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

Amongst professionals, it is usually understood that a person is approaching the end of life when it is thought that they are within the last weeks, months or even years of life. However, this is very individual and often difficult to predict, so it is better to focus on their needs rather than on how long they have left to live.  

Signs that a person with dementia might be approaching the end of life include:  

• reduced appetite: loss of interest in food and drink, or refusing it completely  

• increasing frailty  

• weight loss  

• swallowing difficulties (eg coughing/throat-clearing; taking a long time to chew food; choking; storing food in their mouth)  

• frequent infections  

• reduced mobility, perhaps requiring care in a bed or chair  

• frequent falls  

• reduced communication  

• becoming withdrawn and less aware 

• agitation/restlessness  

• drowsiness/sleeping more  

• incontinence  

• needing help with most daily activities  

However, these may also be signs of another condition that could be treated, like pain or delirium. If you are unsure, it is worth consulting the person’s GP.

Whether a person has dementia alone or other health conditions alongside, it is essential that they receive supportive, respectful end of life care. This often involves a shift away from treatments that may cause distress or have limited benefit, focusing instead on comfort.  

Making clear plans about how the person with dementia will be cared for will help everyone support them in the best way possible and give family and friends peace of mind. If possible, the person themselves should be involved in these decisions. 

These plans could include: 

• an advance care plan: this includes how the person would like to be cared for and where they would prefer to die 

• advance decision to refuse treatment (ADRT): also known as a ‘living Will’, this states which treatments they do not want, such as antibiotics, ventilation and/or CPR 

You might want to ask the GP or a dementia specialist Admiral Nurse for advice on putting together an advance care plan or ADRT.  

If the person with dementia has not previously made their wishes known and now lacks the mental capacity to do so, other people may need to make decisions on their behalf, in their best interests.  

Deciding that someone should not be resuscitated if their heart stops can be extremely difficult. But resuscitation is often unsuccessful for a person with advanced dementia and could cause distress and trauma. 

For this reason, in consultation with the person with dementia (if possible) and their family, a health professional may suggest putting a ‘Do not attempt CPR’ (DNACPR) order in place. The NHS has more information that may be helpful.  

At the end of life, people may have a reduced appetite or not want to eat or drink at all. This can be hard to accept, but it is a natural part of the dying process.  

Invasive interventions like tube or drip feeding are unlikely to extend the person’s life and may cause distress. Instead, their care team might suggest focusing on giving food and drink for comfort and enjoyment, rather than nutrition.  

For example, you could:  

• carefully offer food and fluids from a teaspoon  

• offer favourite foods, or those with an appealing taste and texture  

• give just a few mouthfuls at a time  

• use ice chips or artificial saliva spray to keep their mouth comfortable  

• ask the person’s care team for a referral to a speech and language therapist if they have difficulty swallowing  

Frequent infections are common towards the end 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 they can still swallow, they may be prescribed antibiotics to be taken by mouth which could help to relieve their symptoms. However, the GP may feel that antibiotics are not appropriate – for example, if the person has swallowing difficulties and antibiotics would have to be administered by drip – and prescribe other types of medication to keep them as comfortable and peaceful as possible.

In the later stages of dementia, many people become increasingly frail and experience mobility problems and falls.  

You and the person’s care team may want to discuss whether it is right for them to go to hospital if they fall. For example, if they have a suspected fracture or other serious injury, they will need to be assessed in hospital. Otherwise, it may be possible to support them to stay at home or in their care home.  

Becoming frail and less mobile may lead to other health problems – for instance, if the person spends long periods in a chair or bed, they may develop constipation and pressure sores. Their GP may refer them to a district nurse for treatment and advice.  

It is important to think about where the person with dementia will be cared for at the end of life. People with advanced dementia often need 24-hour care, so you may want to consider support from paid home carers or a move into residential care. This can be a very difficult decision but if the person has professional support, you can focus on spending time together while being confident their care needs are met.  

Social services can arrange a needs assessment for the person with dementia and a carer’s assessment for you to establish what support would be beneficial. 

Some people with dementia are admitted to hospital towards the end of life, and some will die there. While this may not be what you or the person wanted, you can still be involved in their care, so speak to staff about their needs and preferences and how you can support them.  

There may be a local hospice that can support you and the person you care for – for example by helping with symptom management to keep them as comfortable as possible, whether that is at home or in the hospice itself. Your GP can advise about local hospices and palliative care provision.  

