Sleeping without the enemy
Making a powerful insomnia potion by mixing neuro occupational therapy with CBT-I.
Sleeplessness can make managing a neurological disorder a living nightmare.
Quality of life, concentration, mental well-being and personal safety can all be compromised when insomnia breaks the bedtime rules.
And if other symptoms arising from a brain or central nervous system injury are also playing up, sticking to a good sleep routine can suddenly seem impossible.
So, it’s comforting to hear that one restorative recourse continues to prove a real knock-out for many people living with insomnia.
And when it’s incorporated into an occupational therapy program, it makes for a punchy sleeping potion that can be adapted to individual needs.
Snooze, don’t lose!
The sleeping aid that’s making more and more people with neurological conditions rest easier is cognitive behavioural therapy for insomnia (CBT-I).
And it was one of the hot topics headlining the recent annual conference of the UK’s Royal College of Occupational Therapists’ specialist neurological practitioners .
Rebecca Jeffcott, Specialist Occupational Therapist at The National Hospital for Neurology and Neurosurgery in London, summed up some of the evidence so far of CBT-I’s positive impact, citing studies that show:
- CBT-I improved sleep with chronic pain with lasting effects (Koffel et al. 2020, Tang et al. 2015).
- Occupational therapy enhanced by CBT-I improved sleep, fatigue and quality of life for people with MS (2020 Akbarfahimi et al.).
- CBT-I improved sleep, depression and anxiety in Parkinson’s Disease patients (Lebrun et al. 2019).
CBT-I aims to find out what’s causing the sleeping problems or insomnia, Rebecca explained.
And if behaviour, thoughts or emotions detrimental to sleep are identified as underlying reasons, CBT-I offers ways to address them.
“In the general population, there’s a high prevalence of sleep disturbance, and this increases further in the neuro population,” Rebecca said.
“Common problems include difficulty falling asleep, frequency waking, difficulty returning to sleep and waking too early.”
And, if left unchecked, insomnia’s knock-on effects such as fatigue, memory and attention difficulties, low mood and headaches, can heavily impact day-to-day function.
In the mix
As with any sleeping aids or interventions, before starting CBT-I, check with the patient’s or client’s GP first; Rebecca reminded the neuro occupational therapy conference.
It’s important a GP has ruled out any of the sleeping disorders first because a lot of these need specific medical intervention.
Such sleeping disorders include obstructive sleep apnoea or movement or circadian rhythm problems.
For all other sleep difficulties, including insomnia, however, favourable evidence for CBT-I is mounting.
“There’s lots of evidence showing it works,” Rebecca told delegates on day two of the virtual RCOT conference.
“It’s successful for all ages, genders and backgrounds and people with comorbidities,” she said.
“It’s thought to have a 70 per cent success rate in the general population, but does it work for people with complex neuro disability?
“The majority of studies are pilot or case reports within the neuro population, but these seem to have positive results where the programme is delivered in full or adapted.”
Other evidence-backed techniques to combat insomnia remain helpful, Rebecca advised, including relaxation and sleep hygiene.
But CBT-I can incorporate these and complement them with other techniques to change dysfunctional thoughts and behaviour patterns contributing to a poor sleep cycle.
CBT-I is a potent mix of several components that can be combined all or in parts into an occupational therapy plan, Rebecca said.
Components can be adapted to individual needs, and there are several components to consider, such as:
An important part of CBT-I is to educate the patient on the facts of sleep and try to eliminate some of that anxiety about sleep performance.
People worry about the fact that they’re not asleep, which makes the problems worse, Rebecca said.
For example, she went on, and fake news may make us believe all sorts of untruths about insomnia, such as:
- You’ll die younger if you have insomnia – NOT true!
- Having insomnia increases the risk of dementia – NOT true!
- Insomnia increases the risk of cancer….NO!
- We all need 8 hours sleep…Nope! We’re all different, and it can change.
Rebecca said, “It’s just important to focus on how you feel during the day.
“Good daytime function is feeling alert and rested most of the day on most days, but we all have big energy dips.
“Waking up during the night for short periods is a normal part of the sleep cycle, and the difficulty is if you wake up and stay awake for prolonged periods.”
If you’re going to implement CBT-I in the neuro population, you really need to have a complementary fatigue management programme…
Getting into a regular sleep-wake routine can be particularly challenging for people with neurological disorders, Rebecca noted.
“Often, we have a lot of fatigue in the neuro population causing bad days where they might sleep all morning or all day,” she said.
“They might lack the structure to their day because they don’t need to be up for a specific time.
“But lack of sleep overnight causes people to sleep during the day…so a crucial CBT-I strategy is to anchor the day.”
As the nautical term suggests, anchoring the day means firmly sticking to its start time.
“The anchoring-the-day strategy is the core of improving sleep; the basis on which all the other strategies are built,” Rebecca said.
“It involves waking at the same time seven days a week… and that’s no matter how well you slept or what time you went to bed.
