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BOOK REVIEW |
UCLA School of Public Affairs-Social Welfare Box 951656, 5226 Public Policy Building Los Angeles, CA 90095-1656
Alzheimer's Disease: Living with Grief, edited by Kenneth J. Doka. Hospice Foundation of America, Washington, DC, 2004, 290 pp., $24.95 (paper).
Counseling the Alzheimer's Caregiver: A Resource for Health Care Professionals, by Mary S. Mittelman, Cynthia Epstein, and Alicia Pierzchala. American Medical Association, Chicago, 2003, 346 pp., no price listed (paper).
Ethical Foundations of Palliative Care for Alzheimer Disease, edited by Ruth B. Purtilo & Hen A. M. J. ten Have. The Johns Hopkins University Press, Baltimore, MD, 2004, 368 pp., $49.95 (cloth).
How to Communicate with Alzheimer's: A Practical Guide and Workbook for Families, by Susan Kohler. Granny's Rocker Publishing, Venice, CA, 2004, 138 pp., no price listed (paper).
The Person with Alzheimer's Disease: Pathways to Understanding the Experience, edited by Phyllis Braudy Harris. The Johns Hopkins University Press, Baltimore, MD, 2002, 289 pp., $52.00 (cloth), $19.95 (paper).
The Validation Breakthrough: Simple Techniques for Communicating with People with "Alzheimer's-Type Dementia," by Naomi Feil. Health Professions Press, Inc., Baltimore, MD, 2002, 352 pp., $26.95 (paper).
It Takes a Village
"One must question whether the technological ‘assembly line’ of care that currently characterizes our hospitals and nursing homes provides the subtleties and safeguards of caring that patients need and desire."—Mezey & Fagin (2001, p. 145)
Scholars, practitioners, and policy makers in the health field marvel at the major advances in biomedical technology in the last several decades that have the potential to alleviate the effects of and to eventually cure chronic diseases such as Alzheimer's disease (AD). For starters, these advances—controversial as they may be—include mapping the human genome and stem cell research. Such technology is expensive, very specific to a pathological process, and focuses on the individual. However, another discovery is occurring in which something old is new again: the healing power of humanity. This technology is not expensive, per se, very broadly applicable to a range of social processes, and focuses on the individual and his/her web of relationships.
So, why is humanity being rediscovered? Age has a way of leveling the field. Diseases, like Alzheimer's, which occur with increased risk as we age, have a way of leveling health care technology to include not just the biological mechanisms of healing but also the psychosocial mechanisms of healing, especially when healing is not synonymous with being cured. Thus, amidst the entire spectacle of high technology health care, the importance of humanity enters again with the publishing of six books in the past two years that all address some aspect of coping with AD.
That six books have been published in such a relatively short time span and all address some level of the psychosocial aspects of Alzheimer's more than the biomedical symbolizes a reawakening of what makes us all human: the need to relate to others in a meaningful way. The importance of relationships that persons with AD have (or do not have) is a fundamental theme in all of these books. Though all of the books pertain to this theme in one way or another, none sufficiently addresses it. Whether this is possible to do in any one book is something I will return to later in this essay. In all, two books explicitly discuss palliative care and hospice principles, one book provides scholarly insights into the personal experience of AD, two target formal health care providers either as direct caregivers or as counselors of family caregivers, and one very practically presents strategies for family caregivers on how to communicate with persons who have AD. There are many dimensions in which to juxtapose these books, but let the following simple introduction to each of them suffice for now.
Three of the books are edited; the others are either single or coauthored. Alzheimer's Disease: Living with Grief, edited by Kenneth J. Doka, adequately portrays the biopsychosocial facets of Alzheimer's and other dementias along with how they interface now and will in the future with the health care delivery system. A second book, Ethical Foundations of Palliative Care for Alzheimer Disease, edited by Ruth B. Purtilo & Hen A. M. J. ten Have, addresses areas similar to those in Doka's volume but is even broader because of its international scope and its explicit integration of the current and potential roles of palliative care for persons with AD. Ethics is an overarching perspective throughout this volume. The last edited volume, The Person with Alzheimer's Disease: Pathways to Understanding the Experience, by Phyllis Braudy Harris, is paradoxically both scholarly and personal as it is based on empirical qualitative research but addresses the less discussed, relatively intangible aspects of living with AD.
