The fourth annual Early Onset Dementia Alberta (EODA) in partnership with the Alzheimer Society is hosting the fourth annual Building Dementia Awareness Conference next month in Red Deer. It runs Nov. 18th-19th at Holiday Inn South.
Dementia is more common in people over the age of 65 but it can also affect younger people. Early onset of the disease can begin as young as the 30s, 40s or 50s. To that end, EODA provides a voice for those families affected by dementia, organizers say.
“We just formed a Foundation this year – it’s called Early Onset Dementia Alberta Foundation. We are also setting up a web site for that, and we have our facebook page as well,” said Bernie Travis, EODA conference chairmen and coordinator.
She noted that 167 people attended the conference last year.
Meanwhile, as mentioned, this year’s conference – which runs Nov. 18th-19th at the Holiday Inn on Gasoline Alley (33 Petrolia Dr.) – promises much in the way of helpful, informative session with several top speakers addressing an array of topics.
“We have ‘Living in Continuing Care’ as the theme for Friday and ‘Living in Your Community’ for Saturday,” she said.
Things kick off on Nov. 18th with registration and breakfast, plus opening remarks from local dignitaries.
Highlights include keynote speaker Dr. David Sheard of Dementia Care Matters, based in England; Dr. Duncan Robertson of the Alberta Dementia Strategy, and Mollie Cole of the Strategic Clinical Network Alberta among other special guests.
On Saturday, Nov. 19th, keynote speaker Sheard will again be speaking, followed through the day by Peter Priednieks (also of Dementia Care Matters) and a session with the Alberta Caregivers Association among several others.
As to this year’s keynote speaker, Sheard established Dementia Care Matters in 1995 and is its founder/chief executive. According to a provided biography, his main purpose is to show that dementia care is about emotional care, which something everyone needs. “Over the last 30 years, (he) has developed a reputation as a challenging and motivational speaker in the UK, Ireland, U.S. and Canada.”
Sheard’s ‘Butterfly approach’ is a holistic, person-centred approach to enhancing culture of care by improving the ‘lived experience’ of people with dementia.
“He defines ‘lived experience’ as the minute-by-minute experience of the person with dementia in the reality they presently live in. Sheard has developed a network of over 100 Butterfly Care Home projects in the UK, Ireland, Canada, United States and Australia.”
EODA has representatives and members in Calgary, Edmonton, Grand Prairie, Lethbridge and Red Deer. EODA is committed to building dementia awareness and advocating for persons with dementia, care partners and families. We believe that through working together we will deliver the message of hope, inspiration, connectivity, empowerment and innovation for people to live an active dementia life.
According to the EODA web site, EODA provides a voice for those families affected by early onset Alzheimer’s and dementia.
“Officially, the diagnosis of ‘early onset’ applies to anyone diagnosed before the age of 65, but most of our partners were diagnosed before the age of 60, and some of our group before the age of 50.”
The diagnosis can be devastating, as often they lose jobs, their driver’s license and their independence, notes the web site.
Currently, the four areas of concern EODA is focused on include home care, the lack of services/programming, long-term care (the majority of long-term care facilities are not in the position to deal with younger people who have dementia and are still physically very active) and diagnoses and medical support.
Travis said that overall, awareness of the issue is improving but there is still a ways to go.
“Most of the focus is toward those over 65 – the bulk of money is being directed that way and so is the type of care that we have,” she explained, adding the gaps are when is comes to aiding the person with dementia under 65 who is still physically fit, active and mobile, she said. “We have problems with diagnosis, we have problems with looking at the living in the community – where can that person go and where can that person fit.
“We need more presence – we need to be seen, we need to be heard. We also need to have changes made, because financially there are also huge voids.”
For Travis, the main goal for the conference is to build awareness that, “We can work together and change the face of dementia.
“We want to build bridges.”
For more information about EODA or the conference, check out www.EODAF.ca or find them on facebook at ‘EODA 4th Annual Building Dementia Awareness Conference’.