‘It doesn’t define me’: What is it like to live with dementia?

Natalie Ive was in her 40s when she started forgetting the names of children in her kindergarten class. She loved being a teacher and quickly developed workarounds, such as checking the roll or a child’s name on a painting to prompt her memory.

But her family was noticing changes too. She had to consult recipes to make meals she once cooked effortlessly. Sometimes her children helped her cross the road because she couldn’t work out how far away the cars were.

One day her daughters went to the movies. “I just lost where I was,” Ive says. “I had put eggs on to boil and the water all evaporated. The girls tried to call me; I didn’t know how to use the mobile to answer it. I didn’t know how to open a door or anything. I was just sitting there.”

Geoff Fairhall was an academic and senior executive who learnt seven languages, was passionate about music, the arts, architecture and design, flew light aircraft and was a keen sailor. And then, out of the blue, he began struggling to tie his boat to the trailer. “It was confusing; I didn’t know what was going on,” says his wife, Anne.

When Mithrani De Abrew Mahadeva was diagnosed in 2015, she was told to prepare for a nursing home. She was 65. “I said, ‘I don’t want to go into a nursing home. This is my own home, something I am familiar with.’”

Her friends didn’t believe the diagnosis. “That’s because I was talking,” she says. “But I was struggling. I was stuck inside the house because I was having falls and memory problems.”

Ive, Fairhall and De Abrew Mahadeva all live with dementia, the second leading cause of death in Australia after heart disease, and the leading cause of death among women.

There are 472,000 people in Australia living with dementia – about 2 per cent of the population – and someone in the world develops a form of it every three seconds.

But it remains poorly understood. Many people wrongly believe dementia is a normal part of growing old. And memory loss is not the only symptom: dementia can affect behaviour, mood, the ability to experience pleasure, language, planning, problem-solving, spatial awareness and sensory perception.

What is dementia?

Dementia is not one specific disease but the umbrella term used to describe symptoms caused by a group of brain diseases that affect both young people (younger onset dementia) and those aged over 65.

“Two of the biggest myths are that dementia is a normal part of ageing and only old people get dementia,” says Dementia Australia chief executive Maree McCabe.

There are more than 200 different diseases that cause dementia, although most are very rare. The most common is Alzheimer’s disease, which accounts for about two-thirds of cases. Other common forms include vascular dementia, Lewy body disease and frontotemporal dementia.

Another disease that can cause dementia is chronic traumatic encephalopathy. It is linked to repeated blows to the head and was found post-mortem in former AFL players Polly Farmer, Danny Frawley and Shane Tuck.

Of the almost half a million Australians who have dementia, 28,300 (about 6 per cent) have younger onset dementia.

“It’s much rarer for younger people to get dementia, but it’s certainly not as rare as we would like it to be,” McCabe says. “Often some of the younger forms of dementia that occur are inherited.”

Dementia is progressive and ultimately terminal, although a person can go on living for many years. In late-stage dementia, people may lose the ability to walk and speak. Swallowing difficulties increase susceptibility to aspiration pneumonia, caused by accidentally inhaling food or fluids into the lungs, which leads to many deaths. Others may die as a result of complications related to loss of brain function, dehydration, malnutrition, falls and infections.

Dementia Australia recommends using the phrase “a person living with dementia” to emphasise the person first. It says expressions such as “delightfully dotty” or “away with the fairies” are derogatory and should not be used, and terms such as “victim” and “afflicted” contribute to the stigma surrounding dementia.

What is it like to live with dementia?

People living with dementia often find that everyday situations – making cups of tea, remembering instructions and going to the toilet in the middle of the night – become more challenging.

Ive, now 49, was diagnosed with younger onset dementia/primary progressive aphasia, a type of dementia that makes it difficult to express thoughts or find words.

She meticulously plans trips to the supermarket. She carries a shopping list, ticking off each item in the trolley, and listens to music through headphones “to block out all the other stuff so it doesn’t become overwhelming”.

