Tag Archives: DAI is Life Changing

What’s it like to live with dementia?



On the final day of Dementia Awareness Month, we share a short video of one of our co founders, Kate Swaffer talking about three things she now knows about dementia.

As a co founding member of DAI, Kate has often said she is glad she co-founded DAI, because it provides support, gives people hope, and helps them to ‘reclaim their lives‘, after it has been stripped away.

Whilst not all members join peer to peer support groups, and not all members become active in DAI, those who do, regularly say: “DAI saved their life”. DAI is Life Changing.

3 Things I know [about dementia]

The Drum, SBS, Australia

Introduction by Ellen Fanning, 5 May 2020,
Reporter Stephanie Bolte

When [DAI co-founder, Chair and CEO] Kate Swaffer started to see words upside down over a decade ago, she thought it was a result of brain surgery she’d had. It turned out she was one of more than 26,00 people in Australia under the age of 65 with what’s known as younger onset dementia. 

Told to get ready to die, Kate’s world seemed to disappear overnight, but she realised it didn’t have to, and she has gone on to co-found Dementia Alliance International and advocate across the globe for dementia in practice to be seen as a disability. She sat down with reporter Stephanie Boltje, before the Coronavirus shutdown, to explain three things she knows about dementia.

Since you’re here…

… we’re asking readers like you to support our members, by donating to our organization.

With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

Every contribution, however big or small, is so valuable to our work of supporting people diagnosed with any type of dementia to live more positively, and with a greater sense of hope.  Thank you.

Help more people with dementia to continue to have a voice, by donating to DAI.

Dawn and Maz: Why they’re glad they found DAI

On day 2 of Dementia Awarness month 2020 #DAM2020, we hear from DAI member Dawn and her partner Maz who live in Mebourne Australia, on why they are glad they found DAI. Dawn joins two of our peer-to-peer support groups each week, and occasionally, is inspired to get up early for avirtual Cafe or online Webinar!

Image source: Dawn and Maz

Dawn: I’m so glad I found DAI because I really enjoy the weekly support group sessions on Zoom.

I like that all the people in the Zoom sessions are pretty much like me and we talk about lots of things that we can still do. I like it when we share what we’re doing, such as what we’re cooking. It’s really good to hear other people’s experiences.

I appreciate that the others are very patient with me because I have Primary Progressive Aphasia and I find it difficult to express myself. Each week I write down what I want to say beforehand. Sometimes I read it and sometimes I just need it as a prompt.

I am so thankful that I was given Kate’s book ‘What the Hell Happened to my Brain?: Lvign Beyond Dementia’ because it introduced me to DAI (and it is an excellent, positive book!)

Maz: I’m so glad my partner, Dawn, found DAI because the weekly support group sessions on Zoom have been very affirming and encouraging for her.

They are a space just for her, not for both of us, and it’s great for her to have her own voice without me doing most of the talking, which is what often happens when we are in group settings, online or face to face.

Although I sit off-screen, I am present each week as a communication support for Dawn when needed.

It’s great to hear the positivity and encouragement bouncing off the participants. Just hearing from others who are going through similar experiences and emotions is so important. As with any other group of people, the participants’ sharing is not always positive, and the hosts always treat any expressions of sadness with sensitivity.

We’ve also learnt about many useful resources through the support sessions and the DAI website.

Dawn comes away from the sessions with a smile on her face and a sense of connection with others. Although we’ve never met any of the others in the group, we both feel that they are our friends and we are so grateful to the hosts who so generously give their time and expertise.

Thank you Dawn and Maz.

YOU can help DAI to support more members like Dawn here…