Virtual dementia support group tested in Wellington County

Video conferencing technology is bridging the gap between rural families who are caring for someone with dementia and support services that are located in larger urban centres.

Since January the Alzheimer's Society of Waterloo Wellington has partnered with Ontario Telemedicine Network sites in Mount Forest, Palmerston, Guelph and Cambridge to offer a virtual support group for caregivers who were unable to attend regular groups.

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"Just the opportunity to go once a month and to be in that room with the other folks that are sharing a similar journey is really something that helps recharge the batteries a little bit," said Kelley Eves, who has been attending the group since its inception.

It always seems to be that we're disadvantaged by the population density and everything is either in Guelph or Kitchener or Cambridge ... That's tough if you want to get out for a program and it's going to mean an hour to drive to the closest location.- Kelley Eves

"I think people don't realize the importance of self care in looking after not only the person that you're treading the journey with in terms of the person with dementia in your life, but also that you need to look after yourself."

Eves, who lives in Mount Forest, is caring for two family members with dementia: her husband Lawrence, who is 62 years old, and her mother-in-law, who is in her 80s.

She attended an Alzheimer's Society support group in Mount Forest about a year ago, but it was put on hold due to low numbers. Eves says only four to six members were attending.

Access based on location

"It always seems to be that we're disadvantaged by the population density and everything is either in Guelph or Kitchener or Cambridge," she said. "That's tough if you want to get out for a program and it's going to mean an hour to drive to the closest location."

I think it's knowing that you're not alone in your community ... To feel supported and not like that's a failure, because often people do very much feel like that is a personal failure.- Kelley Eves

When the original group was put on hold, she said she missed meeting with the other caregivers, learning from their experiences, and receiving encouragement from them.

She thought the virtual group was a fantastic idea when it was suggested, and wasn't put off at all by the idea of connecting with the other group members through a television screen.

"I think it's knowing that you're not alone in your community," she said. "To feel supported and not like that's a failure, because often people do very much feel like that is a personal failure."

Technology bridges a gap

The virtual support group was launched by social worker Colleen Martin, who was looking for a way to revive the rural support groups put on hold due to low numbers. 

She didn't have time to host a group in every small community, but she new the need for support was high.

"We try to provide services to them as we can, but we don't have enough resources sometimes to just provide as much as we like," she said. "I think sometimes they feel very isolated ... like there's a limited amount of services for them."

When Martin spoke about her dilemma at a networking meeting in June 2016, an Ontario Telemedicine Nurse suggested hosting a virtual support group using the agency's technology.

Everybody I've spoken to has been very positive about the ability to meet with their peers. That's just the biggest thing.- Colleen Martin

Four OTN branches agreed to participate in a pilot project, which was launched in January and will be reviewed in June 2017. Martin hosts the group out of the Mount Forest location and there are group members participating at locations in Palmerston, Guelph and Cambridge.

Although there were a few "hiccups" at the beginning, she said the group members have become comfortable with each other and with the technology.

Room to expand

"I find that the care partners are all in very unique places in their care giving journeys and so they are excited to share what they learned with others and also to learn from others," she said. "Everybody I've spoken to has been very positive about the ability to meet with their peers. That's just the biggest thing."

The group, which started with 10 members, has already grown to 20. 

Martin said she's thrilled with the pilot's success, and she's not the only one. Officials with OTN are paying close attention to this and other health care projects using video conferencing technology. 

I know that technology standing between you and the other person can be a little bit daunting at first, but as the facilitator engages with you ... it does become more comfortable.- Julie Ridgewell

In total, there are now seven Alzheimer's Societies in Ontario using OTN technology to host virtual support groups, all of which are in southwestern Ontario.

"It does take a little bit more intentional facilitation," said Julie Ridgewell, regional lead. "It's something that OTN, as we're integrating technology solutions into healthcare, we're thinking, 'What does this mean to maintain the integrity of this therapeutic relationship?"

Martin contacted Ridgewell before launching her support group, looking for advice on how to work with the video conferencing technology.

Ridgewell told her it was the simple things that would make all the difference: look into the camera, not at the screen; address group members by name; and don't forget to include all group members - even those at satellite sites - in discussions.

"I know that technology standing between you and the other person can be a little bit daunting at first," she said, "but as the facilitator engages with you, no matter what site you're at, as you're able to communicate and se and hear and interact through the video system, it does become more comfortable."

She says the agency hopes to see the Martin's pilot succeed, and then replicated across the province in the coming years.