“[Otherwise] there are just too many sensory things going on,” she says. “I’ve got my notepad, I’ve got my pen, music going, so I am just focusing on that. Tick, tick, tick.”

As a teacher, Ive excelled at communicating. Now it is sometimes hard to get her thoughts across. “But I know that inside there is that determination. This is who I am, I know I am able to do it, but maybe not in the same way,” she says.

She uses strategies to help her understand and express herself: requesting frequent breaks, asking for information to be repeated and broken down into single steps, taking big breaths and pausing. “That allows for me to be able to continue to the best of my capabilities,” she says.

Ive continues to live a fulfilling life and enjoys painting, diamond art (a form of mosaic), gardening and beach walks. “The beach gives me great calm; it centres me,” she says. “It’s very therapeutic. When I go there it just helps with some clarity.”

Instead of reading, she now listens to audio books.

Her mission is to educate the community about dementia. She would love to see dementia-friendly hours at supermarkets (similar to the Quiet Hour at some Coles stores, when noise and distractions are reduced) and has inspired her gym to raise funds for dementia.

“I want to really highlight the positives,” she says. “Even on bad days I am still doing things for myself. Yes, aphasia is a part of me, but it doesn’t define me.”

De Abrew Mahadeva was diagnosed with mixed dementia (Lewy body disease and Alzheimer’s) when she was 65. Now 71 and living in her home, where she is cared for by a daughter, she has “my very good days” and then “really bad” nights, when she is kept awake by traumatic memories.

Her handwriting is getting messier, she says, and sometimes when she reads in the morning she knows she is looking at letters but can’t make out the words.

To give others a sense of what it’s like to live with dementia, Dementia Australia uses virtual reality. Strap on goggles and you see the world through the eyes of EDIE (which stands for Educational Dementia Immersive Experience), a man living with dementia who has to go to the toilet in the middle of the night.

It’s wildly disorienting: the walls rustle like a living creature, furniture rushes at you at distorted angles, and the toilet – a muted blur of shapes in the dark – turns out, too late, to be the washing basket.

McCabe says: “We’ll have family members say, ‘Look I don’t get it. Mum or Dad walks into the bathroom where the toilet is and they wee in the corner. Why don’t they wee in the toilet?’ Well, they can’t see the toilet. So the toilet seat needs to be a different colour so that they can actually see it.”

Another virtual reality scenario looks at mealtimes. “Sometimes you’ll have a white plate on a white tablecloth and they might have chicken and cauliflower and peas, and they’ll only eat the peas, because that’s all they can see,” McCabe says. “So having coloured crockery shows up the food on the plate and enables them to see what they’re eating and choose what it is that they want off their plate.”

What is it like living with someone who has dementia?

The diagnosis often comes as a relief, although there is also a grieving process.

Chris White was a high-profile union leader for 40 years. As secretary of the Trades and Labor Council in South Australia, he argued the state wage case, pushing for an increase in the minimum wage. He kept detailed diaries and was a persuasive public speaker, featuring regularly in the media.

“Now he can’t organise appointments and he also struggles with recording them,” says his partner, Kathryn Moyle. “He doesn’t even remember emergency numbers. So he went through an enormous grieving process, as did I, and at one stage he said, ‘I’m no longer Chris; you can call me somebody else because I’m not Chris any more.’”

“The diagnosis was really comforting at one level and distressing at another.”

Moyle noticed changes a decade before White was diagnosed five years ago with frontotemporal dementia at the age of 67. “I had been saying for years to a friend, ‘I really don’t think he is the same, there is something wrong.’”

He began sleeping a lot in the afternoon and behaving in an antisocial way that was out of character. Once he loudly told two people they were too fat to fit in a lift.

“The diagnosis was really comforting at one level and distressing at another,” Moyle says. “I was relieved to know that this is what was wrong with him, because he didn’t accept I thought his behaviour was problematic.”

