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Biting back against a common threat

The swallowing disorder dsyphagia is widespread among people with brain injuries and conditions – and its impact can be profound. Here Helen Willis, dietitian at Wiltshire Farm Foods tells NR Times how to curb its negative influence on people in recovery.

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Dysphagia is an all-too common adversary of neuro-rehab patients, and the professionals who care for them.

Some studies suggest the swallowing disorder is experienced in as many as 93 per cent of people admitted to brain injury rehab centres (Hansel et al, 2008).

It will affect around one in two stroke survivors, according to the Stroke Association, and roughly at least a third of people with MS.

Meanwhile, over 80 per cent of people with Parkinson’s may be affected (Suttrup et al, 2016).

Its impact on the patient can be profound. Not only does it reduce life quality and independence – those key indices of rehabilitation – but can also complicate medication intake and cause malnutrition.

It is also implicated in infections such as aspiration pneumonia which can be fatal.

After a brain injury, damage to the main swallowing centres of the brain or to the nerves and muscles controlling swallowing can cause dysphagia.

But the brain injury can influence swallowing in other ways too, as brain injury charity Headway explains in its dysphagia factsheet:

Helen Willis, dietitian at Wiltshire Farm Foods

​“If the senses of taste and smell are impaired then the oral preparatory stage will be affected and the production of saliva will not be stimulated.

“This stage can also be affected by severe cognitive issues.

People may not understand what food is or have an awareness that they are about to eat.

“The effects of brain injury can also mean that people sometimes aren’t aware of problems such as food going down the wrong way, because their choking reflex doesn’t work.

This is known as silent aspiration and is one of the reasons that aspiration pneumonia can occur.”

Speech and language therapists employ a range of therapy techniques aimed at triggering the swallowing reflex and strengthening muscles needed for chewing and swallowing.

Once the patient is in a residential care or community setting, carers and loved ones may also have a key role to play in minimising the impact of the condition.

“Dysphagia can mean that mealtimes become a struggle,” says Helen Willis, dietitian at Wiltshire Farm Foods.

“Not only is eating a slow process, but it can also be a scary one.

“The risk of choking or aspiration, the inhaling of food into the lungs, is high and can lead to frequent chest infections and pneumonia.”

A texture-modified diet may, therefore, be required to counter these risks.

But home-blended food brings with it its own problems, on top of reduced appetite caused by illness and apprehension about swallowing.

Helen says: “Being presented with a puréed meal that doesn’t resemble food that a patient is used to can make the eating process even harder.

“People with dysphagia still eat with their eyes so if a meal is not visually appealing then it can fail to trigger salivation, further hindering an already-weakened swallowing process.”

Density of nutrition, or rather lack of it, is a major factor too.

“Adding water to aid the blending process of food at home can dilute the nutritional content, meaning patients need to eat a higher volume of food to achieve the same nutritional intake at a time when they are more likely to have a reduced appetite.

“Often patients with dysphagia struggle to get the calories and nutrition they need, meaning each bite they do take needs to be packed with as much protein, calories, vitamins and minerals as possible.

“Serving larger portions with fewer calories does little to improve mealtimes for dysphagia patients since the meal may appear more intimidating and is unlikely to be finished.”

In her role as an in-house dietitian at Wiltshire Farm Foods, Helen is tasked with finding solutions to such problems.

One alternative to home-blended food for dysphagia patients she has influenced is the PuréePetite range, part of the Softer Foods range of texture modified meals.

They provide smaller, and therefore more manageable, portions. Yet deliver the same nutritional value as a standard-sized dish.

They are “energy dense” to serve up a similar calorie and protein content as larger dishes, containing a minimum of 500 calories at least 20g of protein.

They are also suitable for patients requiring a Level 4 Puréed diet in line with the recently introduced IDDSI (International Dysphagia Diet Standardisation Initiative) food and drink texture standards.

