Dementia & End of Life

When a person with dementia reaches the advanced stages of the illness and when they are approaching end of life this can be very a difficult time for them and their family. The following organisations provide information about the later stages of dementia and when the person is nearing the end of their life.

Practical advice

When someone with dementia is in the late stages of their illness it can be difficult to tell when they are approaching the end of life and to know the best ways to care for them and meet their needs. The links provide information on how to recognise the end of life in a person with dementia, along with suggestions to help care for them, such as feeding and drinking, managing agitation and recognising pain.

Advance Care Planning

Advance Care Planning (ACP) is where there is a discussion between the person with dementia, their families and those involved in their care about the person’s future wishes and priorities for care. As dementia is a progressive condition, and the person may at some point lose capacity to make decisions, it is important to have these difficult conversations as early as possible.

Caring for yourself and your family

Looking after yourself

The final stages of a person’s life and following their death can be extremely upsetting and difficult times for families and those close to the person. The way that people experience and cope with grief can vary between individuals. Some may have an immediate reaction, whereas others may not experience grief until a much later time.

There is no one single way that people experience loss. There is no right or wrong way to grieve and it is not time bound. It is important to allow yourself to grieve in your own way and to be kind towards yourself when experiencing grief. The links provides information about bereavement; common emotions, how to take care of yourself and where to access support should you need it.

The organisations below are to some organisations that can offer information and support to people and to help them to cope with a person’s death.

  • At a Loss – The UK’s ‘one stop shop’ website for finding appropriate and local bereavement support.
  • Cruse Bereavement Care – Offer support, advice and information to children, young people and adults when someone dies. 
  • Samaritans – Offer a safe place for you to talk any time you like, in your own way – about whatever’s getting to you.
  • Dying Matters – A coalition of individuals and organisations across England and Wales, which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
  • National Association of Widows – National charity run by the widowed offering support, friendship and understanding to men and women who have lost their partners through bereavement.
  • Way Up – An online forum aiming to offer mutual support to people widowed in their 50s and 60s. People often make friends via this forum and members arrange meet-ups.

Caring for the Family

Dementia is a condition that is challenging not only for the people with the diagnosis but also for their families.

Admiral Nurses provide specialist dementia support for families of people with dementia and offer services across Coventry and Rugby.

The Admiral Nurse Dementia Helpline is for anyone with a question or concern about dementia, from looking out for the first symptoms of Alzheimer’s, to coping with the final stages of dementia.  Specialist Admiral Nurses have the knowledge and experience to understand the situation and suggest answers that might be hard to find elsewhere.

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