“Person-centered care” is the buzzword of the moment in elder care. Nearly every home health care agency or senior care facility will tell you that they offer person-centered care. But what does that mean?
For eight years I was the main caregiver for my mother, Judy, in my home, in assisted living, a rehab center, a “memory care” facility, and a nursing home. She had vascular dementia and probable Alzheimer’s disease, and as she needed more assistance, I learned what makes person-centered care special, and how it could help me feel closer to her.
When my husband and I invited my mother to move in with us and our young children in 2005, I knew nothing about person-centered care. Like many “sandwich generation” parents who find themselves suddenly taking on the role of caregiver for an aging parent, I was used to thinking primarily of myself and my children. When she moved in I paid little attention to what my mother might be feeling as she lost so much all at once—her memory, home, car, independence, and confidence. For several years I would think of caregiving simply as a series of tasks, and my time with my mother as duty, not pleasure.
I was fortunate to live next door to a woman who leads workshops on person-centered care for an international organization (The Eden Alternative®). I also attended gerontology conferences where experts spoke about person-centered care, and I read many books on the subject. Then, after Mom moved into assisted living, I tried to practice what I learned.
To me, person-centered care means that we take time to connect with the person as a unique individual. Even if a person cannot speak, as in late dementia, they often express those feelings and needs in other ways—through their eyes, their facial expression, and their body language. When talking to Mom, I found that if I paid close enough attention, I would almost always see a reaction—a raised eyebrow, a twinkle in her eye, a furrowed brow, a puff of a laugh through her nose like a tiny set of bellows.
To me, person-centered care means slowing down enough to just “be” with the person for a few minutes—to look beyond the endless to-do list of caregiving and enjoy the person. Person-centered care also builds on the person’s strengths and what they enjoy. Through the final stages of dementia, Mom seemed happiest outdoors or listening to music.
Unfortunately, with Alzheimer’s disease and other dementias, a stigma remains that people with dementia are not fully “here,” that they are no longer themselves. Caregivers often treat them accordingly—as a diagnosis, not a person. A simple example is when I accompanied my mother to a rehab center after she fell in assisted living and fractured her pelvis. On Mom’s first day in rehab, when the physical therapist pushed Mom to walk a long distance in order to evaluate Mom’s pain threshold, Mom cursed at her and refused to walk farther. The physical therapist blamed Mom’s behavior on dementia. “We’re used to seeing that kind of resistance,” she told me. I later told the therapist that Mom was swearing at her and refusing to walk farther not because of dementia but because Mom was in severe pain.
If your loved one needs a rehab center or other care facility, how do you find one that is truly person-centered? I suggest visiting, watching and asking questions. Do the staff offer hugs, hold the residents’ hands, offer to dance with them, look them in the eye and talk to them? Or is it all business, with residents left alone for hours with no human interaction? When an aide carries a dinner tray to a resident, do they plop it down with no comment or do they take a moment to smile, make eye contact and say hello, using the resident’s name? When the aides feed those who must be spoon-fed, do they talk only amongst themselves, or do they, again, make eye contact with the residents they are feeding and talk to them? Do the director, nurses, social workers and activities directors model person-centered care? Three examples of truly person-centered care are nursing homes that are part of The Eden Alternative registry; the Green House Project®; and the Lakeview Ranch model.
Care at home can also be “person-centered,” or not. When a caregiver at home lacks enough support, caregiving can easily fall into a replication of the kind of care found in a typical institution: care that is task- and schedule-oriented instead of person-centered, with interactions that exhaust, frustrate, and deplete everyone involved. To learn more about person-centered care in the home (and “person-directed” care, an extension of person-centered care), visit Eden at Home®, a recent initiative of The Eden Alternative.