Sleep
Most of us have an internal body clock which helps us regulate how long we sleep for and how long we are awake. For most people, sleeping at night time for around 7-8 hours is the norm. Some people also take a short nap in the middle of the afternoon.
Our bodies combine information from the availability of natural light, our routine day to day activities and a general awareness of how long we have been awake (or asleep) for, to provide our brain with information that it is time to go to sleep, or conversely, at the end of a period of sleep, time to wake up. There are also some specific hormones which are implicated in sleep patterns, and which provide additional information to our brain and body about the timing of sleep and our body clock. For example, when it is dark, we have eaten dinner, and we have watched the end of a typical evening programme on the television, we have the cues we need to trigger our bedtime activities and the move into the nighttime sleep period.
The ‘sleep-wake body clock’ of a person living with dementia may become damaged, making it harder to respond to the internal and environmental cues that regulate sleep. This can result in changes to usual sleep patterns.
Why do changes in sleep patterns happen?
Dementia can cause changes to the brain which disrupt our body’s sleep-wake cycle. It impacts our internal ‘body clock’ making it less obvious for our bodies to know when the ‘right’ time to sleep is.
The hypothalamus plays a significant contribution to the regulation of sleep and sleep patterns. This part of the brain is responsible for controlling the onset of sleep. Other parts of the brain which also have a role in the management of sleep include the amygdala, hippocampus and the thalamus, which prevents sensory signals from reaching the cortex of our brains whilst we are asleep.
Loss of cells, or damage to any of these areas of the brain, which occurs in dementia, is likely to have an impact on our sleep. As dementia progresses, it can also cause the brain to make less of the sleep hormone melatonin, which makes it harder to fall asleep in the evening.
Additionally, people living with dementia may find it harder to interpret cues from the environment around them or may misinterpret cues. For example, a scene during a daytime television programme in which people are getting ready for bed might trigger a person living with dementia to get ready for bed too.
For people living with a rare form of dementia there can be additionally complicating factors, such as a reduced ability to translate meaning from the environment around us, which makes it less obvious what the ‘expected’ course of action might be. For example, people living with semantic variant PPA ( svPPA) might not be able to attribute meaning from the bedtime prompts and cues that they would otherwise have used. The dimming of lights and laying out of nightclothes won’t necessarily translate into a cue or prompt to get ready for bed. For people living with posterior cortical atrophy (PCA) there may be visual disturbances which make it difficult for them to ascertain the location of the bedroom within the house, or the bed within the bedroom. Challenges with dressing and undressing can all add to reasons why bedtime is a less obvious marker in the day for some people living with dementia.
There are other factors which impact the way we sleep. These factors are relevant to everyone but may be particularly significant for people living with dementia, either because they have difficulties communicating the relevant information or because they are less able to recognise, identify and manage the information and its impact. These factors include:
- pain
- physical or mental health conditions
- medication side effects
- snoring or sleep apnoea
- being overtired or not tired enough at bedtime
- feeling overstimulated, restless or unable to relax
- being bored or inactive (see the RDS website page on engagement for further information)
- being too hot or too cold
- feeling hungry
- needing to get up to pass urine
- not knowing where they are or where the bathroom is
- having bad dreams or nightmares
- being confused or disorientated
- experiencing hallucinations or delusions
Examples of changes in sleep patterns in people living with dementia
“After the clocks go back in the autumn, Dad’s often taken himself off to bed by 6 o’clock in the evening. Whilst this isn’t a problem per se, it means he is awake and ready to get up again by around 4am. Again, this doesn’t necessarily need to be a problem in itself, but it impacts so many other things. He has been awake for hours before anyone arrives to help with washing, dressing and breakfast. In the meantime, he’ll often have a go at doing it himself– which sometimes kind of works out, but often doesn’t!”
“If we are watching a programme together and there are night time scenes on the screen, my sister will take the cue that it’s bedtime and head off to get her night clothes… it actually works well as a good prompt in the evenings, but we make sure we don’t confuse things by watching the wrong type of programme during the day!”
“It’s not so much the sleeping itself that is the issue, but it is the early evenings that seem to pose the biggest challenge. I have heard it referred to as sundowning, and that’s exactly it. As dusk arrives, Mum becomes increasingly agitated and anxious. It usually lasts a couple of hours, and in fact, I sometimes feel reluctant to start getting ready for bed later on, as we have often only had an hour or so of ‘proper’ evening time. I feel I need longer to unwind after all the energy that has gone into managing those couple of hours…”
“It’s the whole process of getting ready for bed that I dread. Navigating the stairs, undressing, putting bedclothes on, managing the washing, teeth brushing and all else that is required… it’s such a challenge. It would be easier just to fall asleep in the chair… I try to make the effort not to do this, but am thinking about getting a recliner chair which might make this more possible.”
Examples of changes in sleep patterns in people living with dementia include:
- getting ready for/into bed at unusual or inappropriate times
- getting up and dressed at unusual or inappropriate times
- taking inappropriate cues from the environment regarding the time of day
- having trouble falling asleep at night
- waking up a lot during the night
- sleeping less deeply
- needing more/less sleep overall
- sleeping more during the day
- taking naps
- sometimes struggling to tell if it’s day or night, or what time of the day it is, so becoming disorientated to usual sleep time
- sleeping in daytime clothes in the chair rather than facing the challenge of the preparation for bed
- not feeling properly rested after having slept
- experiencing vivid dreams
Tips, strategies and adaptations for changes in sleep patterns
Environmental
- Try to use environmental factors to our advantage (the RDS website page on the home environment for more information).
- Use simple words on whiteboards to depict whether it is morning, afternoon or evening. Writing the word ’bedtime’ might help some people with orientation, as might picture cards of the bedroom, the bed or nightclothes.
