Before she was diagnosed with young-onset dementia, Julie Hayden worked as both a nurse and a social worker. Julie's career didn't prepare her for her own diagnosis, but she explains how she learned the flaws in our 'fractured' dementia care system.
My name is Julie Hayden and I’m from Halifax in West Yorkshire. In May 2017, I was diagnosed with young-onset dementia.
My careers, both as a nurse and a social worker, gave me some grounding in dementia care, but a true appreciation of what dementia actually means only happened following my own diagnosis, when I realised the complexity and range of challenges that dementia presents.
l originally trained as a nurse, and after having my children I returned to full time education to qualify as a social worker.
I worked with older people in the community. It was my job to assess people's needs and arrange appropriate care and support packages for those people and their families, right through to placement in long-term care.
But neither of these jobs taught me enough to breakdown the stigma that dementia was simply an older person's disease just involving memory. What I do know from my career is the care system, inside out.
My dementia diagnosis
My own diagnosis came after five years of life-impacting symptoms, which had begun in my late 40s. This resulted in me losing my beloved career.
‘No one expects dementia to hit them, and especially not at that age.’
A large number of my family had lived with dementia, and I had lost both my parents to it. But I have the dubious honour of being the first in my clan to be affected in the younger age group.
My diagnosis was delivered in a cold, clinical manner by a consultant neurologist, and no ongoing support or information was offered.
Fortunately, I knew where to go as I had always signposted those I worked with and their families towards Alzheimer's Society. It was such a relief to sit down with a dementia advisor over a coffee and have a chat. I live alone, so this option proved to be a real lifesaver.
Lack of support from social care
As there was nothing available in my area for people with young-onset dementia, I began my own peer support group. This gave me the chance to meet with others facing similar challenges at the same stage of life.
I joined networks of other people living with dementia to share my voice across the UK, as well as globally, with Dementia Alliance International.
I have received no support from the social care system. Currently, unless you have reached the point of being unable to wash, dress and feed yourself it is not deemed that you are in need of assistance. In fact, successive governments have relied on the ability and commitment of unpaid family carers to meet this need.
‘Many are not in the fortunate position to seek this care. For loved ones, the pressure placed on their own health and wellbeing is deeply unfair.’
Although I am struggling, the only help I need would be a couple of hours a week to extend my ability to remain independent for a much longer length of time. This is denied to me, despite the fact this level of support is an acknowledged right to me in law.
A path forward for dementia care
Dementia care is only accessible in a fractured way in this country, where responsibility lays across several professional teams, which don’t have the resource to communicate adequately.
In most areas, provision is tidied away under the auspices of Older People's Services, even though most older people do not live with dementia, and not all of those who have dementia are elderly. It is a real postcode lottery as to if you are able to access good quality dementia care.
This is not good enough and will never change until we develop a National Dementia Care Pathway, supporting people in a truly person-centred way from diagnosis through to end of life care.
Getting involved in Alzheimer’s Society campaigning
Last year I joined the Alzheimer’s Society team at the Conservative Party Conference in Manchester. The experience was both challenging and rewarding. The number of MPs and senior members of government who visited the stand to speak with me about my experiences was reassuring, but we really need to see action.
Party Conferences are such a powerful opportunity to talk to MPs about what needs to change to ensure people living with dementia can get a timely and accurate diagnosis.
But what’s more, they need to hear just how important it is to be able to access the right support afterwards.
We need to make our voices heard by the new Government, and Party Conferences are an opportunity we cannot miss.
Words are no longer enough. We now require action as a matter of urgency.
Ask your MP to visit us at Party Conferences
As the first step to living well with dementia, everyone should be able to access a timely, accurate and quality diagnosis.
Invite your MP to visit our party conference stand – and help us put people affected by dementia back in the driving seat
This article was first published in October 2021 and most recently updated in September 2022.