People with the behavioural variant of frontotemporal dementia often have trouble controlling their behaviour and may say inappropriate things or ignore others’ feelings. However, they rarely notice these changes.

“One of the things that I spend a lot of time doing is apologising to people,” Moyle says. “For example, if Chris doesn’t get what he considers to be the right answer at the library when he wants to borrow a book, he will just get really angry and start yelling, and the behaviour is completely over the top for the issue. So he actually needs to be accompanied most of the time, and that generates its own challenge for me.”

She’s had to become “extraordinarily patient”. It takes three attempts to get out the door. “Wallet and hearing aids are often misplaced,” Moyle says. “There’s a real line between hyper-attentiveness that is so controlling it stifles and trying to position Chris to keep his independence.”

Moyle misses the confidential conversations and philosophical debates you have with your partner. “Now Chris gets agitated easily, those sorts of conversations are no longer there for me. That being said, I am glad I retired in 2019, because it means that we have a lot of time together. And when Chris is firing on three out of six cylinders, which is the best we can expect, it’s lovely to have him around – he’s charming, he’s voracious, he wants to go to the theatre, he wants to go to the galleries.”

Geoff and Anne Fairhall went on a round-the-world trip in 1991. Geoff, then 51, struggled to cope with things that normally wouldn’t faze him, such as delayed flights and hotel alarms going off in the middle of the night.

“He was really cranky in London,” Anne Fairhall says. “I put that down to being tired, but it was unusual because he was a gentleman and always very diplomatic and controlled in a dignified and calm way. This was a public display of anger.”

She says he became “quite disinhibited in all sorts of difficult ways”. Once, he hit her on a plane. She was flummoxed because it was so utterly out of character for her gentle husband. “He had never whacked me in my life.”

“You need to concentrate on the things you can do, not the things you can’t.”

He was finally diagnosed with frontotemporal dementia at 66, after 10 years of incorrect diagnoses, including anxiety and depression. One doctor told him he was “too young” and “not the type” to get dementia. “It was terrible – in those days doctors didn’t have a good understanding,” Anne Fairhall says.

Family carers often experience a particular kind of grief. “It’s not like an end-of-life grief, where it’s very final, it’s a living grief and it’s an anticipatory grief,” Fairhall says.

“Some people say, ‘Well, he hasn’t died’, but you can still go through the phases of grief even when the person hasn’t died, because you’ve lost a person you did have. But you need to concentrate on the things you can do, not the things you can’t do.”

How do carers cope?

Fairhall recalls creeping into the offices of Dementia Australia and being surprised by how normal everything looked. “Maybe I thought it was going to be like a leprosy hospital or something – I thought I had been tarred with something that was shameful, because there is a lot of embarrassment,” she says.

The organisation offers support for families and carers and she was impressed with how helpful it was. She attended a course for couples who had just received a diagnosis, where she met other carers and learnt about services available.

During the middle phase of her husband’s dementia, the stress was “unbearable at times”, she says. “Disturbed sleep, collapsing in the bathroom, going out the front door at 1am in the morning and not knowing when they’re going to come back.”

“This is not who he is, this is an aberration. I’ve known him long enough to know he loves me, I love him.”

Aggression can be an issue with frontotemporal dementia and Fairhall had a bag permanently packed so she could leave the apartment in times of emergency.

She coped by reminding herself this was the disease and not her husband. “This is not who he is, this is an aberration. I’ve known him long enough to know he loves me, I love him.”

Moyle recommends carers maintain their own interests and friendships and ask for help. “There is a danger of your being absorbed by it, it can be totally and utterly overwhelming,” she says. “I do think it’s really important for carers to have social workers and counsellors who are on your side.”

