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Why redefining who you are after a brain injury could be the most important aspect of recovery

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By Rae Hughes, clinical psychologist and Pete Fleming, clinical tutor and consultant clinical neuropsychologist.

Adjusting to life after a brain injury involves coming to terms with, and adapting to, changes, which often span multiple areas of a person’s life, such as hobbies, employment, and interpersonal relationships.

Understandably for many individuals, their life following a brain injury can look completely different to before.

The term ‘self-discrepancy’ refers to the difference between versions of ourselves. For example, a person may have a ‘pre-injury self’ and a ‘post- injury self’. These two versions of self may be completely different, whereby following a brain injury (post-injury self) a person is unable to engage in work or hobbies in the same way they were before (pre-injury self).

While many individuals may strive towards getting back to how they used to be, in some instances this may be unrealistic and unachievable.

Take the example of Mr Smith, who before his brain injury was a keen runner, but now has weakness in one side of his body and chronic fatigue. After months of intense physio, Mr Smith is still unable to walk unaided or for long periods of time.

His physio believes that further recovery in his mobility is unlikely. Furthermore, the regular marathons that Mr Smith used to complete are now out of the question, but this doesn’t stop Mr Smith from wanting to be able to do this.

This drive to get back to his ‘pre-injury self’ drives a self-discrepancy between how he used to be and how he is now (pre-injury vs post-injury self).
Our research paper, ‘Shame, self-discrepancies, and adjustment after acquired brain injury,’ aimed to explore how these differences in individuals’ pre-injury and post-injury selves may be linked to an experience of shame, and to consider whether these factors predicted their adjustment.

Shame was felt to be an important factor to study in relation to self-discrepancies, due to it occurring as an emotional response to negative evaluations of the self, which can lead to a person feeling unworthy.

Given that self discrepancies exist due to evaluations between states of self, we wondered if a negative self-discrepancy would exist alongside shame. As suspected, the research found that the more negatively a person viewed themselves after a brain injury compared to before, the higher their experience of shame.

Mr Smith finds that he can’t help but think about how he used to be able to run for miles, but now struggles to walk to the end of his street. As running was such an integral part of his identity, he often finds himself feeling as though he is now flawed in some way, as though he ‘should’ be able to get back to running, even though this is no longer possible.

Understandably, the research found that participants who perceived negative differences between themselves before and after the brain injury, not only experienced higher levels of shame, but also experienced poorer adjustment. For the purpose of the research, adjustment was measured as emotional wellbeing and quality of life.

To summarise, individuals who perceived a negative difference between how they were pre-brain injury and how they are post-brain injury were more unhappier, more anxious and had lower levels of general wellbeing.

These findings show that self- discrepancies are a really important aspect to adjustment and recovery following a brain injury. If individuals strive to return to tasks or
a way of living that is no longer possible, they are likely to feel frustrated, which could lead to poorer emotional wellbeing and adjustment generally. Managing and reducing the self-discrepancies should be one of the aims of psychosocial adjustment post-brain injury.

So how do we support individuals to do this? Although not explored in this paper, other research has suggested that creating a new ‘updated’ sense of self could break this cycle, which means accepting the present situation, and redefining who you are to reflect these new circumstances.

Many individuals will need the support of a neuropsychologist to help facilitate this journey through adjustment, with third wave cognitive behavioural therapy models including compassion focused therapy and Acceptance and commitment therapy, lending themselves to this process.

In the example of Mr Smith, it could be that although he’s no longer able to compete in races, he can volunteer his time at a races, supporting runners to register, or as a marshal. While this isn’t the same as running in the race himself, it could offer the chance to socialise, talk to like- minded individuals, and gain a different sense
of achievement.

In conclusion, the process of redefining your sense of self following a brain injury could be essential for good psychological wellbeing and adjustment following a brain injury. This does not mean an individual has to completely let go of who they were pre-injury, but rather that aspects of their identity may need to be altered slightly.

Rae Hughes is clinical psychologist at Humber Teaching NHS Foundation Trust. Pete Fleming is clinical tutor and consultant clinical neuropsychologist at the University of Hull. Find this article on nrtimes.co.uk for links to their paper Shame, self-discrepancies, and adjustment after acquired brain injury.

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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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Management during a pandemic: what we’ve learned

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As the country faces the second wave of the coronavirus pandemic, the management team at Richardson Care reflect on their experiences so far. Richardson Care has six specialist residential care homes – three for adults with acquired brain injury and three for adults with learning disabilities. Caring for up to 78 people, many of whom are vulnerable brings added responsibilities and pressures, as well as additional skills.

