Factors that likely influence rehabilitation potential and recovery and predictions of the same include previous abilities, age at onset/injury, individuality, drive, underlying motivation, health, support, environment, the exact nature of injury and the exact nature of individual pre-morbid neurology.
Other influencers include our understanding of the brain, how it works, how it repairs and how it responds in the short, medium and long term after injury.
Alongside our developing but yet still poor understanding of how exactly treatments and therapies work, even where we ‘know’ that they do, it is therefore impossible to pinpoint and prescribe a very exact treatment or approach for a specific individual’s neurology, type of insult and likely natural recovery.
This makes us very cautious on positive predictions of recovery. We would hate to promise and not deliver, we don’t want to build ‘false hope’ to disappoint or let down clients and their loved ones. Thus we tend to err on the side of caution.
Added to this, it can be hardest of all to predict at earlier stages and a bit easier to see the trajectory as things develop over time.
Most clients and their nearest and dearest are new to the complex world of neurological injuries. Often they are happy at the initial survival when it was perhaps touch and go for a while.
Later down the line conversations of rehab potential are often had, commonly when services are working toward discharge or a slower stream rehab scenario. At this stage, clients and families often feel we are writing them off.
They see potential. Disagreements can ensue.
This is difficult – we don’t want to give false hope, yet we do (presumably) want each person to progress as far as possible.
I’ve never in my 30-plus years in this field met a therapist who didn’t want their patients to achieve the best possible results. Yet I have observed many differences of opinion between families and treating professionals, between professionals themselves and between predictions and actual eventual results.
This leads me to think of all predictions of potential – from professionals and non-professionals – as hypotheses.
Previously I listed the vast array of factors we have yet to fully understand, but which in combination must be what gives rise to the variety and individuality of each neurological presentation we meet.
From these many influencing elements, we must draw up hypotheses – and it is perfectly possible to have many and opposing hypotheses at any one time.
Hypotheses are a tool by which it is possible to identify each ‘best guess’ based on the information and understanding that is available.
Once proposed, the function of the hypothesis is to act as a statement of a possible outcome which can then be tested to see if it can be supported or not.
The language of the hypothesis gives a clear, inclusive and non-confrontational way to discuss differences of opinion.
In effect it is face-saving if outcomes are not what any hypothesiser suggested.
It allows everyone to feel heard and that their thoughts and observations have been considered.
Even more importantly, it allows goals and treatment plans to be built around testing the hypotheses that have evolved, lessening the risk of the client missing out on opportunities to improve.
Where progress is not made as hoped for, it facilitates healthier conversations and supports adjustment; in a way that doesn’t happen when the client and family remain at odds with treating professionals because they don’t feel heard and may feel they see things that the teams do not.
Families know their person and do indeed see things – consider, for example, the scenario in rehab centres and care homes especially, where there are many people on and off shift over the course of a few months.
Some – many – may know the client pretty well, but they are not spending several hours every day between the times when care and rehab inputs may shape what happens.
The family member who comes in – and regularly spends perhaps many hours with the person – often reports observations which differ from those of the professionals.
When not seen through professional eyes with their ‘trained assessment filters’, this information is often given less weight.
In my experience it would often have been wrong to dismiss this potentially valuable additional information as though the family see through ‘hope filters’ that are so distorting they cannot be a true measure.
I therefore make an argument to:
> Hunt down potential in whatever time you have to spend – robustly test any reasonable hypotheses proposed
> Measure and record directly to support or not a hypothesis
> Set timeframes for testing each hypothesis
> Educate clients and families about what makes a hypothesis – they may need to hypothesise in the longer term
> Allow those involved across the team and, beyond, have alternative opposite hypotheses – just test them!
Let’s stop thinking we know and start experimenting more with what is in front of us, using the evidence base we have but being mindful that we are still a long way from understanding enough to preach rehabilitation potential as a ‘truth’.
Vicki Gilman is a neurorehabilitationist and case manager at Social Return Case Management.
New tech start-up supports those living with dementia
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.”
Could female footballers face greater dementia risk?
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.
Magnetic sensor could detect early signs of TBI
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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