When dementia behaviours change. Stay curious
Changes in behaviour are common for a person living with dementia and can be an important way the person expresses what they are experiencing. Taking the time to understand the person living with dementia and their changed behaviours can help carers to recognise what may be at play and care can be tailored to support the dignity, autonomy and quality of life of the person.
Changes in behaviour are complex and often a misunderstood aspect of living with dementia. It is common for these changes to be associated with the physical or emotional result of dementia, where in most cases, it is a form of communication of unmet needs.
These behaviours can be confronting and disorientating for the person living with dementia, as well as those caring for them. They can often reflect distress or an unmet need, offering care teams a valuable signal about what the person may be experiencing and what support might help.
Understanding the reasons for these changes, as well as their impact on people living with dementia, improves care teams’ abilities to respond in useful ways.
Why do behaviours change?
Behaviour can change for many reasons including physical changes in the brain, the environment, health challenges or medication. As dementia continues to grow in the community – it affects approximately 10 per cent of Australians over 65 and up to 40 per cent of those over 90 today – it is helpful to understand why behaviours change.
For example, three in four people living with dementia experience hallucinations, while changes to the frontal and temporal lobes of the brain can affect social filters, leading to disinhibition, says geriatrician Professor Sue Kurrle.
Anxiety can be common, particularly when care is being delivered and the person may withdraw. A lack of interest
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or motivation, repetitive questioning or withdrawal from usual activities can all be ways a person expresses what they are experiencing.
“A person may be responding to something in their environment. Dementia can affect your ability to clearly describe what you are experiencing or what you need,” says Heather L’Huillier, Head of National Programs, Behaviour Support, at Dementia Support Australia (DSA).
“When a person living with dementia is experiencing pain, they may not be able to recognise or explain that pain clearly. Carers will often ask ‘Are you in pain?’ The person may say no – not because the pain isn’t present but because dementia can affect their ability to connect what they are feeling with the words to describe it.”
The challenge for family and professional carers is to understand where the reaction originates.
“It’s looking for those signs, such as rubbing the knees or difficulties getting out of the chair. Sometimes walking a lot can be because the person is experiencing pain,” says L’Huillier.
Be mindful to look for daily clues
Behaviours should be understood as communication signals. Think of them as clues about what a person living with dementia is experiencing and explore ways to help support them.
“Behaviours change readily when a need is not being met for each individual,” says Amanda Martorano, Head of National Programs. “For someone living with dementia, it also impacts their ability to then communicate their needs and express their emotions.”
Dementia can affect a person’s ability to verbally communicate and their behaviour may be the only way they can express what they are experiencing, either physically or in their environment.
“Sometimes when someone is living with dementia, changes in their ability to understand information impacts how they respond,” says Martorano. “That’s why we need care team members who are able to notice those changes to then be able to support the person.”
Explore extra support services
Dementia Support Australia can help to provide valuable dementia advice and support through its 24/7 telephone support, in-person consultations and resource-driven guidance. Dementia Support Australia’s team of specialists can assist with talking through situations and explore practical solutions and ideas for how to adapt care.
“Ask what is the person trying to communicate to me?”
“Simple, everyday interactions are often the most powerful way to provide support,” says L’Huillier.
“It is about noticing changes in behaviour and trying to understand why they’re happening and how best to respond to the individual,” she says. “You need to get to know the person and their history, to be able to do a bit of detective work and introduce new strategies.”
L’Huillier manages the team of dementia specialists who provide advice to family and professional carers in all settings around changes in behaviour, how to recognise the triggers and how to best provide person-centred care strategies.
Build a trusted rapport
The approach described by L’Huillier and Martorano is known as connection-led care. It involves carers prioritising understanding the individual, building relationships and creating emotional safety.
Building a connection requires presence rather than perfection. Start by listening and encouraging reminiscence. It is also beneficial to do meaningful activities, for example, listening to music, gentle physical movement, purposeful tasks, shared reading, storytelling and games.
Connection matters because people living with dementia can experience isolation and reduced opportunities for meaningful interaction.
When carers understand and connect with the person living with dementia, it can help shift the focus from the behaviour to more positive outcomes. These include reduced distress and anxiety, improved emotional wellbeing, a greater sense of identity and dignity, and better quality of life for the person living with dementia.