Our experience in supporting people who are rebuilding their lives after brain injury or living with learning disabilities means that we are problem solvers. We support people to overcome challenges every day. Never has this been more important and we’re proud of the way that our management team and staff have responded.

We asked our Homes Managers for their personal views and experiences of the pandemic – from their initial reactions to plans for the future. We discover what we’ve learnt, and how we can change things for the better.

Resilience
‘The capacity to recover quickly from difficulties; toughness’ has been demonstrated by our team throughout the pandemic. Jane Payne, Operational & Clinical Officer at Richardson Care, takes us back to the beginning of the year: “On February 18th 2020 we informed staff that there was a new virus, and preventative measures were put into place; including hourly touch point cleaning, increase in hand washing and an increase in awareness. Ahead of government guidance on March 12th 2020, we took the very tough, necessary decision to close our doors to family and friends to protect service users. We made sure that all staff worked only in one home, so in the event of an infection, it would not be transferred from one home to another by our staff.”

“The management team have become incredibly solid; working as one in supporting each other, as and when each has needed, as we live and work through the rollercoaster that is Covid-19. I am proud to lead; and be part of such a strong group of individuals displaying a sole purpose of ensuring the care, welfare, safety and security of our service users and staff. Richardson Care has shown we are more than resilient, we have become stronger through experience. Care: it’s in our DNA.”

Jacky Johnson, Registered Manager at our Boughton Green Road home for adults with acquired brain injury talks about the realities of dealing with something that no one had ever experienced before. She says: “We were dealing with real disease: a real virus, in real time with real people…The guidance received from various governing and public bodies changed before the ink could dry…The initial fear demonstrated by some staff left others having to broaden their shoulders… taking on extra activities within their daily routines…The expectation on myself as a Manager weighed heavily, it felt like I should know all the answers to the questions they asked… I was clear of my expectations from my team and them of me… Resilience: it’s not about how many times you fall… it’s about how many times you stand up and face another day.”

Teamwork
It was important to create a positive spirit as we knew our response would impact our service users. Central staff were redeployed so each home had enough admin and maintenance support in their team. This means they have been able to form closer relationships with the service users, some have been helping out with maintenance jobs – developing their skills and feeling valued while completing meaningful activities.

The teams within each home became closer, bonding more as they faced challenges together. No job was too big.

Weekly management meetings moved online in February. The Managers have worked more closely together while being socially distanced. Helen Petrie, Manager at The Richardson Mews adds: “No-one has ever been in this position before. We’re all learning together and supporting each other. We’re there to boost morale when it’s needed, sharing experiences and insight to keep our service users and staff happy and safe.”

Resourceful
We’ve found more efficient ways of operating – reducing risk while continuing to help our service users develop their daily living skills. For example, instead of going out to the shops several times a day, there’s just one trip per day. This means planning ahead, so service users have been helping to plan the menus, write shopping lists and prepare for their daily needs. These all require cognitive skills.

We have all become much more tech-savvy, using the internet, apps, photos and video calls as well as phone calls and letters to keep in touch with service users’ family and friends. We’ve also been checking in with each other more too.

Wendy Coleman, Registered Manager at our Duston Road home adds: “For service users, routine is a major part of their life. When their usual activities are no longer possible – no home visits, day services, community activities – staff have shown how well they have supported service users, reassuring them throughout all this. They have also been dealing with more challenging behaviours due to service users’ complex needs and lack of understanding of what is happening. We have created different routines and activities, promoting health and exercise.”

At The Richardson Mews (inspired by Joe Wicks) the day now starts with ‘Morning Motivation’ – exercising to music every day to improve fitness, flexibility and well-being. We’re also making more use of our in-house gym equipment. One service user who has a brain injury thrived during lockdown: he was in a wheelchair in February and now he can walk 70 lengths of the parallel bars.

Although the service users have missed going out, we have had plenty of scope and opportunity to develop in-house activities. Our large gardens and outdoor spaces have been used for gardening, ‘coffee shops’, sports and games, trampolining and treasure hunts. Our indoor communal spaces have hosted quizzes, craft activities, music and karaoke sessions. We’ve celebrated birthdays with gifts, parties and barbecues. We’ve maintained structure when needed, providing mental stimulation, social interaction and fun, while supporting well-being and skills development.

Appreciating each other
“The new normal is valuing and appreciating the simple things in life and each other, focusing on the positives,” adds Wendy Coleman. As we have gone through the months, we’ve noticed positive changes in service users – improved bonding with staff due to them having much more 1-1 time. Individual service user’s communication skills have also improved.

