Julie Cinanni pleads for dementia eligibility for voluntary assisted dying after watching mum, aunt suffer

For 34 years Julie Cinanni watched her mother and aunt succumb to dementia. “Both Lorna and my mum existed for far longer than they wanted to. It wasn’t a life”, the South Perth woman said as she pleads for dementia patients to be eligible for WA’s voluntary assisted dying services. In WA, VAD is available to those who have been given six months to live, or 12 months if it’s a fatal neuro-degenerative disease. Dementia on its own is unlikely to make a person eligible for VAD. By the time the disease is advanced the person will usually no longer have decision-making capacity Julia’s mother Jean was diagnosed with early onset dementia at 59. Her aunt Lorna took on a carer’s role in the early years of Jean’s diagnosis but in a cruel twist, was diagnosed not long after Jean’s passing in 2002. “(Mum) pretty much got to a point where she was immobile, put in a princess chair…she lost speech… couldn’t recognise us.,” “She needed care with everything eventually. She pretty much spent seven years in that state. “Lorna went into care in 2014…She was at least five, maybe six years also immobile. Also unable to communicate. Also dependent for all aspects of daily living” “I know it wasn’t the life she wanted to lead. She told me many times.” “I don’t want my children to have to experience what I have had to go through. And I don’t want anyone else to have to do it either,” she said. VAD is available to dementia sufferers in Quebec. Daphne Gilbert, a lawyer with Dying With Dignity Canada, said sufferers in the early stages of their dementia diagnosis and still have capacity to consent, can set out a list of symptoms that would make them no longer want to live in the future. “It could be things like I can’t recognise anyone in my family. It could be that I can’t communicate. I can’t take care of my daily needs,” she said. “You then appoint someone who would be what’s called your trusted third party who would know about the existence of your advance reques. Know that you have a plan for how you want to trigger it and would be able to call it into action at the time when you seem to be manifesting the symptoms that you were afraid of and that you don’t want to live under.” The Australian Medical Association of Western Australia president Michael Page says any expansion of VAD in WA would need considerable medical and societal input. 7NEWS can reveal dementia eligibility was left out of a recent statutory review of the legislation. Dying With Dignity WA president Stephen Walker says the Health Minister Amber-Jade Anderson ignored their requests for it to be discussed. “She insisted that any submissions made to the review talking about dementia, for example, and changes to eligibility criteria, she insisted that they wouldn’t be considered,” he said. “We put them forward anyway, but it was just ignored” “When you look at the report that came out, it’s as though we hadn’t said what we’d said, and we were speaking on behalf of 1000s and 1000s of people in Western Australia.” Health Minister Amber-Jade Sanderson says she is sympathetic, because dementia is a horrible disease. “I don’t think we are at a place in our society or in our parliament where we are ready to legislate that, she said. “I think we are a little way before legislators are willing to consider that regulation and importantly medical practitioners are willing to participate.” Ms Gilbert said the fact it was being done Quebec was evidence laws could be made to protect vulnerable people. “I think it’s about choice and I think it’s about dignity and autonomy and those values are universal across the world. They’re not unique to Canada,” she said. A Dementia Australia spokesperson said they advocated for choice. The peak body estimates there are more than 40,000 West Australians living with a form of dementia. That figure is projected to increase to almost 87,000 in 30 years.