In a post titled “Surprised by my anger” written by a dear friend Chrissy last year, the quote I’ve highlighted below resonates: “… it angers me that they don’t stop to think about the hurt they may be causing others.”

In the last 14+ years, I’ve devoted my life to supporting people more recently diagnosed with dementia to stand up and have a voice, and have provided peer to peer support and other advocacy for the global community of people diagnosed with dementia. I’ve campaigned relentlessly for change, including improving the experience of getting and receiving a diagnosis, and the post diagnostic support we all have a human right to, but which we are still denied. I’ve spent literally thousands of hours mentoring others to become advocates.

It has felt like it was my final purpose in life, and everything that happened before a diagnosis of dementia, the good and the not quite so good, led me to where I am today.

In that time, I also became a co founder of Dementia Alliance International (DAI), which is run by, and is inclusively for people diagnosed with any type of dementia, of any age, living anywhere in the world.

DAI has often been referred to as the ‘Mother ship‘, and as the Chair and CEO for many years (I stepped down from both of thos roles in 2021), I’ve literally spent thousands of hours mentoring people with dementia to become advocates, and to get back to living, and to become advocates.

Lots of the time, however, steering (rowing) the the mothership is done alone.

For various reasons, very few people stay loyal to the mothership; they not only walk away, many often also cause harm to the organisation as they walk away. And then ‘forget’ (refuse) to acknowledge the mothership, and how DAI re-empowered them to ‘get back to living’. The ‘shiny star’ syndrome can take over too; being in the ‘limelight’, as speakers, and so on, often due to having being referred to organisations by DAI, appears to become more important to them, than supporting people newly diagnosed with dementia, supporting or even acknowledging the mothership, their mentors, or working as a team.

Just like people without dementia, egos, power struggles, jealousy and a whole heap of other responses get in the way of working together, for the collective good of all. I’ve realised that people with and without dementia are often in it for individual gain, rather than supporting newly diagnosed people with dementia, as so many promised they would do, when I first started mentoring them.

It is easy for people to justify their need to do what is best for them as individuals, but equally challenging to accept that most are in it for themselves, even though they proclaim to be advocating for all. Advocates are like ships in the night, they come and go, often forgetting their self-proclaimed and promised responsibilities and commitments to others.

Responsibilities are easy to talk about, but very difficult to live up to…