Nov 22, 2017

“Dementia is the only illness I know where people are told to go home and prepare to die via aged care rather than fight for their lives.”

There are more than 50 million people living with dementia around the world – and approximately 1 new diagnosis every 3.2 seconds.

In Australia alone, there one more than 413, 000 people diagnosed with dementia.

One notable person, is Kate Swaffer, the CEO and co-founder of Dementia Alliance International.

Kate spoke at ITAC 2017 about her thoughts and experiences with technology and dementia care.

At 49, Kate was diagnosed with dementia – which has no cure and no disease-modifying medication.

Through her presentation, she spoke about the different definitions of dementia.

From the Mayo Clinic: “Dementia is a syndrome in which there is a deterioration in memory, thinking, behaviour and the ability to perform everyday skills”

John Sandblom, who has dementia himself, said that “we are just changing in ways the rest of you aren’t, we have increasing disabilities and the sooner it is looked at that way, the better for all of us living with dementia. We desperately need other to enable us, not further disable us!”

This is a sentiment that Kate agrees with greatly.

Dr Al Power says that “dementia is a shift in the way a person experiences the world around her/him”

Kate says that when she first diagnoses, she was “prescribed disengagement”.

“Go home, get your end of life affairs in order, and get acquainted with aged care”

“Dementia is the only illness I know where people are told to go home and prepare to die via aged care rather than fight for their lives.”

The cost of prescribed disengagement for people with dementia range from hopelessness, no sense of being able to live well, no sense of a future – “it further disables and disempowers us”.

“It’s more than a travesty people mostly focus on the deficits,” explains Kate, who said that the “loss of family and friends” was a reality that everyone with dementia has inevitably faced.

Advancements in Dementia Perception and Technology

One of the struggles with advocating with dementia, was how it was perceived – sometimes as a mental illness, and other times as as learning disabilities. “The symptoms of dementia must be seen and supported as cognitive disAbilities”

In fact, the WHO now officially recognises people with dementia and autism under the umbrella of cognitive disAbilities.  

But in terms of technology, there is far to go. Kate says that in creating technology for people with dementia, they need to be involved in the process.

“How many consumers – people with dementia or older people – have you included in the development of your products and programs?”

There is also the issue of ethics and human rights of monitoring people.

Kate sees why there are some people may have issues with tracking devices – though she admits that tracking devices are used by herself and her husband in case of emergencies.

In some cases there has been a “medicalisation” of monitoring to make it more acceptable and to avoid the ethical issues – Kate says that that needs to stop

Dementia, Kate says, is one of the greatest gifts in her life. “It taught me what stigma and discrimination feels like, that sense of ‘otherness’”

“Ironically, it has also given me a clarity about life that I’d not previously had”.

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  1. The traditional approach to dementia is still way too prevalent in the aged care sector and the medical community. It’s a sad reflection on the resistance to change and lack of creativity that is stifling too many organisations and individuals. At Omnicare, our team have been working with a Montessori approach to dementia care that is proving highly effective in creating a much improved quality of life for those living with dementia and their carers. The model is being researched by a team from Southern Cross University. While it’s not a cure, some of the outcomes have been nothing short of astounding. It’s time all care providers started looking outside their current boxed thinking.

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