The story of how HammondCare’s Younger Onset team, Social Club and Specialist Mental Health Service came together to transform the life of a young woman diagnosed with complex mental health issues and younger onset dementia.
We don’t really know Sharon’s story. All we know is she had a difficult life before she came to us. The story picks up nine years ago when she turned up homeless on her step-father Peter’s doorstep in Sydney.
A beautiful man in his late 70s, Sharon’s step-father Peter had great sympathy for her situation and took her in.
With a suspected history of drug and alcohol abuse, Sharon was soon after diagnosed with bipolar affective disorder and cerebral atrophy by the local health service.
Incredibly, Peter himself had motor neurone disease, a degenerative disorder that causes your muscles to waste away.
Despite the challenges facing them, for many years Sharon and Peter made do. But as the years went on they grew more dependent on each other, and more isolated as their health deteriorated.
Then, seven years after coming to stay with Peter, at the age of 49, Sharon was diagnosed with younger onset dementia.
That’s when she was referred to the Specialist Mental Health Service for Older Persons (SMHSOP) at HammondCare’s Braeside Hospital.
Jennifer Markham, a clinical nurse consultant at Braeside was the first person from HammondCare to make contact with the pair.
“I went to see Sharon and her step father at their home. Peter was the frailest, loveliest man you’ve ever met. He’d cared for her the best he could, but they were in a very difficult situation. Sharon would just go off wandering the streets and he’d be calling the police or driving off looking for her,” she says.
Aside from responding to Sharon’s erratic behaviour, Peter was trying to shower her, look after the house and cook for them both. It was getting beyond him and they had difficulty getting out of the house for appointments, let alone anything else.
Seeing their desperate need, Jennifer arranged for an external provider to come in and take care of Sharon’s hygiene and personal care. She also engaged a consultant psycho-geriatrician to regularly review Sharon’s mental health. Within weeks, there was a huge change.
“After receiving some personal care, Sharon looked like a different person. When I came to visit, I’d go home with tears in my eyes,” says Jennifer.
But the big challenge was going to be finding a way to engage Sharon, to get her out of the house and give Peter some respite from his role as carer.
That’s when Jennifer called on Pat Roles, HammondCare’s Younger Onset Dementia Advisor. Pat went to visit Sharon and Peter on Christmas Eve 2013.
“I was madly looking for something that I could connect with her and then I just happened to spot some beads lying around. So I made a big thing of it and said I did beading, and was she doing beading? And that’s how we connected.”
Pat thought Sharon would benefit from being part of the local HammondCare Social Club, a social environment where people with dementia can connect with their community, do activities and make new friends.
Pat told Sharon that she had friends who came to a house just down the road who’d love to spend a morning beading with her.
Sharon was interested, so Pat got in touch with the manager of the Social Club, Margaret Cross.
“I went to visit Sharon,” says Margaret, “and I said to her, ‘How about coming down to my place on Friday for a cup of tea and meeting some of my friends because we always have people coming and going?’ I told her we’re always making earrings down at the house. And she just looked at me with these big eyes—she has beautiful eyes and a beautiful smile—and she said ‘OK’.”
Sharon started attending the social club weekly, building friendships and trust with the carers and other clients.
“She took in her beading and that was sort of the key to it all,” says Pat. “She showed the women how she did it and that empowered her and took the focus off her illness. And with the staff supporting her and making her feel valued, she just slotted in beautifully with the older people.”
Sharon’s caseworker Jennifer Markham could see the huge difference it made to her wellbeing. “Once we got things in place and we got onto the HammondCare younger onset team and they got her out socialising, it was incredible. Before that she wouldn’t leave the house, but now she would go out on day trips and go out to the club each week.”
Sadly, over time, Peter’s health worsened. But thankfully, Sharon was already strongly connected to the Social Club, and started to attend almost every day of the week.
Peter and her neighbour just knew they could drop her around and we’d look after her. It gave Peter some time to be sick, to give him a break,” says Margaret.
Unfortunately, as time progressed, so did Peter's motor neurone disease, and he ended up admitted to hospital. At the same time, Sharon’s dementia was worsening.
It was soon clear both needed to be in full-time care. We were able to find a place for Sharon in a home up near her brother on the NSW Central Coast. And Peter has found a new home with us at HammondCare.
Margaret says it was the right decision, but they’re missed at the Social Club.
“Sharon loved coming because we were like her sisters. She formed a friendship with us and the other attendees at the social club. I’m not sure how she’s going in her new home, but I’m sure she’s doing just fine.”