The work of dietitians in post-stroke rehab is heavily built on relationships. First and foremost, we must build up a good relationship with the patient and their loved ones at an immensely difficult time for them.
Where the patient has dysphagia (swallowing difficulties), for example, they may suddenly have been advised by a Speech and Language Therapist to switch to a completely different texture of food, and potentially fluid, from what they’ve known throughout their life.
Whether it’s pureed, minced or soft and bite sized, this is obviously a huge shift for somebody used to eating regularly textured food.
Our role is to support them in this change while ensuring they’re meeting the nutritional requirements necessary to help them with their rehabilitation.
Our work is frequently underpinned by the principles of ‘food first’ – an approach to treating inadequate nutrition and unintentional weight loss via nourishing foods and drink.
For each stroke patient, where able, we strive to maintain an oral diet for as long as possible before, in some cases, having to supplement with or rely on oral nutritional supplements (ONS) and/or enteral tube feeding.
Good nutrition after stroke matters for several important reasons, not least because it has a proven impact in shortening the length of hospital stay (LOS) and improving patient outcomes.
Numerous studies from around the world have evidenced the correlation between nutrition and faster discharges and better outcomes.
For example, researchers at the University of Western Ontario (Finestone et al, 1996) investigated associations between the nutritional status of inpatient rehab unit stroke patients and LOS and functional outcome.
It found a significant relationship between LOS and overall malnutrition and identified malnutrition as the most potentially modifiable variable relating to LOS and functional outcome.
It concluded: “Close attention to nutrition status may help to optimise stroke patients’ rehab potential and use of health care resources.”
A more general study, involving 324 adult surgical patients in Ethiopia (Abrha et al, 2016) found that “nutritional status” was one of three indicators for LOS in hospital, alongside duration of the disease and history of surgery.
There are multiple reasons why good nutrition is vitally important post-stroke which perhaps contribute to its effect in shortening LOS and boosting progress in rehab.
Of course, it helps to maintain energy levels and muscle mass and supports a healthy immune system in the recovery period; but also supports the individual’s wellbeing and mental health.
Helping patients to eat in a way that is as close to normality as possible maintains that connection with something they’ve always done, at a time of great change in their life.
There is also a social element. If the individual can maintain eating with other people, that can be incredibly helpful for their morale and outlook.
As well as forging relationships with patients and the people in their lives, dietitians must also work closely with fellow members of the multidisciplinary team (MDT).
Among all of the interventions that make up the collective effort of the MDT, the dietitian is the voice which speaks up for the value of nutrition.
Although others in my field may have had a different experience, I have always felt that this voice is listened to and respected in stroke rehab.
Where it is not can perhaps be partly attributed to the fact that we dietitians are a rarer breed in rehab than physiotherapists and occupational therapists, for example.
Also, we might work with the patient less frequently than some other rehab professionals. We may see the individual a few times a week or even once per week depending on the complexity, while a physio working with a stroke patient could be having sessions with them every day. Therefore we may be less visible in certain settings.
But from my point of view over several years of working on stroke wards, nutrition as a factor in improving outcomes has never been marginalised.
This has been enabled through continuous and close liaison with other members of the MDT, and practicing in an empathetic and evidence-based way. Having a full view and understanding of the rehab schedule allows the dietitian to adapt the person’s eating pattern to it.
For instance, if the patient is on a physio-intensive rehab timetable, this could mean providing small, frequent meals, snacks and drinks rather than focusing on their standard meal pattern. Patients may find eating larger meals too daunting and tiring, whilst they may manage better with smaller portions. Care must be taken to ensure that these smaller portions are nourishing and well accepted by the patient. For those patients unable to eat orally, this may mean adapting their enteral tube feeding regime to ensure they don’t miss out on valuable nutrition during their physical rehab sessions.
So, while other MDT members are regularly updating us on the rehab regime, we are maintaining focus on the importance of nutrition and how it could support the patient.
An important development around stroke in recent years, meanwhile, is the roll-out of the International Dysphagia Diet Standardisation Initiative (IDDSI).
This is a global standard for the use of texture modified foods and thickened fluids in dysphagia.
The IDDSI framework has eight levels each with standardised descriptors and testing methods that support consistent production and easy testing of thickened liquids and texture modified foods.
