How supportive are you of someone with Alzheimer’s disease?

Sabrina Almeida

January is Alzheimer’s Awareness month in Canada, a time dedicated to learning more about dementia and its impact on affected individuals, their families and caregivers, and society as a whole. While many know of the condition only those in close contact with an impacted individual may be aware of what it means to live with Alzheimer’s or any other form of dementia.

In my personal experience with a dear aunt who’s been diagnosed with “Alzheimer’s disease and dementia”, a lack of awareness diminishes what she is going through. Those living with her are unable to process the frequent transitions from moments of lucidness to confusion and aggressive behaviour. She’s seen as being stubborn, vile and ungrateful. I tried to explain it’s her condition that is causing her to be “foul-mouthed” and “difficult”, but was unable to convince them.

Ignorance is the problem here! And it underscores the critical need for public education. As the Alzheimer’s Society of Canada rightly says “we need to take dementia out of the shadows” in order to better support those who are impacted by it – the individual as well as their caregivers.

I thought I knew the condition but hearing my aunt’s diagnosis threw me completely. I wasn’t aware that an individual could have both Alzheimer’s and dementia. My understanding was that dementia is the general term and Alzheimer’s is a form of it. So how could she have both?

The neurologist explained that Alzheimer’s, a degenerative brain disease, is the most common form of dementia… and that once a person is diagnosed with Alzheimer’s, they have dementia too. While this made sense, seeing both conditions being documented in her medical file was depressing, even ominous.  The consultation was scheduled with the hope that an increased dosage of her Parkinson’s medication could improve her mobility. A conversation with a friend whose mother benefitted from the increased medication had led me in that direction. But here I was faced with the realization that my aunt’s physical and mental condition could only be “managed” not “improved”. This was difficult news to give her caregivers who were already mentally stretched. How was I going to tell them to buckle up and prepare for it to deteriorate further?

Talking to friends about my aunt’s diagnosis revealed that at least three of them had a parent with Alzheimer’s who had since passed away. One admitted that a lack of awareness of the condition and symptoms caused her to be impatient and insensitive towards her mother. Another shared that while Alzheimer’s made his father physically abusive, a lack of awareness and resources forced his mother to silently bear the brunt of it. We all acknowledged that the lack of awareness of dementia among medics, government and the general public at the time of their diagnosis, over a decade ago, made the condition so much more difficult to handle.

Are we better equipped now? Yes, for sure! Still, there’s a huge gap between diagnosis, awareness and support. Moreover, the future outlook on dementia suggests we should ramp up quickly.

The Alzheimer's Society says more than 15 people in Canada are diagnosed with dementia every hour and that more than half a million are currently living with it. This number is expected to triple by 2050 to 1.7 million with an average of 685 Canadians being diagnosed each day, according to a study by the Society. All this translates into an estimated 6.3 million Canadians diagnosed, living with and eventually dying of dementia over the next 30 years. The impact on the country’s health-care system will be huge, so we’d better be prepared.

Awareness not only brings greater support and compassion but also knowledge of lifestyle changes that can help avoid or delay the onset of dementia and Alzheimer’s disease.  

The Alzheimer’s Society is a great resource for learning about age-related memory changes and when it is serious enough to disrupt life, the symptoms and causes of dementia as well as risk factors.  Awareness and early intervention can lessen anxiety for and around the impacted individual as well as help optimize resources, treatments and quality of life. The time to start is now!

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