The terrible curse of Young Onset Dementia

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By Christopher Talbot (@CDTalbot)

 

Sean Daly picks up a photo frame from the bedside table, raises it to his face and makes slurping sounds. He cannot recognise objects and thinks he has picked up a glass of orange juice.

“There you go my sweetheart, there you go my darling.”

His wife Margaret places a cup in his hand and he thirstily drinks it down. She follows him around the room with a container of chocolate pudding and ice cream, which he ravenously eats while clutching on to her wrist. It seems like he has not eaten for days.

Sean walks and walks. In fact he has not stopped walking since 2008. When he is not walking he is strapped to a chair with restraints, which he plucks at with desperation. The belts are often too tight and rub on the insides of his legs.

He is stooped and frail and looks much older than his 61 years. He shuffles around the room uttering things under his breath; Margaret follows after him. She briefly stops him, kissing him on the lips.

“I love you,” she says.

He makes a few sounds. The two of them look into each other’s faces and then he resumes his shuffling.

On the wall of his room a corkboard full of photos depict a life that once existed away from this place. A place Margaret calls “the old bedlam”.  In one of the photos is a tall, handsome man in a tuxedo with a thin black moustache; he looks like James Bond. It was Sean.

Eight years earlier, Sean and Margaret Daly finished dinner at a Mentone restaurant and began the walk home.  It is January 13th 2006. Margaret is trying to lose some weight and is determined to clock up ten thousand steps on her pedometer. They cut through Racecourse Reserve in Mentone; just a stone’s throw from their house and a shortcut they regularly take. They are smiling and laughing, enjoying each other’s company. But everything they ever knew was about to change.

They were suddenly surrounded by a group of young men, jeering and swearing at them.

“[Sean] said I’ll take you on one at a time if you want to fight, thinking that they wouldn’t touch me.

“Next thing I saw Sean there with blood pouring out of his head. He was on the ground and there were six of them kicking him to bits. And he was unconscious then. I ran over to him and one of them started slapping my face, and he pushed me down and kicked me all over,” Margaret recalls.

A passer by yelled out and the boys scampered into the darkness. In those few moments the Daly’s lives changed forever.

Margaret sits on the sofa. The sound of a lawnmower humming in the distance; sun streaming through the windows. On the coffee table in front of her is a pile of scattered photographs documenting their horrific injuries. Their faces black and blue. Their bodies bruised from being kicked and stamped on. Sean’s face is stitched back together, his eyes swollen shut.

After the attack Sean became depressed and withdrawn. He was suffering from posttraumatic stress and was struggling to get back into the rhythm of things.

“It changed his life, and it was affecting him at work because he was so worried about us,” Margaret said.

Then later that year Sean began fainting and having seizures. They took him down to Sandringham hospital for tests. The report from the CT scan showed ‘extensive frontal atrophy inconsistent with Mr Daly’s age.’

Margaret tries to choke back the tears as she recalls the events. She begins to cry, tears roll down her cheeks.

“This kicking started off a dementia in his head and the epilepsy.

“What he went through I just don’t know. He must have known his powers were going.”

The attack left Sean with extensive head injuries that have caused his brain to begin to slowly die. The dementia has taken over and he has become a shell of the man he once was.

He is one of the estimated 24,500 people in Australia diagnosed with Young Onset Dementia (YOD). The name is given to dementias that affect people under the age of 65; reports show the number of cases is growing.

Dementia has many causes, including genetic, alcoholic or trauma related. And for those suffering with YOD and their families, the horror of this diagnosis is just the beginning of a journey to a very dark place.

Unlike later onset dementia, YOD sufferers have not had the same life transitions from work to retirement. Their lives are cut abruptly short.

Presently, Australia provides very little specialist care for those with YOD. Margaret has been through hell trying to find somewhere for her husband to live. There is only one facility that cares specifically for people with YOD. It’s in Wollongong NSW and only caters for 40 people.

Like many other people in her situation, Margaret has had to put Sean in aged care. After moving him around a few times, she had to settle for Berringa, a home for the elderly with dementia and other mental illnesses in Mentone. Sean is a good 15 years younger than most people in the facility. The residents cannot go outside. Most are frail, sitting in chairs and staring blankly into space.

Once upon a time Sean would listen to heavy metal music. Now he listens to tunes from the 1940’s and is given a doll to play with as an activity. There are no interests for a man his age.

“Shame on you Australia, shame on you. You’re leaving people to rot,” Margaret retorts. She is angry about the state of care she has had to put her husband in.

The facility houses about 30 people. A few nurses buzz about. There is a large TV in every room and clusters of people around each one, silently watching Ready Steady Cook.

There isn’t really anybody that moves around, except for Sean.

