It’s time to talk about dementia: Insights from our team
Talking about dementia can feel difficult.
Many people worry about saying the wrong thing or upsetting someone they care about. Carers and families may also feel uncertain about the future.
But conversations about dementia do not need to be perfect. What matters most is being willing to connect, listen and spend time together.
The experiences of people living with dementia, their carers and families show us that what matters most is being willing to start the conversation, making time for connection and listening.
At integratedliving, our Activity Centre team see how small moments of connection can make a meaningful difference every day. Sometimes it is a conversation over a cup of tea. Sometimes it is an activity that brings back a favourite memory. Sometimes connection happens without words at all.
For Dementia Action Week, members of our Activity Centre team are sharing practical insights into how we can make space for more open, respectful and meaningful conversations about dementia.
Starting the conversation
For Activity Centre Coordinator Lisa, conversations about dementia often begin long before anyone formally sits down to talk.
"At our Activity Centre, we focus on building trusting relationships with clients and their families first," Lisa says. "By creating a warm, welcoming environment where people feel valued and heard, conversations about dementia often develop naturally over time rather than feeling formal or confronting."
Building trust means taking the time to know each person, listening to concerns and being present in everyday interactions. Lisa says providing "reassurance, empathy, and a non-judgmental listening ear" helps carers feel less alone and more confident seeking support.
See the person, not the diagnosis
One message echoed across the team was the importance of seeing the person before their diagnosis.
Activity Centre Team Leader Rachelle says person-centred care starts with understanding who someone is beyond dementia. By learning about a person's history, interests and strengths, staff can create opportunities for meaningful connection and help people maintain their identity.
Activity Officer Tracey has seen first-hand how powerful this can be. Tracey describes building rapport with clients and their loved ones by listening to their life stories and experiences. She recalls Wayne, a client whose creativity and love of art have become an important part of how he expresses his identity.
Wayne regularly participates in collaborative art projects at the Gorokan Activity Centre. His artwork has also been showcased by the centre, including during Book Week, when some of his drawings were used as book-cover artwork. For Tracey, these moments are about more than an activity.
Wayne's interests and talents are recognised and celebrated, with his wife also playing an important role in supporting and maintaining his identity. Activities can help people stay connected to who they are. They can create opportunities for people to use familiar skills, express themselves and connect with others.
Rachelle says activities are designed around individual interests and abilities, whether that is gardening, cooking, woodworking or arts and crafts.
"By deeply understanding a client's personal preferences and physical limits, the team empowers them to keep doing the things that make them exactly who they are."
Be curious and listen
For Activity Centre Coordinator Kate, curiosity plays an important role in building trust and connection. “I feel curiosity plays a major role in building trust and connection as this is a person-centred approach,” Kate says. “It shows that we are truly interested in them, but it also shows that they are valued and respected.”
Being curious can help team members find common ground between clients and create opportunities for connection. Kate recalls a new client living with dementia who was a “10-pound Pom”. Knowing another client was also from England, Kate encouraged the two to speak with each other and the connection was a huge success.
It is a simple example of how taking the time to learn about someone's background can create a meaningful opportunity for conversation. Kate also emphasises the importance of how questions are asked.
Team members give clients time to respond, speak calmly and clearly, and ask permission before asking certain questions. “There’s never any pressure,” she says.
When words become harder, find another way to connect
Dementia can change how a person communicates, but Rachelle says this doesn't mean communication and connection have to stop. “The foundation of our approach is truly understanding each client,” she explains. “By knowing the person, we can anticipate and adapt to their specific needs.” This includes considering physical challenges such as hearing or vision impairments and finding communication methods that work for each individual. The team uses eye contact, visual cues, communication cards, gentle touch where appropriate and a reassuring tone of voice to support communication.
Communication cards can also help overcome cultural and language barriers. The Activity Centre team has used them to connect with clients whose first languages include Swedish and Russian. Sometimes connection happens through simply giving someone your full attention.
For clients who are hard of hearing or become overwhelmed in busy environments, a one-on-one conversation with a staff member or volunteer can provide a quieter opportunity to connect.
And sometimes music can say what words cannot. Rachelle recalls a client who had lost the ability to communicate verbally and often wandered. When the team provided him with headphones playing music in his native Dutch, it created an immediate sense of calm and comfort.
For clients who are hard of hearing or become overwhelmed in busy environments, a one-on-one conversation with a staff member or volunteer can provide a quieter opportunity to connect.
And sometimes music can say what words cannot. Rachelle recalls a client who had lost the ability to communicate verbally and often wandered. When the team provided him with headphones playing music in his native Dutch, it created an immediate sense of calm and comfort.
Focus on what people can do
For Activtiy Centre Coordinator Rebecca, continuing to experience joy after a dementia diagnosis means focusing on what people can do. “Our centres help people continue experiencing joy after a diagnosis by focusing on what they can do,” Rebecca says. That means taking the time to understand people's preferences, interests and strengths and creating opportunities for meaningful experiences.
For Rebecca, some of the most memorable moments are the everyday ones. “Seeing someone light up when a favourite song is played, watching friendships develop over a morning tea, or hearing laughter over a joke.” These moments show that a dementia diagnosis does not take away the possibility of friendship, laughter, creativity or connection.
Activities can provide another natural way in. A game, craft activity or shared interest can spark memories and stories without anyone deliberately trying to start a conversation about dementia. A game of putt-putt, for example, might lead to stories about playing or watching golf. An activity can become a bridge to someone's past and a way for people to discover shared interests.
Supporting carers and families
Talking about dementia also means making space for carers and families. Activity Centre Coordinator Jane says one of the most important things carers need is to know that they are not alone.
“Carers need to feel that they are not alone and that their experiences, concerns and emotions are valid,” Jane explains. Sometimes, having a friendly ear to vent to can make a significant difference.
Carers may also need reassurance that there is nothing to be embarrassed about and that they will be accepted and supported.
Jane highlights the importance of practical information too, including education about what to expect, strategies for challenging times, connection with others in similar situations and respite time away from the person they care for. At our Activity Centres, the team takes time to understand each family's individual circumstances and provide information and strategies relevant to their needs.
They can also help families understand what they might expect and connect them with appropriate services and supports. Importantly, the centre provides a safe space where a person living with dementia can spend time away from their carer.
You don't have to say everything at once. If you're unsure how to start a conversation about dementia with someone you care about, Jane's advice is simple: “Try and keep it light, not too much info at once, plant the seed and come back to the topic.” Starting a conversation doesn't mean you need to have all the answers. It can simply mean letting someone know you're there to listen.
A team approach to better conversations
For Adrienne, Manager Activity Centre Operations and a dementia champion, meaningful dementia conversations are built on the same principle that guides the team's broader approach: see the person first, not the diagnosis.
“Our Activity Centre Team focuses on seeing the person first, not the diagnosis,” Adrienne explains.
The team aims to create safe, meaningful and respectful conversations that recognise each client's individual life story, abilities, strengths and preferences.
Building relationships with clients and their carers allows the team to take a holistic approach to dementia care and conversations. We also work to create a culture where learning and discussion about dementia is encouraged, helping team members feel equipped to have honest and respectful conversations.