Dementia - behaviour changes

Dementia can change the way someone behaves. These changes might be subtle or dramatic. They might come and go or persist. They might lead to the person saying and doing things that are very out of character.

These changes aren’t deliberate, but they can be upsetting for the person with dementia and the people close to them.

There are many reasons why a person’s behaviour may change, including:

• physical changes in the brain caused by dementia
• inability to communicate as well as they used to
• changes in their environment, like temperature, noise, crowds, light, large rooms or open areas
• changes in abilities like vision, hearing or thinking, that can make ordinary tasks overwhelming and stressful
• changes in health, due to medication side-effects, not feeling well, or an underlying illness
• physical discomfort, like hunger, tiredness, dehydration, being too cold or warm, constipation or the need to go to the toilet
• emotional or physical needs that aren’t being met.

Every person experiences dementia differently, but common behaviour changes include:

Following behaviour

If your family member or friend is living with dementia, you might notice they closely follow you around or ‘shadow’ you.

Often, this is a result of anxiety. The person may feel they are unsafe or uncomfortable in their environment. However, this may leave you with limited privacy or space.

While following behaviour isn’t meant to upset you, it can be challenging to deal with.

These are some tips to help:

• Try to get to the bottom of why the person behaves this way. Do they feel unsafe? Are they unsure of what to do next?
• It can be hard, but try to avoid showing irritation. Reacting is likely to make the person feel even less safe.
• If it’s appropriate, hug or gently touch the person to reassure them. Physical contact can let them know they are safe.
• Plan your daily routine so the person knows what to expect. Consider displaying the day’s activities on a noticeboard.

Seeking, exploring and pacing behaviour

It’s common for people living with dementia to move around for reasons that aren’t clear. They might appear to be:

• looking for something or someone
• trying to go somewhere specific
• trying to leave
• exploring their environment
• wandering without an obvious purpose
• pacing back and forth.

This can be confusing and upsetting for both the person with dementia and people close to them.

Causes of seeking, exploring and pacing

Because dementia can affect someone’s memory and ability to communicate, they may not be able to tell you their motivation. However, these are some common reasons:

• Memory loss: They might set off for a reason then forget what they were doing or where they were going.
• Finding or doing something from their past: They might be looking for someone or something from their past. Or they might believe they need to do a task from their old routine, like going to work or a previous home.
• Confusion about where they are: They might feel lost or uncertain about where they are.
• Night-time confusion: They might wake up at night and become disoriented. They might think it is daytime and decide to go outside. Or they might believe a dream is real and respond to it.
• Boredom or too much energy: Wandering might be a sign that they’re bored or not getting enough exercise during the day.
• Agitation: Dementia can cause people to feel restless or agitated.
• Feeling uncomfortable: They might be in pain, uncomfortable or need to go to the toilet. They might also be trying to leave somewhere that’s loud or busy.
• Continuing a habit: If they used to enjoy walking, they might want to keep doing this.

Reducing seeking, exploring and pacing behaviour

You can try to prevent or reduce this behaviour by:

• visiting the doctor to check whether illness, pain or medication might be causing it
• keeping track of the behaviour through a diary or log to work out patterns or triggers
• removing objects that might remind them to wander, such as shoes, coats, mail that needs posting or work clothes
• making it more difficult for them to wander. For example, you might move the door locks or add a buzzer that makes a sound when the door opens
• checking their clothes are comfortable
• making sure they have familiar items around them, particularly if they’ve moved house recently
• accompanying them on safe, planned walks
• giving them a safe place to walk.

Planning ahead for seeking, exploring and pacing behaviour

You can plan for this behaviour by:

• attaching identification to the person or sewing information into their clothes. Identity bracelets or Medic Alert bracelets are two useful options
• taking a photo of the person, so you can give it to the police if they go missing
• creating a list of familiar or favourite places they might visit
• telling neighbours and local business owners, so they can keep an eye out for the person.