She also advises telling people about the diagnosis, because dementia is so complicated and misunderstood. “When Chris was diagnosed, we decided we would just tell a few people and then we decided that was ridiculous because it was asking people to keep a secret. We also felt it would be better to keep our friends in the loop if Chris started behaving weirdly.”

Do people treat you differently if you live with dementia?

There is a scene in The Father, which earned Anthony Hopkins an Oscar for best actor, in which a carer tries to coax him – a man living with dementia – into swallowing a “pretty blue” pill. The man snaps at her, telling her not to talk to him as if he’s “retarded”.

Natalie Ive’s daughter, watching the film with her, dug her in the ribs. “She’s like, ‘That’s you!’” Ive says.

Ive rails against being treated differently and finds it irritating when people think of her as “suffering”.

“I’m struggling, in a sense, but I am not suffering. I’m Nat, I’m still Nat. OK, there are difficulties and challenges, but I can do things in a different way.”

In a survey of more than 5700 people released by Dementia Australia in 2020, three-quarters of those who live with dementia said people didn’t keep in touch like they used to. Two-thirds said people they knew had been avoiding or excluding them. Ninety per cent of carers, friends and family members felt people living with dementia were treated with less respect, and 81 per cent felt they were treated differently in shops and restaurants.

McCabe says discrimination stems from a lack of understanding and knowledge of dementia, what it is and how it affects people.

“A little bit of support can make a really big difference,” she says. “It could be as simple as giving someone space to do things for themselves, listening to the person, not trying to solve all their problems, giving the person time to find the right words, or using technology to support someone in their day-to-day activities.“

What shouldn’t you say to someone living with dementia?

“Remember?” or “I already told you.”

McCabe says: “When you say to somebody, ‘Don’t you remember? We’ve had this conversation 30 times’, what it highlights for people is their deficit. It’s absolutely confronting for them.

“It’s better to just give them the answer to the question. They’re not doing this to drive people crazy; they’re doing this because it is the first time they’re asking, in their world.”

Some people living with dementia rely on confabulation – the subconscious creation of false stories – to fill gaps in their memories. They are unaware that what they are saying is untrue.

Fairhall was recently greeted by staff at her husband’s aged care home who said they had heard all about how the couple met in Nepal.

“I said, ‘Oh, that would have been nice,’” she says. “We met on the beach at Ocean Grove, nowhere near as exotic. You’ve got to have a sense of humour, because sometimes some of these situations are really, really funny to our normal brain, but you have to respect their dignity and the fact it’s very real to them.”

As humans we are prone to reinforce the truth … but it’s not always the best thing for people living with dementia.

Maree McCabe, Dementia Australia

It’s also advised not to argue with someone living with dementia, because it could upset them or make them angry. “You’re constantly swallowing your pride because you don’t get to ventilate what your view of it is,” says Kathryn Moyle. “But there’s no value in having that kind of discussion … Chris can’t cope with any level of conflict any more.”

It’s also not uncommon for someone living with dementia to believe that a loved one who has died is still alive. Should you tell them the truth?

“As humans we are prone to reinforce the truth – inherently we want to be honest,” McCabe says. “But it’s not always the best thing for people living with dementia. Every time you tell them, it’s like the first time they hear it – it’s cutting, it’s devastating. So often it’s best to say, ‘Look, they’re just not here today’ or ‘We’ll catch up with them later.’”

So what should you do?

Looking at photos or articles can help spark memories. Geoff Fairhall grew up in Tasmania and the couple honeymooned on Lord Howe Island, so Anne Fairhall will often bring in mementos from those places when she visits the aged care home.

“Geoff will remember things that go back 40 to 50 years ago, whereas if you asked him about something that happened five minutes ago, he’s lost it,” she says. “Photos can remind people of something earlier in their life without you having to say, ‘Remember when.’“

She will always bring chocolates, which her husband loves, and the couple will read together. “He still has the ability to read in the moment,” she says.

