Empowering Dementia and Palliative Care

Experts shared powerful, real-world insights on transforming dementia and palliative care through compassion and creativity.

By focusing on patients’ unique life stories, building strong, collaborative care teams, and empowering families, they highlighted fresh, impactful ways to make end-of-life care more meaningful.

Nine Key Lessons from Experts at the St Christopher’s and Nightingale Hammerson Conference

It was midway through the second day of this two-day conference that Consultant Clinical psychologist Dr Ally Tomlins shared the story of a care home resident that literally and metaphorically illustrated the purpose of the event.

Colleagues were at their wits end, Ally said. This elderly man with dementia had been increasingly disruptive and had embarked on the destruction of all the furniture in his room. Ally set about finding out more about who he was and had been. Establishing that he’d spent his working life as a handyman, Ally ‘prescribed’ him a toolbox. Instead of destroying furniture, he started fixing it. By taking time to understand his life story she was able to improve life for him, his fellow residents and the staff.

As a whole, the conference, hosted jointly by St Christopher’s and Nightingale Hammerson, provided delegates, who included care home and hospice staff as well as GPs and commissioners, with a box full of tools to give them the knowledge, skills and confidence, as well as motivation, to work more effectively, individually and collectively to provide better palliative and end of life care for people with dementia and frailty.

“How can we work together to be good detectives so that we can give individuals the best chapter of their life with us?” Ally asked the room.

The outstanding programme of speakers provided delegates with nine ways to fulfil this shared ambition.

Have the confidence and courage to speak up

The first session, presented by Helen Simmons, CEO of St Christopher’s (and former CEO of Nightingale Hammerson), and Nuno Santos Lopes, Director of Research, Innovation and Community Engagement at Nightingale Hammerson, gave an insight into the ethos that facilitates 98% of residents at the south London home to die in their preferred place.

They told a story to illustrate the lengths to which staff go to help residents to live out their days at the home where they will recei

ve better care. It related to a 92-year-old woman who’d lived with themfor many years and was then admitted to hospital for treatment in 2021 and got COVID. Helen in her capacity as CEO had to get involved in the three-week battle to have the woman discharged back to the home – where she wanted to be.

“We persevered and managed to get her home where she lived for another six months. We knew she would die but it was about how she died. She lived to her last day and we and she valued those last days,” said Helen.

This example was also illustrative of Nightingale Hammerson’s status as an inspiration to other care homes and a potential font of knowledge for hospices less familiar with caring for people with dementia.

Identify the dementia experts and define roles to avoid duplication

Helen said the ageing population means whereas once hospices cared almost exclusively for people with cancer, now more than half of its patients have a non-cancer diagnosis – many with dementia and other more complex conditions with a far less predictable trajectory.

Care homes, meanwhile, are where 25% of the population now die and almost half (47%) die with dementia.

Helen added: “There are 9,000 care homes and only 220 hospices. The best nursing homes can join forces with hospices on an education process to ensure we all have the confidence to help this growing group at the end of life.”

She added that upskilling care homes would provide capacity to meet future need and minimise unnecessary hospital admissions.

St Christopher’s and all hospices should be engaging more closely with colleagues in social care to educate each other and to establish the distinct and different evolving roles needed for tackling the future of ageing.

Ask: Do the drugs work best?

In a powerful account of lived experience, Ruth Rolle, 63, who had a chronic debilitating disease, recounted her experience of respite care at Nightingale Hammerson, how it’s positively affected her health and influenced her long-term wishes.

“I just knew it was the place to be the first time I visited. So, I kept coming back. It’s the quality of care, dedicated staff and adherence to Jewish traditions and spiritual needs. They believe in what they’re doing…it is my second home. In fact, my visits there provide better pain relief than fentanyl and I know when the time comes, it’s where I want to die.”

Ruth’s story illustrated the point that when care homes are at their best they will be the preferred place of death over a hospice, as it’s where residents can feel more at ‘home’.

Several of the clinician speakers argued in favour of deprescribing. In the most detailed of these presentations, Clemence Muchingaguyo, Registered Manager, Nightingale Hammerson, asked attendees: “Why do we prescribe so many drugs to people over 65?”

Clemence Muchingaguyo, Registered Manager, Nightingale Hammerson

He added that, with an increased risk of falls, disability and higher costs, professionals need to  assess the drugs’ benefits and adverse effects and then summon the courage to challenge and collaborate with GPs and families in order to achieve the ultimate goal of the best interests of the individual.

You can’t expect people to care if they’ve not being cared for

Dr Ally Tomlins emphasised the importance of seeing the staff team as one of the three client groups she is responsible for. Understanding them, their story and needs, is as important as getting to know the life story and wishes of residents. “Look after the staff, and you’re mostly there with the quality of the care,” she added.