What to do if they go missing

If your family member or friend goes missing:

• search the house, garden and nearby buildings (like a shed).
• write down what they were wearing
• tell your neighbours and ask them to watch out for the person
• walk or drive around the nearby area and check any other places they regularly visit. If you can, have somebody stay at home in case the person comes back
• contact the local police. Tell them that the person has dementia and let them know if you have any concerns about their safety. The police will need the person’s details, including a description of their clothes.

Once they have been found:

• tell the police immediately
• reassure and comfort the person
• try to get back into a regular routine as quickly as possible.

What to do if you meet someone who might be lost

If you suspect someone has dementia and think they might be lost, this is what you can do:

• Approach them from the front, so you don’t surprise them.
• If they’re sitting, get down on their level to speak to them.
• Speak slowly, calmly and clearly. Use reassuring body language.
• Say hello and use the person’s name if you know it. Introduce yourself and smile.
• Ask ‘Are you okay?’ or ‘Can I help you with anything?’
• Ask one question at a time. Use questions with a yes or no response. Don’t worry if the conversation doesn’t make sense right away.
• Move them away from traffic, noise and crowds to somewhere quiet.
• Ask if you can call someone for them. Prompt them for a phone number. They may be wearing or carrying some identification; ask if you can look at their ID and call the number on it. If you can’t find a contact number, call 000.
• If you think they’re injured, call 000 even if they say they’re okay. Someone living with dementia may find it difficult to understand or explain their pain.

Disinhibited behaviour

Inhibitions are the self-control mechanisms we all have that stop us doing things that break the rules of our society.

If someone close to you has dementia, you might notice that they stop following these social rules and behave in a way that’s very out of character for them.

This is called disinhibition, and it can look like:

• rude, tactless or hurtful comments
• sexual comments or inappropriate flirting
• undressing in public places
• touching their genitals in public
• impulsive actions, like dangerous driving.

Causes of disinhibition

Every person with dementia reacts to things in their own way. This means there can be a variety of causes for disinhibition, including:

• changes in the brain caused by dementia, which can lead to disorientation, confusion about people’s identities, or memory loss
• something in the person’s environment
• feeling frustrated by a difficult task
• feeling uncomfortable, sick or unwell.

In turn, this can lead to disinhibited behaviours. For example:

• If they’re confused about where they are or what time of day it is, they might start undressing to prepare for a bath or bedtime.
• If they think someone is their partner, they might make sexual comments or touch them inappropriately.
• If they have memory loss, they might have forgotten where the toilet is or how to use it.
• If they’re too hot or their clothing is too tight, they might take off their clothes.
• If they have a urinary tract infection, they might touch their genitals.

What you can do

If your family member or friend is showing disinhibited behaviours, there are a few things you can try.

When the disinhibited behaviour is taking place, you can support them by:

• staying patient and calm, even if the behaviour is embarrassing or upsetting
• reassuring and comforting them. If it’s appropriate, offer plenty of physical contact, such as hugging, arm rubbing or hair stroking
• gently reminding them that the behaviour isn’t appropriate
• trying to distract them, giving them something else to do or taking them somewhere private.

Over the longer term, you can help to prevent or reduce disinhibition by:

• trying to understand the reason why it’s happening. This can help you to work out how to respond or find ways to prevent it from recurring
• visiting the doctor to check whether illness or medication might be having an impact
• checking that their clothes aren’t uncomfortable, too tight or too hot, and buying new clothes, such as pants without zips.

Disinhibition can be very upsetting for families and friends. Make sure you’re caring for yourself too. Take regular breaks, rest, and plan time to do the things that support your own wellbeing.

Restless behaviour

Some people with dementia become more confused, anxious or restless in the late afternoon or early evening.

This is sometimes called ‘sundowning’. When it happens, the person may:

• become more demanding, upset or suspicious
• find it harder to concentrate or pay attention to things
• see, hear or believe things that aren’t real
• believe they’re in the wrong place, and want to ‘go home’ or ‘find Mum’
• become more impulsive.

These are some common causes, and some things you can try if someone close to you with dementia experiences restlessness in the afternoon.

