When a Parent Has Dementia: From First Signs to Long Goodbye
Dementia rarely arrives with a diagnosis. It arrives as a strange forgetfulness, a missed bill, a quiet unease that something has changed. Here's how to tell it apart from normal ageing, what a diagnosis involves, how to talk to a parent once you have one, and what caring for them is really like, from the carers who have lived it and the geriatrician who treats it.
Is it dementia, or is it normal ageing?
Most families' first fear is the wrong one to lead with. Dr Stephanie Ward, a geriatrician and Conjoint Professor at UNSW, points out that ordinary forgetfulness is, well, ordinary.
"You're not the only person that's walked into a room and forgotten what they needed to get. And that's a common experience for a lot of people as they get older. And that generally can be just part of normal aging."
Early dementia signs are also more varied than most people expect. For some people it does show up as memory changes. For others, the first thing a family notices is that everyday functioning has quietly slipped: bills stop getting paid, driving becomes erratic, a once-reliable person starts making uncharacteristic mistakes.
It is worth ruling out reversible causes before assuming the worst. Delirium, an acute change in the brain's function, can look frighteningly like dementia, complete with hallucinations or paranoid thoughts, but it is usually triggered by something treatable such as an infection, and tends to improve once the underlying cause is treated. Medication side effects can do the same. Dr Ward puts it plainly: "I have cured dementia before by just stopping one or two tablets in people."
Clinically, dementia is diagnosed when thinking skills have genuinely changed from a person's baseline, that change is starting to make daily life harder, and it is not explained by something temporary and treatable, like a urinary tract infection. As Dr Ward puts it, dementia itself "isn't a normal part of aging, although the reality is the older we get, the much more common it becomes," true in around nine in ten cases past the age of 65.
Getting a diagnosis, and why earlier is better
Families often put off a proper assessment for fear of the label. In Australia, dementia is now the leading cause of death for women and second overall, which is exactly why it deserves to be taken seriously rather than avoided. An earlier diagnosis is almost always better than a later one: it rules out reversible causes, opens the door to planning while your parent can still take part in decisions, and stops the family from choosing under crisis pressure.
Mild cognitive impairment, which affects roughly one in five older people, raises the risk of dementia but does not guarantee it: many people stay stable for years. And a dementia diagnosis is not the end of an ordinary life. Dr Ward notes the evidence increasingly points to a meaningful share of dementia risk being modifiable, through things like protecting hearing and staying socially and physically active.
"People with early dementia, they drive, they play tennis, they're active in church, they write poetry, they sing, they play musical instruments, some continue to work."
If you are trying to get a reluctant parent to a doctor, Dr Ward's advice is simple: be persistent and be gentle, and if you are the one pushing for that appointment, you are already doing a great job.
After the diagnosis: how to talk to a parent with dementia
Once dementia progresses, the goal of conversation quietly shifts from being accurate to being kind. Dr Ward calls this therapeutic fibbing: when the literal truth would only cause repeated distress, comfort and reassurance serve your parent better.
"If I were to tell that person their mum had died, it's gonna make them feel really bad and they're also gonna forget and they're gonna ask again in two or three or four or five minutes... what that person needs is comfort and reassurance."
Much of what lands is not verbal at all: tone of voice, pace and eye contact carry more weight than the words themselves. A visit is not wasted just because your parent forgets it happened. People can retain the feeling of a good visit long after the memory of it is gone, so the value of showing up does not disappear with the details.
It is also worth separating your parent from the disease when things get harder. Aggression or distress is the illness, not a character judgement on them, but that does not mean you have to absorb it. If there is physical aggression or you do not feel psychologically safe, that is a safety issue you need help with, not something to endure.
When they ask the same question over and over
One of the most wearing parts of daily dementia care is the loop: the same question, asked again five minutes after you answered it, and again after that. It helps to remember that the answer is not sticking, so from your parent's side they are asking it for the first time every time. Reminding them that you already told them, or arguing the facts, tends to add distress without changing anything. The more useful move is to stop trying to win the exchange and ask what sits underneath it.
"I always think it's important to sometimes take some time out for yourself, first of all, but to have a think about whether there's something else underlying all of that, whether it is fear, whether it's loneliness, whether it's boredom, whether it's something physical like hunger or pain or just being tired. Is there something in those behaviours? Is there a need there that's needing to be addressed?"
