specialty focus
An advocate ’ s story
Life after a dementia diagnosis .
By Elise Hartevelt
Diagnosed with dementia at 55 , Phil Hazell is now a passionate advocate for spreading awareness of the disease .
Each year , over 4.6 million people worldwide are diagnosed with a form of dementia .
While Phil ’ s father also had dementia , though a different type , his diagnosis came as a complete shock to him and his wife , Jan .
“ I knew something wasn ’ t right when I had to write down the round of drinks in the pub when it was my shout ,” Phil shared .
“ It was still a hell of a surprise , particularly the way we were told .
“ The specialist just said , ‘ Well , you ’ ve got dementia . Go and get your affairs in order .”
Dementia is the second leading cause of death among Australians , and those diagnosed are expected to live up to eight years after diagnosis .
But the negative news didn ’ t stop him or his wife from trying to make the best of the situation .
They searched for a good GP who could guide them through the untrodden road , but three times heard the GP ‘ was at capacity ’.
Later , when Phil became Chair of the Dementia Australia Advisory Committee , he learned that most recently diagnosed people struggle to find a GP simply because doctors do not wish to see them . “ That made it difficult , but fortunately ,
I ’ m fairly motivated ,” he said .
He said finding support service Dementia Australia allowed him to reinvent himself through advocacy , an opportunity he
20 agedcareinsite . com . au took with both hands since his retirement 12 months after diagnosis .
He ’ s spoken on topics people living with dementia come across , such as discrimination , at prominent locations like the Sydney Opera House .
“ I ’ m basically a full-time advocate ,” Phil said .
“
I ’ m fairly motivated .
In the early months after his diagnosis , Phil fell down the stairs wearing socks on a timber floor .
The ambulance took him to the hospital , where the neurologist told him to take on a full-time carer or to move into a residential home . “ Jan and I both burst into tears ,” Phil said . “ But the doctor ’ s response was , ‘ With respect ; I don ’ t think you have any idea how difficult it is to live well with dementia ’.
“ The medical world left Jan and I feeling particularly isolated . Every corner we seemed to go around , we found that no one was listening .”
Instead , they fixed the floor using textured plastic to add more grip , and he hasn ’ t fallen since .
Over those five years , Phil found a GP , psychiatrist and physiotherapist to help him manage his day-to-day life .
He said that wanting to prevent falls and managing knee joint pain were the primary motivators to see a physiotherapist , and recommends everyone visit one regularly .
“ I now feel more confident using stairs and better at judging distance from one step to the next .
“ Because whatever ’ s happening , like if you ’ re in severe pain , it does affect your dementia , and then it makes it even worse .
“ So alleviating all that just makes it a lot safer and less stressful .”
Yet Phil faces other symptoms related to dementia that sometimes make his life more difficult .
For one , he ’ s lost the ability to drive or go boating ; activities he used to love .
“ As you can imagine , I can become quite anxious and confused ,” he said .
“ And my circle of friends certainly diminished – it ’ s not unusual for someone to lose their friends , the majority or all of them .
“ I lost most of mine , which made the whole process a lot more difficult to navigate .”
While Dementia Australia has provided him with a supportive network , his psychiatrist suggested that Phil get an assistance dog to help him during more challenging moments .
Together with his assistance dog , Sara , and his loving wife , he recently celebrated his 63rd birthday . Phil was one of the first people living with dementia in Australia to get an assistance dog and has an extraordinary relationship with her .
“ Sara is fantastic ! She helps me find things like my keys , phone , wallet and TV remote ,” he said . “ When I ’ m feeling nervous and confused , Sara seems to get this – she ’ ll nuzzle close into me , being affectionate until she sees I have calmed .
“ Then the confusion will lift , and I can think again more clearly .”
As Phil flies around the world to give awareness speeches on dementia , Sara is always close by .
She ’ s followed him on 56 cabin flights and even takes her own ticket in her mouth .
“ Through Sara ’ s presence , I find that people are more receptive to understanding the experience of dementia ,” he said . ■
Phil Hazel and his assistance dog Sara .
Picture : Supplied .