The nation’s foremost experts on elder care last month convened in Baltimore for a conference that could help calm concerns among family members and doctors about the quality of life for senior citizens in nursing homes.
The goal of the four-day meeting, which addressed thorny issues in the fields of medicine, nursing and elder law, was to develop a national approach that addresses common concerns and to identify the best practices in the nation’s 530,000 nursing homes.
The goals, set by the President’s Commission on Caregivers in Senior Care and established in an executive order by President Barack Obama, included eliminating barriers to communicating, reassessing patient care, improving nursing home staff education and increasing transparency and accountability in the care of seniors in nursing homes.
Panelists addressed many of these issues and identified best practices in the care of nursing home residents in the area of communication.
One of the most important approaches is to keep dialogue going between patients and caregivers, said Dr. Carroll Clarke, a senior fellow in the Center for Research and Education on Alzheimer’s Disease and the first president of the AGE-expert Academy, which also sponsored the conference.
“We can’t sit down at a table and say things should be the way they are now,” Clarke said. “We need to understand what we do best in a particular situation and we need to communicate that. I see patients, their spouses and relatives suffering without a lot of communication.”
Panelists on the first day offered advice about the nursing home experience that might surprise those who have ever been placed in one or who visited a loved one’s home, but offer reassurance that positive changes do come about when more information is exchanged between patient and physician.
For instance, said Sara Altevogt, a retired American University professor who was one of the conference’s keynote speakers, co-hosting social visits with family members and becoming well acquainted with the residents and their activities is key to good quality of life.
“When you walk in and really see how people are living, it makes things easier for you as a clinician,” she said.
Means are available to do community visits, Altevogt said, and many family members are willing to take advantage of them.
Carolyn Wilson, a social worker for the Southern Maryland Alzheimer’s Disease and Memory Disorders Center, said the experiences of caregivers are often not well understood and that those living with Alzheimer’s, the most common type of dementia, often are underrepresented in and underrepresented in care decisions.
Making sure that families fully understand what happens to their loved ones also is important, she said. She said families often understand more about the needs of a person than the needs of the person, who often are confused about why they are receiving different medical care.
“I think we need to take a little more time with families when they have somebody with Alzheimer’s,” she said. “A lot of what we do as social workers is explain more. Not to toot our own horn, but sometimes we say too much.”
Clark explained that family members can be trained to understand the preferences of a loved one and to keep that information on record. It also is important to have a “career-track care partner” in the form of a long-term family caregiver.
In addition to improving communication between health care providers and patients, other goals of the executive order, which was signed Jan. 21, included training nursing home staff in the broad challenges of caring for older adults and gathering information about their experiences.
Mondrowitz, who recently left his position as the president of the National Association of Area Agencies on Aging in Minneapolis, was the conference’s keynote speaker. A consultant for AARP and a member of the AGE-expert Academy, he often has advised members of Congress and the Obama administration, including his work on getting the implementation of a health-care reform law known as the Affordable Care Act to go smoothly in the nursing home industry.
But keeping the safety of aging adults and their families in mind was a recurring theme at the conference, and the true challenge of the task ahead, he said.
“We are going to continue to watch the patient decline,” he said. “As we get older we begin to experience a lot of pain and loss of ability. We all end up requiring something of our caregivers, some of whom we probably didn’t necessarily want for ourselves.”
A panel session on barriers to communication between nursing home residents and their families showed that communication is not always smooth, but can go