‘As a nurse and social worker I learned the care system inside out. Now I'm calling for urgent change’

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

Looking back at my career, you would think I would be an expert in dementia. 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 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.

Julie as a young nurse and on her graduation day

Julie as a young nurse and later qualifying as a social worker from Brunel University 

My dementia diagnosis

My own diagnosis came after 5 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 the 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 and campaign for change across the nations, as well as on a global platform 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.

Julie at the conservative party conference holding a sign that says 'Cure the care system'

Julie spoke to MPs at our stand at the Conservative party conference

‘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.

Our dementia advisers are here for you.

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 

Joining the Alzheimer’s Society team at the Conservative Party Conference 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 and the #CureTheCareSystem campaign was reassuring, but we really need to see action. People affected by dementia must be able to access a social care system that they can rely on. 

Words are no longer enough. We now require action as a matter of urgency.

People affected by dementia can't wait

On the 27 October, in the Comprehensive Spending Review, the Chancellor has an opportunity to put people affected by dementia first. Help us reach him by emailing your MP today.

Email my MP
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11 comments

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Don't get me started about Adult Social Care in this Country. My father died ten years ago from vascular dementia, thankfully his final decline was only the last 6 months of his life. However, this is not the case of my 96 year old mother who is in the later stages of vascular dementia and is still at home. I have had an amazing team of carers who have been with her for around 5 years. As ever finances prevent us from keeping this situation so we have moved to a live-in carer alongside a night carer. The nights are particularly bad and getting worse. We are on week two of a Lithuanian Carer and it is certainly having its teething problems. Not least because there are big shoes to fill. We have exhausted all of my parents savings and more, next is equity release from the property.
We have spent in excess of £150,000. My father felt passionately about the state of Dementia Care in this country and I am desperately trying to do my best to keep her at home for as long as possible. I have contacted my mother's MP, who has an American Parliamentary Assistant who decided to give me the benefit of her advice as it is in the US and that the MP agrees with having to sell property to fund care! So no help there. Needless to say the call didn't end well. It is a national disgrace and Boris Johnson needs to address it NOW, after all he was happy to do a photocall with the late great Dame Barbara Windsor and promise reform.

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Please can somebody help me with where to start? My mum was finally diagnosed in April 2019 after at least 18 months of me telling the GP something wasn't right. Since then, 2 1/2 years on I have had no help whatsoever. Mum is now declining rapidly, and is becoming too much for me to manage on my own with a full time job I am not willing to give up. How do I go about an initial assessment?

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Hi Sandra, thanks for getting in touch.

We're sorry to hear about the lack of support you or your mum received following her diagnosis. We would strongly recommend speaking with one of our dementia advisers through our support line. They will be best placed to listen to your situation and provide you with advice and information.

Call our Dementia Connect support line on 0333 150 3456. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

You may also benefit from speaking with other people affected by dementia. We have an online community called Talking Point where carers and other people affected by dementia can share their experiences and receive peer support. This could be a great place to receive helpful suggestions from other people who may have been in similar situations: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

We hope this is helpful, Sandra.

Alzheimer's Society blog team

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I have read all these comments with such a heavy heart. I have worked as a community carer and a residential carer for the last 3- 4 years. As one lady said some carers are employed right off the street with no experience and a bad attitude. I was shocked at the minimal time allotted to each client before the next one. I went to one lady who had severe Alzheimer's Disease and at that time had received no dementia training. I just didn't understand what was going on and she couldn't tell me as she had lost her speech and also (at that time) I did not understand the thing with mirrors. It was to me - absolutely mind blowing. I was also incredulous that this was a minimum wage job! I have worked in a variety of fields before and received much better pay and benefits. At the moment I am taking a break from the care industry and working in retail - the pay and benefits are better than working in care and this is why some care homes are going to close. These care homes often want you to work very long shifts with minimum support and poor wages. It is also a massive responsibility! When will the government wake up!

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Hello Julie, I read your story with a degree of sadness, please accept my heartfelt sympathy. I really do feel for you because with your background and experience, you already know where your future will take you and in a way that is tougher for you than for others without your knowledge.