Causes of restlessness in the afternoon

It’s not clear exactly what causes restlessness in the afternoon. However, it seems to occur as a result of changes in the brain caused by dementia.

There are a few things that can lead to afternoon restlessness:

• tiredness or lack of sleep
• feeling uncomfortable, hungry or needing to go to the toilet
• a change in routine
• a lack of light or daytime noises, which can make it harder for the person to know where they are
• a need for security, particularly for people in later stages of dementia.

What you can do

If someone close to you with dementia is restless in the afternoon, there are things you can do to help.

Planning the day

• Try to schedule activities in the morning and use afternoons for relaxing.
• If tiredness is making the person’s restlessness worse, encourage them to have a rest after lunch.
• If baths or showers are upsetting, plan them for the early afternoon. If they are soothing, however, time them so they happen just before bedtime.
• Try to limit sweets and caffeine in the afternoon and evening.

Helpful activities

• Create a familiar evening routine, such as closing the curtains, helping prepare dinner and setting the table.
• Find activities that are comforting to the person. These could include a favourite hobby, cuddling a pet or soft toy, singing familiar songs or having a drink of warm milk.
• Go for a walk outdoors or provide them with a safe place to pace.

A comforting environment

• Provide plenty of natural light.
• Turn bright lights down and reduce noise from TVs and radios.

Their doctor can also help identify health issues that might be contributing to the restlessness, and check whether any medications might be having an impact. They may be able to reduce the restlessness by making changes to the time or dose of the medication.

Changed sleep

We all feel better when we get enough sleep. That’s also true for people living with dementia. But it’s common for people with dementia to have problems with their sleep, particularly in the earlier stages of dementia. This can have an impact on their day-to-day life and lead to changes in their behaviour.

If you’re caring for someone with dementia, you might notice they:

• sleep during the day
• have trouble falling asleep at night
• wake up a lot during the night
• sometimes struggle to tell if it’s day or night
• become inactive or need less sleep.

You might also find your own sleep disturbed, by stress, overtiredness and the duties of caring.

Causes of sleep problems in dementia

Dementia can cause changes in the brain that affect our internal clock, which helps our body to know what time it is and tells us to sleep at night-time. Ageing can also change sleep patterns, meaning that someone might need more or less sleep than they did before.

But there are also many other reasons why someone with dementia might have problems sleeping. These can include:

• pain
• physical or mental health conditions, including angina, diabetes, urinary tract infections, depression, leg cramps or ‘restless legs
• side effects from medication
• snoring or sleep apnoea
• being overtired or not tired enough at bedtime
• feeling overstimulated, agitated or unable to relax
• being too hot or too cold
• feeling hungry
• not knowing where they are or where the bathroom is
• having bad dreams or nightmares.

What you can do

If someone close to you with dementia has sleep problems, there are things you can do to help.

Medical options

• Book an appointment with the person’s doctor to check whether physical illness, mental health conditions or medication side effects might be affecting their sleep.
• Keep a sleep log or diary to help identify sleep patterns.
• Ask the doctor about sleep medications, including any negative effects for people with dementia.
• Consider using pain relief at bedtime to reduce any pain.

Adjusting the bedroom

• Try to keep the bedroom at a constant temperature. If the person wakes up during the night, check whether they’re too cold or too warm.
• If they’ve moved house, put familiar objects in the bedroom.
• Use nightlights to softly light the room. This can also help if they struggle to find the bathroom, or you could try a commode or pot by the bed.
• Move or cover bedroom mirrors if the person can’t recognise themselves in the reflection.
• Put daytime clothes away at night. Seeing daytime clothes may make the person think it’s time to get up.

Planning the day

• If there are tasks or activities that are upsetting for the person, try to schedule them for the morning or early afternoon.
• Encourage them to exercise, as this can help with sleep. Try for one or two walks a day.
• Avoid too much sleep during the day.
• Limit caffeine, alcohol and screentime, particularly before bedtime.

