Hearts And Minds
By Joel TozerOctober 11, 2012
A multimedia report on the experience of living with — and loving through — dementia. Read the feature-length introduction below and click through to the dedicated site for video and audio stories and a chance to share your own.
On the kitchen wall is a note that reads: “Mandy makes her own breakfast. Garry only needs to make his own toast.” There is another about how to use the oven, and a reminder to keep plastic and metal out of the microwave.
In the bedroom, sticky-taped labels indicate where the folded clothes are kept — shirts at the top, t-shirts beneath. On the back of the front door is a checklist: collect the keys, turn off the lights and lock the door.
Their home hasn’t always been like this. Mandy Lovell, now 40, says she started noticing small changes in Garry four years ago, when he was 45 years old. He’d begun to find mundane tasks — such as making the bed in the morning or preparing breakfast — difficult and confusing.
He wasn’t unable to do it. He just had to be guided, step by step.
“You would tell Garry a piece of information and a little bit afterwards Garry would ask the same question,” Mandy says.
Garry Lovell, now 49 years old, has Alzheimer’s disease — a common form of dementia that eats away at a person’s memory, thought processes and physical co-ordination. Many people mistakenly think the disease is just part of the ageing process, reserved for the elderly who are nearing the end of their life.
But Garry is one of almost 24,000 Australians under the age of 65 who are thought to be living with younger onset dementia.
Garry’s diagnosis didn’t come as a complete shock. He was in his early 30s when he began caring for his mother, who suffered from Alzheimer’s; in her 50s she was unable to look after herself.
“I remember she said to me, ‘I hope you don’t get this’,” he says.
Garry was reluctant to send his mother to a nursing home. She was so young and, although her mind was deteriorating, she was still physically active. When he finally decided to put her into care, the hardest thing for him was knowing that she wouldn’t be surrounded by people her own age.
“At the moment there really isn’t a decent nursing home for younger people,” he says.
The year his mother died — in 2001, at just 61 years old — Garry decided to find out if he was going to get the disease. He took a genetic test and the results were devastating. He was 39 at the time, and although the doctors couldn’t tell him exactly when the symptoms would kick in, they believed it would be at a similar age to that at which his mother had experienced the onset of the disease.
Garry had only been dating Mandy for a year when he took the test. “I was open about everything, because I wouldn’t want her to find out six years later or something. It's not fair,” he says.
Having cared for his mother, he knew that at some point he wouldn’t be able to take care of himself, and that it was a lot for someone to accept early on in a relationship. He told Mandy: ‘If you don’t want to be a part of this then I understand.’
“I just thought, ‘Well, we’re in this together’,” Mandy says.
The symptoms of younger onset dementia are much the same as those experienced by people who suffer the disease in later life. But the impacts on a person’s family and livelihood are remarkably different.
“Getting this disease in your 40s or 50s means you’ve got young families, and you’ve got the financial issues of having usually to give up your job. All of those things have a major impact upon a person,” says Professor Brian Draper, deputy director of the Dementia Collaborative Research Centres at the University of New South Wales.
Garry looks much the same as many other men his age, but his previous routine of doing a full-time job and having an active social life is slowly becoming impossible to maintain. He recently gave up his job as a professional gardener and Mandy has also had to cut down the hours she works as a counselor, in order to look after him more.
In the early stages of their relationship, Garry made it clear that he didn’t want to pass on the Alzheimer’s gene. But Mandy was hopeful that by the time they decided to have children, scientists might have found a cure for the disease.
The couple are currently trialing a method of IVF which enables embryos to be tested for the genetic condition. “That’s fantastic for people in our situation, and it’s fantastic for us because it allows us to have a child that is free of this condition,” Mandy says.
“We’re still having discussions about it because Garry is experiencing some of the decline [associated with Alzheimer’s] and we know of other couples who are sort of going through the same thing and have children, and of course it is very difficult to manage children and newborns and toddlers,” she says.
