This is the last in a series of five blogs about nursing home care.
My old friend Billy called me recently to ask:
“What the hell is ‘person-centered care’ supposed to mean? I toured three nursing homes and each of them gave a different answer.”
Billy’s wife has vascular dementia, and it’s getting too difficult for him to handle her care at home.
“I had been told to choose a home that gives person-centered care,” he told me, “but one home described that as ‘the person comes first’ though they couldn’t say exactly what that meant. Another said the person could choose what they wanted to eat at every meal. And the last one said they learn from the family all the person’s quirks and try to work around them.”
Billy had stumbled upon the confusion that surrounds person-centered care. Although the term itself has become ubiquitous, sometimes it amounts to little more than a marketing tool.
Institutions are slow and reluctant to change. True person-centered care overturns the relationship between the resident, the caregiver and the institution. It is based on what’s important to the one being cared for rather than what’s convenient for the organization. Consequently, it’s hard to implement and thus hard to find perfect examples.
But increasing numbers of care homes are making an effort to move in that direction, as shown in the responses to Billy’s question. What follows here will help you understand the basis of person-centered care, and how to recognize it even when it’s only partially implemented.
The first barrier to this kind of enlightened care is the widespread stigma affecting people living with any kind of dementia. Two private duty aides working for a good friend of mine assured me one day that my friend, who did not have dementia, was much better off at home because nursing homes were full of “demented people who don’t know anything anymore. There’s nothing inside their heads.”
Care homes must screen their prospective staff for any sign of attitudes like those that devalue people living with cognitive disorders, because the way we view people affects how we treat them.
Good care begins with respect. That’s what is missing also in the following interactions.
We’ve all probably seen a worker in a busy nursing home come up to someone in a wheelchair, release the brakes and wheel them off somewhere without a word of greeting or any hint about where they’re headed. That amounts to treating someone like an object, not a valued human being.
Janice arrived one morning to find an aide dressing her mother. She knew her mother could do most of it herself, but the caregiver had seven other people to dress that morning and said it was faster to do it all herself.
Not allowing someone to use the abilities she has is disempowerment.
In good care, the person is more important than the task. If supporting the person’s strengths is highly valued and the task comes second, the caregiver will facilitate the resident dressing herself. This takes time and wreaks havoc in an institution where workers are expected to check off jobs-completed against a clock.
Person-centered care becomes a partnership in which an activity, such as getting dressed, is done with the person, not to or for them. In that way, familiarity and connection are established.
The family plays an important part in helping the staff understand their loved one’s history and likes and dislikes.
When my mother was living in a nursing home late in her dementia, I compiled a history of her life in photographs and hung it in her room. The attention and enthusiasm it drew from her care partners made me regret that I hadn’t done it much sooner.
The picture of the resident is further filled out by learning her preferences. Her choices—when to wake, when and what to eat, and when to go to bed—are what determine her schedule, not the convenience of the institution.
New residents who continue on a schedule like the one they have followed most of their adult lives adjust more easily to living in a new environment. And having choices maintains some of their autonomy.
The crucial thing to observe when you tour a memory-care unit is the relationship between staff and residents. Does the care partner engage the resident, calling her by name and in a warm manner? Is her tone natural, rather than an “elder speak” version of baby talk? Does the resident look relaxed and engaged? Do they often look into each other’s eyes?
Such a relationship is close to impossible to establish without dedicated staffing. Most care homes rotate their staff. That is, they move workers around from one unit in the building to another. That interferes with close relationships forming between resident and caregiver. With a dedicated staff, a resident has the same care partner every day.
That continuity fosters the close connections that are essential to someone with dementia. It ends their isolation, gives them a sense of security and trust, and creates a sense of belonging.
And the care partner feels more satisfaction: knowing the resident better, she is more able to solve problems, is more alert to new problems and simply cares more.
Anna had been Sam’s care partner for two years. His verbal communication was compromised, but because she knew him so well, she was able to understand his gestures and facial expressions.
She returned to work one Monday morning and learned that over the weekend, Sam had struck out at an aide trying to bathe him. A different care home might have resorted to giving him an antipsychotic drug. But this home knew to wait until Anna came back; she would solve it.
Anna suspected that the weekend aide had not respected Sam’s strong need for privacy. First, she checked him gently and carefully for any signs of pain, and when she found none, she left instructions that Sam should not be bathed on weekends.
A helper who cares—and is well-trained—will see a forceful expression as an attempt to communicate, rather than disruptive behavior.
Dedicated staffing is a big factor contributing to successful person-centered care. It encourages relationships that benefit residents and staff, and it increases staff retention.
In ”Dementia Beyond Disease,” G. Allen Power, MD, who specializes in dementia care, writes, “Any organization that does not provide dedicated assignments offers a lower quality of care than they could otherwise. End of discussion.”
If you can’t find a care home with dedicated staffing, be sure to choose one that has a low staff turnover rate.
The needs of a person with dementia—for security, trust, affection, a bit of control, connection, meaning—are all best met in the context of relationship.
A mutually caring relationship is at the very heart of humane care.
Workers who are open to close relationships with people in a memory unit are valued and respected. And they in turn treat residents with care and respect. You can pick up on that good will when you visit.
I remember arriving at my mother’s nursing home to visit her, and being greeted warmly by the receptionist and everyone I passed. I found my mother in the activities room, happily stroking a sleeping puppy on her lap. The nurse had brought in her own new pet especially to share with my mother. I thought how lucky my mother and I were to be part of this community of kindness.
I wish that for you and your loved one too.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
