“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.
Hello, I am an AGNG 200 student at the Erickson School of Aging. I found your post very interesting and in line with my thinking as my class had just done a case study about continuum of care for older adults, in which we discussed some of the best services for the elderly who are in need of personal care. In my research, I emphasized greatly on the importance of connection and involvement between caregiver and patient, which was also the main driving force of your post. One main concern that we had learned in class is the difficulties of providing long-term care. I believe that “person-centered” care at home between family members can greatly reduce the resource needed to cover for patient’s health cares, as a patient wouldn’t need to go to locations such as a care facility.
Martha, Thank you for this article! One of the many lessons I learned from the Eden at Home Care Partner Workshop was about close and continuing contact – which is a way that an Elder can begin to be deeply known by members of the care partner team. This is how I believe we can provide “person-centered care”. Knowing each other gives us the “material” with which to take those few moments when setting down the meal tray to engage with the individual receiving that care. Sustenance in multiple forms! And the beautiful thing about that is both the person being cared for and the caregiver are richer for that shared interaction. In facilities the care that could be given would be vastly different if the traditional care givers were deeply known as well.
Excellent post…so true
Thank you for posting Martha’s story. Her ability to recognize her mother’s subtle needs is exactly why a caregiver’s resume should be secondary to a caregiver’s heart. At Hanson Services, we provide in-home care for adults. We also provide the training and skills one needs to care for an older adult. But kindness and empathy are as important as physical skills, and have to come from the heart, not a classroom. Our care is moment-to-moment and one-to-one, based on our client’s needs, mood, energy and personality at that particular time. This has been our philosophy from the beginning. We don’t use the term “person-centered.” We just call it “care.”
I too entered my caregiving role with my mother as just another task, but every now and then I could just ‘be’ with her and settle into the role. It was always more rewarding when I let it happen.
Thanks for a very helpful & reflective article. I have been very fortunate to have parents who made decisions about their lives & independence. They were able to live in a retirement community that provides independence as well as assisted living as needed. Mom died 2-1/2 years ago & dad has adjusted amazingly well in part because of his active role within the community. I believe it is critical that each of us learn ways to care for parents and family members as they age because in essence we will all reach a time in life where likely some assistance will be needed. Rekindling the ways that families nurtured and cared for each other in past generations is a way to bless on another. Recognizing also that some people will require assistance for all or a great portion of their life, learning to care for them carries the same importance.
On the other end of the spectrum, my husband and I are actively involved in developing ranch communities for foster children. We continue to learn from the many who are foster care alumni new ways & ideas to care for those who are in limbo in a broken system. Ideas spring from hearts and people who truly care and want to make a difference for all humanity.
Thank you for sharing this, Marti. Mom seemed to enjoy being read to, too.
One of the ways we continued to be person-centerd with my husband’s mother, Betty, during her last two years of life, was to read aloud together on many evenings in her tiny assisted living apartment. Though she could not speak much anymore, she had been a voracious reader and a member of countless book clubs, and she still enjoyed stories. We tried to read at least one chapter at a sitting, sometimes more, my husband and I taking turns with the reading.
We continued to do this up until two days before mother died. While so many other activities were challenging as Mother struggled with post-stroke dementia, she loved the times we were together, following the stories, usually knowing where the book was, and laughing and sighing at all the right places. I’ll bet we read as many as a dozen books, and whether she followed the books as entire novels or as discrete short stories did not matter.
In her assisted living community, the staff members also knew about her love of reading, and they always made sure that she got to the once-a-week book club, even though she could no longer actively participate.
Together these two events greatly enriched Mother’s life at time when many things were difficult and she was increasingly frail.