Conversations about end of life care for a person with dementia can be difficult, but people living with the condition have been encouraging dialogue.
‘The focus has been on living well with dementia, and quite rightly so. But we do need to focus on the other side of the coin, and dying well with dementia is a very important part of that.’
Those were the words of Keith Oliver – an Alzheimer’s Society Ambassador who lives with dementia – during a recent discussion about planning for the end of life.
These sorts of conversations can be difficult for anyone, and especially for a person with dementia who may not want to dwell on how their condition will progress.
However, there are also benefits to having a plan in place, such as the peace of mind that comes from knowing that your wishes and preferences are recorded and will be respected.
The 3 Nations Dementia Working Group (3NDWG) is made up of people with dementia who use their lived experience to improve the lives of those affected by the condition. The 3NDWG is led by a steering group and has members across Wales, Northern Ireland and England.
Throughout the pandemic the 3NDWG has been hosting a series of dementia webinars, including two themed Living Well/Dying Well. These featured people affected by dementia and professionals talking about advance care planning and end of life.
Nigel Hullah, who like Keith is a steering group member who contributed to the webinars, was among those keen to address this important but emotive issue.
‘We don’t have conversations about end of life, so I wanted to start one nationally about the way people wish to leave this life,’ he says.
‘But we had to get the timing right, as I’d have felt uncomfortable doing it when the pandemic was claiming lives left, right and centre.
‘I thought the webinars were great. It was the genuine voices of people with dementia and carers.’
Speaking on one of the webinars was Jennifer Bute, who ‘had the privilege to walk the path with many during their living well and their dying well’ in the 25 years she was a GP.
Jennifer, who has dementia, underlined the importance of people having a say in their future.
‘I’m aware of the many assumptions that are made about dying well,’ she said. ‘Sadly, often relatives put their own wishes first or don’t even bother to ask people what they might want.
‘The biggest challenge to me is enabling every person with dementia to have the opportunity to speak.’
Julie Hayden, who also has dementia, shared what would represent a ‘good death’ for her.
‘The main focus of my end of life care is that it be as pain free as possible – comfort is key,’ she said. ‘I don’t wish my life to be extended just because doctors can keep me breathing.
‘For me, life is about quality rather than quantity. And quality of life should be a self-determined factor, not to be assessed and decided upon by medics or well-meaning family.’
Nigel discussed advance care planning, where a person records their preferences for any future treatment and care. These can be taken into account when someone’s no longer able to make decisions about their own care.
‘Advance care planning can happen at the most appropriate time for the person and provides a map of how you wish to be treated at the end of your life,’ he said.
‘The important thing to remember is that it’s not a final document, because people’s preferences change.
‘Planning for your death is part of the wellbeing process and people feel better for it, even though it’s a very difficult subject.’
Working with West Yorkshire and Harrogate Health and Care Partnership, Alzheimer’s Society has created a free resource to make advance care planning a bit easier to approach.
The My Future Wishes – Conversation starter pack can help discussions about things like lasting powers of attorney (LPAs), medical decisions and preferences for care. Although the information about LPAs is specific to England and Wales, most of the rest of the pack is relevant to anyone in the UK.
Developed in partnership with people affected by dementia, the pack includes tips for discussing tricky topics alongside advice about how to have your wishes recorded and registered.
‘The pack is designed to break up this unapproachable term of “advance care planning” into manageable, understandable, bitesize chunks,’ says Bindi Dhesi, a Dementia Voice Lead at the Society.
‘If these conversations aren’t being had or even suggested, then people’s choices and wishes aren’t known or recorded.
‘Then, when a crisis comes along, decisions are usually made in haste – potentially by health and social care professionals, and more than likely during a time of high stress.
‘This isn’t right and it certainly isn’t fair, so we want to get people thinking and talking about their wishes.’
Our Living with dementia - Planning ahead booklet explains how a person with dementia can plan ahead.