Keep in mind that decisions about the person’s care may need to be revisited if their needs change. 

Although the person with dementia may not be able to express their feelings, it is important that they feel loved, safe and secure. You could try: 

• using scents that they find appealing such as a favourite perfume, aftershave or soap  

• looking at photos together  

• playing music  

• giving them a gentle hand massage  

• compiling a memory box to look through and handle together  

• brushing their hair  

• offering small amounts of their favourite food and drink  

• giving them something comforting to hold, such as a fluffy blanket or soft toy  

• talking about happy occasions in their past  

• compiling a life story: a record of the person’s past and present life, likes and dislikes, and future wishes which you can look at together and share with professionals and carers to help them better understand and support the person 

It is important that any religious, spiritual or cultural beliefs and values are respected at the end of life. For example:  

• If the person with dementia follows a religion, a visit, blessing or prayer from a religious leader may provide comfort  

• If their religious or cultural community has rituals around the end of life (eg receiving the last rites), they may need reassurance that these will be followed  

• There may be particular people that they want 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 with dementia also applies to young onset dementia (where symptoms develop before the age of 65). Important issues like advance care planning and resuscitation should still be considered, even though the person may be in better physical health than an older person.  

However, you are likely to face additional issues relating to their life stage, like:  

• the different emotional impact of dying at an early age – on the person with dementia and their family 

• how their partner will manage financial commitments like a mortgage/rent  

• whether it is appropriate for the person to stay at home to die if they have children or teenagers 

• if the person does not remain at home, where they will be cared for (some care homes do not accept residents under the age of 65; others may have difficulty meeting the needs of a younger person) 

• what will happen if the person is admitted to hospital, eg whether their children can visit 

• whether hospice care is available 

• whether their children should be able to see the person at the end of life 

• who will look after their children if you decide that they should not be present  

If you work, it is a good idea to tell your employer about your situation so you can access carer’s leave. Many employers continue to pay the employee while they are taking carer’s leave, although they do not have to. They may also offer bereavement support. 

A child or young person facing the death of a parent or other family member is likely to need a lot of support. Conversations about the end of life can be very difficult, but speaking honestly can help them feel supported and secure.  

These tips may help: 

• Give clear, simple and accurate information that is appropriate to the child’s age and level of understanding 

• Provide information in small chunks to allow the child time to process it 

• Ask if they have any questions – if you do not know the answer, try to find out together 

• Keep to familiar routines (eg afterschool clubs, mealtimes, bedtime) to maintain a sense of normality 

• Let them help with simple caring tasks if they want to, like making the bed or brushing their loved one’s hair 

• Involve them in making decisions – this could be as simple as helping choose what the person will wear 

• Provide plenty of reassurance that they are loved and there are people who will be there for them 

• Help the child make memories, for example by making memory boxes, photo books or drawings, and taking photos and videos with the person with dementia 

• Talk to the child’s school or college about what is happening so they understand that they may need extra support or time off 

• The child may benefit from counselling and access to support services – you can ask their school or GP what is available 

When someone close to you is at the end of life, it is vital that you feel well supported. You may wish to seek help from:  

• other family members or friends  

• carers’ support groups 

• a local hospice  

• health or social care professionals, eg your GP or a counsellor  

• religious or community leaders  

You can also contact our free Helpline to speak to a dementia specialist Admiral Nurse: please call 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), or email helpline@dementiauk.org  

If you prefer, you can book a phone or video appointment with an Admiral Nurse in our virtual clinic.  

Dementia UK resources

Advance Care Planning

A stay in hospital

The carer’s assessment

Continence

Delirium

Eating and drinking

Falls

Frailty

Good hydration for a person with dementia

Grief, bereavement and loss

Lasting power of attorney

Life story work

Looking after yourself as a carer

Mental capacity and decision-making

Moving into a care home

Pain and dementia

Supporting children and adolescents with a parent with young onset dementia

Supporting children and adolescents with grief, bereavement and loss

Understanding dying

Young onset dementia: choosing a care home

Other resources

Carer’s leave 

Child Bereavement UK

Compassion in Dying: living Will advice

Dying matters

Hospice UK

Marie Curie: care and support through terminal illness

The needs assessment

Resuscitation Council UK ReSPECT plan for emergency care and CPR