The Importance of Caregiver Well-Being – the Caring For You, Caring For Me Program

"I found the program life-changing … what is especially good is that I now take care of me. It helped me feel brave to talk to my sister and find she shares very similar thoughts about caregiving for our mother with memory loss." This is a statement made by a daughter caring for her mother who recently completed one of our support programs (more to come on that program shortly).

I am simply amazed at the generosity, kindness, and heartfelt care that many family caregivers, such as this daughter, engage in daily to manage the care for their older loved one. These caregivers represent more than 29% of the U.S. population, or nearly 65 million persons who are caring for a chronically ill or older loved one. This means almost one-third of all U.S. households are involved in some form of elder care. The Centers for Disease Control and Prevention recently recognized caregiver well-being as a major public health issue. Why? Because family members who engage in elder care tend to become so involved in their loved one's needs (e.g., doctors' appointments, preparing meals, managing medications), that they lose sight of their own physical, mental and social needs.

Because family caregivers do so much, ask so little, and deserve so much more, I felt it was imperative that our Center, the Center for Excellence in Aging and Geriatric Health (CEAGH), an affiliate of Riverside Health System, work to bring needed resources and education to caregivers in Virginia.

I was first exposed to a program known as "Caring For You, Caring For Me" Program (CFYCFM) when I was working on my doctorate at the University of Delaware in 2001. The program was being offered for caregivers in Delaware and Southern New Jersey. I was impressed with the program, and when I found myself leading the Community & Health Services division at CEAGH (in Williamsburg) I realized CFYCFM would be a valuable resource for the Historic Triangle. The program utilizes an innovative approach to enhance education, support and advocacy for caregivers. The program brings family, volunteer, and professional caregivers together to discuss coping mechanisms; exchange ideas; learn about a wide range of resources; and identify key concerns and ways to work together to enhance the quality of life for their care recipients and themselves as caregivers.

Modeled on the Rosalynn Carter Institute for Caregiving's (located in Americus, GA) "Caring for You, Caring for Me" Education and Support Program, this is a 10-hour, 5-session course. It offers a proven approach to improving the care and quality of life of older adults and people with disabilities, through uniquely educating, supporting and connecting all types of caregivers. The course curriculum emphasizes caregiver self-assessments of health and well-being, and actively demonstrates how caregivers can be greater advocates for themselves and their loved one(s) with dementia and other diseases through interactions with healthcare and senior service providers. Each program is supported by at least two facilitators, who are required to complete a one-day training course prior to beginning a program.

David Haigler, of the Rosalynn Carter Institute for Caregiving, traveled to Williamsburg in 2009 to train 25 of the original Virginia-based facilitators. Since that time, an additional 50 facilitators have been trained by CEAGH. CEAGH remains in close contact with leadership at the Rosalynn Carter Institute, and I'm proud to say that I have been invited by the leadership at the Rosalynn Carter Institute to present our work with CFYCFM in Virginia during their 25th Anniversary Summit this October.

CFYCFM is part of an ongoing program (established in 2009) at CEAGH that assesses caregiver needs and provides support group leaders with new educational approaches and resources. Caregivers are taught to seek health care, counseling, and social support whenever their self-assessment indicates such a need. They are also provided information on community resources and services, including underutilized respite and adult day services. Due to the overwhelming amount of interest, CEAGH is committed to offering this program in the Hampton Roads region on an ongoing basis, with the goal of expansion across Virginia as interest grows and funding becomes available.

CFYCFM is currently offered in Newport News, Williamsburg, and Reston. Due to its popularity and success, attendees located in Northern Virginia, Richmond, and Harrisonburg are taking steps to disseminate the program in their respective areas. By providing CFYCFM in a wide variety of settings, from intensive Program of All-Inclusive Care for the Elderly (PACE) programs to senior centers, CEAGH is able to capture and address a range of caregivers and their issues. For example, by offering programs at PACE, the Center is able to reach a caregiver with a family member involved in PACE as well as professional caregivers employed at PACE. In this way, the program is bringing together caregivers who have various perspectives, training, and experiences.

More than 160 caregivers, in 10 different venues, have now completed the 5-week program. An estimated 2,700 care recipients have benefited annually and 6,600 cumulative since program inception. Several home companion companies provide free or reduced-fee respite services to enable caregiver attendance. Goals consistently are focused on family, volunteer and professional caregivers learning from each other's perspective, reducing their sense of isolation, increasing their ability to evaluate their own physical and mental health and social needs, and learning how to find needed support through increased knowledge of local, state, and national resources. Each caregiver is invited to complete a pre-test during the opening session to gauge caregiver needs at the outset and a post-test evaluation to determine the program's impact at its conclusion. Evaluations are based on the Rosalynn Carter Institute for Caregiving's evaluation form. At pre-test, 90% of caregivers report needing to improve skills in solving problems and accessing resources, and 75% report a moderate to high need to improve their confidence in caregiving skills. At post-test, 78% report their confidence levels as either very good or excellent-a substantial increase in caregiver confidence. The two highest areas of impact reported have been being better equipped to take care of oneself and gaining knowledge of community resources. Based on evaluations, caregivers continue to report reduced isolation, increased confidence in their caregiving responsibilities, and increased ability to manage their own health care. Nearly 100% of caregivers reported that they would recommend this program to others.

Anecdotally, one of the caregivers who had completed the course was facing a challenging situation in the emergency department with her spouse. Through her experience with the course, this caregiver recognized when help was needed and had the confidence to ask for and accept it. On the final evaluation form, caregivers have the opportunity to express opinions. One caregiver wrote, "The program was a real eye-opener on issues of caregiving. I think it is wonderful that your agency is reaching out to those of us who often feel we are alone." Perhaps our former First Lady Rosalyn Carter said it best: "There are only four kinds of people in the world - those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers". They key is that we recognize the impact caregiving has on caregivers and the value they represent as they are truly the backbone of our health care system for older adults.

Christine Jensen is Director of Community and Health Services Research with the Center for Excellence in Aging and Geriatric Health in Williamsburg. She also teaches at The College of William & Mary and Virginia Commonwealth University. She obtained her Ph.D. in Human Development & Family Studies, with a specialty in gerontology, from the University of Delaware. The Center for Excellence in Aging was recently awarded the 2012 Best Practiced Award by the Southern Gerontological Society for Jensen's implementation of the "Caring For You, Caring For Me" education and support program in Virginia. In 2009, Jensen drafted the "Williamsburg Community Action Plan on Aging: 2010-2020" for the Senior Services Coalition, and this Plan is now in its third year of implementation. She is serving as Chair of the 2012 Williamsburg Walk to End Alzheimer's. She lives in Williamsburg with her husband and two children, ages 7 and 4.