Dementia - behavior changes

Dementia can cause changes in the behaviour of friends and loved ones. Such changes are very common, but they can place enormous stress on families and carers. Understanding why someone is behaving in a particular way may help families and carers to cope.

Why behaviour changes#

There are many reasons why a person’s behaviour may change. Dementia results from physical changes in the brain, and these can affect memory, mood and behaviour. Sometimes the behaviour is related directly to these changes, but at other times it may be triggered by changes in the person’s environment, health or medication.

Understanding the cause will help you decide which strategies may be useful. Some carers find that keeping a log or diary helps them see a pattern developing, which makes it easier to identify the cause of the changes.

Always discuss concerns about behaviour changes with your doctor, who can check for a physical illness or discomfort and advise whether there is an underlying psychiatric illness. Specialist advisory services also exist in many regions to support families, carers and care workers who are concerned about the behaviour of a person with dementia.

Sleeping problems#

Problems with sleeping are common for people with dementia. Some people sleep during the day and are awake and restless at night. Some can no longer tell the difference between night and day, while others are simply less active than they used to be and so need less sleep. Sleeping problems or late-evening agitation are often a stage that eventually passes, and many people with dementia sleep more during the later stages of the illness.

Sleep problems are among the most difficult dementia symptoms for carers, so families and carers must be able to get enough sleep themselves. Plan regular periods of rest and regular breaks for yourself, as well as for the person with dementia.

Medical causes#

Sleeping problems may have physiological or medical causes, including:

• brain changes caused by the dementia that affect the ‘biological clock’ that directs our sleep patterns
• ageing, which changes sleep patterns so that some people need more sleep and some need less
• illness such as angina, congestive heart failure, diabetes or ulcers
• pain caused by conditions such as arthritis
• urinary tract infections that cause a frequent need to urinate
• leg cramps or ‘restless legs’, which can indicate a metabolic problem
• depression, which can cause early-morning waking and difficulty getting back to sleep
• side effects of medication, such as antidepressants and diuretics
• snoring and sleep apnoea

Things you can try include:

• Arrange a medical check-up to identify and treat physical symptoms.
• Ask the doctor about possible side effects of medication, and discuss whether a diuretic (which makes a person urinate) could be stopped or changed if it may be contributing.
• Treat pain with an analgesic (pain-relieving medication) at bedtime if the doctor agrees.
• Discuss whether sedatives may be contributing to the problem, and whether an assessment for depression is needed.
• In some situations, discuss with the doctor whether sleeping or tranquillising medication is appropriate. Sleeping medication may help in the short term to establish a better sleep cycle, but both types can have negative effects, such as increased confusion.

Environmental causes#

The person’s surroundings can cause sleeping problems in several ways. The bedroom may be too hot or too cold, poor lighting may cause disorientation, or the person may not be able to find the bathroom. Changes such as moving to a new home or being admitted to hospital can also cause disorientation and confusion. Things you can try include:

• Keep the environment as consistent as possible.
• Check whether the person is too hot or cold when they wake, as dementia can affect the body’s internal thermostat.
• Provide adequate lighting if shadows, glare or dim light are contributing to agitation or hallucinations.
• Move a bedroom mirror if the person becomes confused by not recognising their own reflection or others in the room.
• Install night-lights to reduce confusion and help the person find the bathroom, or place a commode next to the bed.
• Make sure the bed and bedroom are comfortable and familiar, as familiar objects can help orient the person.
• Avoid leaving daytime clothing in view at night, as this may make the person think it is time to get up.
• Make sure the person gets enough exercise, such as one or two walks each day.

Food, drink and routine#

Other causes of sleeping problems include going to bed too early, sleeping too much during the day, overtiredness, too little exercise, too much caffeine or alcohol, hunger, disturbing dreams, or agitation following an upsetting situation. Some suggestions:

• Cut down on caffeine (coffee, cola, chocolate) during the day and avoid it after the late afternoon.
• Cut down on alcohol and discuss its effects, and any medication interactions, with the doctor.
• If the person may be hungry at night, try a light snack just before bed or when they wake. Herbal teas and warm milk may also help.
• Avoid doing anything upsetting in the late afternoon.
• If the person refuses to go to bed, try offering alternatives such as resting on the sofa.
• If the person wanders at night, consider allowing this, but check that the house is safe.
• Try a back rub before bed or during a wakeful period, or a radio beside the bed playing soft music.
• Gently remind the person that it is evening and time for sleep.

Hoarding#

People with dementia may seem driven to search for something they believe is missing, and to hoard things for safekeeping. Causes can include:

• isolation, when a person who is left alone or feels neglected focuses entirely on themselves
• memories of the past, where present events trigger memories such as sharing a home with siblings who took their things, or living through hard times with a family to feed
• loss, as people with dementia continually lose parts of their lives, including friends, family, a meaningful role, income and a reliable memory
• fear, such as a fear of being robbed; the person may hide something precious, forget where it is and then blame someone for stealing it

Things that can help:

• Learn the person’s usual hiding places and check these first for missing items.
• Provide a drawer full of odds and ends to sort through, which can satisfy the need to be busy.
• Make sure the person can find their way around, as an inability to recognise the environment may add to the problem.

Repetitive behaviour#

People with dementia may say or ask things repeatedly. They may also become very clinging and shadow the person caring for them, even following them to the toilet. These behaviours can be very upsetting and irritating for families and carers. Things that can help:

• If an explanation does not help, distraction sometimes works, such as a walk, food or a favourite activity.
• Acknowledge the feeling being expressed. For example, ‘What am I doing today?’ may mean the person feels lost and uncertain, and responding to that feeling can help.
• Do not remind the person that they have already asked the question.
• Reduce repetitive movements by giving the person something else to do with their hands, such as a soft ball to squeeze or clothes to fold.

Wandering#

Wandering is quite common among people with dementia and can be very worrying for those concerned about their safety and wellbeing. Failing memory and declining communication may make it impossible for the person to remember or explain why they wandered. Reasons can include a changed environment, loss of memory, excess energy, searching for the past, boredom, confusing night with day, continuing a long-held habit, agitation, discomfort or pain, or believing they have a job to do.

Things that can help:

• Develop an action plan for when the person wanders, such as noting what they were wearing and contacting neighbours and the police.
• Arrange a physical check-up to see whether illness, pain or discomfort has triggered the wandering.
• Discuss the side effects of medication with the doctor, trying to avoid anything that may increase confusion, cause drowsiness or contribute to incontinence.
• Consider psychological causes, such as whether the person is anxious, depressed or frightened.
• Make sure the person carries some form of identification that includes their current address.

Sundowning#

People with dementia may become more confused, restless or insecure in the late afternoon or early evening. This is known as sundowning, and these changes can become worse after a move or a change in routine. The person may become more demanding, restless, upset, suspicious or disoriented, and may even see, hear or believe things that are not real, especially at night. Attention span and concentration can become even more limited, and some people become more impulsive, which may place them at risk.

It can help to visit the doctor for a check-up and a review of medication, and to make physical and environmental changes that keep stimulating activities to the morning while encouraging relaxation in the afternoon and evening.

Key points#

• Dementia can cause changes in the behaviour of friends and loved ones.
• Such changes are very common, but they can place enormous stress on families and carers.
• Understanding the cause will help you decide which strategies may be helpful.
• Problems with sleeping are common for people with dementia.
• Sleep problems are among the most difficult dementia symptoms for carers.

Where to get help#