Adjusting dementia support studies in response to the COVID-19 pandemic
Certain Join Dementia Research studies have adapted to an online offer so that researchers can continue to gain important insights, and ultimately help to support those living with dementia during the COVID-19 pandemic.
Beyond the margins
Researchers at Durham University, the University of Edinburgh and their partners Innovations in Dementia are developing and testing a seven week programme to support people living with a diagnosis of dementia to live well.
The programme, funded by the Alzheimer’s Society, aims to support those taking part to achieve their own personal goals.
Taking part involves connecting with a group of up to ten other people with dementia with the support of a facilitator.
This happens for an hour each week over a seven week period and given the current COVID restrictions, these are delivered either via Zoom or telephone. Each weekly session has a similar structure including a welcome, listening to other people’s stories on an allocated topic, and hearing from guest speakers who live with dementia. Participants receive a personalised letter with a session summary and points to take away.
The programme covers topics such as; ‘Making sense of what is happening to you,’ ‘Staying connected with family, friends and new friends’ and ‘Getting on with living your life.’ Within these topics the discussion focuses on what is most important to those taking part.
The sessions are recorded for research purposes. Participants are also be asked to take part in a research interview before the programme starts, on week seven and three months after the programme ends to help understand the difference it has made to them.
How to get involved
The study is recruiting in Hartlepool and Doncaster and is looking for volunteers who live at home and have a diagnosis of any type of dementia.
Care partners are welcome to support participation.
Chief Investigator Professor Charlotte Clarke, Executive Dean (Social Sciences and Health) at Durham University says:
“The Beyond the Margins research study is an exciting opportunity to give those affected by dementia more control of their own lives.
“Participants can now take part from the safety of their own home and I would like to encourage those living with dementia to consider contacting us to find out how they can make a difference to our understanding of dementia care during COVID times.”
This study is recruiting until 15 March 2021.
Memory services in the COVID-19 climate
Memory assessment services have been impacted by the COVID 19 pandemic; diagnosis appointments and assessments have been cancelled. Different models are therefore being used to support assessment and diagnosis of dementia. Researchers at Leeds Beckett University are looking into the impact of these changes on people with dementia and their carers.
An online anonymous study ‘Memory Assessment Services in the COVID-19 Climate is collating the views of people who have had an assessment or diagnosis during the current restrictions. It takes 10-15 minutes to take part and can be done from home at any time.
The questions ask participants about their experiences of being referred to the Memory Assessment Service, any support they have received since March 2020 and how they would feel about attending an appointment that may be done online or on a later date than you they hoped for.
The study is looking for participants with dementia and their family members based anywhere in the UK. Participants must have attended a Memory Assessment Service appointment since March 2020 or be waiting to attend one.
Improving patient experience
Chief Investigator Sarah Smith, Reader in Dementia Research, Leeds Beckett University says:
“Looking at the impact of the COVID-19 pandemic on the experience of people accessing or waiting to access memory services provides us with an opportunity to adapt our models of care and optimise the experience for people accessing services and receiving a diagnosis of dementia during these challenging times.
“It also provides an opportunity to reflect on elements of COVID compliant services that may improve accessibility to memory assessment services and patient experience.
“The findings from the study will be shared with memory assessment services across the UK and on social media channels.”
The study is recruiting volunteers up to 31 January 2021.
To find out if you are eligible to join both studies, as well as other dementia studies, sign in to your Join Dementia Research account or if you’re not already registered, sign up today!