This helps to shape our research and development at Wiltshire Farm Foods as we continue creating a wider choice for patients.
We work tirelessly to support dining with dignity, which means that when people have modified food, their meal looks and tastes as close to the non-modified alternative as possible.
Being able to enjoy food and sitting down for a meal with friends and loved ones are hugely important parts of life; and needn’t be given up due to a stroke or other health challenge.
Emily Stuart is a dietitian at Wiltshire Farm Foods, which delivers meals to UK households, care homes and healthcare settings, including neuro-rehab facilities and wards.
Update:concussion in sport
A run through the latest developments in concussion in sport research and protocols.
A study published in the May 27 in the medical journal of the American Academy of Neurology, looked at a biomarker called neurofilament light chain, a nerve protein that can be detected in the blood when nerve cells are injured or die.
Levels of the protein in the blood were measured and it was found that those with three or more concussions had an average blood levels of neurofilament light 33 per cent higher than those who had never had a concussion.
“The main finding in the study is that people with multiple concussions have more of these proteins in their blood, even years after the last injury,” said study author Kimbra L. Kenney, M.D of the National Intrepid Center of Excellence.
“Additionally, these proteins may help predict who will experience more severe symptoms such as PTSD and depression. That’s exciting because we may be able to intervene earlier to help lessen the overall effects of concussions over time.”
Following on from our article on the game changing tests into concussion in children it has been found that concussions sustained by high school athletes continues to increase.
Injury data collected from 100 high schools for sports including football, volleyball and wrestling found that, between the academic years 2015 and 2017, the average amount of concussions annually increased 1.012-fold compared to the previous four academic years.
Approximately 300,000 teens suffer concussions or mild traumatic brain injuries each year while playing high school sports.
Wellington Hsu, M.D, professor of orthopedics at Northwestern University’s Feinberg School of Medicine said: “It’s understandable to think that with increased awareness among practitioners who diagnose concussions, the incidence would naturally rise; however because we’ve studied and reported on concussions for a number of years now, I feel that enough time has passed and I would have expected to see the numbers start to level out.
“What we found was that the overall average proportion of concussions reported annually in all sports increased significantly, as did the overall rate of concussions.”
The data also revealed that in gender-matched sports, girls seemingly sustain concussions at a higher rate than boys.
The effects of concussion in young people continues to be a key concern, with links between concussion and football, specifically when heading the ball leading to some big changes when it comes to training guidelines.
Coaches have been advised to update their rules connected to heading the ball in training, with no heading at all in the foundation phase for primary school children and a “graduated approach” to introduce heading training at under-12 to under-16 level. This guidance is expected to be issued across the continent later this year.
These new guidelines were recommended following a FIELD study, joint-funded by the English FA and the Professional Footballers’ Association, published in October last year, finding that professional footballers were three-and-a-half times more likely to die of a neurodegenerative disease than members of the general population of the same age.
The study did not identify a cause for this increased risk, but repeated heading of a ball and other head injuries have been identified as possible factors.
Dr Carol Routledge, director of research at Alzheimer’s Research UK, said: “Limiting unnecessary heading in children’s football is a practical step that minimises possible risks, ensuring that football remains as safe as possible in all forms.
“As such, measures to reduce exposure to unnecessary head impacts and risk of head injury in sport are a logical step. I would, however, like to see these proposals introduced as mandatory, rather than voluntary as present, and a similar approach to reduce heading burden adopted in the wider game of football, not just in youth football.”
A similar stance, that also includes restrictions during matches, has been in place in the US since 2015 after a number of coaches and parents took legal action against the US Soccer Federation.
There is clearly a need to educate coaches and athletes about the concussion recovery process while equipping physicians with quick diagnostic tools.
A partnership between Neurotechnology and brain health analytics player SyncThink and concussion education technology specialist TeachAids aims to offer the latest concussion education combined with mobile, objective measurement technology.
EYE-SYNC, which allows a clinician to use analysis to decipher between brain systems to determine whether a patient may be performing poorly or impaired, will create a brain health education and evaluation system based on the implementation of CrashCourse, an interactive educational module that teaches athletes, parents and coaches about concussions.
