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Posted on Sep 27 2023 by Fiona Bailey

A woman with Young Onset Dementia has said “negative attitudes” from medics have hampered what could have been a “positive journey” for her.

Julie Hayden, from Halifax, was diagnosed a few years ago and said right from the start, her medical team seemed very negative about her outlook.

Speaking during a Neuro Rehab (NR) Times' webinar episode set up to mark World Alzheimer's Month, Julie said: “We have to start giving people positivity. That doesn’t mean giving them  unrealistic hope, because we all know that dementia can’t be cured as it’s progressive.

“It’s about showing people you can live positively with dementia and there is so much that you can be.”

Julie, who was a nurse and then moved into social work within older people’s services, has a lot of experience dealing with dementia through her work and also personally as both her parents had the condition.

Julie said that being diagnosed became so much worse for her because of how her care team treated the news.

She said: “The problem is that at diagnosis it tends to be delivered in an incredibly negative way with absolutely no hope given. You’re told the diagnosis and then told to get your end of life care in order. Most people are not actually being offered any care planning right from the beginning and we need to get that sorted because how can you have a positive journey through your care otherwise?”

Julie’s comments were discussed as part of the webinar among other dementia experts, which included Victoria Lyons, who is Clinical Lead Digital Services of Dementia at Dementia UK, Myra Manalo, Ward Manager at St Andrew’s Healthcare’s Dementia Village and Dr Inga Stewart, also from St Andrew’s who is a Consultant Clinical Psychologist.

It was during the conversation that Dr Stewart explained that she has already started addressing the care plan problem that Julie has raised.

She said: “What I’ve learnt through speaking to Julie and lots of people who are living with dementia is how poor care planning is for so many people.  The amount of people who have said to me ‘I don’t have a care plan’ I just found really shocking. Both Myra and myself work in a hospital environment and everyone there has a care plan.”

Since then, Inga has been working with Julie and others on a solution.

Dr Stewart added: “I have been working with a group of people with either learnt or living experience and we have co-produced a toolkit. The idea of it is to better help care staff to co-produce care planning.

“We need to get to a point where none of us would imagine care planning about someone without including them. People with dementia must not be ignored. They must be involved in their care and have a say in their future.”

To watch the full discussion, click here.