Calling out for help: First Link® Dementia Helpline offers a lifeline for caregivers

British Columbia

Marilyn and Wally Garrod have always lived an active lifestyle with their family, packing up to spend time in their summer cabin each year and kayaking on the lake. In the years following Wally’s diagnosis of dementia, they continued to stay active and engaged in the activities they loved with the support of friends and family – until a sudden decline in Wally’s motor skills this spring when he began requiring more support than Marilyn was able to provide, which left Marilyn feeling overwhelmed and unprepared for this next level of care.

Marilyn and Wally smiling together.

After a night without sleep, Wally was unable to get himself out of bed and Marilyn, exhausted and unsure where to turn, called the Alzheimer Society of B.C.’s First Link® Dementia Helpline.

“It was a life saver,” Marilyn says. “I was able to cry and talk and they provided me with support. There was some immediate care that I needed, and they told me how I could access that.”

Marilyn first started noticing changes in her husband Wally 10 years ago. His personality changes, inability to read social cues, and aggressiveness towards Marilyn were attributed to clinical depression. Wally received years of treatment for depression and the Vernon couple even attended anger management classes together, but despite their efforts, they would never be able to go back to the way their relationship was before. They were finding ways to try managing Wally’s dementia long before they knew he was living with the disease.

Marilyn and Wally stayed active throughout Wally’s journey with dementia and recently reached out for support from the Alzheimer Society of B.C. as his symptoms worsened.
Marilyn and Wally stayed active throughout Wally’s journey with dementia and recently reached out for support from the Alzheimer Society of B.C. as his symptoms worsened.

When Wally was finally diagnosed with frontotemporal dementia—an umbrella term for dementia that affects the brain’s frontal and temporal lobes, which are areas associated with personality and behavior—things started to make more sense. They were referred to the Alzheimer Society of B.C.’s First Link® dementia support, which included regular support calls from the staff at their local resource centre. In the beginning Marilyn felt she didn’t need the help. Each time they called to ask if everything was OK, Marilyn assured them it was. Until it wasn’t.

Her call to the First Link® Dementia Helpline provided Marilyn with the emotional support she needed in that difficult moment. The day after Marilyn called the First Link® Dementia Helpline in distress, she received a call back and was provided with coaching on how to move forward and advocate on behalf of herself and her husband. She was walked through the steps to create a plan to get all the support she and Wally needed within their community to keep him safe and comfortable at home, and ensure that Marylin could cope.

“When I really needed it,” she says, “First Link® was there.”

Marilyn continues to stay connected to the Society through a monthly support group specifically for caregivers of people living with frontotemporal dementia. The group is one of several support groups the Alzheimer Society of B.C. is now offering over the phone to accommodate physical distancing. For Marilyn, it has been a source of comfort to have the support of others who are facing similar challenges from a form of dementia many people aren’t as familiar with. The connection has helped Wally ensure he receives care he needs in his home.

“He appreciates it too,” Marilyn says. “I think he feels supported.”

Here to help

Anyone with concerns or questions related to dementia can call the First Link® Dementia Helpline. In addition to crucial emotional support and a listening ear, callers can access information about living with dementia during COVID-19 including practical strategies on a variety of topics, such as behavioural and communication challenges.

  • English: 1-800-936-6033 (9 a.m. to 8 p.m., Monday through Friday)
  • Cantonese or Mandarin: 1-833-674-5007 (9 a.m. to 4 p.m., Monday through Friday)
  • Punjabi: 1-833-674-5003 (9 a.m. to 4 p.m., Monday through Friday)

As the COVID-19 (coronavirus) continues to evolve here in British Columbia and around the world, it's our priority to make sure we continue to provide our programs and services for people living with dementia and their caregivers – and to ensure that anyone affected by dementia feels connected and supported. For more information on dementia and COVID-19, and how the Society is providing support, visit alzbc.org/COVID-19.

How you can make a difference

This summer, people across B.C. are coming together to support the Alzheimer Society of B.C. and people like Marilyn and Wally by participating in the Climb for Alzheimer’s, a fundraiser for the Alzheimer Society of B.C. Participants will hike a collective 70,000 kilometres: one kilometre for each of the 70,000 British Columbians currently living with dementia.

From July 21 until World Alzheimer’s Day on September 21, team up with your friends, families and colleagues to tackle trails across the province. From the Summit Peak Trail in Fort Nelson to the legendary Grouse Grind® in North Vancouver, there are endless journeys you can take to help reach our goal and support more families across the province.

Funds raised will provide access to vital programs and services for families affected by dementia, and enable research into the disease. Register and start fundraising at climbforalzheimers.ca.