Dementia - emotional changes

Dementia can change someone’s mood and emotions, and the way they express them. 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 mood, emotions and expression 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 mood changes include:

Depression and dementia

Dementia affects a person’s emotional state. Dementia can also be a distressing experience. As a result, depression is very common among people living with dementia.

Depression can vary in severity. It can be a temporary reaction to an event—losing a loved one, for example. Or it can be an ongoing state that requires treatment.

It can be hard to know if someone with dementia is depressed as the symptoms can overlap. You might notice they:

• lose interest or pleasure in the things they used to enjoy
• lack energy
• lose their appetite
• sleep too much or too little
• express feelings of guilt, worthlessness or sadness
• are emotional or agitated
• seem more confused.

Causes of depression

People living with dementia in long-term residential care are most at risk of developing depression. But it can happen to anyone.

Some of the reasons people with dementia become depressed include:

• physical illness
• social isolation
• fatigue
• environmental factors like lack of sunlight and fresh air, or overstimulation from background noise
• a response to their dementia diagnosis, and the impact they think it will have on their life
• side effects from medication.

What you can do

If you think your friend or family member is experiencing depression, organise an appointment with their doctor. If the doctor diagnoses depression, they might:

• prescribe antidepressant medication. Ask about side effects and how you can watch for them
• refer the person to a psychologist or counsellor.

On a day-to-day basis, you can support the person by:

• sticking to a daily routine
• encouraging them to exercise, as this can improve their mood
• avoiding overstimulation by reducing noise and activity
• organising activities they used to enjoy, and include family and friends
• timing tasks for when they have the most energy
• being positive and supportive while respecting their experience
• including the person in as much conversation as they feel comfortable with.

Mindfulness

Mindfulness is the practise of being aware of your mind, body, and feelings in the present moment. How is your mind, body, and your feelings right now in the present moment? When you draw your focus to your thoughts, feelings and sensations, without judgment, you're practising mindfulness.

In this video, meditation facilitator Peter Hoare, describes the benefits of mindfulness and leads you through some simple mindfulness exercises.

Dementia expert webinar: benefits of mindfulness

For more on mindfulness, see the Dementia Australia Library guide to self-care, mindfulness and meditation.

Anxiety and dementia

Anxiety can affect people living with dementia, just like it can affect any of us. When the person is anxious, you might notice they:

• become restless, pace or fidget
• do the same things over and over
• cling to someone when that person tries to leave
• closely follow or ‘shadow’ someone.

These feelings of fear, unease or agitation can increase if they’re not treated.

Causes of anxiety

Finding out what is triggering their anxiety can help you to reduce it and make it happen less often. While everyone is different, common causes of anxious thoughts and feelings in people with dementia include:

• trouble understanding what’s happening around them
• worrying about a person or situation from their past
• worrying about their ability to cope with everyday tasks, or finding tasks too hard
• tension or negative mood in the people around them
• grief: even they don’t know exactly what’s happening, they may still recognise something is wrong.

Anxiety can also be a symptom of depression. Talk to the person’s doctor if you believe they are feeling depressed.

What you can do

If your family member or friend is feeling anxious, you can support them by:

• providing reassurance and comfort
• calmly and gently talking to them about what might be triggering the anxiety
• giving the person something to fiddle with, like coins or treasured possessions, to distract them.

Over the longer term, you can try to prevent or manage the person’s anxiety by:

• arranging a doctor’s appointment to check whether physical illness, depression or medication might be causing the anxiety
• noticing which activities trigger their anxiety
• talking about stressful situations and activities in advance, to help them feel safe and reassured
• making sure they’re getting enough exercise
• checking their caffeine intake and making the switch to non-caffeinated drinks.

Dementia expert webinar: the impact of childhood trauma on a person living with dementia

Agitation, aggression and dementia

Dementia changes people’s behaviour and emotions. Sometimes, people living with dementia can become agitated or aggressive.

