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Communities of Care: Assisted Living for African American Elders, by Mary M. Ball, Molly M. Perking, Frank J. Whittington, Carole Hollingsworth, Sharon V. King, and Bess L. Combs. John Hopkins University Press, Baltimore, MD, 2005, 288 pp., $50.00 (cloth).

Maltreatment of Patients in Nursing Homes: There is No Safe Place, by Diana K. Harris and Michael L. Benson. Haworth Press, Binghamton, NY, 2006 146 pp., $34.95 (cloth), $16.95 (paper).

Our Parents, Ourselves: How American Health Care Imperils Middle Age and Beyond, by Judith Steinberg Turiel. University of California Press, Berkeley, CA, 2005, 306 pp., $55.00 (cloth), $21.95 (paper).

This is the seventh review essay I have written for The Gerontologist on various dimensions of elder care and elder care policy in the last six years. In those essays, I reported on 20 volumes and attempted to note how each contributed to the growing body of knowledge of these subjects. I have argued that as more works appear, they will add to our store of cumulative knowledge. I continue to hold that view, but wish to sharpen it by focusing on, not just the addition to our knowledge base, but the value added. I don't feel the field will soon reach a stage of diminishing returns from new publications, but clearly some works add more value than others, as I will discuss below.

The first two books in this set present findings from empirical research studies, while the third is based on the author's personal experience of helping a friend and caring for her parents. Each adds to the growing literature on care of older people, but in different and varying ways.

African Americans in Assisted Living
Mary M. Ball and her research team have an extended history of research in long term care going back to 1989-90. The group has published a previous volume (Ball & Whittington, 1995), as well as articles in the Journal of Applied Gerontology and Journal of Aging Studies. The team's Communities of Care is a study of assisted living for African American elders in metropolitan Atlanta. The researchers use an ethnographic approach involving participant observation, interviews, and document review. Their theoretical orientation is based on "grounded theory."

The authors set up their presentation in an introductory section by asking why do not older African Americans inhabit the world of nursing homes or assisted living facilities (ALFs) to the same extent as white elders, especially given African Americans' poorer health and socio-economic status across a number of measures. They then proceed to review the reasons offered to explain this situation: culturally-based stronger family ties, faults in research strategies for measuring group differences, behavior of providers, differential participation in public long-term care programs, a predominately white long-term care market, and residential segregation. They conclude that while none of these reasons are decisive, there is no denying African American elders' need for assisted living.

Two qualitative studies carried out in 1999 and 2001 are the sources for this book. The studies were conducted in three types of facilities: three in small (2–6 beds) facilities, two in larger (7–15 beds) ones, and only one in a large (75 beds) facility. These six African American owned facilities had a capacity of 119 residents, of whom 33 were interviewed, along with 26 staff members, and 24 families/friends. Researchers observed behavior within the facility and reviewed resident records along with facility documents. The authors tell the story of assisted living through the life stories related to them by the residents.

In a section of the book entitled "Becoming a Resident," the authors, like Elaine Brody (2004) in her discussion of "becoming a care-giver," illuminate the role of time, place, and contingent events that result in a particular pathway to assisted living. Recurrent themes of what is important to these residents emerge from their stories: family support; communities serving as a "Black Mecca"; the Church and religion; education in the form of schooling that prepared a person to be ready for the real world—"the white world"; and local social organizations.

The authors understand that assisted living is a business and that economics matter. They separate the homes into three economic types—family, small business, and corporate—which correspond closely to small, larger, and large. They note that the caring environment is unique in each of the six homes. Reluctantly, they recognize that economies of scale matter, detailing how the 75-bed home offers the most resident benefits.

When I read that "bigger was better," I headed for the library to borrow George Orwell's (1958) The Road to Wigan Pier, to track down one of my favorite observations made by Orwell. Wigan Pier was a pathetic coal-mining town visited by Orwell to document the plight of the unemployed in the north of England. The poor housing in which the miners lived pained him, but to his disappointment:

"I found—one might expect it, perhaps—that the small landlords are usually the worst. It goes against the grain to say this, but one can see why it should be so. Ideally, the worst type of slum landlord is a fat wicked man, preferably a bishop who is drawing an immense income from extortionate rents. Actually, it is a poor old woman who has invested her life's savings in three slum houses, inhabits one of them and tries to live on the rent of the other two—never, in consequence [yes], having any money for repairs" (p. 57).

I am not suggesting that the small ALFs are the equivalent of slum housing, but rather, that despite good intent, financial resources are necessary for good performance. The authors later address this issue in their recommendations. Following the business of care, they focus on self-care and issues of family participation in care, control of care and continuity of care. These sections are rich in detail of both individual and facility experience.

