Talking about dying with people affected by dementia

Dementia, often presenting as memory loss, confusion and difficulty carrying out daily activities, affects about 800,000 people living in the UK.

It's important to ensure you talk about your dementia diagnosis

Providing end of life care for people with dementia is a key part of delivering good quality care but many people put things off until it's too late, often missing opportunities that could lead to improved quality of life.

Why talk about it?

  • Reducing anxiety: knowing what to expect and how to respond;
  • Informed decision making: It's not unusual for loved ones to have to make decisions on behalf of the person with dementia. This is much easier if their wishes are clear;
  • Peace of mind: Knowing that everything possible has been done to ensure quality of care for the person with dementia;
  • Not being a burden: Knowing that things are taken care of, to save families and loved ones unnecessary stress and cost.

What to talk about?

  • Dementia: What to expect as the illness progresses;
  • Money: Managing finances in the future (wills, power of attorney)
  • Where to live: Where to live if more help should be needed;
  • Type of care: Wishes and preferences about how to be cared for;
  • Emergencies: What will happen to the person with dementia in an emergency?
  • Funerals/remembrance: Making a funeral plan, choosing songs, cremation, burial, etc;
  • Organ donation;
  • Practicalities: What to do when someone dies;
  • Life after caring: Many carers' and families' lives are on 'hold'. The future can be daunting, and they will need assistance finding their 'new normal'.

What happens if you don't talk?

  • Unnecessary complexity like having to be referred to the court of protection because power of attorney couldn't be authorised, or stressful administration of finances after someone has died with no will;
  • Missing important moments like opportunities to say goodbye;
  • Missed opportunities like finding out one's funeral wishes or how they would like to be remembered.

When to talk

At diagnosis, when you can cover what dementia is, and what it entails. This is the time to start thinking about things that will need to be discussed like power of attorney, wills and advance decisions to refuse treatment.

Arrange opportunities to discuss things further. Some simple prompts or triggers to talk could be significant anniversaries, retirement or events such as specialist palliative care becoming involved, can be natural points to think and talk about the future.

Further information

Dying Matters: www.dyingmatters.org

Dementia UK:
www.dementiauk.org

Alzheimer's Society:
www.alzheimers.org.uk

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