industry & reform
SOUR ENDING One unexpected side-effect first showed up in 2015 . Eileen decided to retire and gave her notice to her employer , finally revealing her dementia diagnosis to colleagues .
“ People reacted quite strangely . So , some people kind of stopped talking with her , I mean , connecting with her in some ways ,” Dubhg recalls .
“ That was quite challenging for Eileen at the time as well in terms of handling some of the stigma and the real kind of discrimination that she experienced , because suddenly people knew , well , you ’ re not the same person we knew , in fact , you are someone living with dementia .”
Eileen remembers a few colleagues asking her how they could help . She told them to treat her the same . “ But I haven ’ t heard anything from them since then ,” she says .
SOCIETAL STIGMA The stigma that a diagnosis of dementia carries is a struggle and a symptom of a wider lack of knowledge and empathy that runs throughout our society .
They recall another incident when they were asked to conduct a dementia audit of a local hospital as consumer advisors .
As they walked through the hospital issues popped out such as white toilet seats ( which people with dementia often struggle with ) and lots of other dementia un-friendly features , but it was the attitude of hospital staff which stuck out . The Taylor ’ s overheard volunteers commenting on their audit and making disparaging comments about people with dementia .
“ The myth is that everybody who gets a diagnosis of dementia is at the end stage of the disease . And that ’ s just not true ,” says Eileen .
“ That ’ s a common one that we ’ ve noticed over the years . Most times when people hear of somebody living with dementia , they always think of the end stage … when the person really kind of loses almost complete touch with reality ,” Dubhg adds .
“ You can live a fulfilled life even with a diagnosis of dementia ,” Eileen says .
ADVOCATING FOR CHANGE Life has changed for the Taylors . Dubhg is now Eileen ’ s care partner and they have had to face those new roles and the challenges they bring .
“ Oh ,” Dubhg says when I ask how life has changed , and then I hear them both chuckle . I imagine them shooting a knowing sideways glance at each other . “ There ’ s been a few changes there . I mean , it ’ s been quite an interesting journey , because when we were both working , in terms of our division of labour in the house , Eileen probably would have done the majority of the cooking .” “ And the cleaning ,” Eileen adds . “ And the cleaning ,” he agrees . “ So initially , I found myself having to do a lot more cooking , a lot more cleaning because one of the things that happened for Eileen is that , and this happens for people with dementia , they don ’ t have the same inertia that they had . So Eileen would be a lot more laid back . For example , she would not , actively pick up and proactively …”
“ There ’ s an apathy about it ,” says Eileen .
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I think there has to be a change … where there ’ s no stigma .
“ She doesn ’ t sort of proactively think , ‘ Oh , I better go and do those dishes over there ,’ or ‘ Gee , I need to put things away ,’ or ‘ I need to make the bed ,’ or whatever . She doesn ’ t do that . So largely that kind of falls onto me ,” Dubhg says .
For Eileen , the difficult times come with the “ fog ” as she describes it . The days when the brain fog descends , when she can ’ t quite put things together and she becomes very inactive . She tries not to dwell on it , but she says it ’ s a constant fight “ because the brain fog could take over at any time and I don ’ t want it to ”.
Dubhg has his struggles too . Life as a carer and watching dementia impact your loved one is tough , although he tries to “ grin and bear it ”. They both have a stoic determination about them .
One way the Taylors fight that fog , tackle that stigma , is by advocating and educating . There are an estimated 459,000 Australians living with dementia , most of whom do not have a voice , so for Eileen and Dubhg speaking out on the issues and telling their story is important .
Eileen has been a member of the Dementia Australia Advisory Committee since 2013 and is one of the founding members . Dubhg helped develop the first dementia support organisation in Brisbane , is one of the co-founders of the Dementia Awareness Advocacy Team ( DAAT ) and is actively involved with their “ Remember Me ” Dementia Support Group . Plus , they both speak at conferences regularly .
“ One of the things that was a major inspiration for Eileen was when she discovered the DAI ( Dementia Alliance International ). Suddenly she was with other people who were in the same condition that she was , and she was accepted and she was included . Feeling excluded is a big issue for people living with dementia ,” Dubhg says .
“ In our social work background , we come from a position of social righteousness or social rights , human rights issues as well . So , we kind of realised that with dementia , there is a human rights issue there . And in many ways , dementia rights are human rights , so you can ’ t get away from it . So that ’ s probably one of the motivators that ’ s driven us over time .”
“ For me , I think there has to be a change . There has to be a change in the world where there ’ s no stigma . I mean , for me there ’ s just hope that there will be a change that people are more accepting of people living with a dementia diagnosis ,” Eileen adds .
Our conversation followed a pattern , Dubhg might start to answer my question and Eileen will come in , putting a fine , eloquent point on the idea – confounding my expectations of what a conversation with a person with dementia is like .
As for the future , Dubhg has taken up drumming again , something he can do on his own as Eileen is not a big fan of his chosen instrument , she admits . It ’ s a release for him once a week and pre- COVID was a social outlet for the more outgoing of the pair .
We finish our conversation the way we started , Eileen and Dubhg , together , telling me something I didn ’ t know , this time urging me to check out the latest dementia research they ’ d heard about .
They are hopeful about the future and are looking to continue their fight against dementia discrimination .
“ All mine is hope . Hope there ’ s change , hope there ’ s a cure . I don ’ t dwell on the final stage , it ’ s too hard to think about . And most probably I won ’ t know what it ’ s about when I ’ m at that stage ,” Eileen tells me . ■
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