They might:

• get upset or cry
• pace or fiddle
• repeat themselves and talk constantly
• swear, scream, shout or make threats
• be physically violent or damage things.

Agitated or aggressive behaviour is stressful for everyone. Certain situations or feelings can cause it. But there are also things you can do to reduce these behaviours.

Causes of agitation and aggression

There are many things that can trigger agitated or aggressive behaviour in people living with dementia. They might become overwhelmed in crowded or noisy places. Or they might get frustrated when they’re doing a complex task. They could also be feeling unwell or in pain.

Dementia can make it harder for the person to tell you how they feel, which may cause them to get upset or lash out.

These are some common things to look out for:

Health issues: Are they tired or having problems with their sleep? Are they in pain or ill? Is their medication causing side effects? Do they have poor vision or hearing? They could be experiencing hallucinations. A urinary tract infection might also cause agitation.

Humiliation: They might feel defensive or embarrassed about needing help for tasks like showering. They may feel like they are losing their independence.

Confusion: They might not understand what’s happening around them. This can lead to them being distressed.

Fear: They may feel frightened because they don’t recognise people or places. Or they might remember something scary or uncomfortable from the past.

Finding out what’s causing the agitation or aggression can help you respond to the behaviour.

What you can do

If your friend or family member is agitated or aggressive, there are a few things you can do to support them.

Supporting someone who is agitated or aggressive

If the person is experiencing agitated or aggressive behaviour, you can try:

• staying calm and reassuring them
• gently responding to the underlying feeling that’s caused the behaviour
• distracting them with an activity they find calming
• using the strategies that make sense for you and the person. For example, if the person is repeating a question, it may work to answer the question. But for other people, it may be better to ignore the question.
• if necessary, moving yourself out of reach or to a safe place. Avoid crowding or restraining the person unless you have to.

Talking to the person’s other care-givers can help to create a consistent approach to dealing with aggression or agitation.

Reducing agitation or aggression

You can also make changes that might reduce agitated or aggressive behaviours in the future. These include:

• visiting their doctor to rule out any underlying physical causes or mental health issues, such as depression
• identifying and removing triggers from their environment
• maintaining a consistent daily routine and avoiding rushing them
• minimising changes around their home
• breaking down big tasks into smaller tasks, and explaining them step by step
• avoiding crowded or noisy places that might overstimulate them
• communicating with simple sentences and a calm tone
• encouraging regular exercise and activities that they enjoy
• creating a safe and comfortable environment.

Protecting your safety

It's normal for you to feel unsafe, anxious or frustrated when your friend or family member is agitated or aggressive. And despite your best efforts, the behaviour may still happen. Be gentle with yourself, stay calm and take regular breaks away from the person if you can. Prepare a safe place for yourself, like a lockable room, and keep your phone handy.

If you're regularly feeling frustrated or angry, talk to a doctor, friend or counsellor.

If you or anyone else is in immediate danger, call 000.

Delirium, confusion and dementia

Delirium is a state of severe confusion. It often occurs in people living with dementia, but it can be hard to spot. That’s because the symptoms of delirium and dementia are similar.

Delirium can come on quickly. It can result in the person seeming more confused than usual. It may look like:

• lack of attention or focus
• short-term memory loss
• rambling or incoherent speech
• new difficulties with perception
• restlessness, irritability, agitation and aggression
• hallucinations and delusions
• quietness, drowsiness and lethargy
• disruptions in normal sleeping and eating patterns.

Delirium can be distressing for you, your family and the person with dementia. These are some possible causes to watch out for, and some ways to respond.

Causes of delirium

No-one knows exactly why delirium happens, but it can be brought on by:

• severe illness
• constipation
• dehydration
• infection
• pain
• drug effect or withdrawal (alcohol and sedative drugs).

If the person has experienced delirium in the past, they are more likely to get it again.

What you can do

Visit their doctor as soon as you suspect something might be wrong. Discuss any medications, and any changes to their behaviour, health or environment. Early treatment goes a long way in helping the person to recover.

