Shaping End of Life with a focus on dementia – conference write up

Leading academics and clinicians, including Dr Karen Harrison Dening, Head of Research and Publications at Dementia UK, Professor Mari Lloyd-Williams, Professor of Palliative and Supportive Care, University of Liverpool, and Consultant, Dr Emma Hall and Nurse Consultant, Helen King both from St Christopher’s, described past and present provision and made the case for what the sector needs to do to address future needs.

Their professional expertise was complemented by five experts by experiences – all of whom shared valuable insights into what it really means to care for someone living with dementia and how they’d like to see service providers improve their offer.

The following is a summary of the 10 key takeaway messages from the day, including historical context, advice, and calls to action.

1. The lack of understanding of and stigma attached to dementia persist

The stigma attached to dementia was exemplified by what happened during the pandemic when many people died with ‘underlying conditions’, Prof Llloyd-Williams said, adding: “It undervalued people with dementia, making it sound like it was ok that they died and like no one really cared.”

Malcolm Gill, Croydon Community Coordinator at St Christopher’s, shared his story of caring for his mother who lived with dementia. How the diagnosis took a year and how the stigma attached to it in the South Asian Community is illustrated by the word used in Hindi for dementia, which translates literally as madness.

To help others, Malcolm has launched Dignitate, an online platform providing education and support about dementia and to address the cultural stigma.

2. Dementia is a terminal condition and we must recognise it as such

Almost 1 million people in the UK are living with dementia, it is the single leading cause of death and there will be four times more people living with it by 2040.

Dr Hall reported that St Christopher’s is providing care and support for an increasing number of people with dementia and their families. In the last year the hospice cared for 304 people who died with dementia as their final diagnosis and 91% of them stayed in their care home or home – demonstrating that it is possible, with the right support, to enable people to stay in their chosen place. Currently St Christopher’s is caring for 187 people with dementia is their primary diagnosis – representing 15% of all current patients.

Her colleague, Helen King, said: “It’s not different to any other terminal condition, the problem is the vast numbers and we’re scared of that.”  What, Helen added, marks dementia out from many other terminal conditions is the uncertain trajectory as well as lack of both funding, and a universal model of care.

3. Dementia is homeless – who is going to take responsibility?

Dr Harrison Dening described a typical patient and carer’s experience like a game of pinball – being fired off into many different directions and a fragmented system in which even experienced Admiral nurses will only help them navigate a part of. This raises questions like which individuals and organisations will take responsibility for the important task of future planning.

She said: “Dementia is homeless. It has almost been evicted from mental health and no one has created a home for it. We need stakeholders to come together.”

4. None of us can do this alone but we can and must all do something

Prof Lloyd-Williams said dementia only currently accounts for 0.1% of hospice deaths.

While many people with dementia don’t realise hospices can provide them with care and support, they also don’t understand that that they can also dip in and out of hospice care, Prof Lloyd-Williams added.

Hospices and other providers of specialist palliative care need to collaborate more with other organisations, she said, adding: “Hospices collaborate well with trusts, but do we know about all the other organisations that have been supporting families for decades with dementia? Currently we stick to what we know and aren’t taking the opportunity to reach out and learn. If we truly want to be part of our local communities we have to work at grassroots level.”

Citing the example of some care homes and hospices opening their doors as warm hubs, she added that hospices had an opportunity to bring in more people from the cold – literally and metaphorically.

Dr Hall shared three brief case studies, demonstrating the range of services people with dementia can access at St Christopher’s, including complementary therapies, support with advocacy with other care agencies as well as carer and care home staff education.

Helen King, of St Christopher’s, said: “Dementia is a societal issue. We’re not the saviours and there are lots of great services out there. The biggest cog in the wheel is community action, but that doesn’t mean we shouldn’t be involved.”

5. We need better education and training

Malcolm Gill reflected the experience of many carers when he said: “It made me understand the whole system is not dementia educated or friendly. I could see the signs and so eventually realised I had to educate myself.”

