To provide emotional support is the primary aim of the Alzheimer’s Family Support Group which meets once a month in the activities’ lounge of the King Edward VII Memorial Hospital.

“We are a gathering of persons who have lived or cared for someone with the disease,” said facilitator Julie-Kay Darrell. “We have support group meetings, family meetings upon request, telephone calls, and sometimes community education classes, as well as caregivers concerns.”

Mrs. Darrell is the group’s secretary, She said there are only about six active members who serve as president, treasurer and assistant treasurer.

Unable to secure statistics on the incidence of Alzheimer’s locally, Mrs. Darrell said she believes the problem is widespread. “I think it’s a lot bigger than people realise. I’ve found it impossible to get statistics so it’s difficult to say for sure,” she said.

“I do get a number of calls each year. Last month I had five. People ask me about the support group and about the disease. I go to the homes and meet with the family members and give them advice on the do’s and don’ts,” she said.

She believes many families struggle quietly, never attending meetings and getting little to no physical and emotional support.

“We usually have about eight people attend a meeting,” she said. “My goal is to have one family member representing each patient in Bermuda attend.”

If the group saw those types of numbers, Mrs. Darrell feels it would be much more effective in addressing the needs of families suffering with the disease. She thinks it might also be easier to gather statistics.

The small group does not have very much money and survives on volunteers and a money made in a few fundraising activities. “I can usually call on some of my personal friends to help us with things like selling tags,” she said.

But more than funding, Mrs. Darrell said the group needs support volunteers. “I feel that if we had more volunteers in our support group who have lived with family members who have or had Alzheimer’s Disease or dementia, they can become an outreach for other family members,” she said.

For those interested there is the prospect of international conferences and workshops to attend. “They are for anyone who is interested and wants to learn more about the disease,” said Mrs. Darrell.

In fact Mrs. Darrell was one of two members who attended a four-day Alzheimer’s workshop in May.

The event was held at the Methodist International Centre in London, England and concentrated on how to set up an effective Alzheimer’s Association.

Mrs. Darrell said: “In some of the larger international countries, they are able to have Alzheimer Associations, with financial backing, manpower and plenty of volunteers. We will need to build on our volunteers long before we can become an association.”

“We, the Alzheimer’s Family Support Group, as few as we are, need to expand the awareness of this disease, we need you, the volunteer,” she added.

Although she takes every opportunity to broaden her knowledge on the disease and on support for sufferers and their families, she is disheartened at the lack of support from Government.

“The Minister has never attended our functions,” she said. “ We send her an invitation and she never even responds.”