Keri Kitay: Dementia Week 2025

Dementia Action Week (16 - 22nd September) encourages everyone to take the first steps to learn more about dementia, and take action to shape our communities for the better. Hear from Keri Kitay, author of The Long Goodbye, and her experiences managing dementia in her family, below.

I often reflect on the evening of the 8th of October 2019. To date, this night is etched in my memory as the most significant and profound experience I have ever had. This was the night that Mom succumbed to her battle with early onset Alzheimer’s, which she had formally lived with since her diagnosis on the 11th of June 2011. The official eight-year physical journey had come to an end and together, my brothers, Dad and I all felt a sense of relief that Mom no longer had to suffer. It was a dichotomy of feelings – both immense sadness and overwhelming sense of release. I felt that now I had a little more air to breathe.

Two days later, I woke up early in the morning and felt the urge to run. I walked down to the beach, and it was as though my body was taken over by an external force and without thinking I was running across the promenade with ease. I felt light and free, and as the sun rose over the ocean and the warmth of the sun hit my face, I realised that this moment was as much about myself as it was about Mom’s freedom. For almost 10 years our lives were dictated by Alzheimer’s, about caring for my mom and her needs, as well as each other. For the first time in almost 10 years, I felt a newfound sense of freedom. But with this freedom came immense sadness that Mom was no longer with us and that was a feeling I would have to grapple with for the rest of my life. It taught me one of life’s greatest lessons – you can experience joy and sadness simultaneously.

Throughout the time that Mom has Alzheimer’s it became extremely apparent to me that in our community and society in general there was a lack of understanding and education around Dementia. For the most part, it was believed to be an old person’s disease, something that one would typically get in their later years of life. With that you could almost justify when a person in their 80’s or 90’s develops Dementia, is it somewhat normal to forget things. However, when a person in their 50s develops early onset Alzheimer’s, it is much harder to grapple with. The constant change that occurs to the person is devastating. Witnessing a young person lose their ability to perform normal daily tasks, lose their independence and dignity, lose their memory and to add insult to injury for people in the community – their friends, family and acquaintances to treat them differently is a hard pill to swallow and tough to witness as family member.

How we respond to situations in life defines us and I believe this is one of those moments. I made the conscious choice to use Mom’s journey and family experience for good. To take the hard-earned lessons we learned and impart knowledge within the community and to educate society on the impacts of Dementia on the person, their family, and the community. To ensure that people are innately aware of the importance of treating a person with Dementia, or any form of illness or disability with respect, kindness and most simply as a human being.

The most important piece of information for anyone to know is that a person with Dementia loses their memory, but not their intelligence. They will forever be able to feel and experience emotions and have some degree of awareness of their surroundings.

Dementia Action week is a stark reminder there are approximately 411,100 people living with dementia in Australia, including nearly 257,500 women and 153,700 men. In particular younger onset dementia refers to diagnosis of any form of dementia in a person under age 65. In 2024 it is estimated there are almost 29,000 people living with younger onset dementia in Australia. This figure is projected to increase to more than 41,000 by 2054.

There are two very important pieces of information to take note of:

1.      It is imperative that we as individuals and a community take care of our brain health and ensure we are doing what we can to be active and healthy as well as prevent and delay brain ageing.

2.      As we see a rise of younger on-set dementia, it is increasingly important to understand how a disease like younger on-set dementia manifests and learn how we can interact and treat people to ensure that they are always included and feel like a valued member of the community.

A powerful mix of memoir and hard-earned knowledge, in The Long Goodbye, Keri Kitay charts her family's poignant and devastating journey after their mother was diagnosed with early onset Alzheimer's disease.

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