The Importance Of End Of Life Care For People With Dementia

21 May 2022 | End of life care

When a person with dementia is approaching the end of their life, it can be a very difficult time for them and the people around them. Communication has often greatly reduced by this point so having those important conversations and planning in advance is essential to ensure they have the best experience.

Planning for end of life care with dementia

For anyone with a life-limiting condition, planning for the end of life care is important. For those with dementia, it’s very important to understand their values, wishes and beliefs while they are still able to communicate them with you.

Dementia as a life-limiting condition 

Dementia is a life-limiting condition, but following a diagnosis, it is very difficult to know how long someone with dementia will live. It will depend on many factors, particularly the age at which dementia is diagnosed. Generally, the younger the person is, the longer the life expectancy. But many other factors come into play, such as other medical conditions that may be present and the type of dementia. With the vastly varied prognosis for dementia sufferers, and especially if symptoms are new and mild, it can be very difficult and uncomfortable for the person to start talking about their death. Having more general conversations to learn their views and wishes can be helpful in the event you have to make decisions for them.

Recognising when someone is reaching the end of their life 

Knowing when someone with dementia is nearing the end of their life can help with providing the right care. But, it can be difficult to know when this time is. This uncertainty can have a big impact on how the person, family and carers are feeling.

Some symptoms of later-stage dementia can suggest the person is reaching the final stage of their condition. These include: 

  • Speech becoming limited – single words or not making sense.
  • Limited understanding of what is being said to them.
  • Needing help with everyday activities.
  • Difficulty swallowing.
  • Bowel and bladder incontinence.
  • Difficulty in moving unaided.
  • Repeated infections as the immune system weakens.

As the condition progresses and they are within a few days or hours of dying, further changes are common. These include: 

  • Faster deterioration.
  • Loss of consciousness.
  • Lose the ability to swallow.
  • Become agitated or restless.
  • Breathing pattern becomes irregular.
  • Develop a chesty or rattling sound when they breathe.
  • Have cold hands and feet.

When communication becomes difficult

Inevitably, late-stage dementia means communication will be extremely difficult. This makes it hard to know if they are in pain or if they need something. Be observant of body signals and facial expressions as this may help you understand their needs. They may also become distressed if they hear harsh noises or commotion as the way they process sound changes.

You can find more information here on how to communicate with someone with dementia.

Making end of life care decisions for someone with dementia

If end of life planning has been discussed in advance, it makes decision-making much easier when they are no longer able to verbalise their wishes themselves.

If no end of life care plan is in place, decisions are made by health professionals in partnership with close relatives and will always be based on the person’s best interests, taking into account any beliefs the person has.

Eximius support for those with dementia

If you are supporting someone with dementia and feel that you or your loved one would benefit from extra support, Eximius can help support your loved one at home.

If you have any questions, please get in touch.

For more information, you can visit NHS Dementia and end of life planning.

You may also be interested in how to cope with a terminal illness.