Alcohol-related brain injury (ARBI) is becoming more widely recognised, but specific rehab services for the condition are surprisingly rare.
With few dedicated units for patients with ARBI, many patients in need of specialist care instead find themselves in a hospital or even an elderly care home.
ARBI is characterised by prolonged cognitive impairment and changes in the brain due to chronic alcohol consumption.
The average age of diagnosis in men is 55, and only 45 for women – following at least five years of excessive alcohol consumption, of around 50 units per week in men and 35 for women.
ARBI is not a degenerative condition, with up to 75 per cent of patients recovering to some degree with the correct support; and the first three months following diagnosis are recognised as key in a person’s recovery. Access to appropriate provision, therefore, is even more crucial at this time.
In February, UK-wide charity Leonard Cheshire opened a residential unit in Northern Ireland to help some of the many patients in need in the country. It is the first facility of its kind on the island of Ireland.
The 14-bed unit, near Belfast, opened inconveniently – after years of planning – just as the COVID-19 crisis was emerging.
Its work goes on, however, with the centre taking patients from across the country, though initially from the capital and surrounding areas.
The residential centre aims to support residents over a two to three-year period, although that can be shorter for some patients. It helps them to live independently, by building the life skills and confidence to do so.
Naomi Brown, clinical lead at the centre, joined Leonard Cheshire late last year to oversee the opening of the facility, following an extensive career in brain injury work and in being part of multidisciplinary teams.
She says: “The background here in Northern Ireland is that the acquired brain injury (ABI) service is really well structured and established but for ARBI, often the person wouldn’t meet the criteria for addiction services, but their needs would not be such that they needed to be admitted to hospital, or even fulfil the criteria for ABI services, so they would fall through the cracks.
“The provision they receive would often come from the care sector, but to end up in a care home at what could be a very young age is not appropriate either.
“There is a real lack of options. Their care managers recognise they aren’t in the appropriate setting for them, but through a lack of alternatives, it is very difficult.
“A lot of symptoms are very similar to those under the influence of alcohol, difficulty with balance and memory for example, which can make ARBI difficult to diagnose.
“Often it can be something like liver failure that gets them into hospital, but then it becomes obvious there are cognitive issues there too.
“Our centre only has 14 beds, which we don’t pretend is going to answer the scale of the problem, but the decision to restrict it to that number is that we don’t want quantity over quality. To try and accommodate huge numbers would risk the patient-centred approach that we are really proud of, so we wanted to keep it on a small scale.
“But there are 14 places here at any one time for people to get access to the specialist rehabilitation they need, so we are really pleased to be able to offer this.”
With the centre’s goal being the independent living of its patients, a resident-led rehab plan is created for each individual, based around their individual goals and aspirations.
It is delivered by Leonard Cheshire’s team of rehab assistants, supported by clinicians, occupational therapists, physiotherapists, speech and language therapists and neuropsychologists who come in to hold sessions with the residents, and overseen by Naomi.
“From the minute someone is admitted to us, we are already planning for their discharge, even though that may be a long time and a lot of work away.
“From the very start, it’s about the individual, it’s absolutely not a generic approach, even though the ultimate outcome for everyone may be the same. Most people who move in do want to live independently, so if that’s their goal and we will do all we can to help them achieve that, with a plan individualised for them.
“Some people will come to us and we realise they won’t be here very long as they do very well very quickly, but for others, they are going to be with us for two or three years.
“Some people arrive and love it here and say they don’t want to leave, which is a great reflection on the work we do and the centre we’ve created, but the ambition is that the point will come where they realise they don’t need us anymore.
“Through the work we do and our interventions, we can make very good progress. We’ve had some people here already who have been in quite an acute state but the progress they make brings joy into my heart.”
One such patient is David* who, despite only being with the centre for a matter of weeks, has made significant progress in his recovery.
Prior to moving to Leonard Cheshire, he lived in a nursing home for two years.
Before his arrival, Naomi remembers he had low mood, minimal spontaneous conversation and spent long periods of time in his bed sleeping.
He had no clear weekly routine and lacked any scheduled therapeutic or recreational activities.
Naomi says: “David initially required a significant amount of support to initiate activities, engage with others or even leave his room. He has slowly adjusted to the active therapeutic programme in the unit and his mood has improved significantly.
“His mobility and exercise tolerance has greatly increased, he participates in group activities, is now more spontaneous in conversation and has developed facial expressions. David has been able to self-identify rehabilitation goals and discovered a new love for playing the drums and guitar.
“He is in the very early stages of his rehabilitation but having spent three months in the ARBI unit, the change is his quality of life is already dramatic.