The best care I’ve seen is joined up

These were the words of Jodie Adkin, Associate Director of South East London Integrated Care Board (Bromley), who, along with colleague, Sara Quirke, offered her insights from the pilot programme in the borough. It’s seen the formation of a care home MDT, consisting of a geriatrician, pharmacist and mental health specialist and among the many tangible benefits have been deprescribing and fewer ambulance callouts.

“By bringing different skills together, colleagues are supporting each other to make informed, integrated decisions. We need the whole system to work together for people who really need and deserve palliative care.”

Dr Ros Taylor, MBE, Medical Director, Harlington Hospice, expanded on this point: “The future has to be about partnership and shared purpose. Care homes haven’t shared so we need to be brave on this and think about who your new partners could be.”

We need to think differently – don’t be afraid to change your practice

No one offered a much more different way of thinking thanGill Horne, Programme Director Care Services, Rowcroft Hospice. She shared its plans for transforming the slightly old-fashioned 12-bed hospice set in 23-acres of beautiful rolling Devon hills into a somewhat futuristic village which will include a 60-bed nursing home divided into 10 households and including a village green and shop as well as a nursery – thereby helping to create an intergenerational care model.

As if this wasn’t radical enough, the design of the nursing home has been heavily influenced by the preferences of people with dementia and their families who participated in a number of workshops. To reduce costs and increase effectiveness, they’re also investing in technology, using AI to allow residents to leave the property where appropriate and to monitor their levels of hydration. Patients and families fed into this decision-making process too.

Engage with and empower individuals and their families

The conference heard further anecdotal and evidential support for being far more inclusive with patients and carers – remembering that there are 700,000 dementia carers in the UK. Dr Zena Aldridge, Social Care Nurse Fellow, Nursing and Midwifery NIHR, pleaded with delegates, saying: “You hold the keys and can open the door for them.

Trevor Solomon shared his experience of caring for his wife Yvonne who was diagnosed with early onset Alzheimer’s in her 50s and of the role he plays as critical friend to the care home she’s lived in for the last five and a half years, stressing the importance of working with care home staff rather than against them.

“I am one of the team, not just the man playing the bills. However well qualified they are, care staff don’t know everything about dementia caring,” Trevor said bluntly.

Meanwhile, Suzy Webster talked about the slightly more unusual care set-up she and her family established when her mother’s dementia meant she could no longer live independently. Her mother moved in with Suzy, her husband and their two young daughters.

“Dementia isn’t all about doom and gloom. We have many moments of joy and the kids learned what it means to care and to wait,” Suzy said.

When, out of the blue, the agency told Suzy they were withdrawing all care, they had, contrary to her mother’s Advance Care Plan, move her into a care home.

“It was devastating, but the care home was fantastic. They took us in and held us through the hardest points and listened to us.

“It wasn’t ideal but was the best we could get. They talked us through end of life care about which I had no idea and they allowed me to be a daughter again. We didn’t want her to be there, but when she died three months later, there were no regrets and no guilt, and we know we did the best thing because they cared for her so beautifully.”

Dr Clare Ellis-Smith, of the Cicely Saunders Institute, provided further evidence of the positive impact of engaging with patients, carers and care staff to achieve holistic care. Early findings, she said, show that the EMBED-Care framework she and colleagues have developed, that includes a comprehensive assessment of the individual, priority setting and an alert system, has empowered relatives to manage symptoms themselves.

“Family members really wanted to be involved and were surprised at how good it was, supporting them to manage some of the symptoms themselves without having to speak to practitioners,” Clare said.

We need to talk about dementia, death and dying more

More than half of the UK population don’t know that dementia is a terminal disease and 94% are unaware it’s the leading cause of death. So, said Professor Catherine Evans, Professor of Palliative Care, Director of the Cicely Saunders Institute, it’s not surprising only a third of people with dementia had their palliative needs recognised by primary care and 38% died in hospital.

As well as identifying continuity of primary care as a means of increasing access to palliative care for people with dementia, Catherine said: “We all have a responsibility to advocate for change for people living with dementia to receive the right care when the time comes.”

This was echoed by Zena Aldridge who said: “We all have a responsibility to talk about death and dying more to create a societal shift.”

Be research active

Imagine, said Zena, if all 33,000 social care nurses participated in just one small piece of research, rather than regarding it as the sole preserve of academics. Without evidence provided by research nothing changes, she argued.

“Academics love to come in and do their research in social care, but we need to see more for practice by practice, and we have to do this if we are to change the tide.”

 

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This article is republished from the St Christopher’s website with permission.