The mySupport study
In 2020, I became a member of the Public Patient Involvement representatives on the EU Joint Programme for Neurodegenerative Disease (JPND)-funded mySupport study. The main aim was to adapt, implement and evaluate a previous study intervention, Family Carer Decision Support (FCDS), in six countries. As a former primary carer who cared for my mum who lived with mixed dementia (I cared for her till end of life) this is a very important subject. My mum was refused palliative care by a general practitioner because she had not been diagnosed with cancer.
The Comfort Care booklet and Question Prompt List were developed in Canada in 2005, by family physician Marcel Arcand who practiced in nursing homes. He noticed how families struggled to come to terms with what is good care for their loved ones near end of life. The booklet was devised from research, practical and personal experience. It was a core part of the mySupport study, as it had been identified as an area that needed highlighting and some structural guidance. Palliative care was not readily available to residents diagnosed with dementia and the booklet highlights that dementia is a terminal disease and that a palliative approach to care is therefore appropriate. It provides information about the trajectory of the disease and possible complications, options to manage issues such as feeding difficulties and pneumonia, symptom management and comfort care, the decision-making process, the dying process and grief. The aim of the booklet is to inform family caregivers of the disease progression, to help them actively participate in conversations regarding their relative’s care needs.
The findings from FCDS were:
• Adapt the Comfort Care Booklet and a Question Prompt List for each country participating in the study.
• Implement the Comfort Care Booklet with Question Prompt List in nursing homes for people with advanced dementia using Family Care Conferences or meetings.
• Evaluate the impact of the intervention on family carers and nursing homes.
This work was all carried out during COVID-19, so all our communication was through Zoom and emails. I feel this experience has strengthened our collaboration and shown that it is possible to achieve very important research through the power of technology. Find out more about the mySupport study: https://mysupportstudy.eu/
The In-Touch trial
The University College Cork (UCC) School of Nursing and Midwifery recently hosted a kick-off event for the In-Touch trial, which has been granted EUR 7.5 million in funding from Horizon Europe. In-Touch will run over five years, from 2024 to 2028, and the intervention being explored in this trial builds on the work of the mySupport study. I was delighted to attend the kick-off meeting in my capacity as a Public Patient Involvement representative, alongside Helen Rochford Brennan, who is living with dementia and is also a Public Patient Involvement representative.
The ambition is that In-Touch will enhance the lives of people with dementia living in care homes through a multisensory care programme approach to improve their dignity and quality of life, whilst also supporting their families in decision making. In-Touch is coordinated by UCC Principal Investigators Professor Nicola Cornally (School of Nursing and Midwifery) and Professor Suzanne Timmons (School of Medicine). It has an international consortium of partners from across the EU, UK, and Canada. Representatives from all partner organisations, as well as patient and public representatives of people with dementia and family members. Director of Namaste Care International, Rishi Jawaheer, and Dr Hanneke Smaling, were invited to share insights on Namaste that will be part of the overall intervention.
In-Touch hopes to enhance care spanning 56 care homes across seven countries and its primary objective is to mitigate social isolation by orchestrating tailored, group-based, multi-sensory activities based on Namaste’s approach for individuals with advanced dementia and their families. It will provide an opportunity to discuss prognosis and fundamental aspects of care. Helen Rochford-Brennan commented: “It was an honour to participate in the follow-up session of the mySupport study, now recognised as In-Touch, at University College Cork last week. The intersection of Palliative Care and dementia is an area which I feel is often overlooked, making this experience particularly enlightening for me as an individual living with Alzheimer's. Engaging with researchers from seven different countries allowed for a comprehensive discussion on the challenges inherent in implementing research findings to effect meaningful change in long-term care settings.
The potential positive impact on the quality of life for those receiving palliative care can be profound. Personally, I am deeply appreciative of the opportunity to contribute the perspective of someone living with dementia to the research process and collaborate with such esteemed researchers.”
For more on this story, see: https://palliativeprojects.eu/in-touch/
Twitter: https://twitter.com/InTouchEU
LinkedIn: https://www.linkedin.com/company/in-touch-horizon-europe/
Pictured: Dr Irene Hartigan (leading the In-Touch co-design and development of education across the seven implementation sites), Carmel Geoghegan, Helen Rochford-Brennan and Pam Halliday (PPI representative from Canada on the mySupport study)