“He engages in an individual, weekly timetable which includes activities of daily living, physical, cognitive and social activities, and is reportedly very happy in his current placement. Once the COVID-19 restrictions are lifted, we very much hope to begin reintegrating David to the local community and making future plans for his discharge.”
David’s experience is one which the unit is keen to replicate, by engaging patients from the earliest stages of their arrival at Leonard Cheshire in building a new and healthier daily routine.
“We are always keen to introduce routine, as that is so important in the longer-term. Where some people have maybe traditionally watched TV all night then get up into the afternoon, we try to create a new routine with lots of support services available in the morning. A healthy routine is what we want them to have when they go back home,” says Naomi.
“We encourage people to do things for themselves – to get up, make yourself breakfast, maybe do some gardening or help with the cleaning, all things which promote the ability to do things independently.
“If they put the washer on, they’ll need to go back to it when it’s finished. We have rehab assistants on-hand to support them, but we do actively encourage independence.”
Everyone has an individual timetable for the week based on their own interests, combined with their clinical requirements, which centres on promoting reintegration into the community.
“It’s very individualised, so if someone wants to do an online course or learn how to cook for themselves, or learn a musical instrument, we’ll focus on that. We have a fantastic team here who will turn their hand to anything for the benefit of our residents,” says Naomi.
“As well as activities in the centre, we do a lot in the community, or rather we did before COVID-19, but that will resume when it’s safe to do so. We did sports activities, yoga classes, bowling, it’s not just your classic physio. We want people to be engaged and comfortable with the world outside.
“We will always ensure residents have support once they leave us, and are setting that up long before they go.
“If there was someone who was with us who wasn’t from Belfast, we would use resources we knew were transferable to where they lived, so they didn’t leave us and not know how to access support.
“We build up these links with community services in the relevant discharge areas, so ideally the person will already be confident at being independent and will have the added assurance of knowing they continue to be supported.”
The Leonard Cheshire centre’s launch came amid changes to Northern Ireland’s legislative backdrop with the implementation of the Mental Capacity Act (NI) 2016. This has new deprivation of liberty regulations, a significant new introduction for the country and its approach to capacity and consent.
Naomi says: “When planning for the opening of a new centre, a global pandemic wasn’t on the radar, and for it also to coincide with the new mental capacity legislation meant it was a really busy time for us in the early stages, the COVID-19 aspect of which we could not have foreseen.
“The pandemic did present challenges for our residents, many have a certain level of confusion so it’s difficult for them to always remember that they can’t be close to someone else, they have to regularly wash their hands. There is a lot of prompting which leads to a certain amount of frustration. While they are watching these things on TV about how COVID is affecting the world, it’s hard to relate that to everyday life.”
New referrals continue to arrive during the pandemic, from both hospital discharge and moving from a care home environment, although happily the Leonard Cheshire unit has remained COVID-19 free.
“We were keen to admit new residents and take referrals from hospitals and care homes, subject to extra measures being in place to protect ourselves and our residents.
“We wanted to continue to support hospitals and free up beds, but also to offer the appropriate care to people whose specific needs through their ARBI diagnosis meant they would be better in our centre than a hospital environment or care home.
“This has certainly been a challenging period in which to start our ARBI unit, but we have come through it well together so far and we look forward to continuing to develop ourselves as we come out of the pandemic and go into the future.”
*Name changed for anonymity.
Astrocytes identified as master ‘conductors’ of the brain
In the orchestra of the brain, the firing of each neuron is controlled by two notes – excitatory and inhibitory – that come from two distinct forms of a cellular structure called synapses.
Synapses are essentially the connections between neurons, transmitting information from one cell to the other. The synaptic harmonies come together to create the most exquisite music–at least most of the time.
When the music becomes discordant and a person is diagnosed with a brain disease, scientists typically look to the synapses between neurons to determine what went wrong. But a new study from Duke University neuroscientists suggests that it would be more useful to look at the white-gloved conductor of the orchestra – the astrocyte.
Astrocytes are star-shaped cells that form the glue-like framework of the brain. They are one kind of cell called glia, which is Greek for “glue.” Previously found to be involved in controlling excitatory synapses, a team of Duke scientists also found that astrocytes are involved in regulating inhibitory synapses by binding to neurons through an adhesion molecule called NrCAM. The astrocytes reach out thin, fine tentacles to the inhibitory synapse, and when they touch, the adhesion is formed by NrCAM. Their findings were published in Nature on November 11.
“We really discovered that the astrocytes are the conductors that orchestrate the notes that make up the music of the brain,” said Scott Soderling, PhD, chair of the Department of Cell Biology in the School of Medicine and senior author on the paper.
