It is the fear of everyone who has parents or grandparents who might need special care as they approach old age: What if they are not able to remain active and involved? And as a result of their condition, what if they are not treated with dignity and respect?

 

Person-centered care (PCC) began in response to precisely this situation in nursing homes, as a way to approach residents—particularly those with dementia—who might be disengaged and prone to react with fear or aggression to caregivers.

 

Dementia care costs are projected to double by 2040, and new research from the RAND Corp., published in the New England Journal of Medicine, shows that with the aging baby boom generation, the country is unprepared for the coming surge in the cost and cases of dementia. By 2040 there will be an estimated 9.1 million people with dementia, compared with 3.8 million who currently have the diagnosis. This staggering number will cost billions in health care dollars as there will be fewer children to be informal caregivers for them.

Providers will need to be more educated in this specialist area, whether dementia care is provided in the community by a service entity, family member, friend, or in communal living.

 

The University of Buffalo’s (UB’s) Institute for Person-Centered Care, working to further enhance this new method of caregiving through research and scholarship, is the first of its kind in the United States.

 

The institute takes a collaborative, interdisciplinary approach, bringing together researchers, educators, health care providers, and community-based programs to develop new care and services and share them with the public.

 

The institute began with interactions between UB and the Western New York Alliance for Person-Centered Care (WNYAPCC), a grassroots collaborative of skilled nursing and assisted living providers funded by the Oishei Foundation. Researchers as far away as the United Kingdom and Australia also contribute to the project.

According to Davina Porock, PhD, who directs both the institute and UB’s Center for Nursing Research, “[Person-centered care] differs from standard care of elders in that it does not just focus on illness and medical treatment and decision making. PCC considers the whole experience of everyday life, retaining a sense of self with meaningful interactions and purpose. … Delivering PCC is not only about providing high-quality physical care, but also ensuring that the emotional and psychological needs are met, particularly for the person who is unable to satisfy these needs independently.”

 

Since this is an emerging field in health care, research is focused on defining and measuring its techniques and outcomes, a task that Porock is excited to lead.

 

She writes, “Since there is little more than anecdotal evidence of outcomes and no strong theoretical understanding of how these techniques work, it is difficult to explain how to apply PCC into practice. Thus, our research focuses on these issues. So far, we have developed questionnaires from resident, staff, and family perspectives to measure dose of PCC, such as how much PCC is actually happening in a long term care facility. We used standard data collected in all long term care facilities to determine which resident outcomes might be sensitive to a PCC intervention,” she says, adding that some of that research was recently presented in a scholarly paper.

 

An upcoming study this summer at two assisted living residences will further test PCC measures and procedures, with the hope, writes Porock, that this research will “explain the underlying mechanism for the positive outcomes of PCC approaches.”

A university-wide initiative, the Institute for Person-Centered Care (IPCC) is housed in the UB School of Nursing, but partners as well with the Law School, Geography Department, School of Social Work, and all the health science schools, according to Porock.

 

She adds, “We hold our trainings and outreach in the community at various long term care facilities throughout western New York and in various venues across the country.” The IPCC education and training mission is managed by Rhonda Rotterman, RN, who is board certified in gerontology and a licensed nursing home administrator with 25 years of experience with the geriatric population.

 

Rotterman previously served for three years as the executive director of WNYAPCC.

 

“I am excited about the opportunity to develop courses on person-centered care at UB and help develop the evidence base that supports what we already know is the right thing to do,” Rotterman says.

 

“If we are to provide quality care and services to vulnerable individuals, it is paramount that we create a culture of ‘positive aging’ that focuses on how individuals can maintain autonomy and a sense of self-worth and purpose, despite physical or cognitive impairment. If we are healers, then taking care of the whole human being should be central to what we do, not just one facet of it. These issues will affect every one of us and those we love.”

With its partners both inside the university and beyond, the institute looks forward to heightening awareness and refining the techniques and outcomes of PCC for all stakeholders across the entire health care continuum, wherever services are rendered.

 

The IPCC research program will work to develop evidence-based strategies of care based on and supported by scholarly research in the field. It will focus on education at the undergraduate and graduate levels, with the goal of eventually building PCC interdisciplinary programs of study in aging and gerontology.

 

It also will provide training and specialist topics for staff in elder-care facilities, hospitals, community-based groups providing health care services, and the public.

 

In addition, the IPCC will provide leadership training and practice development, as well as encouraging better delivery of services to frail and vulnerable people, and support for advocacy and public awareness efforts.