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How two community services are making tentative steps to normality

As pandemic restrictions lift, brain injury services are starting to come back out of hibernation. Jessica Brown speaks to two Headway groups across the country to see how they’re resuming support offline.

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In Portsmouth, the local Headway has had a difficult time in recent months. Two service users have died from Covid-19, and another has been sectioned and taken to a secure facility after their mental health took a downturn.

There’s been a huge spike in mental health problems, and a few service users, who wouldn’t have done so under normal circumstances, have got in trouble with the police.

Most service users are gradually building their contact with the outside world again, with Headway’s help.

When lockdown began in March, service manager Deborah Robinson decided the best course of action was to identify the most vulnerable users and make sure she and her team maintained regular contact with them. The next challenge was gradually exposing them to more contact as restrictions began to ease.

“We regard it as a graduation – first is phone contact, then sitting in the garden with them, then inviting them on a walk once they’ve got confident enough to come out of their homes with us, then eventually we’ll suggest they come to a session with the group,” she says.

“Some people are too frail or anxious, so they won’t come out,” she says, “So we’ll have to carry on popping in to see them.”

This approach has proven particularly helpful in some ways, Robinson says. Before the virus, staff members hoped service users would speak up in sessions when they had a problem, but visiting people at home has allowed staff and volunteers to pick up on issues faster and get to know them better.

“One staff member met a service user in his garden, and noticed that the recycling bin was overflowing with alcohol. We knew he’d been a drinker in the past, so the staff member talked to him about his drinking, teasing information out,” Robinson says.

“He said he was drinking a lot, so we’ve been able to put in place goals to help him cut down on his drinking and put him in touch with AA, as well as various other things to help with a problem that reared its head in lockdown.”

Employees and volunteers, she adds, are also getting better at texting group members and touching base.

“It’s a mix of phoning people regularly and picking up the ones where there are issues. We’re getting more adept at that because it wasn’t something we did, and we’ve also picked up almost everyone’s carers because we’ve been talking to them to hear their concerns, too.”

Forty miles west in Salisbury, Headway arranged Zoom groups every week, but recognised that this option wasn’t suited to everyone.

“We were conscious to get actual face-to-face contact again, so as the guidelines have changed, we’ve thought about how we can work with that,” says Sarah Allen, service manager.

In recent weeks, online groups have continued, but staff members have started arranging small group meet-ups in various locations, including the outdoor café at Salisbury Museum, which Allen says provided a good learning opportunity.

One of Robinson’s major concerns in Portsmouth is how service users will react when they see other people not wearing masks or standing too close, and are told they have to adhere to guidelines themselves.

Allen, however, hopes meeting up in public places will help service users slowly accustom to these new ways of life.

“Some people coming to the groups haven’t been outside during the pandemic because all their activities have stopped, so it’s really important to model social distancing and hygiene behaviours,” Allen says.

“Somewhere like an outdoor café has been really useful because it’s about giving group members social contact in a setting where they can see people all around them modelling social distancing, staff wearing face masks and putting on hand sanitiser,” she says. “Then, when group members do go out and about more, it’ll be more familiar for them.”

In recent weeks, groups in Salisbury have also met up in a park, where they were able to socially distance.

Allen says coming out of lockdown and resuming services has been a learning curve for her, and she is realising that it’s sometimes more beneficial to have smaller groups than the maximum allowed by government guidelines. 

She knows she will have to continue to adapt in unknown ways as government guidelines change.

But the future remains uncertain. Headway Salisbury doesn’t have its own centre, so rents community rooms to host sessions instead – and none have reopened yet. Allen plans on continuing outdoor activities for as long as possible, but is uncertain of what will happen as temperatures cool.

“Going into autumn and winter poses a new challenge,” she says. “I’m not sure how we’re going to meet if the government guidelines if the maximum number of people who can meet indoors stays the same,” she says.

