Introduction

CaregiverFor some psychologists, practice, research and education are important means of minimizing the challenges of family caregiving. But it has been their roles as policy advocates and program developers, affecting the large systems that impact family caregivers’ lives, that has been their most gratifying work.

Psychologists can draw on their knowledge of policy, legislative strategies, leadership, and organizational dynamics to become active change agents. They serve family caregivers in this regard in these ways:

  • Psychologists inform and advise policymakers and government agencies, as well as health-specific and caregiver organizations, on legislation and policies that can assist family caregivers including community-based supports, respite care and faith-based initiatives.
  • Psychologists design and implement assessment tools to measure the impact of these policies and initiatives.
  • Psychologists develop and oversee interprofessional prevention and intervention programs that aid family caregivers, as well as their loved ones with health problems or disability. They conduct empirical studies of these programs to demonstrate their efficacy.
David W. Coon, PhD, Profile

David Coon“I think that if we want to sustain behavioral change, we have to think about interventions at multiple levels.” That sentiment has motivated Arizona State University psychology educator, academic administrator and noted family caregiving researcher David W. Coon, PhD, to also become a passionate policy advocate on behalf of family caregivers.

His interest in addressing caregivers’ psychological challenges from individual, systems, community and policy perspectives is reflected, in part, by his extensive work studying diversity issues in family caregiving, including the specific challenges of Latino, African-American, low income and lesbian/gay/bisexual/transgender (LGBT) caregivers. A 2006 book chapter that he wrote on LGBT caregiving noted the importance of sociocultural factors to explain how biological family members of patients who have dementia are often able to usurp the decision-making power of long-term partners.

But Coon has also been involved in a range of projects to influence larger systems’ impact on family caregivers:

  • As a member of the Governor’s Advisory Council on Aging, Social, Health and Alzheimer’s Committee, he helped organize a family caregiver advocacy day to increase awareness of caregiving issues among Arizona legislators and the public. He also helped launch the Arizona Caregiver Coalition, a grass-roots organization of caregivers that developed a website with information on the state’s caregiving resources. In partnership with the state’s Department of Economic Security, he has helped develop a tool to assess both care-recipients and caregivers simultaneously as a way of directing the most intensive social services to the most needy caregiving dyads.
  • As a board member of the Desert Southwest Chapter of the Alzheimer’s Association, he has developed conference programming on family caregivers and has helped the organization to focus on early-stage patients and their care partners.
  • As a psychologist working within a community-based, not-for-profit organization, he helped devise a system by which fax referrals to the Alzheimer’s Association were made for patients with dementia within different types of healthcare organizations. It greatly increased the timely use of disease-specific support services by those patients and their family members.

Mature couple“The two interdisciplinary majors — linguistics and cross-cultural communication, foreign service and public affairs — that I did in the late-1970s as an undergraduate at the University of Oklahoma gave me a love of looking at things from multiple perspectives,” says Coon, “Later, I did graduate work at the Australian National University on psycholingustics and sociolinguistics. When I later studied geropsychology at Stanford University and the VA Palo Alto Health Care System, this interest in multiple levels of communication and functioning served me well in order to listen to the voices of Alzheimer’s patients and their family members while also keeping in mind how they were affected by healthcare and social service teams, organizational structures and policy.”

He relishes his role as an advocate. He says, “My dream is to take the caregiving research I’ve done and to translate its outcomes into interventions in the community.”

Resources

Articles:

  • Coon, D.W. & Burleson, M.H. (2006). Working with Gay, Lesbian, Bisexual, and Transgender Families. In. G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity and the Dementias (2nd ed., pp. 343-358). New York, NY: Routledge.
    Download article (PDF, 1MB)

  • Bell, S.H., Burgio. L., Burns,R., Coon, D., et al. (2004). Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups: A Randomized, Controlled Trial. Annals of Internal Medicine, 46(10), 737-728. Retrieved November 15, 2010, from http://www.annals.org/content/145/10/727.full.pdf+html

Website

Cordelia Robinson-Rosenberg, PhD, RN, Profile

Cordelia Robinson-RosenbergAs one of the country’s leading advocates for and developers of services for children with developmental disabilities and autism, developmental psychologist Cordelia Robinson-Rosenberg, PhD, RN, has worked toward supporting caregiving families in various ways — providing good information, guidance from physicians and other specialists, and a coordinated service system whose professionals work together, not apart.

Since 1993, she’s been the director of JFK Partners, a multi-faceted initiative of the departments of Pediatrics and Psychiatry at the Denver-based University of Colorado School of Medicine that promotes the independence, health and inclusion of people with developmental disabilities and other special health care needs by creating innovative, research-based, direct service programs. In that position, she has garnered state and federal grants and provided leadership for over 40 involved faculty members. Children with special needs throughout Colorado and in several nearby states have benefited from the effectiveness of her work.

