Nov 122013

By Janice Lynch Schuster

November is National Family Caregiver Month, in which the nation turns, however briefly, to honor and reflect on the essential role family caregivers play in delivering essential care to millions of adults. While caregivers are essential to bridging the gaps in our fragmented health care system, their contributions are often diminished, and overlooked, and are rarely reimbursed. Caregivers are key to providing basic medical care, but are even more vital for the love, hope, companionship, and devotion they bring to the people they serve.

At the Center for Elder Care and Advanced Illness, several current efforts offer the potential to improve life for our frail elders and, in doing so, make the world a little easier for their caregivers.

Chief among these is ongoing work to promote MediCaring, a model that would provide important medical treatment and health care, while also focusing on what frail elders and their families need even more, things such as continuity of care, community-based services, access to nutrition and transportation, and help for family caregivers. The model builds on requiring a comprehensive, realistic assessment of each frail elderly person’s situation and, in concert with his or her family caregivers, development of a shared plan of care.  Such a plan would become the keystone of highly reliable, effective and affordable care. These care plans would inform and direct a person’s care, and build the delivery system we need in advanced old age. Anchoring the effort in the communities where people live will make them more effective and will allow savings from more efficient medical care to be used to support social services, a plan that CECAI Director Dr. Joanne Lynn calls “MediCaring ACOs.”

We are also exploring opportunities to make our vision of a Caregiver Corps a reality. At some point, such a Corps would help local organizations to recruit and train volunteers, young and old, whose time and talent would be matched to the needs of community-based organizations serving older adults. Communities would be able to tap their own resources to help their own and, along the way, meet pressing social needs that address the eldercare workforce shortage, the limited pool of family caregivers, the continued effect of unemployment on Millenials, the desire for older adults to engage in meaningful service, and the opportunity to build intergenerational understanding and respect. In building to that vision, CECAI is now working to create an online forum where the scores of groups now working with volunteers in communities can begin to share information and resources, set themselves some standards, work together on policy issues, and launch the kind of community of practice that can support significant change and energy.

We are also working with other nonprofit organizations to build enthusiasm for a 2015 White House Conference on Aging and Long Term Care, a decennial event first convened by the Kennedy Administration. Absent a charge from the Administration or Congress to launch the efforts needed to build such a conference, several organizations are exploring ways to create grassroots enthusiasm. These groups aim to convene a series of regional meetings – in person and online—where participants can address a series of policy issues which would then become the agenda for the Conference.  Family caregiving would, of course, be an essential part of those dialogues. If we miss the opportunity in 2015 to have a full, rich, inclusive dialogue about how to care for our aging society, we will have missed an opportunity for real change and solutions.

There is so much to do—and so little time to get it done. While these efforts are underway, Dr. Joanne Lynn and her team continue to work with communities around the country, aiming to find ways to build community-based solutions and coalitions to meet the needs of the very old.

The theme of National Family Caregiver Month is “Now more than ever!” Indeed, it might also be, “If not now, when?” Each and every one of us who is lucky enough to grow old faces this future, and it is our turn to shape it. Or we will endure the frustrations and suffering that the current arrangements engender.


key words: caregivers, National Family Caregiver Month, Joanne Lynn, Altarum Institute

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