Meanwhile in Portsmouth, premises have been locked up for the duration of lockdown. Robinson has seen an increase in demand for services, so as things resume back to pre-Covid 19, she says here’s a lot of thinking to be done about how the service is going to expand to accommodate increased need. She anticipates the service will need to expand by a third.

Both Portsmouth and Salisbury Headway services adapted quickly when the lockdown came in March. Adapting back to how things were before looks like it will be a longer, more difficult path – but while Allen and Robinson have faced slightly different challenges over the last few months, there’s no doubt they’ve both found silver linings in the challenges thrown at them so far.

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New tech start-up supports those living with dementia

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MOJO (Moments of Joy) is a new dementia portal and app connecting everybody involved in the care of a loved one.

The MOJO platform aims to share the load, reduce stress and uncover more crucial opportunities for moments of joy.

MOJO launched the #MomentsOfJoy movement last week, which aims to raise awareness of people affected by dementia, both directly and indirectly.

Dementia is the biggest cause of death in the UK today, with over 850,000 currently diagnosed cases. Unlike many other illnesses however, it is the wider family who often bear the burden of primary care, and there has been very little support available for them during this incredibly challenging journey. MOJO aims to change this with a combination of accessible technical innovation, helpful online resources and real-time support workshops.

Founded by UK-based entrepreneurs John Thornhill and Sasha Cole, MOJO helps families and their loved ones by reducing the stigma around dementia through a holistic support platform and positive philosophy.

The MOJO platform and app provide practical tools to ensure that medical treatment is monitored and reported in a simple way, and imaginative features to create a more comfortable care environment for the whole family.

The suite of tools, includes, ‘MOJO Manager’, which uses imaginative new features to share the practical elements of care amongst the wider family, whilst creating moments of joy during times spent together. MOJO Mentoring, which provides live workshops, advice sessions, and online resources, while MOJO Monitoring is an alert system for situations of disorientation or wandering.

John Thornhill, co-founder of MOJO, realised that technology could revolutionise dementia support. “Most of us have seen the effect of dementia on the patient, but MOJO is for the family. For those whose daily lives are dramatically altered by the practical responsibility and emotional impact of a loved one’s dementia diagnosis.

“Until now there has been little help available for them. We believe our philosophy, ongoing support and technology will make that difficult journey less challenging and more joyful for everybody involved. “

Sasha Cole, co-founder of MOJO adds: “Having worked in dementia-related fields for over ten years, I am acutely aware of the lack of support for patients’ families who are often obliged to provide primary care. The burden of responsibility can be overwhelming. Our aim is to share the load, reduce stress and uncover more crucial opportunities for moments of joy. In this context, what could be more important?

“Philosophically, it’s about going with the flow. It’s easier for us to think like a person who has dementia, than for your loved to think like a person who hasn’t. Although our realities might not always align, the emotional response is what counts. After all, laughter is the best medicine.”

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Could female footballers face greater dementia risk?

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Female footballers heading the ball could be putting themselves at even greater risk of dementia than male players according to experts at the University of East Anglia.

Dr Michael Grey is running a project to monitor ex-footballers for early signs of dementia.

More than 35 former professional players have now signed up including former Norwich City stars Iwan Roberts and Jeremy Goss, and Crystal Palace hero Mark Bright.

But the research team are urgently looking for amateur and professional female players to take part too.

Research from the University of Glasgow has shown that retired male players are around five times more likely to suffer from Alzheimer’s disease compared with the average person.

But little is known about when players start to show signs of the deteriorating brain health and even less about the effects in women as the majority of research has focussed on men.

Dr Grey, from UEA’s School of Health Sciences, said: “We know that there is greater risk of dementia in former professional footballers, and we think this is related to repetitive heading of the ball.

“We know very little about how this affects female players, but we think female players are at even greater risk of developing sport-related dementia than male players.

“We know there are physical and physiological differences between male and female players and this could be important when it comes to the impact of repeatedly heading the ball.

“But we don’t fully understand the impact these differences could have, so we are encouraging former amateur and professional female players to come forward to help us with our project.”

