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My Grandfather’s Dementia Diagnosis Inspired Me to Set Up a Charity

My grandfather passed away with dementia in the Commonwealth of Dominica when I was 16.

I was raised with him, my grandmother, and my mum. I remember my grandfather as a supportive grandparent, attending every graduation, school meeting, and church event I was a part of. We went fishing, played dominoes and cricket together. These are my fondest memories.

He was a reserved individual but was able to brighten up anyone’s day. My grandad was a classy man and held strong values of being kind and spending time with family.

The warning signs began with my grandfather notifying us about a leak in the house, which is quite normal. There are always leaks in the house. But it was quite frequent, and we kept checking in, and there wiuld be no leak.

The significant warning sign for me was when we almost ended up in a car accident with him at the wheel. We were unaware that he was developing dementia at this stage, but my grandfather had a clean driving license, so I knew something was wrong. 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. He also experienced stiffness, particularly in his hands, and difficulty swallowing, so he also needed assistance with eating and drinking.

During his dementia diagnosis, I spent my time at the hospital with my grandad. This experience highlighted to me the lack of understanding of dementia in public health facilities, the cultural stigma towards dementia, the lack of access to support for young carers, and insufficient research and resources for treatments for dementia.

I felt a bit hopeless at some point of this experience, my friends didn’t understand what I was going through, and I wasn’t too far from their level of understanding either, so I started doing my own research to learn more about dementia. I brought pictures of the family to the hospital as I read that this is a good reminiscing activity to do with someone who has dementia.

I started going to therapy for the first time in my life, to cope and further process what I was feeling. I would attend sessions between classes at school. This was helpful for retrospection, and I felt lighter speaking to someone who has a deeper understanding of dementia.

My grandfather regained his memory, but it was 3 days before his death.

By the age of 18, I founded a youth-led dementia charity in 2016 in memory of my grandfather, with aims and objectives based on personal experiences. We are the only dementia organisation in Dominica. This allowed me to develop my leadership and advocacy skills by building key relationships with Government officials, regional and international non-governmental organisations, and key beneficiaries, including care homes and families with someone who has dementia. I grew a community of Dementia Advocates in the UK and Dominica. I'm hoping to create psychosocial interventions for people with Dementia by conducting further research into Dementia through the Dominica Dementia Foundation. Her Majesty the Queen Elizabeth ll awarded me the Queen’s Young Leaders Award in Buckingham Palace for my commitments to Dementia.

Since starting the foundation, I’ve also explored different disciplines such as film, using it for social change in this area.

Dementia: The Island Journey is a feature film and an eco-friendly production that focuses on dementia, culture, and my personal journey in creating an impact in the lives of older people in Dominica. Living well in a cultural context is something the film highlights, creating a realistic as well as a positive approach to older people in the media. I also explored holistic treatments for dementia and engaged in traditional experiences in a quest to understand the recipe for the meaning of quality of life. This film project has allowed me to fall in love with Dominica all over again, seeing it through a film director’s lens. I’ve also been able to connect with my grandfather’s siblings and cousin as we share memories of him since the film launch.

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).

My grandfather’s passing has given me a sense of purpose, it has been the journey of a lifetime contributing to this cause. I feel connected to my grandfather, it has been personally healing for me to support other family members navigating this new life change. I am who I am because of my grandfather and my upbringing.

The foundation is my way of honouring a great man who is dearly missed.

The Dominica Dementia Foundation aims to raise awareness of dementia, raise funds for families affected, provide emotional support to families and caretakers as well as facilitate research towards dementia.

Dominica Dementia Foundation


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