Charity: life doesn’t end when dementia begins
A dementia diagnosis does not have to signal the end of a happy and fulfilled life, representatives of a support charity highlighted yesterday as they marked World Alzheimer’s Month.
The global campaign theme is “Never too early, never too late”, which has been embraced by Action on Alzheimer’s and Dementia in Bermuda.
Liz Stewart, the charity’s founder and president, explained: “There’s still a sort of negative view when people get a diagnosis that it’s almost like the end of their life. People kind of view it as a real negative.
“Yes, it’s not a great thing to get a diagnosis, but we always say, life doesn’t end when dementia begins.
“Your life is still going on. It may look different. You may have to modify things you used to enjoy. So it’s more about how can we meet those persons’ needs and things they enjoyed before in a modified manner?
“People can still enjoy a number of things. Their hobbies can still be enjoyed. They can have great days, so it’s not the end.”
She added: “You may have a diagnosis, but your life hasn’t ended yet.
“You’ve got a lot of life you could still live very actively, very happily, very fulfilled.”
Charity administrator Erica Fulton said: “One of the biggest pieces that we fund and organise is our daily activities programme, that runs from Monday to Friday at Peace Lutheran Church, and it’s currently about two hours a day, during the late morning, early afternoon.
“We have music therapy, art, chair yoga and chair exercises.”
She highlighted that the programme provided opportunities for people living with dementia and caregivers to get out, socialise and enjoy creative activities.
Ms Fulton said many studies have been carried out into the “power” of music and art but added: “It’s undeniable, you just walk in and you can see it.
“You don’t really need a study to tell you this person was probably going to be sitting at home in a chair looking at the wall, where instead they’re here engaging in something.”
Ms Stewart added: “It definitely translates: we’ve had family members say when people have meaningful engagement in the earlier part of the day, that sort of shifts over to the afternoon and they’re in a better state of mind.
“We know things like exercise release natural endorphins, so you’ve got the same thing when people are engaged and happy.”
Ms Fulton said it was also important for family members and caregivers to know services existed to support them.
She added: “It’s never too late.
“There are things that you can do for anybody in whatever walk of life they are to live their best life possible.”
The AAD website explains: “Dementia is an overall umbrella term covering a number of specific medical conditions and is caused by damage to brain cells.
“Communication links between these cells effect the normal thinking, behaviour and feelings of a person living with dementia, resulting in the loss of memory, language, problem-solving and cognitive skills.
“These interfere with an individual’s daily life and progressively get worse.”
It said Alzheimer’s was the most common form of dementia, but that other types included vascular and Lewy Bodies.
Alzheimer’s Disease International’s campaign never too early, never too late was designed to emphasise the critical role of identifying risk factors and taking steps to delay or possibly even prevent the onset of dementia.
Its website said: “This includes ongoing risk reduction strategies for individuals who have already received a diagnosis.”
• Physical inactivity
• Excessive alcohol consumption
• Air pollution
• Head injury
• Infrequent social contact
• Less education
• Hearing impairment
• According to information on the Alzheimer’s Disease International website.
The AAD representatives said there were no formal statistics on people living with dementia in Bermuda, but the figure was estimated to be in the region of 2,000 to 3,000.
Ms Fulton added: “Without formalised numbers, it’s hard to lobby governments around funding and support, it’s hard to efficiently plan.
“We are a small charitable organisation working to meet the need as much as we can, but we know that in 2025, 24.9 per cent of our population is over 65.
“We know that by 2050 the number of people with dementia globally is tripling, so this is a global health crisis that is not going away.
“Having a good or better handle on those numbers in Bermuda would be helpful, but it’s like that for any health condition on the island. It’s tricky to count.”
Ms Stewart added: “The other issue is there’s a lot of people that aren’t getting a diagnosis, so there is a large group of the population that is living with dementia, and it hasn’t been addressed by anybody.”
She said: “We find that some medical practitioners here are much more proactive in helping people get a diagnosis, whereas some others, we’ve heard people say ‘I went to the doctor and they just said, oh don’t worry about it, you’re just getting older, why do you need to know, there’s nothing that can be done’.
"We feel that everybody deserves to know what’s wrong with them.
“It could be any number of things and the treatments are different depending on what type of disease you’ve got.”
Ms Stewart added that diagnoses also provided opportunities to plan for the future.
AAD invited others to join its activities programme on September 21 — World Alzheimer’s Day — when Music for Memories will be held from 11am to midday and chair yoga will run from midday to 1pm, both at Peace Lutheran Church in Paget.