Dementia: love, loss and the many layers of caring

I have known dementia in more than one way. I lived with my mum, Judy, for seven years as she journeyed with Alzheimer’s disease and vascular dementia and later, I loved and supported Marianne (not her real name), who lived with frontotemporal dementia. Both are now deceased. Their dementias were different, their experiences were different and the ways those illnesses changed our relationships were different, but both taught me an enormous amount about love, loss, caring, grief, identity and what it means to remain present with another human being when so much is changing around you.

Perhaps that is why the theme of Dementia Action Week this year landed so strongly with me. From 21 to 27 September 2026, Dementia Australia is asking us to recognise that “It’s time to talk about dementia.” Not whisper about it, not avoid it because we are frightened of saying the wrong thing and not dismiss it as an inevitable part of ageing, because dementia is not a normal part of ageing. Dementia Australia is also naming the cost of silence: delayed diagnosis and treatment, carers who feel isolated, stigma and people not knowing that help is available.

And we really do need to talk about it. In 2026, an estimated 459,000 Australians are living with dementia and, according to Dementia Australia’s analysis, around 1.7 million people are involved in their care. The statistic that may still surprise many people is that dementia, including Alzheimer’s disease, is now Australia’s leading cause of death. The Australian Bureau of Statistics recorded 17,550 deaths from dementia, including Alzheimer’s disease, in 2024, representing 9.4 per cent of all registered deaths. These are not small numbers, but behind every statistic is a person and around that person are other people whose lives are changing too.

Mum, memory and what remained

Mum’s dementia taught me very early that memory is not a simple filing cabinet where everything gradually disappears in an orderly fashion. Things could be inaccessible one moment and astonishingly present the next. Names, dates and everyday details might disappear while something embedded deeply in emotion could suddenly rise intact from decades before.

I remember sitting with Mum watching an ANZAC Day march on television and seeing tears running down her face. I asked what she was thinking about and she said, “Just remembering…just remembering.” My instincts told me that it was about her Noel, the young man she had loved who went to war and never came home after his plane went down and there was recognition. Somewhere inside all the neurological damage of dementia, that love and that history was still there. From then on, I put photographs of Noel and her where Mum could see them.

Experiences like that changed how I thought about dementia. They reminded me not to measure someone only by what they could recall, explain or perform in that moment. A person living with dementia remains a whole human being with history, emotion, relationship, preference, dignity and an inner world that we may not always be able to access or understand.

The ten-minute snapshot and the person who knows the whole story

One of the other things Mum taught me was how differently dementia can look depending on where you are standing. Like many people living with dementia, Mum gradually lost much of her awareness of the changes that were happening to her. She did not necessarily recognise that her memory was failing, that she was asking the same questions repeatedly or that her behaviour and capacity were changing. From her perspective, quite often there was nothing particularly wrong and therefore no obvious reason she should need the support I was offering and suggesting. That could make accepting help incredibly difficult and as the person living with her and caring for her, I was constantly trying to find ways of supporting her without making her feel that her independence was being taken away.

There were other things happening at the same time. Mum had osteoarthritis and regularly would not take her pain medication as prescribed. Therefore, at times, she was living with considerable pain and could be very cranky. We now know that pain can be harder for a person with dementia to communicate and that unrecognised or undertreated pain can show itself through distress, withdrawal, frustration, anger or other changes in behaviour.

Dementia rarely arrives neatly on its own. There can be pain, other illnesses, medications, mobility issues and all the ordinary complexities of ageing sitting alongside it and for the carer it can become an enormous exercise in noticing, interpreting and trying to work out what is actually going on.

Personally, I think this is part of why carers can easily become so isolated and micro-focussed, because they are consumed by those complexities.

Mum also became increasingly reluctant to see people. One wonderful exception was her GP, whom she saw religiously every six weeks. The GP visits became something of an event. Mum would put on her lipstick and her pearls, something she rarely did for anyone else by then and off we would go. She could be quite flirty with him and, for those ten minutes in his consulting room, she could pull herself together remarkably well. She presented beautifully.

And he would often tell me how wonderfully she was doing. I cannot tell you how frustrating that was. He saw Mum for perhaps ten minutes every six weeks. I lived with her and cared for her every day. I knew every nuance of her behaviour, every hair on her head, every change in her routine and every subtle sign that something had shifted. The constant repetitive questions, resistance to support, medication issues, what she was no longer managing and the things she could still manage beautifully. I knew when something that looked perfectly fine to somebody else was actually very different from Mum’s normal.

Eventually I developed my own system. I would make a separate appointment with her GP before Mum’s appointment and go in alone. I would tell him what was really happening, what had changed since the last visit and where I thought we needed support. Then Mum would have her own appointment, lipstick and pearls in place and if he suggested that something might be a good idea, she was far more likely to agree to it. It was advocacy by stealth, perhaps and sometimes it worked.