“The aim of that is to regulate circadian rhythms and target another sleep process called the homeostatic sleep drive.
“That is, the longer you’re awake, the more drive you build up to sleep at nighttime.
“And if you wake up at the same time each day, you’ll build up enough sleep drive to sleep at a regular time each night.
“Sleeping during the day can reduce your drive to sleep at night, so we tell patients it’s like leaking some of your sleep fuel for night-time.”
These two techniques are adapted for people with neurological disorders who may also have:
- Memory problems.
- Cognitive disfunction.
- Compliance issues.
- Reduced motivation.
- Carer schedules.
But Rebecca advised, “If you’re going to implement CBT-I in the neuro population, you really need to have a complementary fatigue management programme to manage them holistically.
“Use a graded approach to waking up early…and if they have carers, try to get them to sit up in bed, at least, while they wait for the carer.
“With the napping, use timers if they’re going to sit down and have a rest – and we promote rest as part of fatigue management.”
But limit naps to no longer than 20 minutes and always before 4 pm.
Further insomnia studies, Rebecca reported, stress the importance of addressing inactivity or boredom as a cause for daytime napping.
Help train the brain to view the bedroom as a place for sleep, not restlessness and staying awake.
Help it disassociate from unhelpful stimuli such as:
- Watching television.
- Using the phone or computer.
While CBT-I is underway, the bedroom may only be used for sleeping, sex or getting dressed, Rebecca stressed.
Alarms are set at the same time every day, with 15 minutes added for a lie in if wanted on a day off.
If the person wakes during the night, they’re encouraged to follow another 15-minute rule: they have 15 minutes to fall back to sleep.
If they don’t, they’re advised to:
- Get up and go to a place where they’re generally awake.
- Do something enjoyable there until they feel sleepy.
- Return to bed to sleep…or repeat the process, if needed.
If their mobility is limited, adapt according to need by:
- Turning on the light.
- Engaging in a relaxing activity.
- Placing a chair by the bed.
- Putting a screen around the bed.
- Moving to the other side of the bed.
- Sitting up in bed.
- Using a different coloured blanket.
We found this really effective with people whose mood or stress, or anxiety is a key factor in their sleep difficulties.
When it's memories, worries, or other thoughts barring sleep, Rebecca said that creating a buffer zone can help.
“What we try to promote is a period of relaxation about an hour and a half before bed; a time to empty the mind.
“We use a constructive worry diary to help people write down their worries and make a plan to deal with them the next day.”
This is followed by relaxing activities. “These are ‘I’d like to’ activities rather than ‘I should’ or ‘I must’ activities,” Rebecca emphasised.
“We found this really effective with people whose mood or stress or anxiety is a key factor in their sleep difficulties.
“You might get some resistance, with people saying they haven’t got time for an hour and a half before bed.
“But there’s another strategy here that can help.”
This is the technique that works particularly for patients with chronic pain. Pain isn’t a barrier to the effectiveness of this.
Pushing bedtime to a little later serves two purposes in the battle against insomnia, according to Rebecca.
“Mild sleep deprivation strengthens the drive to sleep at night,” she said, “but it also allows for more time for the buffer zone.
“Many patients go to bed too early, but if there isn’t enough drive to sleep, they will just lie awake worrying about sleeping or fall asleep and wake too early.”
So, sleep restriction – making bedtime later, in this case - is a technique that can help, although, Rebecca stated, it’s not safe for all conditions, such as epilepsy.
And there can be drawbacks as it can:
- Result in tiredness
- Cause distress
- Require a lot of perseverance
- Involve several calculations.
“Patients can find it is challenging to stay up, especially if they’ve got carers to support their routine, Rebecca said.
“So, the patient’s safety and mood must be considered carefully before implementing.”
In some cases, a gentler approach called sleep compression may prove more suitable and effective.
Again, the day is anchored, and bedtime is set, but 15 minutes is added each week until the person falls asleep more quickly or wakes less frequently.
Relaxation techniques known as thought blockers can help shut out unwanted thoughts that prevent sleep, Rebecca said.
Thought blockers are designed to help relax the body and can be useful to distract from pain.
Types of thought blocking methods used in CBT-I include:
- Eyes open – keeping the eyes open for as long as possible when comfortable in bed with lights off.
- The – in bed with eyes closed, repeat the word ‘the’, inwardly or spoken, every one to two seconds.
- Progressive muscle relaxation – tense and relax different muscle groups.
- Guided imagery – focussing on something calming.
Rebecca encouraged the occupational therapy community to “educate and myth bust” to reduce sleep anxiety.
She also urged them to incorporate CBT-I in a multi-modal approach to helping people with neurological disorders.
“Use the strong evidence base to sell the techniques,” she said. “Enrich sleep intervention with CBT-I principles.”
And always, she stressed, “use as part of a holistic fatigue management programme.”
*Rebecca’s presentation was based on a CBT-I masterclass offered by the Royal London Hospital for Integrated Medicine.
More details here: Education Department (RLHIM): CBT-I Masterclass
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