation, which may be distressing.
An Advance Decision, also known as an Advance Decision to Refuse Treatment (ADRT) or ‘living Will’, is a legally binding document that sets out what medical treatment you do not wish to receive in the future, such as:
- ventilation (breathing support if you cannot breathe by yourself)
- treatment of infections with antibiotics
- cardiopulmonary resuscitation (CPR)
You must name each treatment you do not wish to have, sign the document, and get it signed by a witness.
The charity Compassion in Dying has a template that you can fill in online or on paper.
If you need advice on mouth care or any other aspect of dementia, please call the Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or you can also book a phone or virtual appointment with an Admiral Nurse.
Dementia UK information
- Advance Care Plan
- Lasting power of attorney
- Mental capacity and decision making
- Choosing a care home
Other resources
- NHS guide to Advance Statements
- NHS guide to Advance Decisions
- Gov.uk information on making a Will
- Compassion in Dying – help with preparing for the end of life
Information line: 0800 999 2434 - Dying Matters – information and support with end of life care