The following is a story written by one of our new members who lives in the UK, and was diagnosed with younger onset dementia just over two years ago.
“I was diagnosed on 31st July 2014. I thought there would be support available from the very start. After all, this was momentous news, so surely services would be geared up for such situations and would kick in immediately to support and advise me?
How wrong I was.
At hospital, I was in the care of 2 wonderful doctors (a specialist registrar in neurology and a clinical psychologist) and my GP has always been very supportive. After diagnosis I was quite rightly discharged from the hospital and referred to the memory clinic – the perfect place to be referred, I was told. However, due to unforeseen circumstances the allotted Occupational Therapist had to cancel and already stretched resources meant no one was available to cover her cases. I finally saw someone on 7th October – doesn’t sound a long time to wait in the grand scheme of things in the NHS but for me it seemed like forever.
In the meantime, I turned to occupational health at work – after all I work in a hospital, surely they could advise me how best to cope at work if nothing else.
Again, I had to wait 4 weeks for an appointment………….. Once I got to the appointment, it turned out that although it may be a good place for patients, it had no knowledge or experience of supporting employees.
Each person I’ve met eventually has been very nice and sympathetic yet openly admitted they are not geared up to support ‘young’ people with Alzheimer’s. That first month post diagnosis is so important. It’s the time you need advice and support yet it wasn’t there.
Every which way I turned I seemed to hit a locked door and remember feeling abandoned and let down by the NHS. I’ve since found out, through reading and talking to others, that this is very common. Services are geared towards older people at a more advanced stage of dementia. Something will need to change. In the future I can see that more people will be diagnosed earlier so services need to develop news ways of support as the numbers diagnosed yet still in work can only increase.
I’ve just finished reviewing a draft ’employer dementia awareness toolkit’ on behalf of the Alzheimers society – Notts Fit For Work are a voluntary sector organisation and have been commissioned by the Department of Health/Public Health England and NHS England to develop an Employer Dementia Awareness Toolkit.
Alzheimer’s Society has been asked to review this for them to guide its development. So the need to raise awareness among employers has been identified.
Fortunately, I’m very independent and resourceful. I trawled the web for information, but only had to look in one place for everything I needed initially at the Alzheimer’s Society UK.
I was overwhelmed and felt totally relieved by the amount of information I found available on one website.
I was also lucky to find some research being carried out by the University of the West of Scotland – ‘Dementia in the Workplace’. I’m now working with Dr Louise Ritchie and she and the rest of the talented team there are looking not only at the challenges faced by those of us continuing to work with dementia but also the perspectives of work colleagues and the challenges they face.
It’s only through research such as this that changes will take place so I feel honoured to be a part of this project.
I am now a Research Network volunteer with the Alzheimers society. This has opened up yet another new world in which I’m able to read and comment on funding proposals from the point of view of someone with dementia. It will enable me to support and give meaningful purpose and encouragement to researchers when they may be at a difficult time with their research
I then felt the need to document my experiences before they were forgotten. I talked to my daughter about the idea of an electronic journal of some sort. Her reaction was ‘why don’t you start a blog?’. I’ve never ‘tweeted’ facebooked’ or blogged’ in my life. I don’t have a smart phone – I still have an ancient ‘brick’, so this was a whole new language for me to learn.
We went home, sat down on her laptop and before I knew it we had created my blog Which Me Am I Today I had thought that no-one would read it apart from family and close friends, which was fine. The main aim was to provide me with an outlet to express my frustrations, joys and experiences of living day to day with dementia. It has certainly done that. However, I’ve been overwhelmed at the power of the internet.
I’ve only been writing for 2 weeks but my blog has been read in 10 countries so far – I only know people in 2!! I’ve had such kind comments and support from people I don’t know. It’s been a wonderful channel through which to raise awareness of the trials and tribulations of living with dementia.
It’s given me a platform to make people aware of the lack of support and services for those with dementia. It has enabled me to meet such wonderful and inspiring people who also have dementia or who are working with us to make society a more dementia friendly place to be.
I feel blessed that I found this platform now when I most need it.”
Author: Wendy © 2014
Editor: Kate Swaffer
Copyright: Dementia Alliance International