What's New at CBH
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.