A meeting about raising awareness of early onset dementia/Alzheimer’s disease is set for this Saturday at the Sheraton Hotel.
Organized by Early Onset Dementia Alberta (EODA), the meeting runs from 9 a.m. to 4:30 p.m.
Alzheimer’s disease is a progressive, degenerative disease of the brain, which causes thinking and memory to become impaired. It is the most common form of dementia. It can also strike people in their 30s and 40s – and that’s something spokesperson Larry Quintilio wants to bring more attention to.
“What we are trying to do is to get more awareness that these people don’t fit into the system right now,” he said, adding that those under 65 who are diagnosed are typically still quite active and healthy in most other ways. As such, they aren’t ready for the increased types of care that are provided to more elderly patients who may have other health issues as well.
Quintilio knows the pain of watching a loved one battle Alzheimer’s disease. His wife June, who passed away earlier this year, was diagnosed several years ago in her mid-50s.
But even prior to that he began noticing changes in his wife. Symptoms worsened although June didn’t initially want to seek medical attention.
Larry said that by 2005 or 2006, he knew something was definitely wrong. Over the years since, the disease progressed and June received care at the Centennial Centre for Mental Health and Brain Injury in Ponoka.
This weekend, some of the items on the agenda include home care, lack of services/programming, long-term care, diagnosis and medical support. As he points out in this weekend’s agenda notes, issues often arise because the, ‘Typical supports for dementia are based on the belief that patients (and their caregivers) are in their senior years, have adult children, are financially stable and have retired.
‘Often in care, before the age of 65, they typically require less nursing care and more recreational and occupational therapy. However, their dementias mean they need more assistance and monitoring than is offered in assisted living…sadly, the province of Alberta offers few choices and none are directed to the needs of the younger population. Like so many, our spouses do not fit in either assisted living or in long term care.’
Meanwhile, this is also the time of year when the Alzheimer Society’s main fundraiser, Coffee Break, is underway. Folks gather in communities across Canada to raise funds for local Alzheimer Societies and participants make donations in exchange for a cup of coffee. The money raised stays in that province or community to help support programs and services.
Corporations, small businesses, hospitals, schools, service organizations, health-care facilities and private residences are examples of places to host coffee breaks.
As for Larry, recalling the years of watching June’s struggle with the disease is acutely painful. The couple had always enjoyed a full and active life together. So coping with the changing behaviour and thinking patterns of a loved one with Alzheimer’s disease is continuously a challenge.
“The unknown of what’s coming is the scariest part.”
Resources and people are ready to help through the local Alzheimer Society, and Larry said they can make a tremendous difference. He hopes that those just starting out in their own journey of dealing with Alzheimer’s reach out for assistance.
For more information about the Early Onset Dementia Group, call Larry Quintilio at 403-346-8401.
For more about Alzheimer’s in general, call the local office at 346-4636 or visit www.alzheimer.ab.ca.