Dementia during COVID-19 – the lived experience perspective
A Scottish study which recruited participants through Join Dementia Research has published their findings on the effects of the adapted dementia diagnosis and consultation processes during the COVID-19 pandemic.
The research has been co-produced by the University of Edinburgh and the Better Understanding Dementia Diagnosis (BUDDs) lived experience group, and funded by UK Research and Innovation (UKRI). It highlights common experiences shared by people with dementia, their carers and healthcare professionals throughout the pandemic, and outlines key lessons learned over the last 3 years.
Virtual consultations, innovative practices, and the preciousness of time to people with dementia and their support networks are mentioned throughout the report, painting a now familiar picture of healthcare during a pandemic.
The findings also recognise that many well-established principles of dementia care remain as important as ever. Empowering people to do what they love for as long as they can after a dementia diagnosis is still a top priority, and every effort must be made to give a diagnosis in person.
Responses from interviewed participants showed post-diagnosis support greatly varied during the pandemic as well. Written guidance and online support groups were often relied upon when face-to-face consultations were limited. These were highly valued by some patients and carers, while others felt overwhelmed with information and that online sessions couldn’t fully replicate all aspects of dementia care.
Involving the public is key to future research
Elaine Harley, a member of the BUDDs lived experience group, has been involved in the project since it began in early 2021.
With a professional background and personal experience in dementia care, Elaine was conscious that early indicators of dementia and potential diagnoses may become hidden during the pandemic. She was eager to ensure this study gave people with a dementia diagnosis, their carers and healthcare professionals a platform to voice their experiences from this particularly difficult time.
She said: “Participating in this research really highlighted to me how quickly things can change for someone with a dementia diagnosis, and why it’s so important to keep improving how we involve lived experience groups and the public in research.
“Involving lived experience groups gives researchers access to such a breadth of knowledge of different illnesses and conditions. It can be a time-consuming process and requires patience, but these are prices definitely worth paying. I would definitely encourage all researchers to look at how they can better involve the public in their research.”
Lived experience groups add “extra dimension”
Dr. Tom Russ, the study’s Principal Investigator and Director of Alzheimer Scotland Dementia Research Centre, added: “It is important we understand how the changes to dementia assessment and diagnosis services during COVID-19 have impacted people with dementia, their care partners and healthcare professionals. Learning from these people’s experiences is key to helping us continually improve dementia care in future.
“Co-producing the research alongside the BUDDs lived experience group has given us invaluable insight into the lives of people living with dementia. Their contributions have added an extra dimension to the research, and we believe this has only strengthened our findings.”
Join Dementia Research connects researchers with people who are interested in taking part in dementia research. Sign up or log in to Join Dementia Research to find out which studies you might be eligible for.
Researchers from the University of Edinburgh have published the ‘Understanding dementia diagnosis during the Covid-19 pandemic’ report, in partnership with the BUDDs lived experience group.
BUDDs is made up of a select group of people from across the UK who have an interest or lived experience in dementia. The group are aged between 30 and 80.
The researchers and BUDDs group interviewed 11 people who received a dementia diagnosis during the pandemic and 5 care partners from across the UK. Most of these participants were recruited through Join Dementia Research.
In addition, the research team interviewed 12 healthcare professionals who delivered dementia assessment and diagnosis services during the pandemic.
Visit the Alzheimer Scotland Dementia Research Centre website to read the full report and an “at a glance” summary document. The research team has also produced 2 animations and a 6-episode podcast series, which you can also access through the above link.