Real stories

My grandfather's dementia diagnosis inspired me to start a charity

My grandfather, Terry Vidal was 80 years old when he passed away with dementia in the Commonwealth of Dominica. 

My father passed away at an early age, so my grandfather was a father figure to me. We had a great relationship.

We spent a lot of time together as I lived with my grandfather, grandmother and mum. He taught me to always remember my self-worth. He was very supportive, he attended every graduation, school meeting or church event I was a part of.

I would always go to him for advice and guidance. I remember when he taught me how to fish, we would stay by the river for hours, and this taught me patience. We would play dominoes or card games together on Sundays, as well as cricket.

Small things make a big difference

My grandfather grew up in a household of 10. He was a very thoughtful individual and had a card for every occasion. He would often give free lifts to people in the community. His altruistic nature showed me that it is better to give than to receive, that the smallest things make a big difference in the lives of others. 

He had forestry skills, worked at Ford as a manual worker in England for many years and, also, worked as a baker. He married my grandmother in their 20s and he made their wedding cake! 

Being diagnosed with dementia 

We almost ended up in a car accident and we were unaware that he was developing dementia at this stage.

But it was a warning sign that we needed to seek professional help.

My grandfather was then diagnosed with dementia and Parkinson’s Disease. He lost the ability to walk and talk. Due to Parkinson's, his hands shook constantly. He experienced stiffness, particularly in his hands, and difficulty swallowing, so he also needed assistance with this. 

He lost a lot of weight during his diagnosis and needed further personal care support in the later stages of dementia. There were also personality changes as he became agitated.

When he was discharged from the hospital, he needed constant monitoring to prevent wandering. There was an experience of loss as he forgot about the family, and himself. 

'An emotional rollercoaster'

It was an emotional rollercoaster for us all. My gran provided personal care when we were at home, and my mum and gran would carry him up the stairs when he lost the ability to walk. 

I remember bringing family pictures to the hospital to re-engage him as I felt helpless, I needed to do something. 

Home felt less like home every day that passed by, as I spent most of my time in the hospital with him. I was 16 at the time. I studied for my high school exams whilst in the hospital as well. 

The dementia was quite progressive, and he passed away within a few months. 

Finding Alzheimer’s Society

There wasn’t a local resource centre I could visit to learn more about dementia.

I came across Alzheimer’s Society when I understood that he was experiencing memory loss. This allowed me to understand the changes that my grandfather might face, and how I could cope as well as support him during that period. 

I volunteered with Alzheimer’s Society as a Dementia Friend Champion, delivering dementia sessions at the University of Kent and at residential care homes in Dominica. 

I worked closely with the international team at Alzheimer’s Society to adapt the lesson content, in preparation to launch the Dominica Dementia Friends Programme. I also fundraised whilst participating in dementia walks hosted by the Society - and I also walked 50km of the Camino to raise awareness of dementia through an event called Walking the Talk for Dementia!

In memory

Shortly after my grandfather passed away, I chose to study psychology at college level. Then in 2016, at the age of 18, I founded a youth-led dementia charity called the Dominica Dementia Foundation in memory of my grandfather. 

We are a growing community of dementia advocates comprising families in the UK with Dominican heritage and those who are based in Dominica. We run national initiatives such as World Alzheimer’s Month in Dominica. We have a close relationship with care homes in Dominica to assist their carers and the services they offer.  
 

A royal award for dementia work

I’ve learned the true meaning of life through his legacy.

We shouldn’t look to live to work, we should aim to work to live. Life shouldn’t be all about power and dominance. Everyone is a leader in their own right. 

As a Black British woman with Caribbean roots, I know what a healthy and happy lifestyle looks like, and this strengthens my desire to live a fulfilled life. 

In 2017, I started my journey of achieving a bachelor's degree at the University of Kent. I was a recipient of the Queens Young Leader award for the work I do in dementia and I was also selected to speak on the BBC's The One Show with Prince Harry. This September, I’m pursuing a master’s degree in dementia at University College London (UCL). 

Supporting dementia voices

Take action for action, it could be anything like talking to someone who has dementia or sharing your knowledge of dementia with someone else. 

If you are experiencing dementia your voice is valuable and can shape practices and treatments for this cause. 

Volunteering is a great way to support the work of Alzheimer’s Society, and other dementia initiatives locally.