“It might be quite normal that this person’s sleep is different, and they wake up at 4 o’clock every morning because they were a milkman, and that’s their story,” says Martorano. “For me, I know if you gave me a tea in the morning, I’d get pretty angry, because I prefer coffee.”
It’s important to look at the whole person to understand the contributing factors and rule out anything carers could work on, such as something clinical.
“Have you checked for pain, infections or other sources of discomfort?”
“When people are working in the same environment, they often lose the ability to objectively look at that environment, so sometimes it is the change of lighting or the temperature,” Martorano says. “Ask what is the person trying to communicate to me?”
Respond thoughtfully
Noticing changes in a person’s typical behaviours can help professional and family carers respond appropriately.
“In the moment, stop, step back and try to reflect on what
might be happening for that person,” says L’Huillier. “Sometimes it’s just getting to know the person and what is at play.”
This includes knowing their life story, likes and dislikes. It is also important to understand their self-identity and what makes a person who they are.
For example, it might be common for a person living with dementia to behave a certain way at the same time every day because of a former routine. Often the best response is to ask.
“How can I help? It is important that we still ask because the person may be able to give some clues about what they are experiencing or needing,” says L’Huillier.
Then care team members can validate this need and respond depending on where the individual is. The best response depends on the person, and that’s the difficult part because “there’s no playbook,” she adds.
“You’ve got to know the person, and what works one day may not work later in the day, and that’s why it’s key that carers are sharing with each other what’s working and what hasn’t worked,” she says.
“Sometimes it’s a matter of trialling different approaches to see what's going to help in that moment, but you have to then again come back to knowing that person – their needs, preferences, life story and how dementia is affecting them at that time.”
Echoing L’Huillier, Martorano says not every strategy will work for everybody, so care team members need to look for signs that something is or isn’t helping.
“You can usually see in a person’s face when you build that rapport with them. They’re willing to have that trust with you to redirect them to the shower, for example, and you can see their whole demeanour change and their anxiety ease,” she says.
Martorano suggests repeating and refining strategies even if something doesn’t work the first time.
“This builds trust between the care team worker and the person living with dementia, and then you can see their behaviours slowly decrease over time,” she says.
“Behaviours are often on a cycle and a person will not stay agitated indefinitely,” Martorano adds. “If you can meet someone just before they get to that point, and not so much redirect them, but engage with them, have a conversation, see what they need, then the change of behaviour may settle or not occur.”
Where to get help
Dementia Support Australia provides practical tools and resources to empower family and professional carers to respond confidently and compassionately.
This includes a comprehensive resource library with a range of videos, blogs and informative brochures. There are also practical tools to understand and respond to behaviours, including the booklet Identifying and understanding changes in behaviour.
“There’s also a book specifically developed about creating everyday connections with a person living with dementia. It looks at different tips in terms of validation, reminiscence and
sharing everyday activities that can help them connect with the person,” says L’Huillier.
In addition to the booklet – Building everyday connection with a person living with dementia – there are resources on how to get to know someone.
“There’s a form called 'about me' that you can fill in with that person or their loved one that talks about their routines, likes and dislikes, what makes a good day for that person and what the person might be trying to tell us if they are getting distressed. That can be helpful for care team members to fill in with a family member to help get a bit more context and get to know that person,” she says.
There is also a free 24-hour helpline – 1800 699 799 –available to anyone including family carers and people working in aged care, disability and hospital settings. Callers can share what is happening and receive advice over the phone. There are also dementia support coaches who can demonstrate strategies or mentor care teams in different approaches.
“We can give some advice over the phone, or sometimes we need to observe the behaviour as well, and then help with that detective work,” says L’Huillier.
“We know carers are busy. It must be approaches that can be practically implemented in the care space, so it’s important that we’re providing strategies that are achievable.”
“Strategies and knowledge also need to be easily shared among team members, particularly when homes can’t have the same team coming all the time.
“In an ideal world, consistency is great, but we know that’s not always possible. So, it’s about how you then share what we often call ‘nuggets of gold’ about that person with the other carers coming in.”
The key things to remember are that understanding the individual and making small, tailored changes can enhance the wellbeing and autonomy of a person living with dementia. It can also reduce stress and improve quality of life for the person living with dementia and everyone who cares for them, including family, friends and care professionals.
