Navigating long-term care with Alzheimer's disease

The transition from living at home to a long-term care facility can be complex for residents and their loved ones and, at times, difficult to navigate.

For Jack Campbell, 89, the transition wasn’t simple.

In 2018, Jack was well enough to leave the Grey Nuns Community Hospital, where he’d been for six weeks, and move to St. Joseph’s Auxiliary Hospital, where he remained for three months, before returning home, says Donna, Jack’s wife of 31 years.

“Jack then started having falls, and it got to the point where I couldn’t get him up,” says Donna. “He fell and hit his head and was taken for a check-up, and while everything was fine and the hospital was willing for me to take him home, I wasn’t able to move him or help him up the stairs.”

Jack, who was diagnosed with Alzheimer’s dementia, spent a short time at a care facility in Leduc, but the travel became too much for Donna, especially during the winter months. “I called the transition nurse. I was willing to bring Jack home while we waited for a place, but we got the call in November 2019 that we had a place again at St. Joseph’s,” says Donna.

Most people moving into a care facility are brought from a hospital or transfer from another facility where they've been a short period of time. In most cases, families only have 24-48 hours from getting a placement to move-in. There are often many moving parts for families to navigate in a short time frame.

Long-term care offers a variety of specialized programs for individuals who have highly complex health needs and whose care cannot be safely provided in their own home or in supportive living.

Pam Gill, resident care manager of Bluejay Gardens, a dementia care unit at St. Joseph’s, has walked this path many times with families, helping them transition into continuing care.

“The resident care manager is the first point of contact with the family,” explains Pam.

Long-term care facilities are designed specifically for residents with complex, unpredictable medical needs who require 24-hour on-site registered nurse assessment and/or treatment. Residents may require medication management, safety precautions if they are prone to wandering or complex end-of-life care.

For people with dementia coming into long-term care, initial assessments are done by a licensed practical nurse, registered nurse, pharmacist and physician along with the interdisciplinary team consisting of physiotherapy, occupational therapy, recreation, dietary, social work and spiritual care. Six weeks later, there is a family care conference where the family reviews the plan of care worked out by all the disciplines as their loved one has started to settle into their new home.

And moving into care can also mean new discoveries.

“I heard that Jack was two-stepping with his walker when there was music on the unit. The music then came on for a waltz, and one of the nurses got up and danced with him. I didn't even know he could dance anymore,” says Donna.

Long-term care staff also provide support to family members and loved ones. When a person moves into long-term care, their loved ones can experience significant grief.

“My door is always open,” explains Pam. “These are tough times. Loved ones can come and have a cry because it's hard to lose that person when they're still there.”

“It helps calm the families down,” says Pam. “They’ve done nothing wrong, but they still have so much guilt bringing their loved one into care. It's breaking their hearts as they're losing their person, loved one, partner, friend. They don't know how to deal with it. They feel they can't do enough.”

Jack is where he needs to be, says Donna.

“When I first got here, I couldn't talk without crying,” shares Donna. “I've come a long way. In the beginning, there was a big void. I’ve come to realize Jack’s better off here. He has more interactions here than he would at home, and there are lots of activities to engage him.”