This included learning a whole new language to navigate the fractured pathway he and his mother were on and enrolling on a relevant diploma course. He says many of the nurses they encountered didn’t understand dementia which resulted in impersonal care for his mother.

Dr Harrison Dening pointed people to the Hospice UK Dementia End of Life Care Community of Practice as a good resource and learning opportunity.

Helen King said it was incumbent on all organisations to bring the whole workforce on the journey, turning learning into dementia friendly practical skills.

She gave examples of some of the ways in which St Christopher’s is responding, describing the network of dementia ambassadors raising awareness across the organisation.

In the table discussion at the end of the conference, many called for dementia to be included in the school curriculum.

6. We must include patients and carers at the heart of everything we do

Introducing four people who shared their experience of caring for someone living with dementia, Mary Hodgson, Head of Community Action at St Christopher’s, said: “Lived experience can challenge us to question and to change, it allows us to know what actually happens to people.”

Malcolm Gill said he was told that there were MDT meetings to discuss his mother which never included them. “We need a family-related approach,” he says. “We know what’s going on as we deal with it at home every day,” he added.

Prof Lloyd-Williams said: “How can we decide what’s right for people if we don’t ask them,” she added. “Hospices talk about being person-centred a lot, but we don’t actually deliver on it.”

Most importantly, Prof Lloyd-Williams said, hospices and other care providers must be open and transparent about the services they provide, citing the example of a hospice that said it offered respite but then refused a patient, describing it as cruel to advertise a service and then withdraw the offer on the basis that someone with dementia might be ‘busy’ at night.

Dr Hall stressed the importance of establishing people’s wishes as soon as possible so as inform ongoing care provision.

7. There is good work going on – let’s share and celebrate it

Prof Lloyd-Williams highlighted examples of compassionate communities in which ordinary people are coming together to do extraordinary things, picking out Compassionate Inverclyde for special mention for its No One Dies Alone project, which sees volunteers matched with people with dementia and they stay with them day and night right up to the end of life.

She also said that while post-pandemic many organisations had stopped their day-care services, depriving carers of valuable respite, some innovative initiatives were springing up. Like at Wakefield Hospice, which runs one group for people with early stage dementia and one for those with advanced dementia. They provide these as a paid-for service – a novel initiative for a hospice but one worth considering in these cash-strapped times, she said.

8. We must listen to and value carers more

This recurring message rang out throughout the day.

Heather, one of the four other experts by experience who shared their story with the conference, said she didn’t have a PhD in anything erudite except, crucially, caring. She added: “It has been a journey and one on which you don’t know when or where the end point will be.”

Jill, who has been caring for her husband for 20 years, told delegates that she is now using her experience as a Carer Champion with St Christopher’s. This involves speaking to other carers who have been referred to the hospice to let them know what else the hospice provides and for them to share their experiences.

Jarmilla, the third of the experts by experience, said her father had received very good physical care, adding: “But I felt totally alone and neither of us got help with our mental health.”

Malcolm Gill says he experienced depression, guilt, compassion fatigue, anticipatory loss and depression caring for his mother and received little or no support.

9. Enable people to live in the moment

Helen Simmons, Chief Executive of St Christopher’s, said that by valuing key things like Comfort, Identity, Inclusion, Attachment and Occupation, enables professionals to help people with dementia live in the moment. “If someone loves to laugh they will still want to laugh. If someone loves to dance someone needs to ask them to dance and to dance with them – we need to validate people through our actions.”

10. Move from intention to action

Prof Lloyd-Williams said: “Hospices have a moral duty to do more and facilitate others to do it as they can’t do it all themselves. The future of palliative care for people with dementia depends on what we do now – we can’t afford to sit around.”

For anyone who missed this conference, St Christopher’s CARE has some dementia-specific events coming soon. Find out more here.