Excitatory synapses — the brain’s accelerator — and inhibitory synapses — the brain’s brakes — were previously thought to be the most important instruments in the brain. Too much excitation can lead to epilepsy, too much inhibition can lead to schizophrenia, and an imbalance either way can lead to autism.
However, this study shows that astrocytes are running the show in overall brain function, and could be important targets for brain therapies, said co-senior author Cagla Eroglu, PhD, associate professor of cell biology and neurobiology in the School of Medicine. Eroglu is a world expert in astrocytes and her lab discovered how astrocytes send their tentacles and connect to synapses in 2017.
“A lot of the time, studies that investigate molecular aspects of brain development and disease study gene function or molecular function in neurons, or they only consider neurons to be the primary cells that are affected,” said Eroglu. “However, here we were able to show that by simply changing the interaction between astrocytes and neurons — specifically by manipulating the astrocytes — we were able to dramatically alter the wiring of the neurons as well.”
Soderling and Eroglu collaborate often scientifically, and they hashed out the plan for the project over coffee and pastries. The plan was to apply a proteomic method developed in Soderling’s lab that was further developed by his postdoctoral associate Tetsuya Takano, who is the paper’s lead author.
Takano designed a new method that allowed scientists to use a virus to insert an enzyme into the brain of a mouse that labeled the proteins connecting astrocytes and neurons. Once tagged with this label, the scientists could pluck the tagged proteins from the brain tissue and use Duke’s mass spectrometry facility to identify the adhesion molecule NrCAM.
Then, Takano teamed up with Katie Baldwin, a postdoctoral associate in Eroglu’s lab, to run assays to determine how the adhesion molecule NrCAM plays a role in the connection between astrocyte and inhibitory synapses. Together the labs discovered NrCAM was a missing link that controlled how astrocytes influence inhibitory synapses, demonstrating they influence all of the ‘notes’ of the brain.
“We were very lucky that we had really cooperative team members,” said Eroglu. “They worked very hard and they were open to crazy ideas. I would call this a crazy idea.”
Carers at risk of being forgotten
A study has found that 68% of people believe they should ‘reach out’ to carers more often – with 60% of respondents only asking carers how they are ‘now and again’, ‘rarely’ or ‘almost never’; leaving carers at risk of feeling forgotten.
Furthermore, 72% of respondents worried that carers struggled with ‘loneliness’ thanks to the full-on nature of care leaving them little time for socialising.
Throughout the pandemic, caregivers have been at the forefront of the fight, looking after the most vulnerable in society and putting their own lives on the line to do so. In light of this, a campaign called #ReachOutAndHelpOut has been launched to encourage support for carers as they continue to deliver essential care to those in need – amidst fears that carers’ wellbeing is often overlooked.
Spearheaded by Sentai, a British technology start-up focused on helping the elderly live more independently in their own homes, the campaign looks to highlight the vital role that carers play.
Respondents, mindful of the associated health impact of winter, believe the biggest fears to be faced by carers in coming months is another ‘national lockdown’ (60%), while 53% of respondents saw ‘excessive workload’ as a primary worry. 50% also believed ‘difficulty visiting family and friends due to their care commitments’ was a central concern, while ‘juggling different responsibilities’ was a key issue according to 46%.
Other concerns included ‘lack of time’ (32.9%) and carers ‘feeling they’re not doing enough’ (25%).
Professor Ray Jones, professor of health informatics at Plymouth University and director of eHealth Productivity and Innovation in Cornwall and the Isles of Scilly (EPIC), which focuses on the provision of internet based healthcare services (eHealth) voiced his support for the campaign, highlighting the difficulties carers face.
He said: “The impact of the coronavirus crisis has been profound on almost all aspects of society. For carers though, this impact has been magnified to a far higher degree. The physical and psychological toll of caring during a pandemic is huge. We must be mindful of the burden placed on carers and do what we can to help. The service they provide is essential, and we’re all indebted to their hard work. The very least we can do then is simply ask them how they’re doing and offer whatever assistance we’re able to give.”
These sentiments were echoed by Philip Marshman, founder of Sentai and orchestrator of #ReachOutAndHelpOut, who said: “The role of a carer is often overlooked. It’s all too easy to ask how the recipient of care is without extending that concern beyond to take into account the person looking after them. Carers are people, not robots, and now, more than ever we must do what we can to consider and support their wellbeing and mental health.”
Sentai has launched a Kickstarter campaign to raise funds for the next stage of its smart device development, the success of which will see its pioneering technology brought to mass market – allowing those in need to benefit from its advanced offering.
