When Chief Joel Abram learned of a proposed program to help First Nations people and families living with dementia, he saw the initiative as a way to fill a gap in sorely-needed support in his community.
But since the launch of the First Nations First Link program, the issue has struck closer to home than he likely anticipated.
The chief of the Oneida Nation of the Thames, located outside London, Ont., said it started when his aunt realized something wasn't quite right and her memory wasn't the same as it had been.
After she spoke with First Nations First Link co-ordinator Robin Shawanoo and had testing done, it was determined Abram's aunt had early onset of Alzheimer's disease. Through early detection, Abram said she has been able to get the proper help sooner.
"At first, it was kind of hard for her to come to grips with the fact that she does have this," he said. "Now, we're going to be setting up a family meeting so the whole family knows what to expect from here on out."
Individual and family support, crisis intervention and long-term care preparations are among the hallmarks of the program, which was developed collaboratively with the Alzheimer Society London and Middlesex and Oneida Nation of the Thames. The program will be featured Tuesday at the Aboriginal Health Forum co-chaired by Abram in Toronto.
First Link takes a holistic approach to the illness by integrating elements of culture, tradition and spirituality in administering care. Part of that includes use of an adapted screening tool created specifically for the First Nations community.
Shawanoo has modified the Montreal Cognitive Assessment, or MoCA, a screening test designed to help health professionals detect mild cognitive impairment, making it more "culturally appropriate."
For example, rather than have individuals identify a lion, rhinoceros and camel, the animals have been changed to a bear, wolf or turtle -- each representative of Oneida clans, Shawanoo noted.
Another change is the inclusion of a 3-D circle resembling a medicine wheel -- a predominant symbol across every tribe -- taking the place of the 3-D cube featured in the original MoCA, Shawanoo said.
In counselling work, he has adopted use of inner child therapy which incorporates spirituality. Assessments and counselling are done in a person's home, with early and direct intervention that is tailored for their needs, he said. Counselling support is also extended to family members.
"Someone may come in and it's `I'm stressed out trying to deal with my mom who is wandering and always forgets who everyone is,"' he said. "It could be somebody who knows about the stages of dementia and knows towards the end it's not very pretty and they want to be pre-prepared for the person's death and starts grieving before it happens. It's pretty diverse -- it's whatever that person is dealing with."
Bereavement support can be offered privately or in a group, and the latter can include traditional drummers and an elder in the process. Shawanoo said another aspect that makes the bereavement group unique is its duration, as the process is three months long.
"At the end of three months, if you feel you need it, you just come back, so it just keeps circulating, it just keeps going around which, again, is another First Nations principle that everything is circular," he said.
"Here, we have a therapy program that is not time-limited, it's not session-limited. It's come as you are, come as you need it and it just keeps going."
They also serve patients whose dementias may have been induced by abuse of substances or solvents, he said.
There is high prevalence of diabetes, obesity, kidney failure and high blood pressure in the First Nations communities, Shawanoo noted. Combining all of those things, there are significant risk factors for multi-infarct heart attack and stroke vascular damage which can contribute to a form of dementia, he said.
First Link public education co-ordinator Susan Oster has visited elementary school classes and has also done work with seniors to discuss dementia and lifestyles factors.
"It's a way of saying `OK, we want to bring the information to you and make it more accessible' and to make sure that there's not that gap, so people are not feeling we're disconnected from the rest of the community," Oster said.
Oneida has a total membership of more than 5,100 people, making it the fifth largest First Nation in Ontario in terms of population. More than 2,200 live on the reserve, with many others living in surrounding cities of London and St. Thomas, Abram said.
Betsy Little, executive director of the Alzheimer Society London and Middlesex, said since the January launch they're already making an impact. Shawanoo had 16 referrals to see clients and make assessments when he first arrived, she said.
At the outset, Little said people were coming forward saying they wanted to be seen or assessed. However, she acknowledged there have been "bumps along the road" due in part to the stigma that is attached to the disease within the community.
"What we're encountering is that people are not wanting to come forward very quickly," she said.
"They need to really know that there's a rapport established, and what we're really focusing on is more education sessions, more information sessions and just being out there in the community on a regular basis," she said.
Little said she feels stigma stems from the fear around the illness.
"There's this whole stage of denial, and the denial comes from not only the person with the disease, it also comes from the caregiver. It's a combination," she added. "I also think that people that have the illness in the early stages they're trying desperately to hang on to their independence, and as a result, they don't want to come forward and say that they have a problem."
For his part, Abram said he plans to help spread the message about the program on community radio and hopes to hold community information sessions in the future.
"I think people kind of know it's a disease, and they have to understand that, and I think as more people understand that they're going to know better how to deal with it."
