Originally posted on Global Dementia Voices on October 20, 2012. Keith and his wife are visiting Adelaide soon for a few weeks, so I’m looking forward to catching up again. He is a strong advocate for dementia in the UK, doing great work speaking up for improving services, policies and increasing awareness of dementia to overcome the stigmas, discrimination and general misperception in the community about people with dementia. He has found a new role in life after being diagnosed with Alzheimer’s at the age of 56. A retired headteacher, he now is a Dementia Service User Envoy for Kent and Medway Partnership NHS Trust. Congratulations Keith.

“I am fortunate to have lived in, or close to historic Canterbury for the past 32 years, a place which I feel comfortable and familiar in. This is important to me. I am married with three grown up children and three grand children aged from 5 to 16, all of whom are a source of great joy and pride to me. Until 2011 I was a primary school headteacher of a large school in Canterbury, and was seconded by the Education Department for two years from 2008 -10 to serve as Canterbury’s primary school advisor. I loved my job, working with the children was a daily delight and serving the parents and the school community was a source of great satisfaction. So why did my career end?

In March 2010 I visited my GP because I was feeling extra tired, I’d had a series of falls and was coming out of a period of various infections and auto immune disorders, all of which I’d managed whilst not taking time off work other than attending hospital appointments. I’d started to learn to screen and manage symptoms, something which would prove useful later. The GP ruled out the ear infection I thought I had, he gave me some tests of balance and sent me for an MRI scan and referred me to a neurologist. Later I discovered he wanted to rule out a brain tumour! The neurologist looked at the scans and asked my wife and I a series of questions and then out of the blue announced that he felt everything was pointing to early onset Alzheimer’s Disease. What a shock, as it wasn’t on our radar, or indeed that of our GP. My understanding of Alzheimer’s was typical of the stereotype image so many people hold, surely no-one in their mid 50s could have this insidious disease. The neurologist referred me to a Memory Clinic locally where after 5 or 6 appointments over a 3 ½ month period the suggested diagnosis was confirmed. Although I had been able to continue managing and leading the school through the early stages by taking 3 or 4 senior colleagues into my confidence by the time the Memory Clinic appointments were happening I was off sick and coming to terms positively with what was taking place both to me and within me.

Having got the diagnosis (confirmed on New Years Eve 2010 at the Memory Clinic – no celebrating that night!) I began 2011 by trying to read as much as possible and to establish contacts with professionals I’d met through the clinic who were happy to talk with me and to engage me as a service user to support their work in the area. Christine Bryden’s book “Dancing with Dementia” was of great support to me at this time. I began to consider how I could utilise some of the skills which I’d developed over many years as a teacher and head, to help raise public awareness around Young Onset Dementia and to help support others in the same situation. I began to give talks to Health managers, the press, students on health courses at the local universities, staff at libraries and museums who were keen to help engage better with people with dementia. Through a local clinical psychologist and a university student on placement with the NHS we constructed a project which measured the impact on me of approximately 50 activities over the year immediately after diagnosis. Some were dementia related others were not (e.g. holidays, club meetings etc). At the end of the year we examined the findings and wrote some recommendations for both serviced users and to clinicians which we then presented as a poster at the Alzheimer’s Disease International conference in London in March 2012. I found this very satisfying. In May 2012 the local NHS Partnership Trust in Kent asked me to take on a voluntary role of “Dementia Service User Envoy” – the title was harder to arrive at than the job description! The Trust have been very supportive and encouraging and have allowed me to voice the concerns and aspirations of someone with dementia at the highest possible levels within Kent. They have used my skills to serve on interview panels for staff who will serve people with dementia, they’ve asked my views on publications and initiatives and it’s given me a unique position  in England when engaging in activities with the Alzheimer’s Society and DementiaUK. I am able to voice my thoughts and concerns without cause to be concerned about the corporate position but my experience prevents me from falling into the trap of “being a loose cannon”.

I began this piece by writing about my family, and that’s where I’ll close. I love travel and am lucky enough to have taught in Adelaide for a year in 1989. We made heaps of friends and have come to see this great city as our second home, revisiting it 15 times over the past 20 years, and we can’t wait until our next visit in February – March 2013.

Thank you for allowing me to share my story with you.

Keith”

Note: Copyright © Keith Oliver 2012, printed with permission.