The team will use cutting-edge technology to test for early signs of cognitive decline in men and women, that are identifiable long before any memory problems or other noticeable symptoms become apparent.

Dr Grey said: “We have already signed up more than 35 professional male players but we have very few women footballers in the study so far. We are looking for women and men over 40, who live in the UK and do not have a diagnosis of dementia. Testing is conducted on a computer or tablet from the comfort of their own homes and takes around 30 minutes, four times per year.

“We are tracking their brain health over time. And we hope to follow these footballers for many years to come.”

The project is among a number of pieces of work in the Concussion Action Programme, a research group within UEA Health and Social Care Partners.

Want to take part?

The research team are looking for former professional football players, both men and women, who are aged over 40 to take part in the study. Amateur footballers and active non-footballers aged over 40 can also take part.

The research will see a small group of participants coming into the lab, but the majority of the testing will be done online at home.

To take part, visit www.scoresproject.org. To contact the team about the project, please email scoresproject@uea.ac.uk.

 

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Magnetic sensor could detect early signs of TBI

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Signs of traumatic brain injury, dementia and schizophrenia could be detected at an earlier stage as a result of the development of a new sensor which measures weak magnetic signals in the brain.

Through the development of the new Optically Pumped Magnetometer (OPM) sensor, scientists are hopeful of enabling a greater understanding of connectivity in the brain, which could have significant benefits in the chances of early diagnosis.

The device, developed by teams of scientists at the University of Birmingham, is currently in trail stage and clinicians at the Queen Elizabeth Hospital Birmingham are involved in its use in pinpointing the site of TBIs.

Its potential to increase diagnostics for neurological injury, neurological disorders such as dementia, and psychiatric disorders such as schizophrenia, has been widely recognised, and the team are now seeking commercial and research partnerships to help advance its development further.

The new sensor has enabled advances in detecting brain signals and distinguishing them from background magnetic noise, when compared to commercially available sensors. By using polarised light, the device can detect changes in the orientation of spin atoms when exposed to a magnetic field.

The team was also able to reduce the sensor size by removing the laser from the sensor head, and made further adjustments to decrease the number of electronic components, in a move that will reduce interference between sensors.

Benchmarking tests have taken place at the University’s Centre for Human Brain Health, and has reported “good” performance in environmental conditions where other sensors do not work.

Specifically, the researchers showed that the new sensor is able to detect brain signals against background magnetic noise, raising the possibility of magnetoencephalography (MEG) testing outside a specialised unit or in a hospital ward.

The research – published in the ‘Detection of human auditory evoked brain signals with a resilient non linear optically pumped magnetometer’ report, Kowalczyk et al (2020) – was led by physicist Dr Anna Kowalczyk.

“Existing MEG sensors need to be at a constant, cool temperature and this requires a bulky helium-cooling system, which means they have to be arranged in a rigid helmet that will not fit every head size and shape,” she says.

“They also require a zero-magnetic field environment to pick up the brain signals. The testing demonstrated that our stand-alone sensor does not require these conditions.

“Its performance surpasses existing sensors, and it can discriminate between background magnetic fields and brain activity.”

The researchers expect these more robust sensors will extend the use of MEG for diagnosis and treatment, and they are working with other institutes at the University to determine which therapeutic areas will benefit most from this new approach.

Neuroscientist Professor Ole Jensen, who is co-director of the Centre for Human Brain Health (CHBH), highlighted the potential of the sensor.

“We know that early diagnosis improves outcomes and this technology could provide the sensitivity to detect the earliest changes in brain activity in conditions like schizophrenia, dementia and ADHD,” he says.

“It also has immediate clinical relevance, and we are already working with clinicians at the Queen Elizabeth Hospital to investigate its use in pinpointing the site of traumatic brain injuries.”

The team at the CHBH has also recently been awarded Partnership Resource Funding from the UK Quantum Technology Hub Sensors and Timing to further develop new OPM sensors.

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