Looking back, I think there is something important in that experience for health professionals as well. The person living with dementia must remain at the centre of their own care and be included in decisions for as long and as fully as possible, but the observations of the person who lives with them and cares for them matter enormously too. A short clinical appointment is a snapshot. A carer may be holding months or years of detailed knowledge about changes in behaviour, cognition, medication, eating, sleeping, mobility, mood and function that simply cannot be seen in ten minutes.

Carers become extraordinarily skilled observers, although most would never describe themselves that way. We see the tiny, subtle signs. We notice the half-step difference. We know that a particular look means something is wrong, that a certain tone might mean pain or that a seemingly insignificant change in routine could be telling us something important. There were times when Mum could appear so capable to someone who saw her briefly that I felt as though the reality I was living was almost invisible. When someone said she was doing wonderfully, part of me wanted to say, come home with us and live with us for twenty-four hours.

Both things could be true. Mum could still be wonderful, funny, charming, flirtatious and beautifully dressed in her pearls and lipstick and she could also be living with a progressive dementia that was profoundly changing both her life and mine. That is one of the complexities we need to become much better at holding.

Then there were her times of deep disorientation. When she would lay down for an afternoon snooze then get up mid-afternoon, put on her pyjamas and go and have breakfast because it was a new day. Learning to let go and live with her clock was scary at first then became the norm. Carers are constantly adjusting to a new normal.

Grief can begin long before death

We talk a great deal about grief when somebody dies, but dementia taught me how much loss can occur while a person is still alive. There can be grief for changes in memory and communication, grief for the relationship as it once was, grief for shared plans that may never happen, grief for independence, intimacy, spontaneity, confidence and roles within a family. The losses often do not arrive in one dramatic moment. They accumulate quietly, sometimes over years, until they have become such a normal part of life that the person caring may not even recognise what they are experiencing as grief.

Dementia Australia describes anticipatory grief and ambiguous loss as experiences that can be part of dementia. I understand why people sometimes say they feel they are ‘losing someone while they are still here’, but I am cautious with that language too. The losses are real and carers need permission to speak about them without guilt, but the person themselves is still here. They have not become their diagnosis and recognising our grief should never require us to erase their continuing personhood.

For me, that is one of the great complexities of dementia. You can grieve what has changed while loving or at least caring for, what remains. You can feel exhausted and deeply grateful in the same day. You can miss the relationship you once had while finding completely new ways of relating. Frustration, tenderness, anger, laughter, resentment, fear, intimacy and moments of extraordinary beauty can all live in the same story.

The losses carried by carers

I have written recently about the hidden costs of long-term caregiving because I think we still romanticise caring in ways that can make it difficult for carers to speak honestly. Caring can contain extraordinary intimacy, meaning, humour, tenderness and love. It can also cost sleep, spontaneity, friendships, social life, holidays, career opportunities, income and superannuation. It can change where you live, whether you travel, what happens in your other relationships and what you imagine your future might look like. Choice itself can begin to feel limited.

The Australian Institute of Health and Welfare reports that among primary carers of people with dementia, 42 per cent provide an average of 60 hours or more care each week, 45 per cent report at least one physical or emotional impact from the caring role, 28 per cent experience negative financial impacts and 24 per cent say they need more respite care. Numbers like these matter because they make visible what can otherwise remain hidden inside private homes and families.

I know some of that landscape because I lived it. Whilst I chose to care for Mum, I could not have known at the beginning what seven years of caring would ask of me. I was still her daughter, with all the history, love, expectations, frustrations and family dynamics that being a daughter holds, while gradually becoming her advocate organiser, interpreter and protector. Eventually I was completely burnt out and Mum moved into residential aged care for the last eleven months of her life. That was another layer of grief. I took to calling Mum Judy, her given name, as it helped me separate ‘Mum’ from another human being I was caring for.

Then there is the loss that comes when the caring role ends. When someone dies, the carer does not only lose the person they love or cared for. The appointments stop. The medications stop. The vigilance stops. The professionals who have been part of life may suddenly disappear. A role that structured every day can vanish almost overnight. People may kindly say, ‘Now you can have your life back,’ without understanding that after years of organising life around somebody else, there may not be an old life waiting unchanged to return to. It was certainly my experience; I had to start again at 55 with no clue as to who I was, what I wanted or even what I felt I could do.

Relief can also be part of this, and I think we need to give people permission to say that too. Relief that someone is no longer suffering, relief that the constant responsibility has ended, relief that you can sleep and grief because the person is gone can exist together. Relief does not diminish love or care. We do not need to simplify the emotional life of carers to honour their devotion.

