How can we best understand dementia?
Dementia causes a set of problems that are related to each other. These include memory loss, trouble communicating, confusion and difficulty with walking around. There might be difficulty with recognising people they know, even if they are close friends and family members. Although it is a medical issue, it is better to think in terms of a change in how the person experiences the world. The aim is to try to understand what the person is experiencing. Then the physical and social environment can be adjusted to be safe and not distress them. Since no two people have dementia in the exact same way, what needs to be done will also not be the same for any two people with dementia.
How is sleep different for people with dementia?
Up to half the people with dementia will have a sleep pattern that is not normal. They are often sleepy during the day and have difficulty with sleeping for long periods at night. They may have less deep, restful sleep and a lighter sleep. This could be due to dementia directly or due to changes in how they perceive the world. Some forms of dementia can disrupt the Body Clock.
What are the causes of these changes in sleep?
There are many possible causes of these sleep changes. The way that the brain controls sleep may be changed. The person may have unmet needs or problems such as pain. They may have had sleep problems in the past, or they might be living in a place where it is hard to sleep well.
It is also possible that their poor sleep may be linked to breathing or other sleep related problems such as Obstructive Sleep Apnea, Snoring or Periodic Limb Movements.
Some medications may affect sleep, including those that are used in dementia. These include pain relievers, drugs to treat Parkinson’s disease and antidepressants.
What do these sleep problems lead to?
Not getting enough sleep will lead to a lower quality of life and greater difficulty with functioning during the day. The person may be tense, sleepy, have problems focusing, fall over or have mood problems such as depression. They may talk in their sleep, wake up often and may wander around during the night.
Wandering is of great concern for carers. It disturbs the carer’s sleep and may be a danger for the person with dementia. This means that the at-home carer also has trouble getting enough sleep.
What can be done to make sure a person with dementia gets enough rest?
As a rule:
- Try to get them to have sleep and wake patterns that reflect their sleep habits from the past that they found helpful. For example, if they used to fall asleep to music, then they should be allowed music. Or, if they typically got up early, then they should still keep getting up at the same time.
- The use of Melatonin has been tried with people living with dementia and did not help.
- Massage has been found to help for some people.
- Keep the same getting-ready-for-bed routine from the past.
During the day:
- It is important to stay active.
- Being exposed to bright light or sunlight controls Melatonin levels and sends the brain a message to be awake. Outdoor light in the morning and in the evening helps keep the Body Clock on a stable routine.
- Older people need fluids but these should be reduced in the afternoon and evening.
- About 4 in 10 older people have naps. Short naps may be helpful if there is inadequate sleep at night. It is better if the naps are before lunch so the person is more tired when they go to bed.
During the night:
- The sleep room should be dark and quiet at night. Often people with dementia wake up and think it is morning if there is light.
- For safety and finding the way at night, use red or amber lighting. Lights of these colours are less alerting.
- You could try acting out a “going to bed” routine for them to copy.
- If a person really wants to be up at night, do not force them to be in bed or to sleep. They need an accepting environment that helps them feel safe.
How can we help people who wander at night?
When people living with dementia wander at night they don’t get as much good sleep. This lowers their quality of life. Don’t just assume that wandering is a result of dementia. Often things can be done to help. You could try the following:
- First think about the history of the person. If they have had different sleep patterns in the past, they may be trying to get back to that routine.
- It could be that there is a ‘cause’ that makes them wander. There might be something around them that disturbs them. Some experts believe that people with dementia get disturbed by things around them more easily. This could be the case if they wander at the same time every night. It is also likely if others in the same room or house are having trouble sleeping.
- Finally, wandering may stem from a problem or unmet meed. The person may not be able to express what is wrong using words. They may be moving due to pain, lack of comfort, feeling lonely, fear, not being familiar with what is around them, or many other things. The behaviour can be aiming to meet the need. For example, they might be pacing because they are bored. If they are saying the same thing over and over, it may be that they are trying to tell you about an unmet need. Finally, abnormal behaviour may be the result of an unmet need e.g. screaming from frustration or pain.
What are the effects on the family carers of people with dementia?
There are six main things that disrupt the sleep of family carers:
- Having to provide physical care
- Being ready to give care
- Keeping an watch over them
- Disruptions because of what the person with dementia does
- Continued sleep disruption even after care duties end
- It helps if carers know about these concerns and understand they are not unusual. They can start to deal with them with support from helpers or health care providers.