Managing Sleep Disturbance in Lewy body dementia
Managing sleep disturbance in Lewy body dementia
Problems with sleep are common in dementia. They affect approximately 40% of people with Alzheimer’s disease and up to 90% of people with Lewy body dementia.
Sleep disturbance can include: difficulty falling asleep; difficulty staying asleep at night; restlessness during the night e.g. walking around, acting out dreams, movement disorders, being woken by dreams, hallucinations, needing to go to the toilet; and excessive daytime sleepiness.
Reduced activity and sleeping during the day can also lead to difficulties with sleeping at night.
Being disturbed at night on a regular basis can be very distressing and have a significant impact on the well-being of both the person with dementia and those caring for them.
In Lewy body dementia, sleep-related changes often occur months or even years prior to the onset of other symptoms.
What does sleep involve?
Sleep is a natural state of rest occurring each night. It is essential in helping our mind and body to recharge.
Two main factors influence whether we feel tired and ready for sleep or awake and alert.Our internal ‘body clock’, located deep within our brains, creates a 24-hour circadian rhythm that makes us feel tired or alert at regular times.
A chemical substance builds up in our brain when we are awake, creating ‘sleep pressure’ to fall asleep. The longer you are awake the more that chemical accumulates and the sleepier you feel.
Melatonin is a natural hormone that is released when it gets dark, to tell the body to prepare for sleep. Once sleep is underway, melatonin slowly decreases in concentration and production usually stops once the body notices it is light. As we age, the body secretes less melatonin which can affect sleep quality.
A good night’s sleep?
How sleep changes with age
What causes sleep disturbance?
Dementia and sleep
Lewy body dementia and sleep
REM sleep behaviour disorder
Parkinson’s symptoms and sleep
Apathy
Cognitive fluctuations
Is sleeping for short periods during the day i.e. napping, good for you?
General napping rules
Useful resources
Managing sleep disturbances
Medication
Tips for people with dementia
Tips for family carers/friends
Summary
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In dementia, physical changes in the brain can affect how much or how well someone sleeps. A part of the brain called the ‘supra-chiasmatic nucleus’, which helps regulate sleep by responding to light, can be damaged. As a result people may be unable to follow a 24-hour sleep-wake cycle and instead sleep excessively during the day and sleep much less at night.
A syndrome that affects many people with dementia, particularly at dusk, is known as ‘sundowning’. This is often caused by tiredness and changes in light which can lead to confusion, restlessness, agitation and distress.
Lewy body dementia and sleep
In Lewy body dementia reduced levels of dopamine in the brain can disrupt the sleep-wake cycle. The presence of Lewy bodies (abnormal clumps of protein) in certain parts of the brain can result in a number of other symptoms which may affect sleep.
Sleep-related changes in Lewy body dementia include:
- REM sleep behaviour disorder – known as dream ‘enactment’ – in which the arms or legs move or thrash around while asleep.
- Parkinson’s related symptoms such as:
- Restless legs syndrome – an overwhelming desire to move the legs when awake or resting, usually in the evening and at night. Symptoms include tingling, burning, itching and throbbing in the legs.
- Sleep apno ea – when breathing momentarily stops during sleep and leads to waking up. Symptoms include loud snoring or choking noises while asleep.
- Stiffness and rigidity – causing discomfort or difficulty with turning over in bed.
- Nocturia – increased urination at night.
- Excessive daytime sleepiness – sleeping two or more hours during the day.
- Difficulty staying alert during the day and fluctuations in functioning.
- Apathy or lack of motivation leading to reduced activity levels.
- Insomnia – difficulty with getting to sleep or staying asleep.
- Not being fully alert when waking from sleep – feeling as though you are still in a dream on waking.
- Hallucinations – seeing or hearing things that are not real, or misidentifying objects in the dark.
REM sleep behaviour disorder
REM sleep behaviour disorder (RBD) is more common in Lewy body dementia. This is one of the core symptoms and may have been present for several years before other symptoms appeared.
RBD takes place during ‘rapid eye movement’ (REM) sleep.
Normally during REM sleep, the body experiences temporary paralysis of the muscles while the brain is active and dreaming. This allows us to dream quietly and safely throughout the night. In RBD, paralysis do es not occur. Instead, the body and voice act out dreams during sleep. Dreams may be very distressing and include fears of being attacked.
This can result in injury due to falling out of bed, banging into things or hitting someone whilst acting out the dream.
Parkinson’s symptoms and sleep
Disturbed sleep can be common in Parkinson’s due to symptoms of rigidity, stiffness, restless legs, sleep apno ea and increased urination at night. Advice should be sought from a clinician about management of these symptoms.
Parkinson’s symptoms can be worse during an ‘off’ period when the medication level is low. This may lead to stiffness, tremor, pain and difficulty with moving and turning in bed. If medication wears off during the night and causes problems, ask a healthcare professional to review the medication as slow release or longer acting medication may help.
General napping rules
The best time to nap is between 1pm and 3pm. This is when our sleep pressure has reached a peak and our sleep need starts to increase. Napping too late in the day, after 4pm, can impact on night time sleep.
A power nap of 20 to 30 minutes can be enough for a recharge, but some people may need longer. If you feel groggy when you wake and it starts to impact on night-time sleep, you’ve napped for too long.
If you’re feeling tired but can’t nap, use the time to just relax.
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