The same reframe helps with the false beliefs that can travel with dementia, including the common and hurtful one where a parent accuses you or a carer of stealing. Usually they have simply forgotten where they put something and reached for the only explanation that makes sense to them. Correcting the accusation rarely helps; a calm tone, reassurance and gentle distraction usually do more. If a belief starts to put your parent or anyone around them at risk, that is the point to bring in specialist help rather than carry it alone.
When a gentle parent turns angry
For some families the hardest change is not forgetfulness but temper. A parent who was mild and easygoing can become sharp, accusing, verbally cruel, sometimes physically aggressive, and it can arrive with very little warning. Dr Ward does not soften what that is like to witness.
"people can go from being the most docile and gentle of all people to verbally aggressive and shouting and swearing and ungrateful and hurtful, or even sometimes physically aggressive too. So it's terrifying."
Two things help when it happens. The first is that the aggression is the disease, not your parent's real feelings about you, even when the words land straight on you. Watching a gentle person turn cruel is its own kind of grief, a version of losing them while they are still here, and it is normal to feel frightened and heartbroken at the same time. The second is that naming it as the illness does not mean you have to absorb it. Your own safety comes first, and reaching for help when a parent becomes aggressive is not a failure of love.
When your parent doesn't recognise you
There is a particular grief in the moment a parent looks at you and does not know who you are, calls you by a sibling's name, or greets you as their own mother. It can feel like rejection. It is not. Dr Ward describes what is actually happening as the disease loosening a person's grip on the present while older memories stay vivid.
"They may not remember or recognise you at your age right now. They might remember you from when you were a baby or a younger person."
So the parent in front of you may be somewhere earlier in their own life, and to them you might be a small child or a half-remembered face rather than the adult standing there. Correcting them back into the present rarely lands and often upsets everyone. It tends to help more to step into their timeline, answer the feeling behind what they say, and let being known imperfectly be enough for that visit. This is one of the clearest forms of grief that arrives while a parent is still alive, and if that is where you are, our guide to grieving a parent who is still alive sits with exactly this ache.
Does visiting still matter if they forget?
Once a parent stops remembering visits, a quietly corrosive question can creep in: what is the point of going? It gets asked more often than people admit, and almost always out of pain rather than indifference. Sarah Macdonald has heard it directly.
"I have had people say to me, oh, I'm not visiting my dad because he's got dementia. He doesn't remember if I'm there or not. And I'm like, but he'll remember how good he felt when you were there."
The feeling outlasts the memory. People with dementia can carry the warm residue of a good visit long after the visit itself has gone, so a morning your parent will not recall can still lift the rest of their day. The same is true of small outings and old songs: getting a parent out of a familiar ward, or playing the music they have always loved, can reach them when conversation cannot. And on the days you genuinely cannot face it, Dr Ward is clear that stepping back to protect yourself is allowed, not a betrayal. Visiting is worth it, at whatever frequency you can actually sustain.
The lived reality for carers: thinking for two
Broadcaster Bianca Dye, sole carer for her mother, describes the weight of it less as physical labour and more as a permanent second job of thinking.
"The executive dysfunction is real... I'm looking at my to do list for my mum who now is completely incapable of doing anything... So now I'm her mother and there's a sense of, I can't even mother myself sometimes."
Dye has also landed on a philosophy about honesty that she leans on constantly: you can be right or you can be kind, and she chooses kind. She is equally deliberate about not softening the reality for carers coming after her: no one warned her what she was in for, so she would rather tell people plainly what is coming.
Underneath the logistics sits a slower grief. Dr Ward describes caring for someone with dementia as an ongoing goodbye, often harder on the carer than on the person living with the disease. Gogglebox stars Kerry Silbery and her daughter Izzy, who cared for Kerry's mother Emmy, put a name to that feeling: she was still with them, but not with them. That ambiguity is a large part of why caregiver burnout is so common in dementia care. Dr Ward is blunt about the trade-off: you cannot sacrifice your own health for the person you are caring for.
"It's about finding the pieces you can connect on. And for us, and a lot of people with dementia, it's music and having a laugh and then I can sort of connect with her again. Yeah, it's a different relationship."
At least half of people in residential aged care live with dementia, and for many families that eventual move brings its own guilt rather than relief. Kerry Silbery has been open about that: the guilt she felt after her mother moved into care was that she had abandoned her, even though the decision kept everyone safer. If you are weighing that decision yourself, our guides to staying home versus aged care and caregiver guilt go into both sides in more depth.