The other three books all use one form or another of case studies and/or vignettes to illustrate points or approaches. The Validation Breakthrough: Simple Techniques for Communicating with People with "Alzheimer's-Type Dementia" by Naomi Feil, focuses on relatively practical techniques for informal and formal caregivers to communicate with persons who have Alzheimer's-type dementia. The essence of her technique, "validation," considers both the stage the person is in with regard to dementia as well as past unresolved needs that he/she may express during interactions. The purpose of validation is to delay the person's progression into further withdrawal by affirming instead of ignoring or negating past unresolved needs. Counseling the Alzheimer's Caregiver: A Resource for Health Care Professionals, by Mary S. Mittelman, Cynthia Epstein, and Alicia Pierzchala, is practical, too, but it is not based on the authors' direct experiences with persons with Alzheimer's, per se, but rather their research study, the Spouse Caregiver Intervention Study. The purpose is to comprehensively educate health care professionals about how to counsel family caregivers to take care of themselves and their loved one with AD. How to Communicate with Alzheimer's: A Practical Guide and Workbook for Families, by Susan Kohler, although practical as well, stands apart from all of the other five books in that it is explicitly directed at and tailored to lay, informal caregivers. Its entire design including the cover and contents is simple and welcoming so as not to appear laborious to use. Like some of the other books, it addresses the basic interpersonal skills that deteriorate as AD and related dementias progress. Unlike the other books, Kohler's keeps the message focused and consistent: Connect to another person via communication. This concept of "connecting" to the person with AD is sprinkled throughout all of the other five books either implicitly or explicitly, but in Kohler's book connecting is explicitly the essence of her strategies.
As in Kohler's book, connecting is the essence of this essay. With the books introduced, I will analyze what connecting means and how to do it. I will compare and contrast primarily two of these books on the techniques of connecting to a person with AD. Then, I will briefly present several major gaps that transcend all or some of the books and require further research and policy development.
The concept of connecting is not new but as old as humanity itself; however, our health care system, especially long-term care, needs to be reawakened to its unequivocal importance to the well-being of persons with AD and other forms of dementia. The time is long overdue to ask how we can take the importance of connecting to the next level: from one of merely acknowledging and valuing it to one of actually practicing it.
The Connecting Fallacy
"Alzheimer's is a real test of the humanity of the system."—Jack D. Gordon (in Doka, 2004, p. v)
The "connecting fallacy" is the erroneous belief that we can provide technical care to persons with AD and other forms of dementia and the interpersonal care will simultaneously follow automatically. Technical care encompasses a wide range of physical needs including medication for slowing memory loss to incontinence care. The range of assistance needed with activities of daily living (ADLs) is more often than not the basis for long-term care placement decisions, Medicare and Medicaid reimbursement policies, and family crises with providing care to loved ones (Levy-Storms, 1996). In contrast, interpersonal care addresses the wide range of emotional and social needs. Though interpersonal care needs contribute to the above mentioned decisions, policies, and crises, they are secondary to technical care needs. In the six books reviewed in this essay, interpersonal care needs are emphasized at the expense of technical care needs. These volumes speak to what the formal health profession/caregiver training manuals do not do enough: the ways to connect with the care recipients beyond the technical care tasks at hand. Although "connecting" can include physical touch, it is usually less tangible. It is as complex as love itself, fundamental to our human existence; yet, we do not put nearly as much effort into assuring it happens during care for a person with AD.
These books more or less offer theoretical or practical principles from which caregivers' communication behaviors can really connect to the care recipient. For example, Purtilo and ten Have's volume, Ethical Foundations of Palliative Care for Alzheimer Disease, presents such principles and calls for "care services that meet high moral standards" (p. xiv). These moral standards include dignity, autonomy, respect, beneficence, personhood, and coherence. These are not new, but the way Franz Illhardt discusses them is in his chapter in the Purtilo and ten Have volume—"Saying No to Patients with Alzheimer's Disease: Rethinking Relations among Personhood, Autonomy, and World." Illhardt philosophically explores the meaning of these principles not from the standpoint of the individual with AD but rather from the interaction between the individual and his/her caregiver. What a departure from a skewed individual approach to one where the desired state is not strictly within the individual but also relational! Thus, any of these principles can only truly exist as a process—an interaction between two or more individuals.