Crucially, dishes in the range are shaped to look like a non-blended meal – “making them more appealing, encouraging patients to eat”, says Helen.

Another weapon in the fight to mitigate dysphagia’s impact is the oral nutritional supplement (ONS). Fortifying or adding an ONS to the patient’s diet can deliver high levels of protein or calories in a low volume.

Whichever option is taken, the power of good nutrition in rehabilitation should not be underestimated, or compromised because of swallowing difficulties, says Helen.

“Eating a well-balanced meal that meets the patient’s nutritional needs whilst being at a safe texture can lead to improved recovery times and a better quality of life.

“Healthcare professionals should consider all options when it comes to providing the best diet for their dysphagia patients, and always be aware of the potential challenges of home-blended meals.”

To discover a range of Softer Foods products that are IDDSI compliant and designed to help your patients and residents with dysphagia visit www.specialistnutrition.com to request a brochure or book a tasting session with Wiltshire Farm Foods.

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    How can clothing help people affected by brain injury?

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    Inclusive fashion may seem obvious to those with a disability, but the fashion industry has a long way to go, argues Emma McClelland, founder of inclusive womenswear label Kintsugi Clothing.

    It seems strange that, while the fashion industry is often experimental and boundary-pushing, designers are reluctant to relinquish conservative practices elsewhere.

    Diversity on the runway is infamously poor. As you filter down to the high street, it improves slightly, with fractionally better representation of plus-size and disabled people.

    But the looks you see in shop windows aren’t usually designed inclusively, regardless of whether the model wearing them has a difference.

    As a matter of semantics, some of the people I’m referring to when I write the world ‘disabled’ don’t identify as disabled. I also use this phrase to mean people who are living with the physical effects of brain injury – effects like muscle weakness, for example – and people whose impairment is temporary, such as people who are recovering from surgery.

    Emma McClelland

    Clothing can add value for many people when it’s designed inclusively, not just for the size 8-10, white, non-disabled and tall, toned male ideals we’re used to. Don’t disabled people just wear “normal” clothes like everybody else?

    Some can, and do. Likewise, some people need – or simply prefer – clothing that has been adapted specifically to solve challenges presented by certain impairments or health conditions.

    This is why adaptive clothing is so important.

    Take, for example, a woman whose brain injury has caused ataxia. The tremors in her hands make fastening small buttons a frustrating endeavour.

    Adaptive clothing might come into play here with a blouse that appears outwardly to have buttons down the front but actually has concealed magnets that make dressing easier.

    Or, say someone is using a wheelchair because their brain injury has caused hemiplegia. Trousers designed to be worn in the seated position – with a specific fit, longer leg length or higher back – are a specific solution.

    They’ll probably also have pockets located further down the body (rather than at hip level) to make them more accessible when seated, and belt loops to help with pulling them up.

    These are just some examples of the power of adaptive clothing design. ‘Adaptive’ and ‘inclusive’ design are often used interchangeably but there is a difference.

    If adaptive design refers to clothing that has been designed specifically to meet certain needs, inclusive design refers to clothing that has been designed with some of those needs in mind.

    Sadly, when it comes to fashion, that imagined customer is rarely disabled. Items are made without the company thinking about how their products will be used by people with disabilities.

    This is where inclusive design comes into play.

    Fashion brands should be creating clothing that anybody can wear, not just a specific person with specific needs. For the designer, it’s about thinking about how certain elements could add value to someone with a difference, whatever that difference may be.

    For example, using certain fabric types and not using scratchy internal labels might make the world of difference to someone who experiences sensory irritation as a result of their condition.

    For any other person, those features might be nice. They might not care about them at all. But they are still there for those who do. They are ‘inclusive’ features.

    Inclusive design matters because we live in a world where 15 per cent of the population experience some form of disability. Any one of us can develop a disability – even if temporarily (after a leg or arm break, for example).

