(The second story in a two-part series: first part)
Wearing a cranberry-coloured top, black pants and comfy shoes, Dorothy Leclair looks like a school nurse as she rolls a luggage cart stacked with her laptop computer, manuals and brochures out of a boardroom at Coquitlam's Glen Pine Pavilion.
But the Port Coquitlam woman is not just a nice lady dispensing bromides and pamphlets. As BC Alzheimer Society's First Link representative for the Tri-Cities, Leclair has the zeal of a missionary and the fierceness of a warrior. She attacks the myths, shines a light on a disease that frightens most people and, with experience backed by 13 years as a caregiver and volunteer, rallies families for the challenging journey ahead.
"This diagnosis is not the end of a meaningful life," Leclair says, "it does not change who they are."
Dementia is rarely a topic of conversation unless you're living with it but perhaps it should be, says Leclair, acknowledging that while she is in grief over the disappearance of Coquitlam's Shin Noh, who suffers from Alzheimer's, she is also amazed at the outpouring of support for the family of the missing grandfather.
This means people in the Tri-Cities are talking about Alzheimer's, Leclair said, and thinking about ways to keep elderly people with dementia safe.
MORE AWARENESS NEEDED
But more awareness is needed to end the stigma attached to disease.
Alzheimer's Canada anticipates a doubling in the number of people with dementia or cognitive impairment by 2031 and has called for a national plan to recognize and alleviate the burden of the disease through improved education and more services, research and training.
"We will not recognize and put the resources we need to put a dementia framework together for Canada until we recognize the prevalence of the disease," asserts Leclair.
For families with coping with a recent diagnosis of dementia in a loved one, the news can be terrifying. Leclair works to relieve the uncertainty by helping families understand the diagnosis, what it means and how to deal with it, although she said she usually gives the family a few weeks to come to terms with the diagnosis before calling and offering to link them with resources.
Sometimes, families choose not to be contacted. "They soldier on," Leclair said.
And all too often, the next time she hears from them is when they are in crisis. She understands why some families choose to deal with the disease on their own but notes there is no shame in reaching out for support.
A TEAM OF PEOPLE
"Eventually everyone on the dementia journey needs a team of people. We can't do this alone. We encourage people to understand it's a sign of strength when it's time to call in the troops."
Alzheimer's is one of several diagnoses in the dementia family and the most common. Age is the most significant known risk factor for Alzheimer's disease but it's not a normal part of aging and most people do not develop the disease as they age (people as young as 40, however, have been known to be diagnosed). I has has no cure, although there are medications that can slow the progression (see sidebar) and it will require changes to lifestyle for many families.
One of the biggest challenges is dealing with a loved one who can no longer communicate their wants, needs and emotions. Leclair said it was painful to watch her own mom transform from a vibrant, intelligent woman to someone who was dependent and uncommunicative.
"It's death by a thousand subtractions," she said. "We lose our person inch by inch, not all at once."
But "we help people to know at core is a person who can be reached and we need to give ourselves permission to see the changes."
When she died in January, Leclair's mom hadn't spoken in two years but her eyes "flew open" when Leclair entered the room.
"We all knew she knew that I was there," she said.
And she noted, "At core, we can all be reached as people, we all need to know and believe it."
To relieve stress, Leclair dug up her front yard to plant an Alzheimer's "therapy garden" and told others about her experience.
AN EARLY DIAGNOSIS
Now, she advises families to connect and socialize as much as they can. One program that has proven to be a success is Mind in Motion, a fitness and social program for people with early stage memory loss at Dogwood and Glen Pine in Coquitlam. The program provides a supportive environment for caregivers and stimulation for people newly diagnosed with the disease. People play games and do a few exercises together.
Families also need to know that getting an early diagnosis is a good idea. Too often families ignore the warning signs, such as a reduced ability to do everyday tasks, Leclair said, but if they face the truth they can make a plan - and include their loved-one in the decision-making.
This is at the heart of her work, says Leclair, opening up families to the truth, and the possibilities, so they can act with confidence when the disease progresses. It's better than the alternative - ignoring the situation won't make it go away while facing it head on will at least give families a chance to meet the challenges with dignity and strength.
"If we honour someone's wishes, when they can no longer speak, we are better at making decisions for them," Leclair said. And although the disease disrupted her mom's ability to understand, remember and communicate, and although the experience was fraught with challenges and emotional highs and lows, there was this:
Deep down, her mom was there for her to the end, and you get a sense that Leclair was glad to be a part of the journey.
INFORMATION AND RESOURCES
here are many resources available in the Tri-Cities for people with dementia and their families, including:
support groups;
Mind in Motion, a fitness and social program;
dementia education workshops, such as Grief and Loss, Shaping the Journey, Living with Dementia, Accessing Services, Transition to Residential Care;
tele-workshops for family caregivers who can't easily get out of the house; contact the First Link resource centre at 604-298-0711.
THE THREE STAGES
There are three stages of Alzheimer's disease:
Early stage - mild impairment, including forgetfulness, communication difficulties and changes in mood and behaviour.
Middle stage - a greater decline in the person's cognitive and functional disabilities; assistance with many daily tasks will become necessary.
Late stage - person is unable to communicate verbally or look after themselves; care is required 24 hours a day and the goal of care at this stage is to continue to support the person to ensure the highest quality of life possible.
Global Deterioration Scale is also called the Reisberg Scale and is used to measure the progression of Alzheimer's into seven stages.
UPCOMING WORKSHOP
Visit Terry Fox Library on Wednesday, Nov. 6 from 1:30 to 3:30 p.m. for a workshop offering basic information on dementia, presented by the Alzheimer Society of B.C. To register, visit the Terry Fox Library at 2470 Mary Hill Rd. in Port Coquitlam or call 604-927-7999.
