The high cost of long-term care for the elderly is a growing concern, addressed by Trudy Lieberman in her Health Matters column (Los Angeles Times Health section, April 16).
While the insurance industry is promoting the concept of "personal responsibility" for long-term care, according to Lieberman, it would be difficult to exercise for the 90% of the elderly who cannot afford a quality long-term care policy.
My colleague Teresa Madden and I have just completed a study of care of the elderly in Latino families who take "personal responsibility" as a family for caring for their elderly.
Because so little research has been done on minority elderly, and less still on Latinos, our findings are of interest to gerontologists. But our research should also inform the public debate about how we, as a society, will support the growing population of people over 65, most of whom will neither desire nor require long-term institutional care.
How will we support the family members who care for them?
Our study was small in scope and clearly exploratory. We attempted to capture the dynamics of the care-giving experience through interviews with Latinocaregivers in Ventura County, almost all of whom were women caring for their mothers or grandmothers.
We knew from existing research that Latino elderly tended to have lower incomes and be in poorer health than Anglos, thus requiring more care. We also knew that in their culture, the elderly are respected and it is considered the responsibility of the family to care for them.
But what was the impact of providing this care on the family? What we learned left a profound impression on us.
First of all, the burden of caring for the elders in our study--all of whom required a considerable amount of assistance with daily living activities--was substantial. Care giving was time-consuming, physically exhausting and financially draining.
For the working women whose elders tended to live apart from them, it was as if they were doing two or three jobs--working, caring for their own families and caring for their elders. They experienced considerable role conflict.
The women whose elders lived with them tended to have been in the United States a shorter time and to have adapted less to American culture. This group was much less likely to work, thus they had more time to devote to care giving and received more assistance from other family members. We expected them to at least be more satisfied with their role as caregivers.
To our surprise, however, it was this latter group who experienced much less satisfaction with care giving and their own lives. Even though they were performing a valued role in caring for the elderly, these women suffered from the effects of living in a society in which it seems that the elderly are not valued highly and of feeling isolated and unwelcome.
One of the respondents in this study referred to the difficulties of caring for the elderly in this country as "a problem nobody wants to solve." In fact, with increased longevity and the aging of the baby boomers, it is a problem that a growing number of people are interested in solving.
But to the extent that solutions focus on the provision of formal services, especially long-term care for the elderly, they ignore the experience of most caregivers, and they absolutely do not address the needs of the less visible, but growing, segment of the elderly who are Latino. To the extent that these families rely solely on themselves to care for family members, they in fact "solve a problem" that could otherwise require substantial tax revenue to address.
The needs of the caregivers in our study could be addressed in some simple and relatively low-cost ways. For the Spanish-speaking caregivers, in particular, simply identifying them and creating informal networks in which they could share experiences and provide practical tips to one another could go a long way toward reducing the sense of isolation. Informal networks and agencies, such as churches and health clinics, could be used even more than they are to disperse information about the needs of the elderly and available support services, including respite care.
Finally, and most importantly, all caregivers, but especially those with very low incomes, need some form of financial assistance. An across-the-board income tax reduction is not likely to do these families much good. However, a targeted tax credit could.
Whatever financial relief can be provided will be only a fraction of the actual value of the services they provide.