    Brain injuries are an example of how someone’s world can change in an instant. If that happened to me, I wouldn’t want to be faced with a world so inaccessible that clothing is a struggle and dressing myself is exhausting.

    Nor do I want to feel limited in terms of style. This is why I set up Kintsugi Clothing: to create beautiful, accessible apparel that is inclusive of a range of body types.

    Fashion is something we should all be able to enjoy and it’s not as difficult as some brands might think to be inclusive about your design process. Ask disabled people what would make life easier for them and think about how you can work some features into your designs that will add value.

    Inclusive design is a developing niche and I, for one, can’t wait to see where it goes in the future.

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    Brain injury in the new normal: How to get a good night’s sleep during the pandemic

    Consultant clinical neuropsychologist Dr Keith G Jenkins and Dr Jenny Brooks, consultant clinical psychologist on how to sleep well during the pandemic.

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    Getting a good night’s sleep is important all of the time, as we know from our work with people with brain injury, but some people have seen their sleep pattern alter during the pandemic.

    This change to the normal time people go to bed and fall asleep and/or wake up in the night, may be due to several factors, including changes to the way the person spends their day in terms of education, work, meeting up with family and friends, seeing support workers and / or attending rehabilitation sessions. Also they are perhaps exercising, playing sport or doing other activities less.

    Lower mood, such as feeling sad, having worries or feelings of uncertainty, can also impact on your ability to get to and stay asleep.

    Changes to our sleeping habits can lead to a poor sleep-wake cycle, otherwise known as our body clock. Not getting enough sleep, or good quality sleep, can cause fatigue and tiredness throughout the day. You might feel unwell as a result, and this can increase anxiety and worries further, making getting through the day more difficult. It might also mean that relaxing to sleep becomes harder, and a vicious downward spiral can follow.

    Fortunately, there are some very simple things we can all do to support a good night’s sleep. These include going to bed and getting up at the same time each day to support your body clock, exercising during the day if you can safely do so and trying not to exercise too close to bedtime. Avoiding caffeine or nicotine close to bedtime – or reducing them if you can’t stop completely – can also help.

    Be aware that alcohol might mean that you fall asleep faster, but it can disrupt the second stage of sleep, meaning that the quality of your sleep may be reduced, which can then lead to you feeling tired the next day.

    It’s generally best to avoid things that may cause you upset or stress before your usual bedtime, like a difficult phone call or a scary TV programme. It is also important to reduce your exposure to blue light, for example from smartphones and laptops, before bedtime.

    Blue light tricks your brain’s body clock into thinking it’s daytime and suppresses the production of melatonin. This is the hormone you need to feel sleepy.

    Try to have a bedtime routine that supports you in winding down, whether that means a bath, listening to music or a relaxation CD. It’s also really important to ensure that your bedroom supports your sleep, so consider things such as lighting and temperature. Most people tend to find that a tidy bedroom can help the room feel more relaxing too.

    Of course, many people with an acquired brain injury tend to experience fatigue and often find having a nap in the day can help them to manage this. But an afternoon nap should end before half past three in the afternoon at the latest, with your next sleep being in bed for the night. Headway has a very helpful section on its website regarding managing fatigue.

    While bedrooms should predominantly be for sleeping, some people have been spending more time in them during the pandemic doing other things – perhaps using them as a quiet space to complete education or work.

    For those in hospitals or care homes, increased bedroom time may be due to isolation procedures. If this is the case, perhaps consider having a chair or a beanbag to sit on, rather than lying on your bed during the day. Where possible, try to come out of your room for meals.

    If you find it is taking a long time to get to sleep, try getting out of bed and doing something else, like reading a book or a magazine, and then return to bed when you are feeling sleepy.

    The advice we have given here is in line with the recommendations on the NHS website.

    A good night’s sleep is crucial to thinking at our best, which is especially important if you are working or being educated at home; and there are some other simple things that you can do to boost your productivity in these scenarios.

