Dying with Dementia: lessons from a pandemic

Julia Jones, co-founder of John’s Campaign

If it’s done nothing else, Covid-19 should have helped us become more aware of the difference between end-of-life and death. They are not synonyms: one is a period, the other an event. We’ll all die, we might not all experience end-of-life. Grieving families in the community have been interviewed saying ‘They took him into hospital: I had no idea we would never see him again.’ Their shock is palpable; they’ve had no end-of-life, only death.  Within some care homes there have been weeks when residents have passed away almost wholesale and staff members too. The survivors’ trauma is complex and various: as well as the shock of loss, staff may feel fear of undeserved blame, resentment at the policies that have failed them and anger over the help that wasn’t there. The families who were excluded against their will feel guilt and anger; many of those residents who have survived are living under imposed restrictions which have a continuing negative impact on their well-being. The families who are still excluded see the with anger, anxiety and sorrow. It’s a toxic legacy, emotional ‘long covid’. For all our sakes it must not become structural.

People in care homes will continue to die. There will be many more deaths every week than deaths from Covid-19 but there will only be one per person. Quality matters every single time. Understanding the end-of-life period is key to this. You might want to start by thinking of every resident potentially as being at this special stage. Many people move into care homes because they can no longer cope with 24/7 independence, even with the loving support of their families (if they have this). And their families can no longer cope 24/7 with them. It’s a significant watershed and most are aware, at some level, that this is likely to be their last address.

When my mother died in a care home, staff and family supported each other through the difficult process of active dying and immediately after her death. https://www.caretalk.co.uk/dying-with-dementia/  It was a profound experience, based on mutual respect, complementary expertise and the determination to do whatever was in our power to enable mum to live as well as she could for as long as possible. This should be the special mission of care homes: to optimise life, not existence.

Think for a moment of those who are living with dementia. Dementia is incurable, progressive, terminal (much like life, you might say!) so the concept of Living Well is vital as a conscious counterbalance to the fact that this is the dying of the brain. It can be speeded or slowed but not healed. Some people have described dementia as a long bereavement, a slow death.  I think it can be more usefully considered as a long end-of-life, bucket-list time, time for special treatment and the chance to lay down memories in those whose minds can still receive them.

In Beloved Old Age I explored the concept of end-of-life as the handover stage in a relay, when the person approaching death needs to connect with the people who will remember them. It’s a way of asserting that their life has had meaning: that death is a passing rather than ‘the End.’ Covid has come rushing in onto the track like an XR protester, disrupting our comfort zones but also challenging us to re-evaluate what matters most.

Even in a pandemic, people in that special time must be given the dignity of choice. It’s our job as paid and unpaid carers to give them whatever they want when their time is running out. Death is a uniquely personal as well as universal experience. The end-of-life pathway must be personal as well.

Julia Jones is co-founder of John’s Campaign,  a UK-wide movement which advocates for the unrestricted welcome and involvement for the family carers of people living with dementia.

For more information visit www.johnscampaign.org.uk/post/i-feel-trapped

Edel Harris





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