“Staff have done all this whilst dealing with the impact on their own lives. I feel through all this we all have changed our priorities, we have learnt different coping skills, adapted to change, and have gained new skills.

“It is important to show how we value, support and appreciate each other, talk more, respect and most importantly listen to each other. Learning that showing praise and valuing people is so important in these difficult times.”

Never has the responsibility of managing specialist care services been so great. As we prepare for the next phase of the Coronavirus pandemic, we know that we have the experience, skills and resilience to face the challenges ahead.

Richardson Care provides specialist residential care and rehabilitation for adults with acquired brain injury and learning disabilities. An independent family business with a 30-year track record, it has six residential care homes in Northampton. Find out more at www.richardsoncares.co.uk

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The danger of Z-drugs for dementia patients

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Strong sleeping pills known as ‘Z-drugs’ are linked with an increased risk of falls, fractures and stroke among people with dementia – according to research from the University of East Anglia.

Sleep disturbance is common among people with dementia and the impact for patients and their families is significant.

To date there are no proven effective treatments available, however people with dementia are often prescribed Z-drugs (zopiclone, zaleplon, and zolpidem).

But a new study published today reveals that stronger doses of these drugs are linked with an increased risk of adverse effects.

These adverse effects were found to be similar or greater than those for higher dose benzodiazepines or ‘benzos’ – which are also used to treat sleep disturbance, and are known to have several adverse effects.

The team say that patients already taking higher doses of Z-drugs should not stop taking their medication suddenly, however they should seek a review with their GP.

Prof Chris Fox, from UEA’s Norwich Medical School, said: “As many as 90 per cent of people with dementia suffer sleep disturbances and it has a big impact on their mental and physical health, as well as that of their carers.

“Z-drugs are commonly prescribed to help people sleep – however these medicines were never licensed for dementia and they have been associated with adverse events such as falls and fracture risks in older people.

“We wanted to find out how they affect people with dementia, who are frequently prescribed them to help with sleep disturbance.”

The team analysed data from 27,090 patients in England diagnosed with dementia between January 2000 and March 2016. The average age of the patients was 83 and 62 per cent were women.

They looked at the adverse events for 3,532 patients who had been prescribed Z-drugs and compared them to people suffering sleep disturbance who had not been prescribed sedatives, and patients who had been prescribed benzodiazepines.

They also looked to see whether Z-drug dosage played a part in adverse outcomes.

Prof Fox said: “We studied a range of adverse outcomes including fractures, falls, deep vein thrombosis, stroke and death – over two years. And we were particularly interested to see whether higher doses led to worse outcomes.”

Higher dose Z-drugs and benzodiazepines were defined as prescriptions equivalent to ≥7.5mg zopiclone or >5mg diazepam daily.

“For patients prescribed Z-drugs, 17 per cent were given higher doses. And we found that these patients on higher doses were more at risk of falls and fractures, particularly hip fractures, and stroke – compared with patients who were not taking any medication for sleep disturbance,” said Prof Fox.

Those on lower doses however (≤3.75mg zopiclone or equivalent) were not found to have an increased risk of adverse outcomes.

And there were no differences in adverse events for Z-drugs compared to benzodiazepines, except lower mortality rates with Z-drugs.

Prof Fox said: “This research shows us that higher dose Z-drugs should be avoided, if possible, in people living with dementia, and non-pharmacological alternatives preferentially considered.

“Patients already taking higher dose Z-drugs should not stop taking their medication, but we recommend that they should make an appointment to see their GP for a review,” he added.

Prof Clive Ballard, of the University of Exeter Medical School, who collaborated on the study, said: “Our findings serve an important caution regarding the harms of sleeping tablets in people with dementia.

“This research is a very timely and unfortunately necessary reminder that sedative medications are not a helpful way to manage social isolation during Covid-19.

“Our study also highlights the importance of research to develop non-drug approaches to help people with dementia to sleep – whether they are at home or in residential care.”

Dr Ian Maidment, Reader in Clinical Pharmacy at Aston University and lead pharmacist on the study, said: “Z-drugs are widely used to treat insomnia in people living with dementia, but are only recommended as a short-term treatment for the maximum of four weeks. Our work shows the importance of clinicians including GPs and pharmacists reviewing patients on long-term Z-drugs.”

The study was led by UEA, in collaboration with researchers from The Quadram Institute, Aston University, University College London, and the University of Exeter.

‘Adverse effects of Z-drugs for sleep disturbance in people living with dementia: a population-based cohort study’ is published in the journal BMC Medicine on November 24, 2020.

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