Philip said: “The experience of looking after my own father led me to create Sentai, and it’s been developed to help both the care recipient and the caregiver. Through revolutionary voice technology it initiates intelligent conversations, helping to alleviate boredom and loneliness, while also providing helpful reminders. It’s safety properties also allow the caregiver to monitor the care recipient remotely and unobtrusively, providing reassurance that the care recipient is OK and acting as normal, thereby helping to ease stress and worry for the caregiver.”
He added: “We have everything in place to deliver a successful solution – we want to get Sentai into people’s homes as quickly as possible – whether that’s someone’s own home, or a care home. Raising funds in this way means we can stay true to our mission which is helping people live more independently, for longer.”
Further details of the Kickstarter campaign can be found via https://www.kickstarter.com/projects/sentai/sentai.
To find out more about the #ReachOutAndHelpOut campaign and the different ways to get involved, including the chance to win a well-deserved break away, please visit sentai.ai/ReachOut.
Others in the care industry who have expressed support for the #ReachOutAndHelpOut campaign, include Dr Stephen Ladyman, founder of Oak Retirement and former Minister of Health responsible for Social Care, and Shaleeza Hasham, founder of the Adopt a Grandparent scheme and head of hospitality at care home and home care provider, CHD Living.
PhysioFunction setting the trend for telerehab
Having been an early adopter of telerehab, PhysioFunction was perhaps less daunted than most at the prospect of responding to the COVID-19 lockdown and ensuring their clients’ needs were met.
The specialist neuro physiotherapy practice has, for the past year, used video calls to enable its clients to receive one-to-one sessions in addition to those provided in person, with its staff supporting them to install and use the technology remotely.
It is also an early adopter of the MindMotion GO, a first-of-its-kind mobile neurorehabilitation therapy system which uses gaming to support the recovery of brain injury and neuro patients.
PhysioFunction has reported strong levels of engagement and progress among clients as a result of its telerehab programme, which has increased in its use during the past few months amidst the pandemic.
From its specialist outpatient rehabilitation unit in Northampton, PhysioFunction supports patients from a 100-mile radius, which was a key driver in the adoption of virtual means of delivering therapy.
Claire Everett, clinical operations manager at PhysioFunction and a senior neurological physiotherapist, said: “For some time now, we have tried to embrace the use of online means for therapy, and it has really helped many of our clients. By doing sessions in their own homes, we see them taking ownership of their rehabilitation and it delivers benefits to them in their own settings.
“For example, we might be doing a session by video with a client on how to cope in the kitchen – but because it’s their own kitchen they’re in, that makes it even more relatable.
“It is a very useful way for some clients who perhaps struggle to get to us once a week, but cope much better with two half-hour weekly sessions by telerehab. We do carry out home visits, and will combine the remote sessions with hands-on therapy wherever we can, but some clients live quite a distance away or maybe it isn’t easy for them to get out of the house.
“By holding sessions by video, it doesn’t matter where they live, whether it’s round the corner or two hours away, and we’ve had a great response to our telerehab work. It’s changed our practice in some really positive ways.”
When lockdown came, while for many organisations a swift and seismic move to the adoption of remote communication was needed, PhysioFunction were in the enviable position of being able to build on what they had already created.
“With us already being established with many clients, we didn’t have to start from scratch, and we could look at how to build on what we had already done. By extending our telerehab programme, we could continue to support our clients effectively,” says Claire.
“The team were able to take our classes online from a very early stage, with Taher Dhuliawala and Keiran Cox very much holding the fort during lockdown. The classes followed the same format as in person, with small numbers of participants so we can easily spot if someone needs help, but we were able to increase the frequency of them. Being able to do these kinds of sessions in your own living room was really welcomed.
“With clients who were already able to use video, we also were able to introduce the MindMotion GO, which is fantastic as we can interact with the technology and, for example, increase the intensity as required. But at the start of the pandemic, we still had some clients who didn’t use video, and the fact we have supported them to use it meant they had an extra channel of communication with their family during lockdown, and that was a lovely extra benefit.
“Even aside from COVID, with the flu and winter weather coming, we are expecting further demand for our telerehab sessions. We’re currently running a blended approach of online and in-person sessions, although a few people are still choosing not to come in at all, but they have found our telerehab so effective that they’re still progressing with their therapy.”
While remote working was a ‘needs must’ for many practices during lockdown, and to help mitigate ongoing restrictions, PhysioFunction intend to continue to build telerehab as a core function.
“We are very into innovation and technology here and our team have worked really hard to do what we’ve done, I’m really proud of what we’ve achieved,” adds Claire.
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