Taking control and feeling supported

Planning ahead for end of life can seem an upsetting and daunting thing to do, particularly when dealing with a diagnosis of dementia. However, being prepared can be really helpful both in the lead up to end of life, and also after the person has passed away.

When making plans for the future, people often talk about ‘having their affairs in order’, and can focus on practical arrangements such as finances and funeral plans. Whilst this is important, thinking about and planning arrangements for day to day care as needs change may help you to feel less pressured to make changes at an emotionally difficult time. Preparing for emotional changes may also help you to cope better during difficult times.

Planning ahead as much as possible can help you to maintain a sense of control, and may even provide a sense of relief, and a source of comfort, to know that you were able to continue to support the person, and to respect their wishes. However, having fixed plans in place can be daunting for some people – but may bring comfort to others. Flexible plans which support changes in needs and wishes may be helpful.

Think about what kind of things you and the person you support might want to plan.

The following list is offered as a starting point but there may be other things that you think are important to consider:

Advance care plan

  • Have you been able to talk to the person and plan ahead for their care?
  • Are there any particular things that they want or don’t want?
  • Has someone been appointed as a lasting power of attorney for Health and Welfare and/or Property and Financial Affairs (Lasting Power of Attorney is explained in Week 1 Steps 1.9, 1.13 and 1.14).
  • Has the person made a will?
  • Are financial arrangements in place to cover the cost of a care home placement?
  • Are financial arrangements in place to cover the cost of funeral arrangements?

Place & environment

  • Where does the person want to be at the end of their life?
  • Are there any particular things that the person would want around them?

Spiritual beliefs

  • Is the person religious or spiritual?
  • Would they want a faith leader to visit them towards the end of their life?
  • Would they want any religious rites or blessings to be administered?

Friends & family

  • Who does the person want with them at the end of life?

Funeral arrangements

  • Are there any particular songs, readings or prayers that the person would want at their funeral?
  • Would they want a religious or humanist funeral?
  • Do they want to be buried or cremated?
  • Do they want their ashes to be held somewhere in particular or to be scattered in a specific place?

You might want to think about who will support you and how they can help. Involve friends, families and services who provide support. The International Alliance of Carer Organisations may help you to find out what support is available in your country. Many countries have their own websites for carer support. In the UK Carers UK offer advice, information and support for family carers and may be a good place to start.

Thinking or talking about happy memories may also be an important source of comfort.

You might create a photo album or a box of sentimental and important belongings from or about the person living with dementia which you can keep and look back on.

  • How might you use the list above?
  • How might it help you in your situation?

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This article is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University