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‘Carers can’t take a day off in a pandemic – they need our support’: Dementia care research under lockdown

The coronavirus pandemic has brought into sharp focus the desperate need to revolutionise dementia care. Research is needed to make this a reality. Our team at the NIDUS Centre of Excellence are adapting under lockdown so they can continue their vital research supporting carers.

Due to coronavirus, some of our ground-breaking dementia research has been put on hold. But today, life for many people with dementia and their carers is more challenging than ever. As the UK’s biggest charitable funder of dementia care research, our work to support carers has never been more crucial.

Life under lockdown has not stopped the team leading the NIDUS project, based at one of our Centres of Excellence in Care Research at University College London. They have adapted their way of working so that they can continue their vital research supporting carers of people living with dementia at home. 

The impact of coronavirus

For carers, support from family and groups that provided a break from caring responsibilities, have stopped. They are now caring 24/7 and this is impacting their own mental health. But every day we are amazed by the resilience and resourcefulness of the carers and people with dementia we work with.

We know that this time is particularly difficult for family carers and people living with dementia. With services closed, there is more pressure on carers to find alternatives to support, and lockdown restrictions are greatest for older people.

So, there is an even greater need to support carers and help people with dementia to live independently in their homes.

The NIDUS project: supporting people with dementia to remain at home

Most people with dementia want to remain at home for as long as possible. The NIDUS project, led by Prof Claudia Cooper at UCL, aims to develop training and support programmes to help family and professional carers best care for a person with dementia at home. 

'Whilst we all hope for a cure in the future, I think that there are thousands of families living with dementia in the present who deserve more help and support. Research is where that process can begin.'

- Lucy Matthews, research assistant

The team has gathered the experiences of people affected by dementia and reviewed the current evidence to develop a new support programme called NIDUS-family. The next step is to test it to find out how well it supports those caring for loved ones at home.

Adapting research to lockdown measures

Before the pandemic, the NIDUS team ran face-to-face support sessions with people affected by dementia. But since lockdown, the team are now connecting with participants by phone and video call.

To begin with, many people affected by dementia were adjusting to life during lockdown and were not familiar with video calling. But as people have adapted to using technology to stay in contact with family and friends, many more are now keen to take part in the study.

Connecting with people on the phone also allows the team to recruit volunteers to the study from further afield than was originally planned.

The team is also adapting their care strategies to reflect what is possible for people affected by dementia while  lockdown and social distancing measures remain. Activities which help people living with dementia stay active at home are one example.

'Many have started to look for ways to adapt to this new normal, and have appreciated the NIDUS study as something that may help with that.'

- Megan bird, research assistant

The researchers have become more confident in using technology to provide their support sessions to people affected by dementia. They have helped many people to set up video calling, making the sessions as useful as possible. 

They have had a fantastic response from people taking part in the study and many have welcomed the contact during lockdown.  

Staying motivated

The team recognise that there is now an even greater need to provide support to carers and people with dementia living at home during the lockdown. 

'We all have a drive to help others through this time and that’s kept us going,' says Ayesha Dar, a research assistant on the NIDUS project.

By understanding the best ways of continuing this vital study to develop care strategies remotely, the team is helping people during this difficult time when face-to-face contact isn’t an option. 

'Every day we are hearing on the news about keyworkers and I think family carers are the unpaid keyworkers we must remember too. They cannot take a day off, even more so in a pandemic, and if we can better support carers, we can better support people living with dementia.'

- Lucy Matthews, research assistant

Take part in the NIDUS study

The team are looking for family carers and their relatives with dementia to take part in their study. 

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Has there been any recent research done on the mental health effects of caring for somebody with dementia? Especially now with Covid-19 isolating the carer further.

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Hi Sarah, thanks for getting in touch. We’re hearing many anecdotal reports from carers about their experiences of caring for someone with dementia in lockdown and for many it has been a difficult time.

There are a number of different research studies taking place looking at how carers are coping during the pandemic. Many of our researchers are adapting their studies to explore the experiences of carers as part of their research programmes.

A team at Newcastle University are gathering information from carers to learn about their experiences, you can take part here: https://forms.ncl.ac.uk/view.php?id=8102187

You can find out more about how our researchers are working to understand the impact of the COVID-19 pandemic on people affected by dementia here: https://www.alzheimers.org.uk/blog/researchers-supporting-fight-against…

If you’re interested in taking part in research, you might like to register with Join Dementia Research that links people with studies taking place in their area: https://www.joindementiaresearch.nihr.ac.uk/

Hope this is helpful,

Alzheimer's Society research team

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