How To Know When A Person With Dementia Is Nearing The End Of Their Life

One of the most daunting aspects of supporting a loved one who has dementia is understanding what the final stages of their life will be. 

According to Alzheimer’s Society, dying with dementia can be a very unpredictable process. While a person may feel close to death, they may then live for several more weeks, or even months, making palliative care more difficult to manage.

Thankfully, there are some common features that can broadly guide decisions about how best to care for and support the person and make sure that they experience as good a death as possible. 

Signs that a person with dementia is at the end of life

Alzheimer’s Society spoke with HuffPost UK to discuss which signs family and carers should look for when a person with dementia is in their final days.

While each person is individual in their dementia experience, it’s common for someone approaching the end of their life to become increasingly frail over a period of several months. This can result in frequent falls or infections, moving less, sleeping more, becoming increasingly incontinent, and needing urgent medical care more often.

Additionally, most people tend to become increasingly withdrawn and talk less often. They’re likely to eat and drink much less, which is accompanied by weight loss and increasing problems with chewing and swallowing.

How to help a person with advanced dementia 

Recognise and resolve problems with communication

In later stages of dementia, most patients are much less able to talk or communicate effectively, particularly with people that they don’t know well.

The patient may experience sight or hearing problems, and there could even become a time that they can hardly communicate at-all, making it harder to know if they are uncomfortable or in pain.

Alzheimer’s Society recommends finding alternative ways to communicate with a person with dementia at the end of their life. For example, you could pay close attention to their body or facial expressions. For those that are still able to sense their surroundings, they may be able to respond with basic gestures such as smiling or hand squeezing.

Alzheimer’s Society also notes that people with dementia may become distressed if they hear harsh noises or commotion.

To help the person with dementia, continue to talk to them, even if you don’t think they can follow what you are saying. They may respond to the tone of your voice and feel a connection with you, even if they don’t understand the exact meaning of your words.

Talk about things of interest to the person such as playing favourite music or reminiscing about things from the past.

Keep their surroundings supportive and familiar   

Alzheimer’s Society advises keeping the environment familiar. You can do this by keeping familiar objects and pictures nearby. Keep it peaceful and not cluttered.

A dementia patients’ environment should support the person to engage in different ways. This includes interacting with other people, meeting their spiritual needs, and stimulating their senses. This will vary from person to person and should be based on the person’s preferences and interests.

Additionally, familiar sounds, smells or sensations may provide comfort – for example, hearing a familiar song from earlier in their life or having their skin moisturised, or their hands massaged, with a familiar product.

A good environment should most importantly support the person’s privacy and dignity, with space for professionals and those important to the person to be able to provide care and support. It should also allow the person to process what is happening, if possible.

How to deal with the end of a person with dementia’s life 

As the person nears their final days, there will be difficult, important decisions to make. These will include how to respond if they have an urgent medical problem, whether they should be resuscitated if their heart or breathing stops, or any religious or cultural practices that should be observed.

Alzheimer’s Society said: “Advance care planning can help to ensure that a person’s wishes are known and respected while they’re still able to communicate them.

“It also provides reassurance to family and friends, when the time comes, that they’re doing the right thing. It’s never too early to have a conversation with loved ones about what they want to happen.”

As someone’s condition gets worse and they are within a few days or hours of dying, further changes are common. The person may:

  • deteriorate more quickly than before

  • lose consciousness

  • be unable to swallow

  • become agitated or restless

  • develop an irregular breathing pattern

  • have a chesty or rattly sound to their breathing

  • have cold hands and feet

These changes are part of the dying process when the person is often unaware of what is happening. Healthcare professionals can explain these changes. They can also take steps to reduce the person’s pain or distress, often using medication.

Reach out to your own circle for support

The uncertainty that often accompanies the final stages of dementia can be very stressful. Talking things through with family and close friends can often provide comfort, so try to tell people when you need their support. 

You can call Alzheimer’s Society’s Dementia Support Line to speak to Dementia Advisers, especially when facing difficult questions around Lasting Power of Attorney. 

You might find it helpful to join an online community where you can discuss your feelings honestly with people in similar situations, such as Alzheimer’s Society’s Dementia Support Forum