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Call for education about Alzheimer’s

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Educating people: Action on Alzheimer’s & Dementia is busy raising awareness of the disease

Bermuda’s community needs educating about Alzheimer’s so sufferers can be given adequate support, according to Marie Fay, an occupational therapist for Action on Alzheimer’s & Dementia.

Ms Fay said some people end up disappearing from day-to-day society because their loved ones are afraid they will be embarrassed due to the stigma surrounding the disease.

Speaking with The Royal Gazette to try to shed some light on the condition and its impact on Bermuda, Ms Fay said: “There are still individuals within the community in Bermuda that would prefer to hide their loved ones away than have them embarrass them.

“That’s why people start disappearing from church and disappearing from previously enjoyed social activities.

“What we should be doing is educating the community so that we can better support these people because there’s nothing we can do to cure or fix people right now.

“It’s about us changing and the environment changing to support them better.

Elizabeth Stewart founded Action on Alzheimer’s & Dementia in 2012 after discovering there was not a lot of support or awareness about dementia in Bermuda when she cared for her own mother, who had early onset Alzheimer’s.

Ms Fay said: “We’ve done an awful lot of education since the charity started just because people thought it was a normal thing.

“They thought it was something that inevitably happens when you get older. If you live long enough you’re bound to become senile, which is certainly not the case.

“It’s not a natural part of ageing. That’s what we really try to hammer home. Things do change a little bit over time, but if people are having significant issues with memory, difficulties with their daily activity, that’s not normal, no matter how old you are.”

Alzheimer’s is a disease of the brain and, like cancer or diabetes, it needs to be properly diagnosed and treated, she said.

“Sometimes we’re brought in when people are quite young, exhibiting mild cognitive impairment,” Ms Fay added.

The relationship between dementia and depression is a complicated one. Data suggests that people who have strong social support and are socially active are less likely to have dementia symptoms.

Once people start experiencing cognitive deficits, they may withdraw and feel lonely — which can increase their risk of depression and dementia.

Similarly the loss of partners or loved ones can leave a void that is difficult to fill. Ms Fay said that loneliness can affect the stimulation side of the disease, particularly in the transition to retirement “when your time and routine is yours to fill”.

“We provide a lot of education trying to get people to remain active within their communities and find meaningful roles,” she said.

Researchers have found social isolation is a risk factor for disease and premature death and multiple studies indicate that a lack of social connection poses similar risks to physical indicators such as obesity. From an evolutionary standpoint, our reliance on our social circles has ensured our survival as a species.

“The research is showing that keeping socially connected to your community, whether it be through church or seniors programmes or the activities programme that we run specifically for people that have memory impairment is just as vital as being physically active,” Ms Fay said.

“And challenging yourself too — trying new things, joining new clubs, learning a language — those are all things they’re saying is the best in terms of prevention.”

These are termed as non pharmacological therapies and are touted as the best form of treatment for dementia. Music therapy, art therapy, pet therapy and exercise classes are all offered within the charities therapeutic programmes.

Lead role: dementia care trainer Marie Fay works with a client in his house in Hamilton Parish