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Family Caregivers and Health Care
Professionals Working Together
Good news,” said the doctor. “Your husband is ready to go home.” Good news,
absolutely, but not without a downside. Your husband has dementia and just being
in the hospital has made him more confused and disoriented. He now has a new set
of medications and exercises, and you have a new set of responsibilities. Are you prepared?
Sound familiar? Whether you are a spouse, adult child, or close friend, transitions in care
settings are critical points for you — the family caregiver — as well as for the patient and
health care provider. This is true for all caregivers. But the experience is especially traumatic
for someone caring for a person with dementia. If the person you are caring for has been
in a hospital or rehab-nursing home, you may have already experienced problems with
discharges, including poor communication and coordination. Although you are the person
most familiar with your family member’s history and needs, you may have felt left out of
important conversations and decisions.
The United Hospital Fund, a nonprofit organization that works to improve health care for
all New Yorkers, is launching a campaign to tackle such challenges head-on. Next Step in Care
is a multi-year, multi-dimensional campaign to change practice in hospitals, rehab-nursing
centers, and home care so that family caregivers are routinely involved in planning, decision
making and coordinating care, particularly around transitions in care settings.
Next Step in Care will have its own Web site — launched in the fall — featuring information,
guides and other tools. For example, you will be able to go to the Web site and find a discharge
guide to assist you make the move from hospital to home or rehab; and a needs assessment that
will help you plan realistically for what you can and cannot do. Beyond reaching individual
family caregivers, Next Step in Care is enlisting the active participation of caregiver organizations
and social service organizations, health care leaders and professionals.
“What makes Next Step in Care different is our dual focus, working with both family
caregivers and health care providers,” says Carol Levine, director of the Fund’s Families and
Health Care Project. “We are focusing our efforts on critical transitions, and we are working
with not just one health care sector, but with staff from hospitals, rehabilitation units in nursing
homes, and home care. Another key that sets our campaign apart is the specific tools we’ve
created and have already field-tested; they address the most common concerns of both providers
and family caregivers. And they’re all on the Web site and free.” Initially, 17 tools will be
available, and more will be added over time. They will also soon be translated into Spanish,
Chinese and Russian.
Integrating these tools into routine clinical practice will be the campaign’s next big challenge,
according to Ms. Levine. “Providers are busy, and family caregivers are overwhelmed, so
figuring out the best time to build these important communication tools into standard care
protocols will take more work. But the feedback we’ve gotten in the testing phase of our tools
has been very positive. With providers and family caregivers both poised to benefit, it’s just a
matter of time. And hard work.”
For more information, visit www.uhfnyc.org/nextstepincare.
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