None of this has to be carried alone. Dr Ward is emphatic that isolation makes it worse and that connection with other caregivers is, in her words, the best thing ever. In Australia, that support has a front door: Kerry Silbery credits a Carer Gateway counsellor with coaching her to stop minimising her situation and describe things as they actually were, because you will not get support you understate. Our guide to the Australian aged care and carer support system covers how to access Carer Gateway before you are in crisis.
Seeing the person, not the disease
Teun Toebes, a Dutch nurse who moved into a locked dementia ward for three and a half years to understand the experience from the inside, pushes back hard on the idea that dementia erases who someone is. Identity changes as the disease progresses, he argues, but it is not lost, and treating it as though it were lost is its own kind of harm.
He tells the story of a woman with dementia taken to see her son's new house, who cried the entire visit, distressed and disoriented, only to say afterwards that she now finally knew where her son lived: proof, to Toebes, that people can hold onto a feeling long after the memory of the event itself is gone.
"Everyone wants to belong. Everyone wants to be part of something bigger than themselves. Everyone wants to be seen, wants to be heard. And dementia doesn't change this."
As he puts it, someone is a human being first, and living with dementia second. That order matters: for how you talk to your parent, and how you judge whether the care around them is actually good.
Frequently asked questions
What are the early signs of dementia in an elderly parent?
Early signs are heterogeneous. For some people it starts as memory changes, but for others the first sign is that everyday functioning slips: bills stop getting paid, driving becomes erratic, or a hobby they were competent at falls apart. It is rarely just one dramatic moment. Geriatrician Dr Stephanie Ward notes that dementia becomes diagnosable when thinking skills have genuinely changed, when that change is making daily life harder, and when it is not explained by something temporary and treatable.
How can I tell if it is dementia or just normal ageing?
Walking into a room and forgetting why, or losing your train of thought, is common at any age and is usually normal ageing. Dementia is different in degree and consequence: the changes are persistent, they affect the ability to manage daily life, and they are not caused by something reversible like a medication side effect, depression, or a urinary tract infection triggering delirium. If you are unsure, a proper clinical assessment can distinguish normal ageing, mild cognitive impairment and dementia, and rule out the reversible causes first.
How do I deal with a parent who has dementia day to day?
Shift from correcting facts to preserving feelings. If your parent asks for someone who has died, comfort and reassurance usually serve them better than the hard truth, repeated every few minutes. Tone of voice, pace and eye contact carry more meaning than the words themselves. Be persistent and gentle about getting them seen by a doctor, and do not assume every hard day is a failure on your part: presence matters even when the details of a visit are forgotten.
Should I correct my parent or go along with what they believe?
Many dementia specialists recommend what is sometimes called therapeutic fibbing: prioritising comfort over correction when the truth would cause repeated, pointless distress. If telling your parent their spouse has died means reliving that grief every few minutes because they forget the answer, what actually helps them is reassurance, not accuracy. This is different from indulging safety risks, which still need direct intervention.
How do caregivers cope with a parent who has dementia?
Badly, at first, if they try to do it alone. Caregivers of people with dementia report more strain than the person living with the disease in many cases, partly because of anticipatory grief: watching someone you love disappear in stages while they are still physically present. Connection with other caregivers, professional respite, and being honest about your own limits all help. It is not sustainable to sacrifice your own health for the person you are caring for.
Why does my parent with dementia keep asking the same question over and over?
Because the answer does not stick, so from their point of view they are asking it for the first time each time. Geriatrician Dr Stephanie Ward suggests giving up on winning with facts and looking underneath the question instead: repeated or fixated behaviour is often driven by an unmet need such as fear, boredom, loneliness, hunger or pain. Responding to that need, with a calm tone and reassurance, usually settles things faster than another correct answer does. Taking a moment for yourself before you respond helps too.
My mother with dementia does not recognise me. How do I cope?
Not being recognised by your own parent is one of the most painful moments in dementia, and it is the disease reshuffling time rather than a rejection of you. Dr Stephanie Ward explains that a parent may not place you at your current age but may still know you as a younger version of yourself, or as someone else they once loved. It usually helps to meet them where they are instead of insisting on who you are, and to treat the loss as a real grief. Our guide to grieving a parent who is still alive covers that particular ache in more depth.
Is it worth visiting a parent with dementia if they will not remember?
Yes. People with dementia can hold on to the feeling of a good visit long after the details of it have gone, so a visit that is forgotten is not a visit wasted. As host Sarah Macdonald puts it, a parent will remember how good they felt when you were there. If a full visit is hard, even a short outing or a shared song can land, and it is also okay to protect yourself on the days you cannot face going.
Keep going
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