The practice of restraining or drugging people with dementia is a violation of their human rights that is “absolutely, completely unacceptable”, an international advocate for those with Alzheimer’s has said.

Johan Vos, the deputy executive director of Alzheimer’s Disease International (ADI), visited the Island while a course offering professional care certification was under way for family carers and professionals.

While he did not name any facilities in which the draconian methods had been used, Mr Vos said he wanted to see “better monitoring of residential care, and action being taken where appropriate”.

“I believe that there are protocols and regulations in place, but I have heard that they are not being applied as well as they should be.”

The course under way now, a collaboration between ADI and the Bermuda Legion, is aimed at getting 100 carers certified. While much of Bermuda’s care was rated favourably by Mr Vos, he said the Island needed its own dedicated dementia care facility, as well as a national plan to deal with dementia.

“What a plan does is help a country best deal with the epidemic,” he told The Royal Gazette. “It’s doubling every 20 years, and it’s a hugely costly disease that could cripple a healthcare system.”

Together, dementia and Alzheimer’s represent “a very, very cruel disease”, Mr Vos noted. “Ultimately people lose even the concept of night and day, as their personalities disintegrate and family members become strangers.

“For every person with dementia, there are at least three family caregivers, who also carry the burden of the disease. It is an economic issue for family members who have to give up work. Looking after them 24 hours a day, month after month, is an incredibly hard job. Seeing someone deteriorate, no longer being the person they used to be and becoming aggressive, is very hard. That’s why I believe family caregivers need a lot of support, and the government has a role to play in that.”

Mr Vos dismissed the notion that Bermuda might be too small to warrant its own Alzheimer’s and dementia plan. “I don’t accept that,” he said.

“There are many other small island nations who are looking at developing a plan. It’s a global disease that will impact every country proportionally according to its size.”

The longer lifespans enjoyed by modern man has resulted in an ageing population and a rise in disease — 46.8 million people have dementia worldwide, and it is set to become 131.5 million by 2050.

“It costs $818 billion globally, or roughly 1 per cent of the world’s GDP,” Mr Vos added. “If it was an economy, it would be the world’s 18th largest.”

As well as meeting Governor George Fergusson and speaking with hospital staff during his visit, Mr Vos has toured residential care facilities and been impressed by many staff.

“I have also seen areas in the residential care setting where people are being restrained — this is not a prison sentence, and I would like to see that change,” he said.

“I have also heard that in some cases antipsychotic drugs are being used to make people drowsy. That’s totally unacceptable. I would like very much to see a change and offer solutions.”

Viewing it entirely as a human rights issue, Mr Vos stressed the need for person-centred care as a means of understanding persons with dementia, as well as the need for a good staff ratio to provide the best care.

“That way, staff have enough time to spend with a person who has dementia, to get to know their background history,” he said. “Then they can try to understand their behaviour and provide care in a loving, caring environment.”

Mr Vos, who returned to the UK on Tuesday, added that ADI had a local Alzheimer’s support group run by Julie-Kay Darrell, which can be reached at 238-2168.

Meanwhile, Carol Everson, a welfare case worker with the Bermuda Legion, offered apologies to the many who had sought a place on the carer’s certification course, which quickly filled to capacity.

“It just proves that there is an enormous demand for information and skills,” Ms Everson said.

The legion continues to seek a residential facility for individuals with Alzheimer’s disease and dementia.

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