Psychologist Mandy Lovell says the main problem with aged care facilities is that they promote sedentary lifestyles.

“Everybody talks about how important it is to keep young people with dementia active…very physically active.

“Unfortunately environments like aged care are very limiting and it’s much more a culture of having to do things for older people, rather than encouraging them to be really involved in things,” she said.

Mandy Lovell started the Lovell Foundation with her husband Gary. Sparked by their own personal story, they are working at improving awareness and services for those with YOD. Gary suffers from YOD, just as his mother did before him. She was diagnosed at 41 and he struggled for years to find a place to house her that could meet her needs.

“ It was very, very difficult for her to find a place where she was well supported. And she was moved on with frequency…she had about 9 moves across the 11 years that she was sick,” he said.

Gary is faced with the same prospect unless there are changes in the current system of care available for younger people with dementia. He is sporty, loves the outdoors and dreads being stuck inside.

“I don’t want to be around people that are twenty and thirty years older than me. Who have different tastes in music, different interests in life.

“I want to be around people that are a bit more vibrant that are able to have a kick of the footy with me, maybe play a game of tennis,” he said.

The Lovell Foundation has been working closely with a large aged care provider to try and get a program up and running in Melbourne; but progress is slow and they desperately hope something will eventuate in the next couple of years.

The Lovell’s search for a care model for a YOD facility has taken them on a journey around the globe. Their first stop was Leeds in the UK at a facility called Armley Grange.

“They had their staff trained by a university… as well as experiential stuff from those who had worked with early onset for many years.

“They had also invested in a very high staff ratio, which is what we don’t have here in Australia,” Mandy said.

Staffing levels and training are one of the main concerns of carers across YOD forums and Facebook pages in Australia. This sentiment is backed by many studies including, A New Horizon by Alzheimer’s Victoria.

Something that Margaret Daly knows all too well. Sean was put in a Brighton care home with one nurse for every thirty people.

“ I mean one nurse had 30 people to look after, all with severe dementia, one nurse.”

“You might get somebody, overseas new migrants from India or the Philippines. Doing a three-month course on aged care with two components on dementia…It was just too much for anybody. I mean I couldn’t understand dementia and I’ve been living with it for years,” Margaret said.

The certificate III in aged care can be completed in 18 months online through Integrated Care and Management Training and has one unit dedicated to dementia. Qualifying workers to get a job in a dementia care home. There is no component on YOD.

“The consistent message from everyone is that they actually want really good understanding of the illness, a really good understanding of how the illness affects their loved one, and the skills and knowledge to look after their love one really well.

“And all that is a staff training issue,” Mandy Lovell said.

Alzheimer’s Australia, one of the largest dementia charities in the country is about to embark on new program featuring YOD key workers to help better manage the situation.

Another provider the Lovell’s visited was in Atherstone in the UK. They bought a “regular house on a regular street to house seven young people with dementia”.

“They were well and truly thinking outside the box,” Mrs Lovell said.

 But for the Lovell’s, and most others in the YOD field, the world leader in YOD care is the Florence centre in the Netherlands. Named after Florence Nightingale, it offers continuous care from diagnosis right through to palliation.

“They have been doing YOD properly for probably the last 15 years and that centre was just amazing. They picked up the family and the person with dementia at diagnosis and followed them all the way through the whole journey…and it runs seamlessly.

“So you have the same key worker all the way through who engages totally with the family, totally with the person with dementia,” Mandy Lovell said.

Florence Centre Psychologist Christian Bakker said the key was keeping YOD patients actively involved in their own lives.

“It is important not to take over, but to stand next to the family and try and arrange services that are able to complement what they can do themselves. It is also very important to offer services for all family members because the dementia affects them all,” Bakker said.

The current Australian system sees YOD patients put on dementia packages aimed at the elderly. A program like the Extended Aged Care at Home Dementia (EACH-D) package, provided by the federal government, offers fifteen hours respite a week to help keep people at home longer.

But the real challenge of EACH-D is that there is no continuity of carers. Sean was scared and refused to go with the ever-changing group of people that were sent to look after him.

“You have so many agencies managing the EACH-D package and you have 1 EACH-D Package out of 40 going to a younger person.

“You’re up against it because there isn’t going to be a specialist staff member that knows about the younger onset,” Mandy Lovell said.

For now YOD patients and those that care for them are left in the dark, trying to get the best care they possibly can. But for most there will be the inevitability of a care home, and in today’s climate that means geriatric care.

It’s a daily struggle for Margaret Daly to pull herself out of bed, constantly worrying about what the future will hold for Sean.

“Those lads should have killed him that night because this is worse than bloody murder,” Margaret whispers through her tears.

For more information, visit alzheimers.org.au or call the National Dementia Helpline on 1800 100 500.

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