Member showcase: Tony Hall

My name is Tony Hall and I live in Bristol. I was a carer for my wife Barbara for over 20 years. She first showed symptoms of young onset frontotemporal dementia in 1999 when she was 53 years old; sadly, she passed away in April 2022. 

It took us several years to get a formal diagnosis and we realised during that time how much ignorance there is about dementia, the signs and symptoms and, more importantly, how to support someone once diagnosed.

So in July 2013, we decided to launch a local charity called Bristol Dementia Action Alliance (BDAA) with the aim of making Bristol the most dementia-friendly city in the UK.  

The BDAA run or support: 

• Awareness sessions with businesses, schools, care homes, children’s groups, youth clubs, community groups, faith groups, in fact anybody wishing to engage 
• Half-day (three-hour-long) workshops for people in the community working with, or who want to work with, carers and people living with dementia 
• Two memory cafes for family carers and people living with dementia. One has around 40 attendees, the other has around 20 and counting 
• Two skittles groups for people living with young onset dementia. One of the groups has also set up their own walking group and lunch club 

We also provide free MP3 players with a playlist of 15 favourite songs to people living with dementia. Music is really powerful and stimulates the brain which is brilliant for someone living with dementia. And we campaign on behalf of people with a dementia diagnosis on topics such as the closure of public toilets and libraries and on accessibility issues. We work in partnership with around 30 other local agencies and have a very close partnership with Alive, a charity dedicated to improving the quality of life of older people and their carers, and BRACE, a Bristol-based dementia research charity.  

Patience is a virtue, so the saying goes  

We are fully aware that the needs and issues around young onset dementia are totally different to older people. Care and support is usually geared towards the elderly and this has got to change. We also need to better support the children of people living with young onset dementia. 

A few years ago, my eldest daughter asked me what I wanted for Christmas. After thinking for a moment, I replied, “A bucketful of patience, my love”.  She smiled knowing full well that family members looking after someone with young onset dementia need spade loads of patience.  

Over the years, I’ve been asked many times to write a book about our experiences and eventually I did. My book ‘A bucketful of patience’ covers our journey with dementia over twenty-two years. It was published in September 2023 by Bristol Books.

You can order a copy of Tony’s book here.