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 – 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
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)
reduced mobility, perhaps requiring care in a bed or chair
becoming more withdrawn, or more agitated and/or restless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. See Sources of support for you, below, for links to our leaflets on these.
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 here
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. See Sources of support for you, below.
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.
Resuscitation is oftenunsuccessful for someone who is in the advanced stages of dementia and can cause distress and trauma. For this reason, the person with dementia (if possible), their health and/or social care professionals and you as their next of kin and/or carer, may make the difficult decision that it is in their best interests that resuscitation should not be attempted at this stage.
The NHS has more information to help you decide whether or not resuscitation is appropriate for a person nearing the end of life.
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. You can read more about this in the Plain English Summary here.
Instead, you and the person’s care team might decide to focus on careful hand feeding and giving them food and drink for comfort and enjoyment, rather than nutrition. For example, you could:
offer food and fluids from a teaspoon – carefully and in small amounts
give them foods with an appealing taste and texture
give them just a few mouthfuls at a time
use ice chips or artificial saliva spray to keep their mouth comfortable
request a referral to a healthcare professional such as a speech and language therapist for advice, especially if the person has difficulty swallowing
Frequent infections may be common in the end stages of life, especially chest infections, pneumonia and urinary tract infections (UTIs). It’s important to consult the person’s GP if they are showing signs of infection to discuss the best course of action.
If the person can still swallow, they may be prescribed liquid antibiotics by mouth. Antibiotics may not be successful in curing the infection, but they could help to relieve symptoms. However, the GP may feel that antibiotics are not appropriate, and prescribe other types of medication to help keep them as comfortable and peaceful as possible.
As dementia advances, many people may experience mobility problems and falls. This is often part of the progression of the condition (or of other conditions that they have alongside).
You and the person’s GP or other health/social care professionals may want to discuss whether it’s right for them to be admitted to hospital if they fall. For example, if the GP believes they may have sustained a fracture or other serious injury, they may require hospital assessment and/or treatment.
Our information on Pain in dementia explains more about identifying and treating pain.
It’s important to think about where the person will be cared for in the end stages of life, and any stated preferences about where they would like to die, as well as your own feelings – for example, whether you think you can continue to care for them at home.
People at the end of life often need 24-hour care, so if you and the person with dementia feel it’s important for them to remain at home, you may want to consider support in the home from professional home carers.
Social Services can arrange a Needs Assessment for the person with dementia and a Carer’s Assessment for the family carer to explore the support options available to you both. You may find it helpful to read our information on the Carer’s Assessment.
As the person’s care needs increase, you may want to consider a move into a care home or nursing home. This can be a very big and emotional decision, and you may feel you’re letting the person down – but often, care homes can provide the extra support they need, so you can focus on spending time together. Our leaflet on Considering a care home may help you at this stage.
Although a person’s physical abilities and memory often deteriorate as their dementia advances, it’s thought that feelings remain intact, so it’s important that they continue to feel loved, safe and secure.
Compiling a life story that includes important information about the person – such as their family and friends, significant events in their life, their likes and dislikes, and values and/or spiritual belief – will help the people around them know what matters to them and form meaningful connections. See Sources of support for you, below, for our leaflet on creating a life story.
As the person’s ability to communicate verbally reduces, it can be helpful to use the senses to maintain connections and give them comfort and pleasure. This could include:
use scents that they find appealing or have been their favourites in the past, such as a perfume, aftershave or soap that they like to use
look at photos together
play music that they have enjoyed listening to
give them a gentle hand massage
compile a memory box to look through and handle together
brush their hair
give them small amounts of their favourite food or drink
give them something comforting to hold, such as a fluffy blanket or soft toy
It’s important that as a carer or family member of a person at the end of life, you feel supported and able to look after your own needs. You may wish to seek support from:
other family members or friends
carers’ support groups (local or online)
a local hospice
health or social care professionals eg your GP or a counsellor
a religious leader
If you would like to talk to a dementia specialist Admiral Nurse for support, please call our Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, open every day except 25th December, or email email@example.com.
Marie Curie Care and support through terminal illness Website: mariecurie.org.uk Phone: 0800 090 2309 (Monday-Friday 8am-6pm, Saturday 11am-5pm)
My Decisions Help with planning future treatment and care and recording wishes. Website: mydecisions.org.uk Information line: 0800 999 2434 (Monday-Friday 11am-3pm)
Resuscitation Council UK Guidance with issues around resuscitation, including decision-making. Website: resus.org.uk
Dying is an individual and unique experience: everyone will experience it in their way and have their own needs. There are common characteristics and changes that help us to know when a person is dying