Preparing for The End of Life

Written by Active Minds on Tuesday the 11th of September 2018.


Whilst most of us don’t want to think about death, of ourselves or a family member, as your loved one nears the end of their dementia journey it can be a good idea to prepare yourself by understanding what to expect during the final stages of their life. This can provide some comfort for what is an incredibly distressing time, and allows you to be as prepared as possible.


Signs and Symptoms

As your loved one starts to near the end you may notice a few signs and symptoms, such as:

  • Limited mobility
  • Difficulty talking, or no speech at all
  • Problems eating or drinking
  • Incontinence

Whilst these are warning signs, this does not mean that death is just around the corner, people can live with these symptoms for a while. These are merely indicators that the end of life is near.

If end of life  is very close, then there are further symptoms that your loved one may start to exhibit, this can include:

  • Inability to swallow
  • Irregular breathing/start-stop breathing
  • Cold hands and feet
  • Drifting in and out of consciousness
  • Restlessness
  • Agitation

Once your loved one moves into this stage of their life, they may be moved into a hospice setting, or they may wish to spend their final days in the comfort of their own home. Regardless of the environment, there are a number of things you can expect during the final days.


Your loved one will be visited regularly by their GP, as well as nurses/carers who are trained in palliative care. This is to ensure that they are being regularly assessed, and that they are comfortable, safe and any pain/discomfort they may be experiencing can be treated and managed effectively.


Pain medication can be given, as well as medication to help with difficulty swallowing. If your loved one is struggling to communicate with you then it can be hard to know if they are in pain or not, a few signs that may indicate they are uncomfortable are:

  • They look pale or sweaty
  • They are grimacing
  • They seem agitated
  • They are struggling to sleep
  • They are moaning or shouting

If you witness any of these behaviours, don’t be afraid to mention it to the nurse who will look at increasing your loved one’s painkillers.


Palliative care will also ensure that any equipment your loved one needs is provided, free of charge. This includes specialised beds and commodes.

Talking to Your Loved One

As difficult as it may be, opening the discussion of death up to your loved one will allow them to discuss any concerns or fears they may have, as well as allowing them to express their wishes and desires to ensure they have the dignified and peaceful death they deserve. These conversations may involve discussing a DNAR (Do Not Attempt Resuscitation Order) or where they wish to spend their final days e.g. at home or in a hospice. They may also want to discuss their wishes for their funeral. Spend time talking to them and assuring them that you will honour all their requests.

Losing a loved one to dementia is a difficult process, but remember there are number of resources out there to help you on this journey, including Dementia UK, which provides a helpline, and the Alzheimer’s Society, which also provides a helpline as well as pointing you in the direction of any services or support groups in your area.