Foreword

Summary

I have become a storyteller. Not with jokes or funny stories, although funny things happen to me a lot. But to tell others about living with Alzheimer’s. To tell people my story, my hopes and my intentions and, more importantly my expectations.

Breaking the stereotype of a person with Alzheimer's or other dementia as very elderly and in the final stages is very important to me. And it starts by speaking out, one person at a time.

Like I did to the business acquaintance who sends emails to a broad address list. One day he sent a message that made me think and reflect.

He started his email, ‘Even with my failing memory I don't recall …’. I knew he didn't have cognitive impairment and at that particular moment his casual reference to memory loss pushed my buttons. I then knew I needed to be an advocate and to educate. I hit the ‘Reply’ button and said for the first time since my diagnosis, out loud and with confidence, ‘I have Alzheimer’s’.

That one incident made me realise that if I don't speak up an opportunity is lost. The stigma continues and so does the lack of understanding about Alzheimer's and related dementias. But more importantly I am lost as a person with Alzheimer’s. My concerns and issues get diminished or at best are drowned out. I lose my voice and more importantly the chance to make a difference.

I believe that is called self-advocacy. And engaging in such activity personalises my disease in my terms. I take advantage of my voice to frame the discussion around dementia-related issues and care.

I am a person with dementia. I am also a family member, who has learned a lot from watching and navigating my mother through her dementia journey. I was her advocate before she went into care and then while she was a resident in a care facility.

The lessons learned then and those recently acquired through my own experiences have come together for me and hopefully others like me. I recognise that I have much to teach others. Through my efforts if one doctor or nurse or care aide learns something new and practical about dementia care it's worth it.