By Ann Bookman

Executive Director, MIT Workplace Center

The MIT Workplace Center’s research on the geriatric health care system in the Greater Boston area began with a focus on the crucial work of the professionals who provide health care to elders. As we traced their daily routines, we were struck by the presence and involvement of family members in all settings – be it hospitals, rehab facilities, outpatient clinics, or homes. This prompted us to shift the focus of our project to family caregivers in order to document in detail the role that families are playing in elder care.

Based on structured work observations in a variety of elder care settings and in-depth interviews with 50 family caregivers, two major findings emerged from this research.

First, families are carrying an increasing degree of responsibility for the care of elders in our society. As health care costs continue to escalate, and home care costs are increasingly out of reach, elderly patients often face the need for significant medical and personal care with only minimal institutional support. This produces considerable pressure on families to organize, coordinate and monitor both in-patient and outpatient care for elderly relatives and to provide care themselves at home – this is a different picture of what family caregivers do than is found in most of the relevant literature which locates the work of family caregivers strictly in the home setting, and describes the tasks they doing as personal care and emotional support.

In fact, we call family caregivers a “shadow workforce” in the geriatric health care system because on the one hand, their work is essential to the functioning of the current system, but on the other, it exists in the shadows, usually invisible and often undervalued.

Second, we found that when families try to put needed services and supports in place, they often confront a dismaying knowledge gap. Basic information is difficult to access and hard to understand. It exists, but much of it is buried in a maze of 800 numbers, unlinked websites, and long lists of non-profit and private elder care agencies, with no mechanism for coordination.

In line with the MIT Workplace Center’s mission to take findings from research and apply them to redesigning work-family-community connections, the Workplace Center recently published the “Family Caregiver Handbook: Finding Elder Care Resources in Massachusetts.” This Handbook, co-authored by Ann Bookman, Mona Harrington, Laurie Pass and Ellin Reisner, is written with the caregiver in mind, both those anticipating the need to provide care and those already actively involved in elder care. It provides in a single source both the basic information and tools needed to navigate the elder care system in Massachusetts. It explains how the service delivery system is organized, and contains a glossary to define unfamiliar elder care terms. It provides an introduction to the major components of elder care by framing the questions caregivers need to ask and the key issues they need to consider. It is a gateway to eldercare resources and organizations across the Commonwealth.

The Handbook was produced though an active collaborative process with many of the major stakeholding organizations in elder care including: health care providers, community-based service programs, government agencies and Employee Assistance Programs of private sector companies. The Handbook was released in January at a symposium called “Who Is Caring for the Caregivers? Expanding Supports for Family Caregivers of Elders.” A distinguished panel of elder care experts addressed an overflow crowd at the MIT Faculty Club, and the process of distributing the Handbooks was launched in partnership with many individuals and organizations that made important contributions to its development.

After three months, the demand for Handbooks has exceeded the supply, and all 15,000 copies of the Handbook that were printed are gone. They were distributed to all regions of Massachusetts through the Councils on Aging, the Aging Service Access Points (ASAPs) and the Area Agencies on Aging(AAA), along with health care institutions, EAP programs and many of the organizations listed in the book as resources.

Although hard copies of the Handbook are no longer available, we are pleased to announce that the entire Handbook is now available on the web at: www.familycaregiverhandbook.org

This website is being constantly updated and new resources added through input from elder care service professionals, health care providers and caregivers alike. Although the Handbook and the companion website are only a small step in addressing the unmet needs of family caregivers, we hope the Handbook will be part of a growing movement to recognize the important work that caregivers do, and expand the resources they need to do that work well. As the number of elders in the population continues to grow, as well as the number of elders living longer, we hope that there will be increased public discussion and increasing public resources to support the wellbeing of caregivers, not only in Massachusetts, but also in other states across the country that are being affected by these significant demographic trends.

Ann Bookman