“No matter how desperately I want children, just dealing with the progression of dementia is hard.”
What doctors — and legislators — aren’t recognising
It’s thought that almost 300,000 Australians are currently living with dementia. And given the country’s ageing population, those numbers are expected to balloon to almost one million by 2050.
It’s a disease that puts a strain not only on families, but also on the healthcare system, which many experts say is not properly equipped to diagnose or care for those suffering from dementia-related diseases.
Carers and relatives of people with dementia spoke to The Global Mail about the long and emotional process of getting an accurate diagnosis. Some doctors mistake the condition for stress or depression, resulting in a delay of treatment until symptoms are advanced and therefore more difficult to treat.
Professor Draper tells The Global Mail that among doctors, nurses and a range of other health carers, “there’s quite a poor understanding of how to assess dementia and how to determine if a person has dementia.
“The amount of funding that’s required in total, across the world, to actually make a real dent in understanding how to treat this thing, needs to increase dramatically,” he adds.
Even though the disease is the third leading cause of death in Australia — after heart disease and stroke — it receives only a small fraction of healthcare funding.
In 2011-12, the National Health and Medical Research Council invested $24 million in dementia research. Over that same period, the Council gave $159.2 million towards cancer research and $94.2 million for research into cardiovascular disease.
As part of its ‘Fight Dementia’ campaign, Alzheimer’s Australia is seeking $200 million, over five years, from the federal budget for dementia research. “This would lead to a total investment in research of only one per cent of the cost of [treating] dementia,” a spokesperson for the group said.
But medical professionals say that more funding is also needed to train and equip hospitals and aged-care facilities to cope with the kinds of symptoms and behaviours displayed by people with dementia, such as changes in a person’s mood and mobility.
In August this year, the federal government listed dementia as a national health priority, and committed $268.4 million to address the disease in the health and aged-care system.
The first priority areas were set out in 1996; they included cardiovascular health, cancer control and mental health.
“In Australia, dementia has been perceived as being purely an aged-care issue,” says Professor Draper. “That’s going to change now and that’s really important.”
Who’s equipped for this?
Many relatives or carers of people with dementia say the symptoms don’t appear overnight, instead they advance slowly, progressing in small increments, until you’re suddenly hit by the fact you’re caring for someone who behaves like a toddler, but who has the physical strength and weight of an adult.
Paul Wenn, 69, and Tony Walsh, 71, have lived together for 22 years. In 2006, Paul came home after a visit to the doctor. Tony was relaxing in their backyard pool when Paul told him that he’d been referred to a memory clinic.
“I thought, ‘That’s a load of nonsense. I can’t see anything,’” Tony said. “But what happens is that it is such a gradual process, that I was beginning to fill in the gaps [for Paul] and didn’t realise what I was doing.”
It took three years before Paul was properly diagnosed. Tony recalls one doctor telling the couple: ‘It is impossible for somebody your age to get dementia and those sorts of problems’.
Last year Paul was also diagnosed with Lewy Bodies disease, a form of dementia that affects the nerve cells in the brain. He had already been diagnosed with Alzheimer’s and Parkinson’s disease a few years earlier.
“One of the symptoms of Lewy Bodies is that people can become fairly aggressive. And Paul does, or has become in the past, aggressive — but not violent,” Tony says.
The first time it happened they were returning home from a cruise, a holiday choice they often made because it meant they could see the world together, and Paul could rest when he was tired. On this occasion, Paul suddenly became aggressive and Tony called his specialist who advised getting him to a hospital emergency room.
“But whilst we waited [for an ambulance], Paul became very aggressive and we called the police up because he was threatening to beat not only me but the house up. And that’s very unlike him. I mean, that’s totally unlike him,” Tony recalls.
It was difficult for Tony to find a nursing home that was equipped to deal with Paul’s condition. He has recently moved him into a high-care facility where he can visit regularly and sometimes bring Paul home for lunch.