I am 86 and for some years cared for my smiley Lady Betty 83, Betty was diagnosed in 2004 with Alzheimer's, but with her medication, we kept going until my Heart attack in Sept 2019. I had been giving Betty full care at home for 4 or 5 years and managing fine.

Long story short, she was later passed into the care home system which broke my heart. I went to see her every single day for about 4 hours to do some caring and be with her. I think some of the carers took me for a resident. However, it did give me an insight into care home activities.

Where am I going? Having read Jacqui's report above, I would agree; a) with you that dementia is just grouped in with the elderly as elderly, and b) with Jacqui that dementia care is deplorable.

I never had home support to help me, we managed OK, so my comments refer to some care home staff with heatless cruel attitudes who treat the elderly like naughty children. Some of these carers are employed straight off the street with bad attitudes, no nursing or caring experience or even acceptable attitudes. I worried a lot leaving her in that environment, but I wasn't allowed to take her out. Now at least half the carers were good natured lovely happy ladies who treated the residents with kindness and respect. The worry was not knowing what the night staff were like.

Oh dear, I could write a book, but this is not the place to rabbit on with my story. I do have a large amount of correspondence, letters and emails, between myself and higher places, but what I wanted to say was, in the early days with Betty, I made some enquiries 'What do I do" and I received shed loads of printed advice which overwhelmed me. It came from many different places (don't ask) containing similar information which overlapped each other, and far too much for me to read. If there had been just one booklet containing the important stuff, summarized and properly filed, that would be useful.

I'll cut out now Julie and get something off to my MP. Oh, but Betty is still in the care home and now doesn't know who anybody is, or who even who she is or where she is. of course the lockdown means I haven't seen her for, what, 20 months although son David goes occasionally.
You too are in my thoughts now Julie.

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Totally agree, i am one of those people who doesn't know who to ask regarding care! My husband isnt too bad yet but that day wont be that far away, and it worries me to death!!

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A wife of a friend has recently been diagnosed and is very pleased with the care being provided through our local GP practice.

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Dementia care in care homes also needs addressing. There has to be much more robust training of staff who need to understand fully what people living with dementia go through. My 91 year old mother has basically been ‘evicted’ from her current Bupa care home after only 8 weeks due to her apparent ‘ violent’ behaviour, which is managed perfectly well by some members of staff but not others! The whole situation has been handled appallingly by the care home. I am in total despair.

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Hello Lesley,

We're really sorry to hear about your mother, this must be a very difficult time for you.

Please know that you can always call our Dementia Connect support line on 0333 150 3456 for information, advice and support from one of our trained dementia advisers. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps, Lesley.

Alzheimer's Society blog team

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I have a daughter who was diagnosed with early onset Alzheimers aged 49.As a family we applied for Continuous Health Care for assistance which she eventually received .My daughter has never married and being single and living alone it fell to myself and her 2 sisters to undertake her care until CHC was given when she became violent and had to be placed into a care home.Recently reviewed this payment is to be stopped but my understanding is that Alzheimers is a disease and her care cover should be continued .My daughter will be 56 next week.Her 2 sisters are both working and without their assistance I would not have been able to cope as long as we did.Her younger sister is an insulin dependant diabetic and registered partially sighted and no longer driving. Born in1939 I have 2 new knees and spinal stenosis so we are grateful for all the help we can get.Our family would very much like to see a clearer and fairer picture of the help available.,as it is our understanding that we would be breaking the law if social services were to give my daughter any funding.

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Until the funding is in one place then the system will remain broken. Care is funded by so many different departments local authorities primary care and nhs all trying their best not to pick the bill up so families are left with poor care or none!
Care at home can be very poor (speaking from experience) having had local authority carers that were always in a rush, we had cameras fitted and the footage is alarming even with the carers aware they were being filmed. When they wanted to not be seen/filmed they would intentionally block the view of the camera, the sound was still on as they could block that.

The support for dementia care is deplorable in England and needs to change.

Almost forgot unles you know how the system currently works most families have no idea where or what they are entitled to or how to access it, plus what choices are available. This services needs to be more transparent and easier to access.

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