04/10/2022
'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.'
Julie Hayden was diagnosed with young-onset dementia in May 2017. Before her diagnosis, she worked as a nurse and a social worker; however, Julie's career didn't prepare her for living with dementia. She talks to us about how she learned the flaws in our 'fractured' dementia care system.
'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.
'My diagnosis was delivered in a cold, clinical manner by a consultant neurologist, and no ongoing support or information was offered. My career 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.
'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.'
However, Julie says, 'there was nothing available in my area for people with young-onset dementia'. Therefore, she had to start her own peer support group to meet others facing similar challenges.
'Dementia care is only accessible in a fractured way in this country. In most areas, provision is tidied away under the auspices of Older People's Services, even though 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.'
Last year, Julie joined us at the Conservative Party Conference. She spoke to several MPs about her experiences, which she says 'was reassuring, but we really need to see action.'
'We need to make our voices heard by the new Government. They need to hear just how important it is to be able to access the right support afterwards.
'Words are no longer enough. We now require action as a matter of urgency.'
Read her story here: https://bit.ly/3jk7ddA.
