The ARC KSS Living Well with Dementia theme held its very first annual stakeholder dementia day on 30 June.
Jointly chaired by ARC KSS’s Living Well with Dementia Implementation Manager, Kath Sykes and Rebecca Atkinson, ARC KSS Living Well with Dementia Research Fellow, the event included a host of different speakers from within the ARC, as well as from partners and colleagues from across the region.
Dr Naji Tabet, ARC KSS Living well with Dementia Theme Lead opened the session and introduced the speakers, which included:
Dr Stephanie Daley, Lecturer in Older People’s Mental Health & Education at Brighton and Sussex Medical School and Dr Ben Hicks, Research Fellow and Programme Co-ordinator the DETERMIND project, Brighton and Sussex Medical School, showcased the combined findings from their two studies: A nested Time for Dementia sub study and the DETERMIND COVID study which both illustrate the impact of COVID-19 on people living with dementia and their carers at various stages of the dementia journey.
Together, these studies recruited almost 350 families across Kent, Surrey and Sussex, and found seven main themes as a result of changes due to COVID-19:
- Decreased Social Interaction due to lockdown
- Variable Support due to impact on Services including the voluntary sector
- Deteriorating cognitive and physical health due to reduced physical and cognitive activity
- Decreased carer wellbeing due to unmet carer needs
- Difficulties understanding COVID-19 and unclear messaging
- Limited impact for some, as some people were able to adapt well and find new ways of doing things
- Trust and relationship with care homes was important for carer well-being.
The researchers, a Lived Experience Advisory Group (LEAP) who have been involved from the design stage and the ARC KSS implementation Manager for Living well with Dementia, are now developing a key messages document and video for services that will help inform dementia and carer strategies in future.
Dr Gosia Raczek, Honorary Senior Clinical Lecturer at Brighton and Sussex Medical School and a Memory Assessment Physician, presented the findings from her study which explored patient and clinician satisfaction with remote memory assessment.
The study was funded by ARC KSS and was developed in collaboration with clinicians and academics who had to respond rapidly to COVID-19 and find ways to make sure assessments for dementia were possible during lock down.
Patients and carers reported high levels of satisfaction with remote memory assessment. Patients, carers and clinicians preferred video to telephone assessment because it facilitated better connection between the physician and patient, and clinician communication was important. Overall, the findings show remote memory assessment should continue to be offered as an option for these assessments, even beyond the pandemic.
The study has a number of recommendations for conducting successful remote memory assessment and is developing a Remote Memory Assessment tool kit and patient video which will give commissioners, services, clinicians, and patients more confidence in undertaking these assessments remotely.
Other speakers at the event included:
- Dr Josie Jenkinson, Consultant Psychiatrist for Older People, Ashford and St Peter’s Hospitals Psychiatric Liaison Service
- Dr Catherine Evans, Reader and Nurse Consultant in Palliative care at King’s College London and Sussex Community NHS Foundation Trust, and
- Professor Kathy Greenwood, Professor of Clinical Psychology at Brighton and Sussex Medical School.
Community of practice
In the afternoon, the ARC KSS Living Well with Dementia and Digital Innovation teams held a dementia and digital technology community of practice event that brought together public representatives, services, commissioners, academics and industry to explore gaps and opportunities for future research focus.
The audience were then invited to break out into smaller groups to discuss the opportunities and challenges with technology in healthcare and dementia. The content of these discussions and the themes that emerged are currently being reviewed and will be shared shortly.