Dementia Australia encourages grandchildren to visit too. The organisation suggests playing games, watching a well-loved video, listening to music, helping with personal grooming and outings such as a stroll or short drive.

Can you prevent dementia?

No – but there are ways to reduce the risk.

A landmark report in medical journal The Lancet in 2020 identified 12 risk factors that, if addressed, might prevent or delay up to 40 per cent of dementias.

These include less education in early life, hearing loss, smoking, high blood pressure, obesity, depression, physical inactivity, diabetes, infrequent social contact, excessive alcohol consumption, head injury and air pollution.

To reduce the risk of dementia you can increase physical activity, maintain a healthy, balanced diet, quit smoking, limit alcohol intake, improve sleeping patterns and check your hearing.

“Many people don’t know hearing loss can increase your risk of developing dementia,” says McCabe.

Studies have shown that the brains of people with hearing impairment atrophy more quickly. The brain must also work overtime to understand what people are saying, so there are fewer resources available for other functions such as learning and memory. And people with hearing impairment are more likely to become socially isolated, intensifying the risk of dementia.

The Lancet report found hearing loss was the largest modifiable risk factor, accounting for 9 per cent of cases. It recommended hearing aids.

What treatments are available?

A number of drugs are available in Australia for use by people with dementia.

These include drugs used to improve memory, known as cholinergic treatments (donepezil, sold under the trade name Aricept, is an example) and medication to treat some of the challenging behaviours.

Associate Professor Michael Woodward, director of Austin Health’s Memory Clinic and adviser to Dementia Australia, says: “Cholinergic drugs are not very effective, they have lots of side effects, but they are currently the standard of care for Alzheimer’s.”

He says a low dose of an antipsychotic can be useful in extreme cases, such as when someone is taking “swipes at hallucinations”.

“We tend to try and use those drugs very, very sparingly; they have certainly been overused, particularly in residential care,” he says.

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The first new treatment for Alzheimer’s disease in 20 years was approved for use in the US by the Food and Drug Administration in June.

The drug, known as aducanumab, removes amyloid plaques that accumulate in the brains of people with Alzheimer’s and slows the progression of the disease. It has been trialled in Australia and throughout the world.

“If the FDA feels that the results are clinically significant then they will give the nod of approval and we will have our first ever marketed drug that has true disease-modifying effects,” Woodward said in April.

”There are several other drugs that remove amyloid that look equally promising that may well end up also being approved. But they will probably only work significantly if they’re used early enough … not in the advanced stage of dementia.“

Still, Woodward is optimistic he will see a cure for dementia in his lifetime. “I’ve been saying it’s five years away for the last 20 years,” he says.

Meanwhile, people living with dementia and family carers say it is possible to continue living well with dementia.

“You live in the present a bit more and look for moments of creating joy.”

In 2020, Natalie Ive was one of 26 women who had achieved success in their field selected to walk the Priceline Beauty runway at Melbourne Fashion Week. “I just felt so proud, so honoured, to represent younger onset dementia in front of the TV with other inspirational women,” she says. “You don’t need words with that. I’m able to do things and have the world watch.”

It’s now 30 years since Geoff Fairhall started showing signs of dementia on that round-the-world trip. For some years after his diagnosis he was able to do short-term projects in academia, sail, travel overseas and attend concerts.

His wife says an early diagnosis is critical because it helps people with dementia and their families adjust and manage their lives.

When Geoff Fairhall began to struggle to follow classical music, for example, he switched to jazz, which is more improvisational, and which he still finds calming. When travel became too challenging, the couple’s children, who were living overseas, visited them in Melbourne instead.

“You live in the present a bit more and look for moments of creating joy,” Anne Fairhall says. “People have always seen dementia as a death sentence, but you can go on living well with dementia for many, many years.”

This story, first published in April 2021, has been updated to reflect Anthony Hopkins’ Oscar win and the US Food and Drug Administration’s approval of a new drug to treat Alzheimer’s.