Published in Pawtucket Times, October 3, 2014

Providing care to cognitively and complex chronically impaired family members can be hazardous to the health and mental wellbeing of caregivers, says a jointly issued report by the United Hospital Fund and AARP Public Policy Institute. The researchers found that the demanding personal and professional challenges lead to high levels of self-reported challenges.

According to Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions, a publication in the “Insight on the Issues” released on Aug. 19, a majority of respondents (61 percent) reported constant stress from having their feeling stress “sometimes to always,” between their caregiving responsibilities and trying to meet other work or family obligations.

Adding to the challenge, people with cognitive and behavioral conditions (collectively termed in the 13 page report “challenging behaviors”) were generally sicker than other people requiring caregiving. These persons needing care often had chronic physical health diagnoses—including cardiac disease, stroke/hypertension, musculoskeletal problems (such as arthritis or osteoporosis), and diabetes—at higher rates than those without cognitive and behavioral conditions. Further illustrating the complexity, family caregivers of people with challenging behaviors often met with resistance from the person they were trying to help. Caregivers noted that “more cooperation from their family member” would make one key medical/nursing task—managing medications—easier.

The new findings are drawn from additional analysis of data based on a December 2011 national survey of 1,677 family caregivers, 22 percent of whom were caring for someone with one or more challenging behaviors. Earlier findings were published in the groundbreaking Public Policy Institute/United Hospital Fund report Home Alone: Family Caregivers Providing Complex Chronic Care and in earlier publications in the “Insight on the Issues” series, including Employed Family Caregivers Providing Complex Chronic Care and Family Caregivers Providing Complex Chronic Care to Their Spouses.

The report concludes, “All caregivers need training and support; caregivers who are responsible for people with challenging behaviors are among those most in need of assistance.”

Focused caregiver assessments were one of six recommendations outlined in the report. The others were better integration of behavioral and physical health programs, efforts to set up respite and adult day care programs for family caregivers, training of family caregivers to better understand and respond to challenging behaviors, better training of health care providers to work more effectively with family caregivers, and revisions to most support and training materials for family caregivers to reflect care management of the whole person, rather than just the specific condition.

“Caregiving is rarely uncomplicated, “said AARP State Director Kathleen Connell. “Add these issues and the stress on the caregiver grows and can feel unceasing. We need to be mindful of the circumstances caregivers face. In the larger scheme, this points to the need a strong strategy that provides support to all caregivers.”

Susan Reinhard, AARP’s Senior Vice President for Public Policy, adds: “Take a hard look at this profile of today’s overstretched and overstressed caregiver for someone with cognitive or behavioral issues,”. “This is the face of caregiving’s future unless we improve long-term services and support for family caregivers,” she said, pointing to the expected surge in the incidence of Alzheimer’s disease and the projected drop by more than half in the ratio of potential caregivers to those likely to need care.

“Caring for a family member is hard enough when the family member is on the same page,” said co-author Carol Levine, Director of the Families and Health Care Project for United Hospital Fund. “But when that family member has a cognitive impairment, like Alzheimer’s, or a behavioral issue, such as depression—things that can interfere with daily life as well as decision-making—the burden on the caregiver is multiplied. And currently, our health care system often doesn’t provide the kind of support that can make a difference.”

Gearing Up

According to the Rhode Island Chapter of the Alzheimer’s Association, in 2013 an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder, the prevalence may well triple, skyrocketing to almost 16 million people.

Meanwhile, with 24,000 Rhode Islanders afflicted with Alzheimer’s disease, every Rhode Islander is personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient. As indicated by the recently released AARP/United Hospital Fund report, many of these caregivers will doubly challenged by taking care of a loved one with chronic diseases who also have chronic and behavioral issues.

As reported in a previous commentary, both federal and state officials are gearing up to battle the nation’s impending Alzheimer’s epidemic.

In February 2012, the U.S. Department of Health and Human Services released its draft National Plan, detailing goals to prevent or treat the devastating disease by 2025. Almost six months later, in May 2012, the Rhode Island General Assembly passed a joint resolution (The same month that the final National Plan was released.), signed by Governor Lincoln Chafee, directing the state’s Long Term Care Coordinating Council to lead an effort to create a state-wide strategy to react to Rhode Island’s growing Alzheimer’s population. Almost one year later, a 122 page document, the Rhode Island State Plan for Alzheimer’s Disease Disorders, was released to address the growing incidence in the Ocean State.

Amazingly with the November election looming, candidates for Lt. Governor may be discussing a multitude of issues, but not the Ocean State’s impending Alzheimer’s epidemic and its impact on caregivers. Nor are the candidates talking about how they would continue the work of Lt. Governor Elizabeth Roberts in implementing the Long-Term Care Coordinating Council’s efforts to fully implement the State’s Alzheimer’s plan.

With the Lt. Governor being given the responsibility of overseeing the work of the Long-term Care Coordinating Council, maybe aging policy issues like the state’s impending Alzheimer’s disease epidemic and its impact on state resources and caregivers should be thoroughly debated. It’s a no brainer.

Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions was produced with support from the John A. Hartford Foundation. The report is available at https://www.uhfnyc.org/publications/881005.

To review the Rhode Island’s Alzheimer’s plan go to http://www.ltgov.state.ri.us/alz/State%20Plan%20for%20ADRD%202013.pdf.

Herb Weiss, LRI’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.