- Try using a ‘dementia friendly clock’ which is easy to read and has symbols to indicate daytime and night time (this example on the Alzheimer’s Society website for instance– please do shop around). Some people find it easier to use a speaking clock (examples via RNIB website).
- Ensure the bed is easily identifiable and accessible. The height of the bed, its position in the room, and what can be seen from the bed are important factors to consider. Using bold contrasting plain colours in the bedroom and bedlinen can help. For example, a pillow case that is a different colour to the quilt cover might make it easier for people to identify the right end of the bed for their head to go.
- Movement sensor mats or padded ‘crash mats’ might help reduce anxiety and so aid night time rest. Lowering the bed and ensuring the area around it is free of sharp objects can reduce the risk of injury should falls out of bed occur.
- Being in a bright environment during the day (particularly the morning), and a darker environment in the evening, can help to keep the ‘sleep-wake body clock’ working as well as possible.
- Try to keep the bedroom at a comfortable temperature, as being too hot or cold can make it difficult to get to sleep, and more difficult to get back to sleep if we awake during the night.
- Put daytime clothes away once they have been taken off as they can be a trigger for dressing if they are noticed during night time wakings.
- Remove or cover mirrors, pictures or door hangings which could be misinterpreted during the night.
- If it’s helpful, try keeping low lighting on throughout the night. Try using light sensors that demark the route to the bathroom from the bedroom and to ease anxiety about nighttime bathroom visits.
- Try having low level background relaxing music playing and experiment to find out what genre works best. Some people find spoken word to be a comfort, others find it confusing and prefer instrumental background music instead.
- Keep a non-spill easily identifiable beaker of water close at hand to avoid having to get up at night for water.
- Please note that some living aids (more information on the GOV.UK website) are eligible for VAT relief. If you are buying items yourself, ask about money back options if purchased products don’t prove as helpful as hoped. See the ‘additional resources’ section at the bottom of this page for additional website links.
Medical
- Request a review of medications, either with the GP or the pharmacist, to check whether there may be any known side effects that impact sleep.
- Request a review to check whether there are any other physical or mental health conditions that might be affecting sleep.
- Check that pain is being managed and have a conversation with a medical professional about the possibility of low dose prophylactic pain relief. Massage, heat pads and pressure reducing blankets might aid comfort and sleep.
- Keep a diary to see whether there are any patterns or triggers for factors that affect sleep.
Daytime and bedtime schedules
- Encourage daytime exercise and activity (at a safe and comfortable level), with routines where possible. Interesting and enjoyable activities during the daytime might help reduce daytime sleepiness and can also bring about feelings of satisfaction and tiredness which makes sleep at bedtime easier. Avoid too much stimulation in the evenings. See the RDS website page on engagement for activity suggestions.
- Avoid too much sleep during the day, if it is causing interruption to nighttime sleep hours.
- Try to create a specific bedtime routine to make up for lost messages that the brain can provide.
- Limit alcohol, nicotine, caffeine and screen time, especially in the afternoon and in the hours leading up to bedtime.
- Try soothing bedtime drinks which become part of the nighttime routine.
- Make sure that the bathroom has been visited before settling for the night.
- Make sure that enough has been eaten during the day so that hunger is not a reason for waking. A glass of milk or small amount of yoghurt is more easily digestible if nighttime eating is necessary.
- Try massage, back or arm rubs or a gentle head massage to help create a sense of relaxation and rest.
- If having a bath is accessible and enjoyable, maybe these could become part of the bedtime routine.
- If sundowning is an issue, try to find some way of changing the atmosphere before starting the evening bedroom routine. Moving into a different room, engaging other senses, for example by eating a meal, turning on some music or using sensory lighting as a distraction, can all help to delineate between the phases of the evening and create a more settled mindset before bedtime.
People living with dementia may find that they sleep more often and for longer than they previously did. As long as there are no other underlying medical causes for this, for example a low thyroid level or an iron deficiency, it can be helpful to accept that this can be one of the ways in which dementia can affect us. We sometimes struggle to recognise and accept that we don’t have to fill every day with ‘significant’ activity, and that quiet days at home, with periods of time asleep during the day, so long as it doesn’t interfere with our night time sleep, may be part of our new way of functioning. Family and friends may feel guilty at not having facilitated enough activity or stimulation, but it is important for everyone affected by dementia to allow themselves to adjust expectations and adapt to new routines and habits.
Vivid dreams are not uncommon in people with dementia. They can relate to the illness itself disrupting the normal sleep pattern or can be associated with some medications, e.g. cholinesterase inhibitors such as Donepezil. If a medication side effect is suspected, then sometimes switching taking medications from the evening to the morning can help; this should be discussed with the prescribing doctor before any changes are made.
If nighttime sleep is disturbed over a long time, there can be significant impact on wellbeing and health. As well as reduced energy and patience levels, anxiety levels can increase leading to feelings of frustration, anger and resentment for some people. Looking at options for carers to get some nights where sleep is not disturbed is important. Knowing that there are some respite (rest) opportunities built in to the calendar can significantly help us cope in the moment. Respite might be provided in the way of family or friends offering regular night time cover, either in their home or ours, or by care agencies who provide staff to come into the home and stay awake overnight in case of any need or assistance that is required. Respite care can also be provided in care home settings, and it is worth exploring the availability in our local area ahead of the need. See RDS website page on registering as a carer and becoming a carer for more information.
People who can help
Many people living with dementia work out ways to adapt to and manage the symptoms that they live with. Conversations with other people who are living with a similar diagnosis often provide empowering and insightful hints, tips and suggestions, shared by those who understand the impact better than anyone. There are some aspects of symptom management which professionals can assist with in meaningful and ongoing ways and it is important to engage the services of professionals where possible.