You can also help to ease the person’s distress by:

• speaking slowly and calmly
• reminding the person where they are, and what day it is
• encouraging friends and family to visit the person
• encouraging them to eat and drink
• playing relaxing music or using other strategies to help them sleep
• creating a safe and soothing environment free from too much noise, stimulation and the potential for falls
• making sure they have their glasses or hearing aids if they use them.

Over the longer term, support the person to remain active. Physical and occupational therapy may help.

Hallucinations, delusions and dementia

Dementia can cause people to sense or believe things that aren’t real. Although they’re not real, they can feel real and sometimes very scary to the person experiencing them.

Hallucinations

Hallucinations are things that you see, hear or otherwise sense that aren’t real.

People living with dementia might have hallucinations that seem very real and last for some time. Some hallucinations are mild, but they can also be frightening.

Hallucinations often involve family members, but they can be of other people or animals, including spiders and snakes.

Hallucinations are not imaginary or pretend. To the person experiencing them, they seem as real as any other object. After the hallucinations go away, the person can usually understand that the things they experienced weren’t real.

Delusions

Delusions are where you believe something that isn’t true.

Delusions can seem so real that the person who believes them is not able to understand that it’s not true. Delusions can be confusing and frightening.

If they’re also having hallucinations, they might connect to their delusions. For example, if they see and hear a person who isn’t there, that’s a hallucination. If they start believing that person lives in the room upstairs, that’s a delusion.

It’s common to have delusions where the person believes people are doing things to them against their wishes. They might believe someone is stealing their things, or that they’re being given poison instead of medication.

Delusions feel completely true to the person experiencing them. It’s not usually possible to convince a delusional person that their belief isn’t true, even if it’s bizarre or impossible.

A person experiencing delusions might need other people to get them the medical help they need.

Misidentification

Misidentification is when you wrongly identify yourself or other people.

For example, someone might not recognise a person they know, or think their reflection is someone else. They might mix people up, or believe voices on the TV are coming from people in the room.

Causes of hallucinations and delusions

Dementia can cause the brain to misinterpret the information it receives. This can lead to hallucinations, delusions and misidentification.

Memory loss caused by dementia can also contribute. For example, someone who’s forgotten where they put something might believe another person has taken the item.

Other causes can include:

• poor eyesight or hearing
• physical illness, including infection, fever, constipation, anaemia, respiratory disease and dehydration
• mental health conditions, such as schizophrenia
• side effects from medication
• new or changed environments, care-givers or routines
• being overwhelmed by too many things happening at once.

What you can do

It can be upsetting if someone close to you with dementia experiences hallucinations, delusions or misidentification. But there are things you can do.

Supporting someone experiencing hallucinations or delusions

If your family member or friend is experiencing a hallucination, delusion or misidentification, you can support them by:

• calmly reassuring and comforting them. If it’s appropriate, you can try hugging them or stroking their arm
• working out how the hallucination, delusion or misidentification is affecting them. Sometimes it can be ignored if it’s harmless and not upsetting them
• gently explaining what is happening. Avoid arguing over delusions: this doesn’t work.
• responding to the feelings behind the words. For example, they might be frightened or worried
• making sure they’re wearing their glasses or hearing aid if they use them.
• distracting them with music, exercise, activities, talking to friends or looking at photos.

Reducing hallucinations or delusions

You can also make changes to help to prevent or reduce hallucinations or delusions. These include:

• booking in a check-up with their doctor. The doctor can identify triggers, including physical or mental health conditions, or side effects from medication
• keeping track of any changes in behaviour. This can help you work out patterns or triggers
• keeping their environment, routine and care-givers as familiar as possible. If they do need to move, bring familiar items with them
• making sure rooms are well lit, so they can see what’s around them. Try using night lights too
• keeping spare sets of items that they frequently lose, like glasses or keys.

Dementia Expert Webinar: Understanding Hallucinations and Delusions

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.