Finding Balance in the Long-Term Care System
By Richard Shank
Experts from Brown University published a position paper arguing that attempts to find a balance between institutional and community-based long-term care must focus on strengthening the informal care system.
Family and friends in the community provide the majority of long-term care, and the vast majority of community-based caregiving is unpaid. When the demands of caregiving become too much for these unpaid caregivers, nursing homes are the traditional fallback. Housing preferences, however, have been shifting away from nursing homes in favor of home- and community-based services (HBCS). In fact, in recent years, funding has been shifting dramatically into HBCS.
Experts worry that this movement toward more HCBS will be unsustainable if the assumption remains that families of severely impaired individuals will be able to sustain care over the long term. Caregiving needs vary dramatically and can increase dramatically overnight. Being able to balance the demands of caregiving, employment, and other family duties can become overwhelming.
Respite and adult day centers are especially important for supporting informal caregivers. Respite provides relief from caregiving duties for a short period of time and adult day centers provide organized services throughout the day. The problem lies, however, in the fact that national estimates indicate that the demand for these services is far outpacing the actual supply. For example, the approximately 3,500 adult day centers in the country are not even half of what is believed to be necessary to meet the needs and preferences of older adults and their families.
Currently, the increased funding for HCBS has only modestly matched the demand for these services. Formal HCBS are most often used as stop-gap supplements of unpaid care and are not robust enough to act as replacements should the caregiving situation become too demanding for a family. There are simply not enough of them to serve in this capacity.
The Brown researchers advocate a variety of remedies to counter the fragmentation of HCBS. Primarily, they believe that funding needs to be directed toward the coordination of care within the community, occurring between family, primary care, case management, hospital staff, and HCBS services. This coordination should be consumer-directed so that the needs and preferences of the care recipient and caregiver can be better matched. In short, changes in HCBS must be directed toward eliminating service fragmentation and promoting easy access to services that provide continuity of care throughout the community.
Source: Miller, E., Allen, S., Mor, V. 2009. Commentery: Navigating the Labyrinth of Long-Term Care: Shorting up Informal Caregiving in a Home- and Community-Based World. Journal of Aging and Social Policy 12:1 1-16.
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