Alzheimer's disease and dementia affect 1,500 families in the East Kootenay, yet many people don't know much about them until they are suddenly faced with the reality.
The Alzheimer Society Canada has launched a campaign called "See Me — Not My Disease," highlighting dementia and trying to eliminate the stigma that newly diagnosed patients deal with.
Here in the East Kootenay, Darryl Oakley is working towards that goal while helping families become caregivers.
Oakley is the Regional Psychogeriatric Caregiver Support person for Elderly Services at the Cranbrook Health Unit.
"One of the things I'm trying to do is reduce stigma," Oakley said.
While his focus is on caregivers and supporting families, Oakley has access to a wide array of information and resources for all parties involved. He covers the entire East Kootenay region from Creston to Golden and the Elk Valley, but he is based out of Cranbrook. Within the region, he said there are 1,500 families dealing with dementia every day.
"It's a bit higher in the East Kootenay than other areas, and that's really about the demographic," Oakley said.
Caregiver Support workers help in a number of ways. Oakley said every family that comes to him has a different need, and it's his job to listen and come up with a solution. He can provide information on home care, facility placement and palliative care if the situation calls for it.
"It's the entire dementia journey that I work with families," Oakley said. "It's really to offer support."
The first step is the diagnosis, and then for Oakley, getting the right information for the right patient.
"We start with a ton of information," he said.
A diagnosis often happens when the patient or caregiver starts to notice changes in behaviour. If they come to Oakley first, he refers them directly to a physician for a thorough check up. The doctor then refers the patient to Elderly Services if they would like to access support there.
The needs of every family are always different, as the diagnosis of dementia or Alzheimer’s disease depends on what stage of progression it is at.
“They always have different needs when they come in,” Oakley said.
Included in the hand-out information, is always where and how to access support for caregivers.
“The whole goal is to make sure they know they are supported,” Oakley said.
Across the East Kootenay are a number of support groups. In Cranbrook, services are offered on the second and fourth Monday of each month from 1 p.m. to 3 p.m. at the Joseph Creek Care Village Board Room. In Kimberley, services take place at the Kimberley Special Care Home’s The Pines Day Program Room on the first Thursday of every month from 1 p.m. to 2:45 p.m.
Oakley said the caregiver support meetings are invaluable.
“Those are a really important piece for caregivers,” he said.
Interior Health provides the funding for the groups in the area. They often assist families dealing with cognitive decline, or dementia, but other illnesses related to aging can be supported there as well. To be eligible, the patient must be over 65. These groups are facilitated with help from the Alzheimer’s Society of B.C., which provides services across the province. Oakley said they deliver services with the help of health units like the one in Cranbrook.
“It’s a big province, and not a huge society,” he said.
The society tries to bring seminars to the East Kootenay at least twice a year, but currently does not have an office in the East Kootenay.
Oakley said the services provided by the health unit vary. Sometimes he has to track down information for patients and their family in their mother tongue – which can be tricky. He remembers having to network with the Alzheimer’s Society of Australia once to find information pamphlets in a particular language.
Oakley says that networking is one of the most important parts of his job. He has a great relationship with Interior Health geriatrics specialist Dr. Randy Grahn, who is based out of Creston.
“That’s what he’s there for – to help us out,” Oakley said of Grahn.
Networking is key to the seasonal Kootenay Caregivers Network newsletter as well. The newsletter is produced several times a year, with Oakley often contributing. It highlights certain issues for caregivers and provides information on where to access support groups. It also highlights research into dementia and Alzheimer’s disease.
See Me – Not My Disease is celebrating patients across the country who live happily with the disease, in an attempt to reduce the stigma that many newly diagnosed patients experience. This story is the first in a series in the Townsman/Bulletin looking at what it means to receive a diagnosis of dementia, and what services are out there for caregivers and patients.