Bedtime

• Try a calming back rub, if it’s appropriate.
• If a bath or shower is soothing, consider timing this for bedtime.
• Offer them a herbal tea or warm milk. You could also make them a snack if they’re waking up hungry.
• Play a radio or relaxing music by the bed.
• Gently remind them that it’s night-time and time to sleep.
• If they refuse to go to bed, offer an alternative such as sleeping on the couch.

If you’re caring for someone living with dementia, you might also find your own sleep is affected. Try to make sure you get enough rest and can take regular breaks.

For more on how dementia affects sleep, listen to Dementia Australia’s Hold the Moment podcast episode Hold on to sleep.

Dementia Expert Webinar: Changed Behaviours

Intimacy and sexual behaviour

Dementia can change the way someone feels about sex and intimacy. It can change what they need and want, and how strongly they feel about it. It can also change the way they behave.

If you live with dementia, you or your partner might find that:

• you find it more difficult to support and care for your loved ones
• you need more or less sex or intimacy
• you find it physically difficult to have sex
• you behave sexually in inappropriate situations — for example, you might make sexual comments to someone who isn’t your partner.

These changes can be very upsetting. It might be hard to do, but talking with your loved ones or discussing it with a professional can help.

Supporting intimacy and sex

If you live with dementia, you can still enjoy loving relationships, affection and sex.

However, you might feel frustrated or lose confidence, especially if there are some things you can’t do any more. It can affect the way you feel about yourself, your partner, and intimacy and sex.

It can be tough to open up, but there are a few things you can do:

• talk about any sexual changes you’re experiencing. It can help reduce confusion, hurt, blame or guilt
• talk about both of your needs and expectations, now and in the future
• find new kinds of sex and intimacy that work for you both. This might include sexual touch, cuddling or sharing special memories.
• talk to your doctor or counsellor if these changes are causing either of you emotional or physical distress.

Depression, and some medications, can reduce your interest in sex. If you think this is happening, talk to your doctor about your options.

For partners of someone living with dementia

If your partner has dementia, you might find the condition causes their relationship with you to change. They might become sexually demanding, sometimes at unexpected times or in inappropriate places. Or they might lose interest in a physical relationship.

Your sexual interest in your partner might also change, particularly as your caring role increases. You might want to reduce your sexual engagement with them, or you might not want sex with them at all. That’s understandable, and common.

What you can do

If your partner is behaving inappropriately, or you feel uncomfortable, there are a few things you can try:

• Gently discourage the behaviour. Use a calm, neutral tone to avoid shaming them.
• Consider why the behaviour might be happening. Are they bored or distressed? Do they need to go to the toilet?
• If you can, redirect them to another activity.
• Provide opportunities for sexual expression in private. You can do this together or by yourselves.
• You can also support your partner’s needs in non-sexual ways:
• Find ways to include physical touch in your day-to-day routine, including holding hands, hugging or massage.
• Help them feel valued with activities they enjoy. This could include exercise, listening to favourite music and reminiscing.

Looking after yourself

Whatever situation you’re in, you might feel bewildered, hurt or guilty. This is very normal, but there are some things you can do to look after yourself:

• Speak to a friend, family member, doctor or counsellor if you’re struggling. Or consider joining a support group. This can help you feel that you’re not on your own.
• If your partner isn’t interested in sex, you might want to find ways to meet your own needs without involving them.

Dementia Australia support

When I was diagnosed with Alzheimer’s (disease) I had never been so scared in my life […] I am happy to say that I have received amazing support from my family, medical team and Dementia Australia.

- Linda, living with young onset Alzheimer’s disease

Whatever your experience of dementia, we're here for you. You can contact the National Dementia Helpline any time of the day or night for information, advice and support.

Where to get help

• Your GP
• The National Dementia Helpline 1800 100 500
• NDIS: the National Disability Insurance Scheme - available if you’re diagnosed with dementia when you’re under 65.
• My aged care - support in navigating decisions around aged care.
• Carer Gateway - emotional and practical services for carers.
• Dementia Behaviour Management Advisory Service (DBMAS) - 24/7 advice for people caring for someone with dementia.