By Jim Mann
When the long-term care system is revolutionized, as it must be, we should learn from people who live with dementia
It’s time we talked.
No longer can the discussion of the care of people living in long-term care facilities be ignored, be sloughed off, for another day. We have been hearing about the negative experiences of residents in long-term care, and workplace concerns from long-term care staff, for a long time, but the current pandemic has amplified those voices. And their message is resonating.
There is now widespread recognition that we have short-changed the long-term care system in many ways affecting both residents and staff. We have accepted our elderly residents and those who care for them being ignored and relegated to a lesser-than position. Somehow, lost in the shuffle-of-life before the pandemic, was the willingness to turn a blind eye to the needs of the long-term care residents and the many workers.
This was easy to do because the residents were older, and many were living with Alzheimer's or other dementia. Seeming to be lost was their identity as our parents, our siblings and near and dear friends.
When the long-term care system is revolutionized after the pandemic, as surely it must be, we need to learn from the people who live and work there, including persons with dementia. We need person-centred care.
After my father’s debilitating stroke in 1989, a long-term care home became his full-time residence. It was a time when restraints were more liberally used, when process seemed to take precedence over person-focused care. Today, thirty-one years later, some of the same issues of concern remain.
Through research, we have learned a lot over the years about the delivery of resident-focused care and how to provide good and appropriate dementia care. Restraints are recognized to produce negative effects especially for people with dementia. And research has shown that technology, with the many advances, provides positive opportunities for residents and staff alike.
In fact, we have seen examples of iPads and tablets aiding communication between residents and family and friends in this period of isolation. They can also be a positive experience for residents to listen to music, for example. While that’s great news, iPads and tablets are not the magic bullet to solve all care and engagement issues.
What happens in the many moments before and after those happy iPad or tablet interactions? Are residents returned to sit alone in silence with no other stimulation?
Is the focus of staff on the resident and their needs or is their focus on the administrative chores?
My mother, who had Alzheimer's disease, also entered long-term care. When I would visit, I would see many of the residents sitting idly in front of the television with nothing to do. Day after day.
You could sense some residents would have been happy to do something — anything. A short walk perhaps? A short but one-on-one conversation with their care aide? Instead, there would be nothing between the meal and the next coffee break in the morning and afternoon but boredom and loneliness.
Some of these residents may well have come to long-term care from home where they were doing things like sweeping the floor or washing dishes. My question then, is, why does entry into long-term care make such an activity stop? If a resident wanted to sweep the floor, for example, why not let them? Give them a purpose, a reason for being.
Creative thought and a little patience, it would seem to me, would be all it would take to provide quality of life to our long-term care residents. This must be part of the new vision for nursing homes after the pandemic.
Now I live with dementia.
It is too easy for others to categorize older adults, people with dementia, and others with chronic illnesses as one large group of people to be ignored or to denigrate. Like the report during the pandemic of “four deaths in long-term care.” With a person-centred approach, the report would have at least noted four people died.
Dr. Jonathan Evans, a geriatrician, noted that “dementia doesn’t take away your ability to be a human, your humanness . . . dementia doesn’t make you stupid. Dementia doesn’t rob you of your ability to experience joy, to be happy.”
The time to change the model of care to be resident-focused, with long-term care staff recognized for their skills and abilities, is now. I know we can do better.
It’s time we talked. And acted.
Jim Mann, diagnosed with Alzheimer's at the age of 58, is an active advocate focused on meaningful engagement. He is a past co-chair for the VOICES committee at Translating Research in Elder Care (TREC), guiding scientific evidence on long-term care informed by persons with lived experience.