Marianne, frontotemporal dementia and the dementias we do not recognise quickly enough

My experience with Marianne was different again because she lived with frontotemporal dementia (FTD). Frontotemporal dementia can affect personality, behaviour, language, emotion and judgement and memory is not always the earliest or most obvious change. It is also more commonly diagnosed in younger people than many other forms of dementia. Our cultural picture of dementia is still so strongly tied to an older person forgetting names and dates that we can miss the dementias that arrive looking like something else entirely.

Dementia Australia estimates that around 29,000 Australians aged 18 to 65 are living with young onset dementia in 2026, a number projected to increase to around 41,000 by 2054. These are people who may still be working, raising children, paying mortgages, running businesses, caring for their own parents and living in relationships that suddenly must absorb profound change. When behaviour or personality changes before memory, families can spend a long time knowing that something is wrong without knowing what it is.

FTD helped me understand even more deeply that there is no single dementia story. Alzheimer’s disease, vascular dementia, frontotemporal dementia and the many other causes of dementia affect people differently. Even two people with the same diagnosis will not have the same experience. Good support must begin with the person in front of us, their story, their relationships, what matters to them and what is changing for the people around them.

When Marianne died, I needed a doula too

When Marianne died in Launceston, another part of this story became very real for me. I have spent years teaching and working in end of life care. I know the systems, I know what can happen after death, I know how to create ritual and ceremony, I know how to support other people through dying and grief. None of that meant that I did not need support myself.

I had doulas around me when Marianne died and I needed them. I needed people who understood the territory and who could hold some of the practical and emotional weight so that I did not have to be the person who knew everything or organised everything. I could simply be someone who loved a person who had died.

That experience has stayed with me because it is so relevant to dementia care. We quite rightly focus on the person with the diagnosis, but good dementia care must widen its gaze to include the circle around them. Supporting the carer is part of supporting the person. Preparing families for what may come, helping them navigate services, supporting planning and conversations, recognising grief before death and continuing support into bereavement should not be afterthoughts.

The place for doulas in dementia care

This is one of the reasons I have such respect for the work being developed by Dementia Doulas International and its founder, Wendy Hall. The Dementia Doula role was developed to offer nonclinical support, information, education, liaison and advocacy from post diagnosis through advancing dementia and into bereavement. Wendy and most of her team have also trained with us at Preparing the Way, so there is a connection between our communities that I value enormously.

Our work is not the same, yet there is a beautiful complementary nature to it. Dementia care, like end of life care, is not only medical. There are clinical needs, absolutely and doulas do not replace doctors, nurses, allied health professionals, counsellors, dementia specialists or aged care services. What a doula can add is time, continuity, preparation, navigation, education, presence and support in the parts of life that do not fit neatly into a clinical appointment.

Sometimes the question is how to talk with Mum about what is changing without frightening or humiliating her. Sometimes it is how to get the family on the same page, how to prepare for an appointment, what to put in place while someone still has decision-making capacity or how to respond when the person you love is saying the same thing for the twentieth time. Sometimes it is about grief, anger, guilt or sheer exhaustion. And sometimes, much later, the question is simply: who is going to hold me while I do this?

It really is time to talk

That is what I want to add to Dementia Action Week this year. Yes, it is time to talk about dementia. We need to talk about diagnosis, research, treatment, brain health, services and support. We need to understand that dementia is not a normal part of ageing and that it can affect younger people too. We need health and aged care systems that recognise the scale of what is already here and what is coming.

But we also need to talk about the life around the diagnosis. We need to talk about the daughter who has answered the same question fourteen times that morning and feels terrible because the fifteenth time she snapped. We need to talk about the husband who misses the conversations he once had with his wife while still loving the woman sitting beside him. We need to talk about carers who know every nuance of a person’s day but feel unheard in a ten-minute appointment. We need to talk about pain that looks like anger, support that is resisted, careers and income that change and the strange mixture of grief and relief that can arrive when a long dementia journey finally ends.

Most importantly, we need to keep talking with people living with dementia, not simply about them. Mum taught me that. Beneath the things dementia changed, there were still memories, feelings, relationships and parts of her story that could appear when I least expected them. There were pearls and lipstick. There was flirting with the GP. There was Noel. There were tears on ANZAC Day and the simple words, “Just remembering.”

And she was.

If talking about dementia helps one person recognise a change earlier, one family ask for support sooner, one health professional listen more carefully to the carer who knows the whole story or one carer understand that their grief, exhaustion and love can all coexist, then it is a conversation worth having.

Support

For information, counselling and support for people living with dementia, families and carers, the National Dementia Helpline is available 24 hours a day, seven days a week on 1800 100 500.