We introduce two researchers who are working to improve end of life care. Their research is just one example of how Alzheimer's Society is connecting researchers around the world to tackle dementia.
The final years, months and weeks of life of a person with dementia can be a confusing and isolating time.
Dr Elizabeth Dzeng and Corrina Grimes are researchers dedicated to improving end of life care for people affected by dementia.
Motivated to create change
Working as a junior doctor in New York, Elizabeth saw that people with dementia were often subjected to overly aggressive medical treatments without any chance to improve their condition.
These treatments could also worsen their quality of life in their last days.
Dr Elizabeth Dzeng told us, ‘I felt a great deal of moral distress providing intensive care unit level treatment for people with advanced dementia who had not previously expressed their wishes for the type of care they’d like to receive.'
'I felt that I was not acting in their best interest by providing burdensome treatments such as mechanical ventilation and resuscitation when it could not improve their condition and may negatively affect the quality of their remaining life.’
- Dr Elizabeth Dzeng
The majority of Corrina’s professional career has been devoted to improving palliative and end of life care. She is currently Palliative Care Clinical Lead at the Public Health Agency, where she co-leads the Northern Ireland Palliative Care in Partnership Programme – Palliative Care in Partnership (RPCP).
The aim of this partnership is to design and support the delivery of linked-up services that enable people to have improved quality at the end of their lives.
Last year, both Elizabeth and Corrina were awarded a prestigious Atlantic Fellowship from the Global Brain Health Institute. This gives future leaders in brain health and dementia the skills they need to make a difference.
Those on the fellowship spend a year between the University of California, San Francisco and Trinity College Dublin, learning about economics, epidemiology, law, ethics, leadership, neuroscience, public policy and statistics.
Following their studies, this select group needed pilot funding to take their ideas into the real world. In partnership with the US Alzheimer’s Association and Global Brain Health Institute, we funded 21 of their projects in 10 countries.
These included research into how the experience of being a Syrian refugee affects thinking and memory, the impact of better gut health on dementia symptoms, and how music could improve quality of life for people with dementia.
Our collaboration with the Global Brain Health Institute and Alzheimer’s Association is just one example of our commitment to international solutions for the worldwide issue that is dementia.
Although funding UK-based biomedical and care research is our priority, working with global partners takes our investment further, connecting us with many more great minds and ideas.
We’ve also built partnerships across the world through the EU Joint Programme on Neurodegenerative Disease Research. Through this, we’ve joined forces with organisations in 15 countries – including Australia and Canada – and funded 10 new international research projects, eight of which will take place in the UK.
The final stages of dementia can be difficult for medical and care professionals and for carers to identify.
Palliative and end of life care has tended to be more closely based on cancer, yet all those with an advanced and progressive condition, like dementia, can benefit from a palliative care approach.
Corrina recognised that it was important to help GPs and the primary care team to have a way to identify people with dementia who would benefit from a palliative care approach. She also knew that the person’s clinical record often holds indicators of their likely future need, such as swallowing difficulties and recurring infections.
To determine whether reviewing medical notes could be done more efficiently, Corrina is using a tool called AnticiPal. It shows how clinical data that is routinely collected by the GP can be used to help identify people in need of planning and care co-ordination.
Encouraging results have been reported from research testing this method in Edinburgh. Corrina has recruited 30 GP practices across Northern Ireland to take part.
Corrina was inspired to work with us because we share her commitment to ensure that research findings are used quickly to make a difference in the real world.
‘We hope that the AnticiPal tool will help to alert GPs to the palliative needs of people with dementia in their care and support discussions and care planning.’
- Corrina Grimes
The right care
Having seen how, even with the best intentions, end of life care can result in people with advanced dementia receiving unnecessary and even distressing treatments, Elizabeth wants to understand why this happens and what can be done to reduce it.
To do this, she’ll be comparing care provided in four hospitals in the US, two in France and two in the UK. This type of study, called ethnography, involves observing hospital staff and people affected by dementia in their day-to-day activities and interviewing them. This should help her to understand why this kind of burdensome care gets put in place when neither doctors nor patients want it.
In the US, doctors might feel an incentive to promote expensive and unnecessary treatments. In any country, both doctors and carers might face a conflict between wanting to do what is best for the person and feeling they must do ‘everything possible’. This could be made worse if doctors haven’t clearly explained the risks and benefits of various treatments.
Elizabeth’s previous research focused on the way clinicians approach end-of-life care in the US and UK. The culture of hospitals in the US tended to prioritise patient choice regardless of whether the treatments would be beneficial. UK doctors tended to make treatment decisions based on the patient’s best interests. Her work highlights the benefits of learning from practices in other countries.
Including French hospitals in her current study will allow Elizabeth to compare a system that more closely resembles the UK’s. She hopes that her work will highlight how the attitudes of medical professionals can be changed to empower people with dementia and their families to make the best informed choices.