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Recognising the later stages of dementia and moving towards end of life care

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. However, good end of life care can enhance the person’s quality of life and ensure their needs are met, while also easing distress for family and friends. This can include a shift from treatments that may cause distress or have limited benefit, and more towards a focus on keeping them comfortable.

The end of life stage could last days, weeks, months or even a year or more. It is often difficult to predict, so it is better to focus on the person’s 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. 
  • 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
  • frequent falls 
  • reduced communication 
  • becoming more withdrawn, or more agitated and/or restless
  • drowsiness; sleeping more
  • incontinence 
  • needing help with most daily activities  

If the person with dementia is showing a number of these signs or you have any concerns, consult their GP – there may be a cause that could be treated, such as pain or delirium

If the person with dementia is nearing the end of life, it is important to think about how their care should be provided. This will help ensure their needs are met, bring a sense of calm to emotional situations and prevent having to make decisions in a crisis.

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/Advance Decision/living Will: this states which treatments they do not wish to receive, such as antibiotics, ventilation and/or resuscitation. The NHS has more information

Your GP may be able to help with making these plans, or you can call the Admiral Nurse Dementia Helpline for advice – please see Sources of support, below.

If possible, the person should be fully involved in making decisions about their future. If they no longer have the mental capacity to do so, other people may need to make these decisions on their behalf, in their best interests.

Decisions to think about include:

Resuscitation

Resuscitation is often unsuccessful for someone who is in the advanced stages of dementia and can cause distress and trauma. For this reason, a decision may be made that resuscitation should not be attempted at this stage (known as ‘do not attempt CPR’, or DNACPR).

The NHS has more information to help you decide whether or not resuscitation is appropriate.

Eating and drinking

At the end of life, people may have a reduced appetite or not want to eat and drink at all. This is a natural part of the dying process.

Invasive interventions like feeding through a tube or drip are unlikely to extend the person’s life or improve their quality of life, and may cause distress.

Instead, you and the person’s care team might focus on giving them food and drink for comfort and enjoyment, rather than nutrition. For example:

  • offering small amounts of food and fluids from a teaspoon
  • giving them foods with an appealing taste and texture
  • giving just a few mouthfuls at a time
  • using ice chips or artificial saliva spray to keep their mouth comfortable

You could also request a referral to a speech and language therapist for advice, especially if the person has difficulty swallowing.

Infections

Frequent infections are common in the end stages of life, especially chest infections, pneumonia and urinary tract infections (UTIs).

It is important to consult the person’s GP if they are showing signs of infection.

If the person can still swallow, they may be prescribed antibiotics to take by mouth. However, the GP may feel that antibiotics are not appropriate – for example if the person cannot swallow and would need a drip – and prescribe other medication that could be given by injection to keep them comfortable.

Frailty, mobility and falls

As dementia advances, many people become increasingly frail and experience mobility problems and falls.

You and the person’s health/social care professionals may want to discuss whether it is right for them to be admitted to hospital if they fall. For example, serious injuries may need hospital treatment, but otherwise, it may be possible to support them at home or in their care home.

Becoming more frail and less mobile may lead to other health problems – for example, if the person spends long periods in a chair, they may develop constipation or pressure sores. You could request a referral to a district nurse for help managing these.

An important consideration is where the person will be cared for at the end of life, and the best place for them to die.

Many people will need 24-hour care at this stage, so if you and the person with dementia want them to remain at home, professional home carers may be helpful.

As the person’s care needs increase, you may want to consider a move into a care home. This can be a difficult decision, but with their practical needs taken care of, you can focus on spending time together.

If there is a palliative care or hospice team in your area, they may be able to support the person – either at home, with help from specialist nurses to manage their symptoms and keep them comfortable, or in the hospice itself.

Your GP can advise you about local hospices and palliative care provision.

It is important that the person with dementia feels loved, safe and secure at the end of life. You could try:

  • compiling a life story – a record of their life that can encourage reminiscence, promote feelings of happiness and help their carers understand more about them. You could use our life story template
  • using scents that they find appealing, such as a favourite perfume
  • looking at photos together
  • playing favourite music
  • giving them a gentle hand massage
  • compiling a memory box to look through and handle together
  • brushing their hair
  • giving them small amounts of their favourite food or drink
  • providing something comforting to hold, such as a fluffy blanket or soft toy
  • talking about happy memories

It is important that the person’s faith, spiritual beliefs and cultural considerations are respected at the end of life. For example:

  • If they follow a religion, a visit, blessing or prayer from a religious leader may provide comfort
  • If their religion or culture has rituals around the end of life (eg receiving the last rites) they may need assurance that these will be followed
  • There may be particular people that the person wants to see before they die to ensure they feel at peace

You could include this information in their care plan or life story.

Most of the advice around end of life care also applies to people with young onset dementia (where symptoms develop before the age of 65) – for example, it is still important to consider issues like Advance Care Planning and resuscitation, even if the person appears to be in better physical health and less frail than an older person.

However, there are often additional issues to think about, such as:

  • Does the person need to move into a care home? You may need to spend more time researching options as many are less able to cater for younger people
  • If you plan for the person to remain at home to die, how will this impact on children or teenagers in the family who also live at home?
  • If the person is in hospital, a hospice or care home, will their children be supported to visit them at the end of life?
  • How will their partner manage commitments like family life, work and finances?
  • What support can be put in place for children? It is a good idea to tell their school what is happening

It is important that the person with young onset dementia and their family have professional support towards the end of life. Please see Sources of support, below, for information on accessing support and advice.

Downloadable templates and resources

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