Dementia is a disease that attacks the brain of the individual and the heart and soul of the community.
There are already an estimated 3,000 people living with dementia in Bermuda – and those numbers are expected to triple within 25 years as our population gets older.
Even though dementia-related deaths are often attributed in the record books to comorbidities such as heart or respiratory issues, it has been named among the leading causes of death on the island.
The impact is widespread.
For individuals: Dementia is a progressive and terminal condition that leads to a decline in cognitive, physical and emotional health, ultimately affecting all bodily functions.
For caregivers: About 80 per cent of care is provided by family members – unpaid and often untrained – whose own wellbeing can be severely harmed by the physical, emotional and financial toll.
For our economy: Health officials estimate dementia already costs Bermuda $94.5 million a year.
For our social fabric: About 75 per cent of people with dementia are uninsured or underinsured, meaning that the poorest segments of society can’t access the health services they need.
“Dementia is one of the most pressing issues in Bermuda,” Erica Fulton, executive director of Dementia Bermuda, told RG Best Health.
“We have an aging population, and we know that the numbers are only going to continue rising. We know that we are not adequately meeting needs today.”
This month, the Bermuda Government launched an integrated care pathway for dementia to help people along every step of their journey (see page X).
Dementia Bermuda – founded in 2012 as Action on Alzheimer’s in Bermuda – merged earlier this year with Northstar Dementia to become the island’s leading non-profit providing community-based dementia care. The merger has enabled the organisation to make great strides, supporting more than 400 people so far this year, through its four-core services.
But there remains a long road ahead.
Progressive decline
Marie Fay, clinical director of Dementia Bermuda, and founder of Northstar Dementia, has worked as an occupational therapist in this field for the past 20 years and has seen the hardship up close.
“Like other life-limiting conditions, dementia progresses through stages, with increasing care needs required toward the end of life,” she said.
Dementia affects far more than just memory. It can also involve changes in speech, language, vision, information processing and behaviour, all of which gradually reduce a person’s independence and may compromise their safety.
As the condition progresses, it places increasing demands on both the individual and their caregivers — often leading to the need for assistance with mobility, personal care and eventually all aspects of daily living.
Dementia Bermuda works to maintain skills and quality of life for as long as possible through its In-Home Occupational Therapy, Daily Activities and Cognitive Stimulation Therapy programmes.
Value of early detection
The good news is that a dementia diagnosis doesn’t have to be the end of the world – it can be the start of finding support to live well.
Ms Fay said: “With the right education and understanding of the condition, with the right support early enough, people can continue to live well with a diagnosis of dementia.
“There are things that we can do to help slow the progression and put people in a more empowered position.”
The problem is that early detection doesn’t happen often enough.
“We are finding that people are either not receiving that diagnosis or are receiving it at a point which is too late for us to provide proactive care and support for best possible outcomes,” Ms Fay said.
“Too often, people contact us at the point of crisis, as they may not have recognised the changes earlier or had the insight to seek support sooner.
“Unfortunately, it means they’re already at burnout and it’s already having a significant negative impact on their health and wellbeing.
“Those clients who contact us who are proactive, who are hitting it head on, and say ‘I noticed changes in my memory, I’ve been to my doctor, I’d love to get connected with you’ – that’s the best-case scenario for connecting with our services.”
The Government’s new integrated care pathway intends to address this by helping people get assessed early, understand their support options and plan their next steps.
Stigma
One reason people sometimes don’t act quickly is that dementia still carries a sense of shame or embarrassment.
Ms Fulton said: “As a society, we are terrible about how we approach aging. Everything’s about trying to stop aging. It’s very ingrained in us that you don’t want to get older and it’s shameful to need help.
“So, we hide conditions. We need to embrace the idea of aging healthily.”
Dementia Bermuda, which aims to change mindsets by promoting awareness, has organised a series of events throughout World Alzheimer’s Month this September.
“Some people see dementia as a normal part of aging. They think it’s just granny being forgetful,” Ms Fulton said.
“Which is why we’re pushing in September: let’s talk about it.
“When we increase our publicity with interviews, we find we get calls from people who may have been struggling at home for years, on their own, isolated. When they hear it put into words that it’s not just this inevitably of aging, it’s an actual disease and it should require a diagnosis and post-diagnostic support, they come forward.”
Ms Fay said: “It’s about switching the conversation around dementia. When I have family meetings with people who have just received a diagnosis of dementia, they almost feel like it’s an immediate death sentence. They’re like, when will my loved one be unable to remember me? When will they start wandering from the home?
“We provide a lot of education to say that may never be the case for your loved one, or at least not for a long time to come. Often, with the right education and the right support early, people can continue to live well with a diagnosis of dementia.”
Burden of care
Alleviating the care burden is a top priority for Dementia Bermuda – and serious inroads have been made in the past 12 months.
Ms Fay said: “We always say we are asking people to do the impossible. Our system is hugely reliant on family members to fill those service gaps.
“We cannot effectively care for someone with dementia without also caring for their loved ones supporting them. A large portion are elderly spouses themselves, who are seniors and have their own health issues.”
Dementia Bermuda’s community-based services aim to help people with dementia remain safe and independent at home for as long as possible, while supporting family caregivers to manage their complex role.
In the first half of 2025, 93 caregivers signed up to its new Caregiver Education and Support Programme.
Ms Fulton said: “It brings a group of people together who are facing similar challenges. Up to that point, they may not have really spoken about their experience of caring for a loved one. It’s a safe space to share, build your confidence, acquire skills, network and find solutions.”
This is essential, because dementia is an issue that impacts us all.
“Only by working together,” Ms Fulton said, “can we create a support system that Bermuda needs.”
- Contact Dementia Bermuda on 707-0600 or email [email protected]
