News and presentations from today's Improving End of Life Care for People with Dementia.
Learning from Lived Experience
Chris Roberts, Person Living with Dementia, EMBED-Care Steering Group, Vice Chair European Working Group of People With Dementia, Alzheimer Europe & Co-founder 3Nations Dementia Working Group
The most absolute certainty in life is that no one lives forever, but nobody wants to discuss it. To improve end of life care we must be open and talk about this important stage of our lives, how, what and where, is needed to be known by everyone in your family and all involved in your care.
We only have one chance to get this right.
Chris shared his experience of liveing with Dementia;
"When you are living with Dementia it’s easy to shut yourself away from the world – but speaking about it, this really helps"
"I knew nothing about dementia when I was diagnosed, I felt guilty, I felt depressed"
"It’s an invisible illness until the later stages"
"Relatives are left with guilt when the time comes for extra care"
"There are some wonderful homes – I have chosen mine!"
"In my house we concentrate on what I can do and not what I can’t"
"When you are diagnosed with an illness which is possibly life shortening, your world gets turned upside down"
"You don’t know what you don’t know, you need to make decisions when you have capacity that way the family do not have the guilt"
"We need to talk about death to stop all the confusion and all the worry"
Putting personal experience first
Ian Donaghy, Author, 'DearDementia' & 'The Missing Peace'
Ian Donaghy’s infectious enthusiasm & humorous empathetic approach have made him a popular conference speaker all over the UK. Barbara Pointon MBE describes him as “Highly entertaining & deeply thought-provoking”.
During a 20 year career teaching young people with learning difficulties Ian was seconded by the Home Office to set up inclusion units in schools for vulnerable students focusing on the individual, celebrating what they can do to raise their aspirations.
Ian took his “focus on the individual” into the world of care in 2009 and quickly used his innovative teaching & learning styles to win Care Trainer of the Year at the British Care Awards.
Ian delivers bespoke learning from for clients as diverse as Yorkshire Ambulance Service, Wilf Ward Family Trust, Mind, local authorities, large care providers, the NHS & has recently hosted the CQC’s Leadership Conference in Westminster.
In 2014 Ian’s book “Dear Dementia: The Laughter & the Tears” was published by Hawker Publications & in under a year has reached 24 countries & been included on the Alzheimer’s Society Reading Well prescribed list of only 25 books for dementia care. Angela Rippon OBE described it as “An inspirational little book…A work of real love”.
In his presentation Ian said:
"With End of Life Dementia we can either be part of problem or part of the solution"
"There are lots of people who at the end of life are terrified to make a decision"
"We have to ask – ‘Are we the problem that means superb end of life care is not happening?’"
"We need to realise that carers CARE, Nurses CARE, Doctors CARE - we need to care for them"
"One thing my wife said to a nurse that changed everything with the care given to her mother at the end of her life was ‘I only have one chance to get this right – please help me’ – This changed everything"
"A lot of people do things focusing on CQC reports.. I say Don’t play to the wrong crowd – Make sure the person you are caring for eyes are lighting up, make sure they are happy"
"We need to realise we have to care for the family members who are having the worst days of their lives"
"It’s not about death, it’s about end of life. We need to make sure the same level of care is given for end of life as it is for birth"
Prescribing to avoid cognitive side effects and delirium and the end of life
Delia Bishara, Consultant Pharmacist, Mental Health of Older Adults & Dementia, South London and Maudsley NHS Foundation Trust
There is increasing evidence that anticholinergic medication is associated with risks in older adults, especially in patients with dementia.
Current NICE guidance on Dementia recommends minimising the use of medicines associated with increased anticholinergic burden and to look for alternatives where possible.
So far, identifying which drugs have an anticholinergic burden on cognition has been a challenge.
This talk will provide an overview of the dangers associated with anticholinergic medication use in older people and introduce a tool and web based app to aid with medication reviews for patients.
Full Powerpoint Presentation
Planning ahead and reducing stress
Sharron Tolman, Consultant Admiral Nurse, North East Cumbria and Scotland Dementia UK
Sharron Tolman, RGN, RMN has over 30 years nursing experience, mostly working with people with dementia and their families in a variety of settings. After completing an MSc Dementia 2014, she became the first Admiral Nurse based in a hospice in the UK and set up St Cuthbert’s Hospice, Durham Dementia Service which won Best Dementia Team Award at Dementia Congress 2019. She joined Dementia UK 2018 to help set up new Admiral Nurse Services and support Admiral Nurses in practice.