Aging in place what do people want?

Long-term care and those who provide it have been the focus of public criticism for some time. Consumers, healthcare providers and policymakers have each become expert at articulating what they don't like about the current way care and services are organized to serve older Americans with chronic care needs.

While each stakeholder group has become practiced in pointing its finger at others for problems that persist in our long-term care delivery system, what is lacking from any perspective is a positive articulation of what long-term care should look like.

Last fall, the National PACE Association conducted eight focus groups with family caregivers in four different cities across the country. Focus group participants tended to be between 45 and 65 years old. More than three-quarters were female, which according to research is consistent with those who usually make family long-term care decisions. The primary goal of the research was to better understand what people actually want when faced with long-term care needs. One working assumption that the study set out to test was that those enrolled in PACE programs (Programs of All-inclusive Care for the Elderly) and their caregivers were more satisfied with their care than others not enrolled in PACE programs.

PACE is a program that offers a great deal of flexibility to providers to deliver care and services in a way that supports the unique needs and preferences of each individual. PACE programs provide, coordinate and oversee all needed preventive, primary, acute and long-term care services with the goal of enabling older individuals to continue living in the community for as long as possible. Because PACE programs are funded through a flat, capitated payment through Medicare and Medicaid or a private-pay source, providers are able to concentrate on the needs of each individual participant, not on what a given reimbursement system might cover.

The focus groups were conducted with family caregivers of PACE participants in two cities, Boston and Denver, and with family caregivers where PACE programs do not yet exist, Indianapolis and Amarillo, Texas.

Focus groups participants were asked to discuss their degree of satisfaction with the care and services available; what they valued most; what they would like to see changed to make their caregiving situation better; how they made decisions in arranging care; and what words and phrases they used when they talked about long-term care.

A major finding consistent among all focus groups was a strong negative response to the term "nursing home." Focus group participants repeatedly expressed their goal of keeping their loved one out of a nursing home. Often these family caregivers were taking on tremendous burdens to do so. The top concerns associated with nursing home care were that professional caregivers would not be able to treat their loved one as an individual person and that families' ability to direct and provide care would be limited.

Perhaps the biggest surprise was that the issues people talked about were not the quality-of-care issues that the profession and governmental regulatory bodies spend so much time and energy focusing on. People seemed to assume that care would be of adequate quality. Instead, the first thing that most of the focus group participants mentioned when asked to describe an ideal long-term care system was the ability to learn about all available options. One participant in Indianapolis said that she just wanted "information on where to find information." For family caregivers used to navigating a fragmented system, it was hard for them to imagine one place that would actually help them identify and understand every option that was available in their community.

Just by trying to educate themselves about what was available in the community participants reported encountering numerous referrals to other sources of information that seemed to lead nowhere, failed to return phone calls or, if they did make contact, expressed frustration with them for not following set procedures.

Another aspect of long-term care that was mentioned often was related to the responsiveness of staff. Participants greatly valued staff who would listen to their concerns and then acted to address them. Focus group participants definitely had strong feelings about staff who seemed to be insensitive to their needs or treated them with disrespect.

Family caregivers also expressed the need to be supported in their efforts, rather than replaced as caregivers. They felt strongly that it was not only their responsibility to be in the driver's seat when arranging care for their loved one, but that the quality of care could be much less if they did not serve as active advocates for their family members. They were frustrated when faced with options that, while they might lighten their own burdens, shifted control and responsibility for care to providers. There was the feeling that the more they ceded control, the less their loved one would be recognized as an individual.

Family caregivers whose family members were enrolled in PACE were less likely to express concerns about being replaced or their loved ones losing their individual identities. One focus group participant observed, "They [PACE staff members] get to know the needs of the people and their families. That is the key to how it [the PACE program] works so well."

All focus groups voiced the need to improve the amount of support available for their own efforts to provide care. One family caregiver said that when her college-age daughter came home for a visit after the caregiver's elderly mother had been enrolled in PACE for a few months, the daughter commented that "Grandma looks great, but you look awful."

Family caregivers from non-PACE cities expressed a great deal of concern over how they would deal with changes in their loved one's health status. In most cases, families had knitted together something of a support system from an extremely fragmented delivery system. They expressed fear when they considered how they might be able to arrange for increased services when their loved one's health needs probably grew over time.

The focus groups with PACE family members were markedly different in this regard. Focus group participants expressed confidence that the PACE program would present options to them, no matter how the healthcare needs of their family members changed. One family caregiver said about her mother enrolled in PACE, "Whenever her situation has changed, they have always given us options. They are ready for anything." In fact, many expressed gratitude that the program had in the past prepared them for the eventual changes their loved ones would experience as they aged.

The focus group results confirmed a belief that PACE is at least one way to provide many of the things that other research has shown baby-boom-age family caregivers value as they arrange long-term care for their loved ones: choice, individuality and support. And all focus groups confirmed the need for further attention to improving support for family caregivers. It will he up to providers to define their response to family caregiver needs.

Robert Greenwood is director of public affairs for The National PACE Association (NPA), whose PACE Expansion Initiative is working to help healthcare providers develop new PACE programs. The Initiative is funded by grants from The Robert Wood Johnson Foundation and The John A. Hartford Foundation.