Living with dementia

Transcript

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Speaker 1: Living with dementia or caring for someone who has dementia means living with ongoing change. These changes may affect memory, communication, energy levels, routines, roles and relationships and they often unfold gradually. It's important to understand that there's no single right way to cope, and that coping will look different at different times. One of the most helpful coping strategies is creating structure through familiar routines. Many people living with dementia are looking for structure. Predictable routines can reduce anxiety, support orientation, and make daily life feel safer and more manageable for the person living with dementia and those around them.

Breaking tasks into small achievable steps is another key strategy. Dementia can affect planning, the ability to sequence tasks and decision making. This can make complex tasks overwhelming. Slowing things down, doing one step at a time and reducing pressure can lower frustration and help preserve independence. It's also important to cope by focusing on strengths rather than losses. Dementia does not affect all abilities equally. Sensory, emotional, social, and physical skills often remain long after memory changes begin. People can still take part meaningfully in everyday activities, sometimes actively, sometimes passively, and both forms of participation matter. Coping also means adjusting expectations. Activities don't need to be completed perfectly to be successful. People may not remember the activity later, but they are very likely to remember how it made them feel. Calm, respectful, positive interactions leave emotional memories that last. Coping with dementia is not about fixing or controlling everything, it's about responding flexibly, staying connected and adapting as needs change. When caring for someone with dementia, it's important to look after yourself. Caring can be demanding and it's okay to need support. Making time for rest, connection, and your own needs helps protect your health and resilience. Practical steps such as organising respite, sharing care tasks where possible and staying socially connected can reduce pressure and support your wellbeing.

Wellbeing is far more than a person's memory or physical health. Our wellbeing is shaped by physical, emotional, social and sensory factors and this applies equally to all people living with dementia and those who support them. Looking after your body is a key part of maintaining wellbeing. Regular physical activity adapted to the person's abilities supports brain health, mobility, mood, sleep, and confidence. This might include walking, gentle stretching, gardening, water-based exercise or everyday movement. Enjoyment is important. People are more likely to keep moving when activities feel rewarding rather than prescribed.

Nutrition also plays a vital role. Changes in memory, taste, smell, appetite, or swallowing can affect how and what a person eats. Eating regularly, maintaining weight, staying hydrated, and adapting meals as needed, is important. Mealtimes can also be social opportunities and moments of connection. Emotional wellbeing is just as important. Dementia often brings ongoing grief and loss, not only for carers, but also for people living with dementia. These losses might include changes to roles, identity, future plans, or relationships. Grief in dementia is not a single event. It can come and go in waves and may show up as sadness, anger, guilt, anxiety, exhaustion, or withdrawal. Grief doesn't disappear, instead, people often grow around it, finding ways to adapt while still living meaningful lives. Acknowledging grief rather than ignoring it supports emotional health.

Maintaining wellbeing means paying attention to your body, mind, relationships and emotions, and recognising that all of these matter. Planning ahead can feel confronting, especially after a diagnosis, but many people find it becomes one of the most empowering steps they take. Planning early helps protect choice, dignity, and peace of mind. Dementia can affect many aspects of life over time, including finances, legal matters, employment, driving, living arrangements, healthcare, and decision making. Planning ahead allows people living with dementia to be meaningfully involved in decisions while they can express their wishes.

An important part of planning ahead is understanding decision-making capacity. A diagnosis of dementia does not automatically mean someone loses the ability to make decisions. Capacity refers to a person's ability to understand information, consider options, and communicate a choice. Capacity can change over time and can vary depending on the type of decision being made. Many people living with dementia continue to make decisions for a long time, especially when they're given the right information and support. Supported decision making means trusted people help explain options, talk through consequences, and assist with communication while the person with dementia remains at the centre of the decision. Planning ahead may include formal steps such as appointing decision makers or completing advanced care planning. It also includes informal conversations about values, preferences, and what matters most. Planning doesn't need to happen all at once; it's an ongoing process that can be revisited as circumstances change. Starting early helps avoid crises later and can reduce stress for families and carers. Planning ahead is not about giving up control, it's about keeping your voice at the centre of future decisions.

Living with dementia affects many parts of life, which is why support is most helpful when it is holistic, flexible, and tailored to a person's specific needs. Dementia Australia supports people of all ages living with all forms of dementia as well as their families and carers. Our services take a person-centered approach that focuses on living well, not just managing symptoms. We provide evidence-based information about dementia, individual and family counselling, support groups and peer connections. Social support and respite services, group programs for people living with dementia and carers. Guidance on daily living, communication, activities and environments. Support navigating systems such as My Aged Care and the NDIS. When you call the national Dementia Helpline, you'll speak with expert advisors who can provide information, emotional support, practical strategies, and help connecting with local services. As needs change over time, whether they're emotional, practical, or physical, support may need to change too.

We can help across all stages of the journey. Living with dementia can be challenging, but with the right information, understanding, and support, it is possible to continue living a meaningful, connected life.

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This program provides an overview of dementia and how to proceed after a diagnosis. It covers coping with change, relationships and communication, planning for the future and staying healthy. If you register, you'll be contacted by Dementia Australia to ensure that the program meets your needs and that you're eligible.

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