I’m away this week, staying with my first nursing girlfriend and one of my best friends, Jacinta Lynch from Poochera. A few months ago, she dobbed me into present at a Partners IN Grain (PING) Women’s Health and Well-being Day at Minnipa, another country town not too far from Poochera.
I flew into Port lIncoln and spent a lovely morning with my aunty who is about 85, where we laughed and cried, looked at her garden and then I showed her some of my crazy cat photos and YouTube clips. She is a cat lover like me, so it is a shared passion.
Then my girlfriend picked me up and we came up to Poochera to her farm, where the open spaces and mallee made me really miss living on a farm! Such is life, of course, as my life is in the city with my husband and sons… but the peace and soothing influence being here has had on me is spectacular. It has also been more than wonderful to spend time together, as this photo indicates! For a change, our extra chins are not too noticeable!
The forum had me presenting about living with dementia and also about being an advocate, and the other speakers included topics such as Mindfulness, the new Medicare Locals services and a general practitioner speaking about women’s health for the over 50’s. It was informative and very useful for us all, if not a little scary for the few attending under 50!
This is a snippet of my presentation for those of you who have not been reading my blog since I started it, or have not heard me present before:
Defining dementia: ‘Dementia affects thinking, behaviour and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person’s normal social or working life.’ It can be seen as the gradual deterioration of functioning, such as thinking, concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities.‘Memory loss generally occurs in dementia, but memory loss alone doesn’t mean you have dementia. Dementia indicates problems with at least two brain functions, such as memory loss, impaired judgment or language, thinking, behaviour and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person’s normal social or working life. (Mayo Clinic, 2014)’
The Dementia Epidemic: The incidence of dementia worldwide is growing and Alzheimer’s Disease International (ADI, 2013) reported “there are 7.7 million new cases of dementia each year, implying that there is a new case of dementia somewhere in the world every four seconds.” Of course, this means it is also increasing in Australia, and currently there are over 332,000 people diagnosed with dementia, with an estimated 1700 new diagnoses per week (Alzheimer’s Australia 2014). As the incidence of dementia rises globally, the rate and scale has forced governments to make it a health priority. It is obvious from this slide we are facing a global crisis and our health system is not set up to care for such large numbers of people with dementia. It is barely coping now.
Therefore it is important to find ways to help us stay as well as possible, for a long as possible, to increase our sense of well-being, and to reduce the cost to our health system as well as the individuals who are diagnosed with it.
The changes brought on by dementia are relentless, yet most people don’t see them as disabilities just as external symptoms. Many also think it is a mental illness, which it is not. The word Dementia is taken from Latin, originally meaning “madness”; no wonder we struggle against the myths!
And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, absconders or refusing to communicate, rather than the people we still are…mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties. It is a tragedy that so many just see our deficits.
Why speak out? My willingness to speak out is fuelled by the fact that much of our care feels symptom based, and there there is a very thin veil between people with dementia being treated with dignity as opposed to being treated like morons. I believe nothing will change until we recognise it is imperative we all understand the human cost of dementia.
The other reason for speaking out is the only way you can understand me is to walk in my shoes; if I don’t invite you into my world, then how can I reasonably expect you to know what it is like? Since being diagnosed with dementia, I have been told I can’t possibly have it because I can speak, or that I must be lying about the diagnosis for notoriety; I’ve been told no matter what I do, “it will get me in the end”, and have even been told, but you sound and look so intelligent! I hope by speaking out I can break down some of the stereotypes and stigma about a diagnosis of dementia.
This is also a reason why many people may doubt those of us speaking out may not have dementia. It seems incredulous to me that we constantly need to justify the diagnosis of dementia, and that living with it well is not seen as more positive.
If I had sustained a brain injury through a car accident or a stroke, and was doing really well with rehabilitation, my success would be applauded and explored, rather than the extent of my injury questioned. And, if my success was significantly greater than others with a similar brain injury, I’m pretty sure others would want to know what I was doing differently to bring about a more positive result.
I also speak out because there is also a gross under representation of people with dementia deciding our care and futures. Globally we now have four groups exclusive to people with dementia, and our slogan is, nothing about us without us.