“Thank goodness you said I have dementia and not Alzeheimer’s.” These were words I heard on a Hammondcare’s Dementia podcast when Prof Cunningham was relaying a story.
Having been on a dementia journey with my family and Dad, I am rather familiar with this misconception about dementia. It’s why we need to have many, many, many conversations about it. To broaden understanding about what dementia is and how it can infiltrate and influence so many aspects of our lives. We’ve had those conversations about cancer. We believe it soon will be overtaken by conversations about dementia.
There are somewhere between 120 and 400 forms of dementia (depending on the source you read) caused by different diseases that affect the brain.
Blown away by that statistic? Erica and I were.
There are so many because of the large number of derivations within each major sub-type of dementia. (If you are a dementia expert and can enlighten us on how this statistic comes to be and indeed if it’s accurate, please do comment and let us know).
“Dementia is not a single disease, but rather an umbrella term for a group of progressive illnesses that cause a decline in brain function, leading to symptoms like memory loss, confusion, difficulty with thinking and problem-solving, and changes in mood and behavior. It is more than what is expected from normal aging, with Alzheimer’s disease being the most common cause. Symptoms are diverse and can include trouble with daily tasks, speaking, writing, and spatial abilities.” (Alzeheimers.gov).
According to Dementiastatistics. There are 10–15 recognised major forms of dementia and many additional rare subtypes and variants, but most cases fall under four–five main diagnostic categories. Alzeheimer’s is the most common form of dementia and gets the most airtime (which would contribute to the misconception) but there are other forms like Frontotemporal Dementia - the form Erica’s Mum and my Dad had.
Dementia is terminal.
Dementia is currently the #1 cause of death for Australian women and #2 for Australian men (cardiovascular disease is #1) according to the Australian Institute of Health and Welfare.
The reason why it causes so many deaths is because dementia impacts the function of our brain and with that, other functions of the body like swallowing, breathing, and circulation, increasing susceptibility to fatal infections.
Dementia is terminal. Yet it currently is excluded from VAD (voluntary assisted dying). If you’ve witnessed someone you love die from dementia would you support having it included? I know I would. It’s a discussion I’d certainly welcome on the podcast.
Dementia Awareness (month).
September has been dementia awareness month internationally, aiming to bring increased awareness, educate, support and reduce the stigma associated with dementia.
When I shared with others that my Dad has/had Frontotemporal Dementia (FTD), understandably there were confused and blank looks. But when I said it’s the type like Bruce Willis has, then the clouds started to part - “Oh…”. The far reaching power of a public figure.
I love the brave and compassionate work of his incredible wife Emma Hemming-Willis who brings vital awareness of FTD and dementia and equally important (if not more) the impact it has on Carer’s and those who love someone with dementia.
I’ve recently purchased her book The Unexpected Journey. It’s essential reading to broaden understanding and the impacts of dementia. The other book I found very helpful was Loving Someone Who Has Dementia by Pauline Boss. She founded the term Ambiguous Loss, something both Erica and I have felt deeply as we’ve grieved our parents on our dementia journeys. Understanding ambiguous loss certainly helped us to understand and accept the emotions we were experiencing.
Our Dementia Stories
In this podcast chat, Erica and I share a bit about our dementia stories. Erica’s Mum and my Dad both had FTD, though different variants. We talk about how that presented itself, the impacts it had on us and what we’re doing to raise awareness and lighten the burden of those who are on their dementia journey.
Do You Have a Dementia Story To Share?
As a way to help spread awareness, understanding and empathy for those who have, care for and love someone who has dementia, we are wanting to create a dementia series on the podcast where personal stories are shared.
If you would like to share your personal experience with dementia or know of someone who might, then please reach out to us at Hello@Midlifeunfiltered.com.au with the email subject ‘Dementia Series’ (so we can find it more easily) and we’ll be in touch.
To share personal stories, personal experiences is so very powerful. It helps others appreciate they are not alone, and it helps those of us who have been on that journey to deepen our self-compassion too. The more we talk about dementia more openly the better we will all be to understand, destigmatise and ‘normalise’ what will one day be something each and every one of us will be touched by.
Equally well, if you are someone whose profession is to help those with dementia and those who care for them, we’d love to hear from you too. In our series we’d like to talk about:
* what dementia is and how to receive a diagnosis
* navigating the health system - to get the medical and overall health and wellness support for those with dementia and those who care for them
* how to personally fund and pay for the care that may be required
* understanding the legal documents to have in place to manage the consequences of living with dementia
* preparing for death from dementia
Thank you for all your support. We really do appreciate you. Join us for our next live video in the app! If you subscribe, you’ll be sent an email when we go live so you can listen and comment as we chat. Erica and I would love that :)
Until then.
Anita xx