This implementation will be available to all SyncThink partners which include top athletic organisations and clinical partners providing medical care and education for over 10,000 high school and college athletes.
This implementation could make tracking those who receive concussion education easier while complying with sport governing bodies educational requirements.
SyncThink founder and medical advisor to TeachAids, Jamshid Ghajar said: “Using the SyncThink platform to feature the CrashCourse educational technology for athletes and coaches is brilliant.
“Now clinicians can use the Eye-Sync tests and metrics alongside CrashCourse’s latest evidence-based information on concussion.”
Stepping up the fight against alcohol-related brain injury
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.
Neurobehavioural rehab in aggression management after TBI
Changes in personality following TBIs are often more problematic than neurocognitive, functional deficits or even physical disabilities. Dr Grzegorz Grzegorzak, consultant neuropsychiatrist at St Peter’s Hospital, South Wales, explains why taking a neurobehavioural approach to treating TBI can be highly effective.
Personality changes are sometimes referred to as neurobehavioural disability (ND), especially when associated with social difficulties.
The concept of ND involves impairments of numerous aspects of functioning including the abilities to self- monitor and self-regulate, to control frustration, anger and aggression, to tolerate delay in gratification, and to self-motivate.
These impairments can lead to a sense of being overwhelmed when facing situations requiring control and management of internal impulses or coping with social situations or tasks.
Impulsivity, disinhibition and aggression all have significant potential to interfere with rehabilitation efforts, jeopardize recovery and become a major obstacle to successful functioning in social roles.
Research estimates the prevalence of aggression in survivors of TBI as being as high as 33.7 per cent.
Addressing aggression as soon as it arises is critical to the individual’s recovery.
Sometimes aggressive behaviour is so intense and frequent that its management takes priority over all other aspects of care and rehabilitation.
Neurobehavioural rehabilitation (NR) was introduced in the late 1970‘s as an attempt to improve functional abilities of TBI patients.
NR stems from recognising that people who survive TBI can still learn new skills to self-regulate and to modify their behaviour.
The basis of NR is embedded in learning theory and thus the success of NR is reliant on the patient’s ability to make use of new information and experiences.
Therefore, NR is only suitable for the post-acute phase of recovery from TBI, and in fact is intended as a medium to long term rehabilitation programme.
NR interventions are composed of comprehensive and multidisciplinary efforts to create a user-friendly, supportive and encouraging social environment which facilitates therapeutic interactions and activities.
Specific goals and detailed routines are constructed for each patient individually, based on structured collection of data informed by behavioural analysis.
The process of designing and implementing the interventions puts emphasis on personal autonomy.
Clinical formulation is preferred over medical diagnosis. The attitude of the MDT should always be positive, embracing a strong belief in the patient’s ability to achieve their goals, improve and recover.
Carefully managed feedback and positive reinforcement are an essential part of NR.
Consistent interactions with every member of the team are of utmost importance, given that neurobehavioural intervention should not be limited to scheduled activities but in fact incorporated in every interaction.
Over the last forty years the model has been implemented by many neurorehabilitation services worldwide.
Several case studies describing recovery pathways through NR paint a very positive picture, and our own experience at St Peter’s of adopting a neurobehavioural approach has demonstrated it can produce real and measurable outcomes for both our patients andtheir families.
Case Study: Mehmet
On admission to St Peter’s Hospital, Mehmet presented with extreme challenging behaviours including serious assaults on staff, destruction of environment, verbal abuse and shouting.
Mehmet has frontal lobe dysfunction as a result of a head injury he sustained. For the previous 18 months he had been in a general hospital.
At St Peter’s a bespoke positive behaviour support plan and activity plan were developed with Mehmet’s input and reflecting his cultural needs which, under the supervision of his MDT, promoted positive changes to his social interactions, routines and activities.
Over nine months Mehmet’s challenging behaviours reduced significantly and he now enjoys a wide range of activities including regular community visits and has strengthened his relationship with his family.
Dr Grzegorz Grzegorzak is one of the consultant neuropsychiatrists at St Peter’s Hospital a specialist 39-bed Neuropsychiatric facility in Newport, South Wales run by the Ludlow Street Healthcare Group. www.saintpetershospital.co.uk
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