Alzheimer's Society Innovation Hub

Resource for supporting end of life conversations

Conversations around end of life are not easy.

  • For the person with a diagnosis they are scary, confusing, and potentially depressing.
  • For the family they can be awkward, especially if they are trying to put a positive face on for the person they support.
  • Sometimes professionals are useful people to talk to, or sometimes they are strangers who people feel they don't want to share such personal things with.
  • For many, it's easier not to have these conversations at all.

 

However conversations about the future can help people. It can help them:

  • Feel they have control on an uncertain future as they put things in place now rather than avoid them out of fear.
  • Give peace of mind to people with dementia and those who care for them that people know what to do going forwards.
  • Give an insight into the pathways that their dementia might take them, even while they are quite independent, and what they would prefer.

But there are few resources available aimed at people with dementia to help them know what they can do, and how to go about doing it, in a way that is accessible and friendly, rather than official and scary. 

 

This is the Challenge:

  • To create resources that enable an essential conversation to happen, in a way that is person centered, friendly, and practical.
  • To make sure people know everything they could do, and the pathways through the possible options that might come in the future, without feeling overwhelmed or confused about these options.
  • To give advice, activities and encouragements for families to begin these conversations well, as the first step to talking about these things can be the hardest.

No one knows what the future brings. but no one wants regrets that "if only we'd known...". Enabling these conversations early, and supporting people to take action for their future, can really benefit people's current experience of their dementia as it progresses. But they need something that is tailored to dementia, not just generic (or cancer focused) as most resources are.

End of life is something people with dementia need help to engage with well, and, with the expansion of Dementia Connect, something we should be supporting them to do more and more. Anything we can create that makes this easier, and less scary will be hugely beneficial.

edited on Oct 30, 2019 by David Latcham

Lindsey Ambrose 3 weeks ago

Bindi Dhesi in Dementia Voice Team is currently working with Local Services colleagues and local organisations in West Yorkshire to develop a resource for this sort of thing - taking into account learning from Innovation Team's workshop in a box 'Lift the lid'.

Caroline Branney 3 weeks ago

There's a free online course available ( 9 hours, can be spread over several weeks. It starts again early November) which provides guidance in this area: Dementia Care: Living Well as Dementia Progresses : Future learn website https://www.futurelearn.com/courses/comfort-care

IOTA 2 weeks ago

End of life is scary both those with dementia and their carers. I have done the Future learn course which Caroline Branney mentions, but it really depends on the circumstances and there is no one way fits all. It would be great to have a general guideline published giving information in various locations, i.e If living in Kent this is what you can do and these are the organisations you can approach etc.

Tim Shakespeare 2 weeks ago

This idea has been advanced to the next phase

Tim Shakespeare 2 weeks ago

This idea has been moved back to the current phase

Keith O 1 week ago

Crucial area and one most are uncomfortable discussing so developing tools such as the one mentioned by Lindsey is a way of moving forward.

Lynda Williams 1 week ago

we are doing a lot of work in NI to try and ensure all staff feel confident to have these conversations.I am using a number of aids with my service users like the heart of living and dying conversations ( a bit like death cafes) doing the first of these shortly so fingers crossed they go well. I attended a seminar today on palliative care and people with a learning disability this was hugely interesting and something I will be talking to our steering group about when we next meet, thankfully we had two DFC champions there talking about their experience one of whom is 76yrs old! , both have learning disabilities and both now deliver this training to other people with a learning disability , big up to my colleague Tracy Smyth who trained them, definitely good resources available to staff and for service users would be a boon

Serena Snoad 6 days ago

Sounds like this could form part of a wider piece of work on bringing together existing resources (including the existing forum on Talking Point) and also seeking focussed input from service users to identify gaps and new resources.

Charlotte Williams 6 days ago

I think this idea would be a really beneficial resource, as I know for many this might not be something that they have had to discuss before, and therefore don't know how to approach such conversations.

Roma Miller 2 days ago

The difficulty for individuals is often how to approach end of life conversations and when.
There are a number of great resources available, Dying Matters produce a very good flyer called Time to talk? With a dementia diagnosis there is a limited window of opportunity to plan a persons wishes and preferences. Planning ahead can give a person freedom to get on with living.

Tim Shakespeare 1 day ago

This idea has been advanced to the current phase