“I know which direction we are headed,” Tony says. “Obviously in a place like this you see people who are seriously disabled and that can go on for many years, and I don’t want that to happen to Paul if possible. But, there is no way you can control these things.”
The grim reality of diseases such as Lewy Bodies and Alzheimer’s is that they are terminal. Gradually, the brain’s ability to control everyday functions, such as walking, talking and eating, is affected.
In addition, Professor Draper says, “physical illnesses that a normal person of a particular age group would be able to shrug off without a problem tend to have quite a huge effect on a person with Alzheimer’s.”
When someone understands
A common story told by carers of dementia sufferers is that as the disease progresses, it becomes completely isolating. Social events become too difficult to attend, and few other people understand what you’re going through.
Alzheimer’s Australia runs a program called Living With Memory Loss, which connects relatives and carers of people with dementia. One such group in Victoria has been meeting regularly for the past five years.
When the eight or so couples first started getting together, each had a partner who was living with younger onset dementia. At first they would meet for lunch at a local pub or café every four to six months. But, as time progressed, they came to rely on each other a lot more, and they now meet every six to eight weeks.
“I could walk into a room and I didn’t have to explain my situation. Everybody was already there — they knew,” says Sandra Mast, whose husband, Trevor, died from Alzheimer’s disease earlier this year.
Many group members recall the time they made the difficult decision to put their partner into care, often after caring for them alone at home for some years. Among this circle of carers, they were able to tell their stories and know they would be understood.
“This group are the only people who knew what we were going through, to be honest,” says Bernie O’Brien, whose wife suffered from dementia.
“Putting her into a nursing home was nearly kidnapping her…we had the luggage in the back, she didn’t know where we were going. You sit there and it’s the last time you have breakfast together that morning.”
These carers all say that without the group they wouldn’t be able to cope. And Sandra advises others that, “no matter how hard it is to leave your husband at home, or your partner at home with someone else, try and keep a life, because it is really hard to pick it up after six or seven or eight years if you haven’t had it.”
Testing for the future
The prospect of taking a genetic test to find out if you will get a disease is too daunting for many people. But when Garry Lovell found out in his 30s that he had the Alzheimer’s gene, he decided to participate in any type of research that could potentially help others in a similar situation.
Every year since 2001, Garry has participated in tests that track changes in his cognition. “This was of value early on to doctors, as there was no formal data collection occurring,” Mandy says.
About four years ago he agreed to have annual blood tests, brain scans, and neuropsychological testing, to track changes across a number of health indicators. The data will be used as part of a worldwide study for Dominantly Inherited Alzheimer’s Disease.
Professor Draper hopes that soon many more people like Garry will be able to be diagnosed earlier in life, before they have significant symptoms.
“The future of dementia treatment would be identification of the persons at risk of developing dementia and giving them treatments that will prevent that ever happening,” he says.
In Garry’s case his short-term memory began to fade first. He couldn’t remember where he’d parked the car, and following a narrative in books or movies was difficult. Now he’s losing the recall of specific words.
“At first I was a bit embarrassed and felt a bit stupid. But now I just try my best — that’s all I can do,” he says.
Mandy keeps a diary of what they’ve done together each day. And sometimes at night they use an audio recorder to store their feelings and thoughts.
When Mandy goes to work, Garry goes with her and waits in the car, playing Sudoku on his iPad. Although finding the right word has become difficult for him, numbers, he says, are easy.
“What I see sometimes is Garry feels this frustration because he’s got a word on the tip of his tongue and just can’t get there,” Mandy says.
“Yeah, it drives me nuts,” he says.
When Garry first started noticing changes in his memory, the couple sat down and wrote a list of all the places they still wanted to visit. They took a ride in a hot-air balloon. They also make sure to keep in contact with close friends and family.
Garry wants to stay at home with Mandy for as long as possible, but he knows that at some point it will become too much for her. His biggest fear is spending the last years of his life in a nursing home.
“I know what happens because I watched mum getting into place after place after place,” Garry says.
“I don’t want to go to anything like that.”