They begin the conclusion and recommendations chapter with the sobering observation, drawn from both this work and their previous volume that, "Sometimes nothing helps." Hopefully, they add, success occurs when the desire of others to help supports the individual's efforts at self-care. They argue that their study illuminates how the cumulative effects of racial discrimination across the life course of both African American individuals and communities (including businesses) have contributed to current disadvantages in accessing adequate in-home and residential long-term care. I felt that they were almost suggesting a new affirmative action program for long-term care.

The book's recommendations are directed at five constituencies: residents, families, providers, community, and policy makers. The recommendations for the first four groups are organized around the dimension of autonomy, choice, and self-care. Residents should take ownership of their own care; families should not do for, but do with; providers should market to residents, not families, and encourage self-care; communities should strive to include ALFs in the life of the locality. For policy makers, they offer some of the usual suspects for long-term care reform—better salaries for direct care workers, better training, more recognition, etc. They do, however, offer a bold policy alternative that in some ways addresses Orwell's dilemma. That is to have separate standards for the smaller ALFs so that they will be able to survive by not incurring the higher costs of the larger ALFs. Specifically, they seek waivers or modifications for fire safety, record keeping, property taxes, liability insurance, and similar requirements. They are willing to trade off these protections for greater intimacy and personal connectedness. Life is always about tradeoffs, so it is reasonable to suggest this idea, but does this policy alternative have a chance? Now I feel like Orwell looking for a fat bishop, but I don't think I will find one. The reality of politics will not allow a legalized two-class system (obviously false for persons who lived under Jim Crow laws) when it comes to expending public dollars for care of older persons. As I have written elsewhere on assisted living, "An unfortunate event in one of these facilities could result in more government regulation. Safety would take priority over personal autonomy" (Callahan, 2002, p. H6). Maybe a decentralized model of small satellite homes connected to a larger system could achieve both the intimacy and the public accountability objectives. But, Ball and her colleagues may spur creative thinking by putting their policy alternative on the agenda. This is a "value added" book for any gerontology library.

Abuse in Nursing Homes
Diana K. Harris and Michael L. Benson, the authors of Maltreatment of Patients in Nursing Homes, have strong credentials for producing a study on theft in nursing facilities. Harris codirected the first national study on the theft of possessions from nursing homes, and Benson is a professor of criminal justice. This volume, however, is disappointing, partly because the authors had so little meaningful data to utilize. Most of the volume is based on a self-administered survey of an indefinite number of employees of 47 nursing facilities deemed representative of similar facilities across the country. The total employees in the universe is not clear because the questionnaires were distributed by the nursing homes, and there is no certain count of the number handed out. The investigators estimate the return from the survey at 22%, which, of course, raises questions of selection bias and representativeness. Worse is that only 17 (1.5%) of the respondents reported on the variable of interest, namely, whether they had actually stolen possessions at a nursing home. Valid conclusions are difficult to draw from comparing these 17 respondents to the rest of the survey respondents, yet the authors make some attempt. I felt, however, that their opinion of what is going with the nursing home staff drove the conclusions, because there were insufficient observations to check their perspective. They observe, for example:

Surprisingly, the findings on education and income show slightly higher levels of theft among the more educated and well-to-do than their less educated and well-off counterparts. However, all of these results must be interpreted cautiously ... ... more educated and well-to-do respondents may have more experience filling out questionnaires and with research techniques designed to protect confidentiality of responses. Hence, they may be more willing to trust our assurances regarding confidentiality and to respond truthfully than less educated respondents to our sensitive, personal questions (p. 45).

The authors did not interview any of the "victims" of theft, but distributed 417 surveys to family members who served, presumably, as proxies for the residents. The limitations of using proxies are well known among researchers. Replies totaled 196 (or 47%), of which 79 believed that employees had stolen from their relative. Based on these findings they conclude, "... we think it is reasonable to conclude that employee theft from patients is not uncommon. Indeed, for the elderly the risk of theft victimization may be higher inside than it is outside of nursing homes" (p. 65). That is a bold conclusion.

From my own personal experience of visiting my mother in a nursing home over a period of two years, there is no question that possessions (especially clothing) regularly disappeared, and sometimes reappeared. I once told my mother that she was dressed very nicely, and she agreed, "Yes, I just wish I knew whose clothes I am wearing." These problems might be better addressed as systemic management failures than individual proclivities.

The book then proceeds to draw on secondary research to cover physical and psychological abuse and neglect, as well as abuses of residents' finances and rights. More than half of the final conclusions and recommendations are derived from secondary research, rather than from the research in the volume.

The book has some useful word tables that categorize elements of theft, abuse, and remedies. The bibliography is extensive and there is a helpful glossary. The book should be on the shelf of an elder abuse library, but is a minor contribution to dealing with problems of nursing home care and management. I refer the reader to Culture Change in Long-Term Care (Weiner & Ronch, 2003), which I believe is more substantive.

