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  • Amanda Schmukler MSW,RSW

Alzheimer's Awareness Month

January is Alzheimer’s Awareness Month. A cause that will always be close to my heart. I have spent over two decades working with those who have received a diagnosis of dementia and their family carers and continue to learn from and be inspired by those who are touched by this disease in my work today.

A diagnosis of dementia can come as a shock not only for the person with dementia, but also for family and friends. Dementia is a term used to refer to a set of symptoms which are caused by disorders of the brain. It is not a normal part of aging. Alzheimer’s disease is the most common type of dementia. Alzheimer’s disease is so much more than becoming forgetful. Symptoms may include short-term memory loss, impaired judgement, loss of language, and changes in one’s personality, mood and behaviour. These changes present many losses to the person’s abilities, and in turn family carers experience tremendous grief for the loss of the person and the relationship that was; for the shattered dreams and future plans; and fear and grief over future losses as the disease progresses.

And yet, despite the enormity of the losses presented by this disease, I am always overwhelmed by the resiliency of those with dementia and their family carers. Although one cannot take away from the daily struggles and heartache of this disease, and although some days are more challenging and exhausting than others, one is still able to live a meaningful and full life with dementia.

What really resonates with me is the ability of a person with dementia to live in the moment. I often think about how difficult it is for many of us, who are blessed to not suffer from cognitive impairment, to be present in our daily lives. We really must work hard to practice mindfulness and center our thoughts on the present. And yet, those who are cognitively impaired can find joy and live in the present moment. For many carers, once they can realize the importance of measuring the joy of their family member in the moment, they often report that their caregiving experience becomes a more meaningful and rewarding one.

And then we have emotions, which transcends all the damage that this disease wreaks on the brain. We know that one’s emotions remain, even if the person loses their ability to label and communicate them. In my first job as a social worker, many years ago, I had the honour of working with a lady in the moderate stage of dementia and her husband. One day, after her husband left the room, she turned to me and said, “I don’t know who that is, but I know that he loves me and I love him”. For me, this tells us all we need to know about emotion and dementia, and it is a story that to this day I continue to share with my clients and in my support groups.

The Alzheimer Society of Canada predicts that 937,700 Canadians are expected to have dementia by 2031. This number is staggering and does not include the countless family members and close friends who are as much affected by the impact of this disease. Let's all work together to support those with dementia and their families, to stand up to the stigmas surrounding this disease, and to shatter the myths about dementia. No one needs to face this disease alone. There is help and support. And most importantly, we continue to have hope for a cure in our lifetime.

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