    Firstly, make sure you have a shower and get dressed rather than working in pyjamas or dressing down. Getting dressed helps you to psychologically get into work mode. Have a designated workspace and, if possible, keep the area tidy.

    Have a timetable of when you’re going to work and try to stick to it. As we’ve mentioned, writing a timetable down and ticking off jobs completed supports feelings of achievement. Make sure you schedule regular breaks during which you move away from the workspace. You might go into your garden or make a drink, for example.

    Try to minimise distractions. That might mean moving your mobile phone out of reach, turning off the TV and considering where the quietest places are. If you live with other people, you might want to consider how to ensure they don’t disturb you. This might just mean letting them know what your work timetable is.

    One distraction that can’t be ignored, however, is the need to wash our hands to prevent the spread of the virus.

    We hope you have found this guide useful and wish you a safe and happy summer as we all continue to rise to the challenges presented by COVID-19.

    This is one of five blogs in a series on living in the new ‘normal’ with a brain injury, based on a webinar produced for ABI London (ABIL). See below for links to other articles in the series. Dr Keith G Jenkins is consultant clinical neuropsychologist at St Andrew’s Healthcare and chair of Headway East Northants. Dr Jenny Brooks is a consultant clinical psychologist working independently and a director of The ABI Team. For any questions about this topic email update@standrew.co.uk. 

    Fitting COVID-19 guidelines into your routine

    Keeping a check on your wellbeing

    How to keep in touch with loved ones during the pandemic

    How to keep a routine during the pandemic

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    Brain injury in the new normal: How to keep a routine during the pandemic

    Consultant clinical neuropsychologist Dr Keith G Jenkins and Dr Jenny Brooks, consultant clinical psychologist on how to keep a routine during the pandemic.

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    Daily structure has changed for us all during the COVID-19 pandemic and this can feel very unsettling. A regular structure and routine is important for many reasons.

    First, it increases feelings of normality and control, as well as meaning and purpose; all of which can help to push back against low mood. Second, it can reduce feelings of stress and anxiety through distraction.

    Finally, a structured timetable can reduce the burden associated with some of the behavioural and cognition issues that can occur after brain injury. These include difficulties in starting an activity, planning, organising and making decisions.

    So what can structure and routine look like during the pandemic?

    A daily routine could include a mixture of self-care activities, such as having a bath, shower, or pampering yourself, completing some household chores and keeping active through exercise. Doing something fun that you enjoy, such as an online live music event, a quiz or watching a favourite film or TV programme, could also be included.

    Try focusing on those activities that you find uplifting, positive or funny. Also some find it helpful to limit their watching of the news about COVID-19 as it can lower mood and increase their worries. There are lots of ideas for activities you can do at home in our resource pack which can be viewed via the ABIL website.

    Having a daily timetable written down can help to ensure that structure and routine become the norm. It can also be reassuring to be busy and have things to do.

    Checking off activities completed, can support you in feeling that you’ve achieved and accomplished things throughout the day.

    Furthermore, a written timetable can help you to manage your time effectively, and support variety in your day. If you have difficulties getting started on something, or beginning an activity, you could share your timetable with someone else and ask them to help you get started, perhaps through a phone call or a text.

    If you prefer to do this yourself, you can set up reminders on your phone or use other devices, such as Alexa.

    This is one of five blogs in a series on living in the new ‘normal’ with a brain injury, based on a webinar produced for ABI London (ABIL). See below for links to other articles in the series. Dr Keith G Jenkins is consultant clinical neuropsychologist at St Andrew’s Healthcare and chair of Headway East Northants. Dr Jenny Brooks is a consultant clinical psychologist working independently and a director of The ABI Team. For any questions about this topic email update@standrew.co.uk.

    Fitting COVID-19 guidelines into your routine

    Keeping a check on your wellbeing

    How to keep in touch with loved ones during the pandemic

    How to get a good night’s sleep during the pandemic

    Continue Reading
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