The Journey of a Talented Caregiver
Even as Ball et al. wrote "Sometimes nothing helps," Judith Turiel, author of Our Parents, Ourselves, concludes:

"There are no right answers about care and living arrangements for the old, and for too many individuals at present there are not even good answers—not enough individual choice among a variety of good options, not enough economic support for those without substantial private wealth" (p. 246).

Turiel, a professional medical writer, offers her conclusion after taking us on a long personal journey that began in the early 1990s, when she made friends with Lillian, one of the "founding mothers" of a Gray Panther health clinic in Berkeley, California. During this personal journey, we are introduced to her father and share with her his dementia, decline, and ultimate death. We meet her mother, who cares for her husband to the end, breaks her hip and enters into her own decline that also ends in death. Even Lillian, with whom Judith has maintained a friendship, now lives in a different world and is receding from Judith's life. At the end, Judith is alone reflecting on her caretaking career, which she shares with us. In reading the book, we have lived with Judith's decision-making, doubts, anger, and eventual exhaustion. She was a talented caregiver who applied her intellect and personal energy to the struggle with the various health providers and programs to produce the best outcomes possible for her parents.

Fortunately for us, her struggles and her perceptive observations are not the private efforts of an individual that remain out of sight, but are recorded, suitably organized, and clearly expressed in this book. To a degree, this is three books in one. It is a personal journey that will strike responsive chords in all those readers who have made that trip, and serve as a travel guide to persons just starting out. In this respect it parallels Kane's and West's (2005) book on care of their mother, It Shouldn't Be This Way, Jacqueline Marcell's (2000) Elder Rage—or—Take My Father, and Brody's (2004) Women in the Middle: Their Parent Care Years.

It is also a how-to-do-it book, with its 17 word tables on how to recognize, understand or do something about dementia, stress, risk factors, end of life, and other matters. In this respect, it reflects the thinking in Teitel's (2001) A Guide for Caregivers of People With Alzheimer's or Other Dementias (Teitel, 2001), and Knittweis' and Harch's (2001) Alzheimer Solutions: A Personal Guide for Caregivers.

Finally, Turiel's volume is a sophisticated critique of the health care system and what needs to be done policy-wise to ensure that the right kind of care will be there for today's elders and aged baby boomers. Her analysis is sophisticated, as befits a professional medical writer, and it is driven by the passion of a person who has experienced, up very close and personal, the good and the bad in care of older persons. Health and long-term care services can be very good, but this goodness does not balance, nor justify the bad and outrageous policy and provider behavior which are documented in this book and others I have identified. Many of these problems flow from public policy and private gain. Turiel provides detailed and occasionally narrative footnotes to document her case. She is comfortable drawing on Rawls, Aquinas, and even Kevorkian. The policy areas she covers include aging in place, the pharmaceutical industry, justice in the distribution of health care, Medicare policy, and end-of-life issues. She offers a perceptive analysis of present day health care politics and policy. Her book echoes and reinforces Laura Katz Olson's (2003) outstanding critical assessment, The Not So Golden Years: Caregiving, the Frail Elderly, and the Long-Term Care Establishment.

Our Parents, Ourselves
solidly documented with 251 pages, 17 more pages of footnotes, 21 pages of pertinent references, and a helpful index—is both interesting and very readable. Its "value added" is high for sophisticated consumers, students, and professionals.

References

• Ball, M., & Whittington, F., (1995). Surviving dependence: Voices of African American elders. Amityville, NY: Baywood Publishers.
• Boston Herald. (2006). Unnamed study by the Center for Academic Integrity at Duke University. December 6, p. 27).
• Brody, E., (2004). Women in the middle: Their parent care years. New York: Springer Publishing Company.
• Callahan, J., (2002). Giving the elderly options in independent living. Boston Globe, November 24, p. H6).
• Kane, R. L., & West, J. C., (2005). It shouldn't be this way: The failure of long-term care. Nashville, TN: Vanderbilt University Press.
• Knittweis, J., & Harch, J., (2002). Alzheimer solutions: A personal guide for caregivers. Sausalito, CA: Lucid Press.
• Marcell, J., (2000). Elder rage—or—take my father ... please! How to survive caring for aging parents. Irvine, CA: Impressive Press.
• Olson, L. K., (2003). The not so golden years: Caregiving, the frail elderly, and the long term care establishment. Lanham, MD: Rowman & Littlefield Publishers.
• Orwell, G., (1958). The road to Wigan Pier. New York: Harcourt Brace Jovanovich.
• Teitel, R., (2001). A guide for caregivers of people with Alzheimer's or other dementias. New Brunswick, NJ: Rutgers University Press.
• Weiner, A. S., & Ronch, J. L., (Eds.) (2003). Culture change in long-term care. Binghamton, NY: Haworth Social Work Practice Press.

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