Data collection from early diagnosis of Bermudians living with dementia can lay the groundwork for the creation of a national plan to address the progressive brain condition, health campaigners said.

Erica Fulton, of Action on Alzheimer’s and Dementia, and Marie Fay, of North Star Dementia, told The Royal Gazette they attended last month’s Alzheimer’s Disease International biennial conference in Krakow, Poland.

This year, 1,200 participants from 129 countries were at the two-day event.

Ms Fulton said that while discussions brought together “very broad perspectives" by attendees, participants from different countries talked about the challenges faced and it became clear that Bermuda was not unique.

She explained: “Diagnosis was really pushed at the conference because an early diagnosis means that the door is open in terms of what you can access.

“We know that here in Bermuda there is no standardised care for people living with dementia.”

Ms Fulton added: “It's haphazard as to whether you get a diagnosis; how far is your dementia journey by the time you get that diagnosis?”

She highlighted that costs of diagnosis were greater when the condition was already advanced.

Ms Fay highlighted that the number of people living with dementia was rising globally and there was a lack of data in Bermuda — “one of our biggest challenges”.

She added: “With the increase in the population it means one in three seniors potentially will have dementia.”

Ms Fay pointed out: “It is said that there are two types of people — those that will be diagnosed with dementia and those that will be caring for somebody with dementia. So we all should be concerned.”

At the conference in Poland, participants spoke about the “global trend” in which a very small percentage of people received formal diagnosis and, according to Ms Fay, that applied to Bermuda.

She said: “Many are receiving it later in the disease progression than they would like and that is because we have a lack of a national dementia plan, lack of a clinical care pathway that would help us to pre-screen for this condition early.”

Last year, the Government partnered with North Star Dementia to launch a six-month pilot programme on dementia.

The scheme was geared to make sure that people who lived with dementia, who were uninsured or under insured, had access to community support services.

Ms Fay said the project focused primarily on data collection and she believed it was a start in drawing more attention to the issue in Bermuda.

She said: “We have just completed that six-month pilot at the end of March and the results have not been made public yet.”

Ms Fay said it was hoped there would be an extension to the pilot but also that the data could be used to explore the development of a wider programme for the island.

The charities have long called for the formation of a national dementia plan.

Ms Fulton said that in 2017, Bermuda — through the Pan-American Health Organisation/World Health Organisation — signed an agreement for the creation of a dementia plan, and that the deadline was 2025.

Ms Fay said: “We have come a long way in engaging some key stakeholders. We have worked very collaboratively together and there is a willingness and a growing awareness.”

She said key systems would have to be in place to address the issue, and added: “We need to look at prevention, screening and then what happens when you receive that diagnosis, how do we provide that necessary post-diagnostic care?”

Ms Fulton said that in Britain an estimated 63 per cent of the costs for dementia care were “put on the person themselves and their family members because there isn’t a system in place to best support”.

She said a recent study in Britain found that there were “exponential” costs attached to care for people who lived with dementia, a situation which she said continued to increase annually.

However, she pointed out that although the costs would not be comparable with Bermuda, there were steps that could be taken to "help a person to live well and to slow the progression of dementia”.

Ms Fulton added: “These are not pharmacological interventions, these are lifestyle changes that we can do, we can equip caregivers with education and support.”

Reflecting on the conference, Ms Fay said: “Bringing everyone together made us realise that everyone across the world is facing similar challenges, whether it be large well-established healthcare systems or smaller island jurisdictions as well.

“We definitely plan to re-engage with the Government to share this information and to look for ways to help.

“We want to offer our services, we want to be able to help with finding those solutions.”

To spread awareness of dementia, the two charities were working to ensure Bermudians participated in a global survey being run by ADI.

Ms Fulton said: “If we can get enough respondents, we get Bermuda-specific data which can actually help inform decision-making.”

She added: “It is really important that as many people on-island complete this survey, which looks at attitudes and how stigma can prevent people from seeking out diagnosis or keeping it hidden.”