David MylesIn the United States, approximately 5 million White people have Alzheimer’s disease, the most common form of dementia which can adversely affect cognitive functioning and behaviour. According to a recent report by Alzheimer’s Association in the United States, over 21% of African-Americans who are 70 or senior in age are living from Alzheimer or dementia. Across the Atlantic, the UK has similar disparities.
A 2022 study led by UCL researchers found that the scale of dementia for Black people was a staggering 22% more than that of the White population and that amongst the South Asian and Black demographic, they were dying younger. The research paper which was published in the Alzheimer’s and Dementia Journal and analysed over 20 years of GP (short for General practitioners in the UK) and hospital health records belonging to 662,882 people over the age of 65 between 1997 and 2018 revealed that South Asians with dementia die 3 years younger, while the Black people die 2.7 years younger than the host nation.
It has been purported that people from global majority backgrounds fail to engage in dementia services, but people such as Moïse Roche who grew up in Guadeloupe and has resided in the UK for thirty years, believes much of the research concerning Black communities and dementia have taken a very jaundiced view of engagement in dementia service. Volunteering with Alzheimer’s Society since 2013, Roche was awarded funding in 2020 to complete a PhD exploring how dementia services can more adequately serve Black communities within the UK.
The lack of research pertaining to global majority communities and their own views and perspectives of dementia, only helps perpetuate contorted perceptions of these communities. Rianna Patterson is in her mid-twenties and is a stern advocate in magnifying the voices of Caribbean people with dementia. Patterson was just 16 years old when her grandfather died of dementia. Born in London’s East End, Patterson was raised in the island of Dominica from an early age, completed her schooling and an associate degree in the country. In 2016, she founded the Dominica Dementia Foundation in honour of her grandfather and to raise greater awareness of dementia.
Credit: Dwight Thomas Photography
Dementia The Island Journey is a documentary about dementia in the Caribbean and aims to confront the ageism within the media. ‘’I found that it is a big issue, particularly those that are taking in the media, it has a cultural affect’’ said Patterson.
Language is pivotal in how discourses are formed and how we envision dementia. Unpacking unsavoury language that can serve to ostracise those with dementia and mischaracterise who they are and their agency. ‘’For example, someone who has dementia might watch TV and see a documentary about dementia and they talk about sufferers and talk about a debilitating disease. Someone who has dementia, taking in that kind of knowledge puts fear in them. It doesn’t leave them with a positive feeling. I think it is really important that we highlight ageing well, brain health, living well with dementia and that is kind of like where this documentary sits’’ asserts Patterson.
Dementia The Island Journey will solemnise Caribbean elders and will invite the audience to a holistic lens of dementia in the Caribbean. Using this lens, non-pharmaceutical methods of managing the effects of dementia will underlie much of the documentary. Dementia The Island Journey will inspire the viewer to ask what practical measures they can do to assist those who have dementia.
Rianna Patterson said: ‘’The Caribbean. We are vibrant people, so I want the vibe to show out. So, I went in creole time and there was so much going on. We had a fantastic time having conversations in vibrant spaces’’.
The documentary Dementia The Island Journey will feature people from three countries across the Caribbean, including Barbados and a Dominican who resides in Anguilla will provide valuable insights of dementia in both islands. With a smooth completion, the film should be available to watch in June 2023. A draft of Dementia The Island Journey has been submitted to two film festivals; one in Boston United States and one in Caribbean island Trinidad.
‘’I feel like people are speaking out and seeking help instead of suffering in silence. It’s about your story and what you can do when you share your story. It normalises conversations. It normalises going to therapy. It normalises getting a dementia diagnosis’’
Since the inception of Dominica Dementia Foundation, Rianna Patterson has seen greater partnerships between Dominica and the UK. Collaborations were consolidated when covid was causing havoc across much of the world. Patterson said: ‘’We had people of Dominican descent talking about they have got their families in Dominica, and they don’t know what’s going on. They found it hard to liaise with the carer etcetera, so that’s where our young people, our board of directors and extended members would come in liaise between them and get them in touch with a care home in Dominica if additional support has been identified’’.
Over the years, Patterson has also seen people become more emboldened to speak about dementia. She cites her forthcoming documentary, Dementia The Island Journey as an manifestation of previously muted voices that are now being heard. ‘’I feel like people are speaking out and seeking help instead of suffering in silence. It’s about your story and what you can do when you share your story. It normalises conversations. It normalises going to therapy. It normalises getting a dementia diagnosis’’ said the filmmaker.
Recognising, that there have been notable strides forward in discourses, perceptions and campaigning about dementia, Patterson remains restless. Her unflinchingly demeanour tells the world she has much more to do. Part of that unfinished business is completing a master’s degree in Dementia. The Psychology graduate currently holds an unconditional offer at University College London (UCL). She has a GoFundMe account to help finance her degree offer that was deferred from last year. Financially supporting Rihanna’s GoFundMe account will enable her to carry out vital research that can contribute to eradicating the gross disparities in dementia across the colour line.
