A DAY IN THE LIFE — Terrace Rose residents are seen with Holly Gerein (standing), who developed an experience that would enable care staff to have a glimpse into the life of a resident with Alzheimer’s disease. It has been transformative for both residents and staff at Terrace Rose. (photo: MSJ Home)


By Sandra Kary

A glimpse into the life of a resident with Alzheimer’s

Many of us have family or loved ones that have been affected by dementia or Alzheimer’s disease. Good days and bad days . . . that’s how we usually rate and report the day, often from our own perspective. But what about their perspective — what makes their day good or bad? And how can we know?

This was the exact question that inspired Holly Gerein, Care Manager at Mont St. Joseph Home in Prince Albert, to develop an experience that would be a glimpse into the life of a resident with Alzheimer’s disease. Terrace Rose is a secure neighbourhood within the facility that has 20 cognitively impaired residents. What might it be like to live a day in their world? She approached her facility leaders with a proposal that, according to her literature search, had not yet been done. What if some of our staff lived as a resident for a full eight-hour shift? What might we experience and learn about living with and caring for our residents?

And so the experience took shape. Twelve Terrace Rose staff volunteered to experience one (paid) shift as a resident, not a caregiver. With the necessary approvals and communication (facility lead, ethics committee, resident families, other caregivers and visitors), these individuals agreed to a host of limitations aiming to simulate a cognitively impaired experience.

Goggles blocking peripheral vision were donned (limiting vision without creating imbalance or sickness), and one earplug was worn (to impair hearing). Participants could only walk if assisted by a caregiver — typically once per hour. They could talk to other residents, but not to the staff. They ate the same meals as other residents, were given medication (placebos), were assisted to the toilet, and followed the sleep routine of the shift.

Can you just imagine?

After their shift as a resident, each participant debriefed with Holly and supplied a written evaluation within 24 hours. Once all participants completed their experience (over the course of a few weeks), they gathered to debrief together, and then in a forum-style with the general staff, shared their stories.

The input was profound. There were high marks for good nursing care, good food, and cleanliness, but almost every one remarked at how long, long, LONG the day was and how bored, lonely, frustrated and helpless they felt. Frustration arose from the limited ability to communicate preferences with recreation (TV or activity), temperature, mobility, and personal attention versus privacy. Anxiety filled the empty spaces between meals, meds and sleep. Many felt powerless, invisible and awkward.

No doubt these participants had many recommendations to offer. Some were fairly simple adjustments to make — turn up the heat, offer a sweater or blanket, choose more relatable TV programs (who are the Kardashians anyway?). To address and alleviate resident boredom and helplessness, the facility leadership decided to add a new full-time permanent staff — a recreation/care worker who would create meaningful activities like baking, exercise programs, etc.

In addition to this, the 12 participants — those with a first-hand experience of boredom, loneliness and helplessness — began to engage the residents more in their day: an extra smile or touch, offering more communication, choices and more tasks to do. Residents were more than happy to help with folding towels, taking out the garbage, opening blinds and washing and drying dishes.

Something ignited with the staff. Everyone, not just participants, started to take ownership, and, as Holly would testify, “They’ve kind of taken over the place!” The staff have started to share a part of themselves — one likes to do hairdressing, and will find time to do a hairdo or two. Another enjoys reading the paper, and takes time in the morning to sit with a resident to read them a headline or short article. One staff decided to start a 15-minute church service on Sundays — something simple with a few hymns, rituals and the Lord’s Prayer. Friends and family have started coming. Cake is being served. One staff member likes plants, and brought in a few to tend and is getting a resident to help. Staff have started to bring in supplies and things to do, just because they want to.

How do they find time? How in their busy day of caregiving do they do it? They’ve found time because they have replaced the time and energy spent dealing with the restless, anxious and negative behaviour from residents who were likely bored, lonely and feeling helpless. The staff’s own personal experience of being a resident for a day has compelled them to do more, and it’s contagious.

It’s been a year now since the initial staff experience, and the effect remains. If you were to come and visit Terrace Rose today, you might notice that the flurry of the morning routine has slowed down, it’s warm and comfortable, you might smell bannock baking, the TV isn’t blaring during mealtimes, plants adorn the window sills, and residents and staff are doing their chores and living their day together.

There are fewer injuries happening, fewer claims, less of the need for restraints, and less use of half-doors. Residents (and maybe staff) are sleeping better at night because they feel more engaged, needed and appreciated.

Kary is the executive director of the Catholic Health Association of Saskatchewan.

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