She knows that families struggle with many aspects of rearing special needs children. Consequently, many of the programs she’s devised have a strong emphasis on family support. “We have two strands of family work,” she says. “In the first, we encourage parents to learn about the impact of health on development and to understand how early interventions can best help their children.”

AutismThe second concerns patching together a fragmented care system. “When a child is found to be eligible for early intervention,” she says, “they get access to a menu of services which family members are supposed to pull together. But some families can’t pull them all together and that leads to confusion because of a lack of adequate communication about goals and strategies among providers. Most troublesome of all has been the firewall between mental and physical health providers.”

To remedy this, Robinson-Rosenberg has been a strong advocate of some form of care coordination, including the establishment of one intervention plan, like one playbook, from which a team of treating professionals work. She has also been a proponent of co-locating providers from different disciplines as a means of increasing how much they communicate with one another.

She began her professional life as a nurse and still maintains a Colorado nursing license. But in order to learn more about children with developmental disabilities after receiving her undergraduate nursing degree from D’Youville College in Buffalo, N.Y., she went to the George Peabody College of Vanderbilt University to study experimental child psychology with a research specialty in mental retardation. Before coming to the University of Colorado, she held similar positions in administration and program development at the University of South Carolina and University of Nebraska.

Robinson-Rosenberg points out that, in the traditional early intervention system emphasizing physical, occupational and speech therapies, psychologists have been “fairly absent.” But she says that psychologists have the skills to offer parents guidance about what’s most critical for them to provide their children. She also said that it is the research conducted by psychologists that is helping identify the most effective services for the growing numbers of special needs kids.

Resources

Articles:

  • Linking and Aligning Care Coordination Toolkit
    Compiled by: JFK Partners Staff, JFK Partners Linking and Aligning Toolkit Development Committee
    For JFK Partners’ Linking and Aligning Project
    March 16, 2009
  • Linking and Aligning Care Coordination Plan
    Compiled by: Project BLOOM Staff, Project BLOOM Linking and Aligning Leadership Committee, Project BLOOM Linking and Aligning Forum Attendees
    For Project BLOOM’s Linking and Aligning Project
    Sept. 30, 2008

Website

Harriet P. Lefley, PhD, Profile

Harriet LefleyForty years ago, many mental health professionals still regarded family members of individuals with schizophrenia and bipolar disorder as potentially harmful forces, precipitating or even causing the development of these chronic illnesses. Harriet P. Lefley, PhD has spent her career countering this viewpoint, identifying and promoting the best means of supporting family caregivers in their efforts to help severely psychiatrically disabled loved ones.

A clinical and social psychologist with her own personal experiences as the family member of a relative with mental illness, Lefley has worked as a professor since 1973 within the Department of Psychiatry and Behavioral Science at the University of Miami Miller School of Medicine. Her professional accomplishments since then have been numerous and varied, including serving on the editorial boards of 19 journals, being a member of an APA Task Force on Serious Mental Illness and writing over 100 articles and book chapters and 10 books. For example, her latest book, "Family Psychoeducation for Serious Mental Illness," was published by Oxford University Press in 2009. She has also published research on mental health professionals with mentally ill family members and on aging family caregivers who are concerned that, upon their deaths, there will be no one to provide care to their adult children with mental illnesses.

Mental illnessBut some of Lefley’s most important advocacy efforts have involved working directly with individuals with severe psychiatric illnesses and their family members, in addition to the consumer organizations that represent them. She has run support groups for persons with serious mental illness for over eight years and their family caregivers for over 25 years at University of Miami-Jackson Memorial Medical Center. In 1980, she was the founder of NAMI of Miami and, later, NAMI of Florida. She was the chair of Curriculum and Training for the national NAMI, as well as its representative to NIMH for various activities, and currently serves on the NAMI Scientific Advisory Board. She also serves locally on the South Florida District Mental Health Planning Council. “I've been involved during my career in the dawning of the age of the recovery orientation,” Lefley says, “in which the emphases have been on the strengths of people with serious mental illness and the power of peer support. This has led to better clinical outcomes.”

She says that some of the biggest challenges for family caregivers of individuals with schizophrenia and bipolar disorder are that these individuals sometimes won’t acknowledge that they have the illnesses, refuse treatments, cause family disruption and may end up in involuntary hospitalizations or even jail. She believes that psychologists have important roles to play with these individuals and their caregivers. “Psychologists need to have a knowledge-base about the illnesses and their treatments,” she says, “to help family members understand what is going on in the mind of a person with schizophrenia.” She adds that “many family caregivers also don’t know what to expect in the way of appropriate behavior on the part of their loved ones. Psychologists need to know how to teach family members the necessary skills for determining appropriate behavior, setting limits and reinforcing positive behaviors. In all cases, family caregivers should be taught to maintain low expressed emotion and couple realistic expectations with hopes for recovery — not to return to a premorbid state but to lead a satisfying life despite the limitations of the illness.”

Resources

Book: Lefley, H. P. (2009). Family psychoeducation for serious mental illness. New York, Oxford University Press.

Website