For example, while beneficence "... requires empathy for the inner situation of an incompetent patient" (p. 203), coherence is more complicated. According to Illhardt, coherence in caregiving must be authentic:
Authenticity is more important than mere consistency. To be authentic means to be a unique, acting person in one's own view as well as in other's. Whatever this coherent person does, she does not do it simply as part of a professional role-expectation, but due to a conviction that has its roots in thoughtfulness rather than in adherence to rules. Naturally, such a person can say and must say no sometimes. But the caregiver's coherence makes her an authentic advocate only as long as she can truly accept the demented patient; otherwise, she is not abiding by the therapeutic covenant. (p. 203)How many times has one seen a caregiver interact in a rote fashion, almost mindlessly, and get surprisingly frustrated with the care recipient's reaction? According to Illhardt, it is the not the care recipient's reaction that is the source of the trouble; it is the interaction or the shared lack of authenticity, coherence, and autonomy that occurs when a caregiver says "no." The enlightening idea to look at the relationship rather than the individual in order to connect needs grounding. Although two of the books—by Feil and Kohler—offer practical insight into how to connect, the importance of these principles needs to be underscored.
Connecting: Ways to Relate to the Person
"In addition to its being the ‘doorway’ to quality of care, the patient–provider relationship is regarded as the most crucial component of the health care delivery system."—van Servellen (1997, p. ix)
Merely acknowledging and/or appreciating the principles that assure a high moral standard of care through interaction are not enough. After all, that is the premise underlying the connecting fallacy: to simply acknowledge is to believe and speak in "long-term care platitudes." No one will question the importance of dignity, autonomy, respect, etc., but, then again, no one really knows how to practice it either. Yet, everyone communicates. As Kohler observes, one cannot not communicate. Communication is the way to relate to persons with AD, because they can still communicate albeit less so as the disease progresses. All of the books agree on that point, but only two really make explicit suggestions on how caregivers can learn the language to connect.
Feil and Kohler have substantial credibility. They practice what they preach. Feil has her master's degree in social work; Kohler is a certified speech-language pathologist with a master's degree. Both wrote after extensive (i.e., more than 15 years) direct experience with persons with Alzheimer's and the families that care for them. The only other book of the six that may have authors with direct experience is the volume by Mittelman and colleagues, but no information is provided about the authors except their degrees and certification. Feil and Kohler's comfort with direct experience reveals itself from their persistent use of vignettes throughout the books that illustrate interesting cases or techniques.
With the similarities of both Feil and Kohler as authors highlighted, their books have similarities and differences in their strategies to communicate. In terms of similarities, both address the characteristics of persons with AD in detail before addressing how the caregiver should try to communicate with them. After all, how can one "connect" without knowing the other to some extent? For example, both authors stage persons with Alzheimer's according to their communication abilities. Feil presents four stages (i.e., 1. malorientation; 2. time confusion; 3. repetitive motion; 4. vegetation). Kohler presents three. She does not label them but only characterizes them. The ways both authors characterize the stages is remarkable—truly—in terms of the specificity of what they have noticed. Feil's characterization of these stages and her book overall (i.e., principle-based techniques, scope of techniques, and case studies) are much more dense than Kohler's, which might be attributable to their different disciplinary backgrounds or the specificity of their target audiences. Both target family caregivers. However, Feil also targets professional caregivers, whereas Kohler does not do so explicitly.
Likewise, both present concrete techniques for the caregiver to employ depending on the stage the person with Alzheimer's is in. Feil even provides a step for caregivers to undertake before trying the others (e.g., centering oneself so as to open oneself up to the feelings of the other). Feil's remaining techniques include: using non-threatening, factual words to build trust; rephrasing, using polarity, or asking the other person to think about the most extreme example of his/her complaint; imagining the opposite; reminiscing; maintaining genuine, close eye contact; using ambiguity or acknowledging fictional words as a way to encourage continued expression; using a clear, low, loving tone of voice; observing and matching the person's motions and emotions (i.e., mirroring); linking the person's behavior with an unmet need; identifying and using the preferred sense, touching, and music. Feil presents each of these techniques descriptively then provides an example for how they work immediately following the description. Then, later in the book, she applies all of these techniques in more detail based on example cases of persons with dementia in different stages. The depth in which she illustrates her techniques is as much as anyone can do in a book, and no one could do so without such extensive experience and firsthand observations of persons with AD.
Several of Kohler's techniques agree with Feil's, but she presents them differently. Kohler describes nine strategies and then immediately following provides specific behaviors to implement each. Her applications of the techniques do not appear until the end of the chapter where she also provides a chapter summary. Strategies that overlap with Feil's techniques include speaking in a calm tone of voice, watching one's language (speaking in concrete terms), rephrasing, using touch, and being a good listener. Kohler has other strategies that overlap with Feil's, including repetition, use of eye contact, etc., but she presents such specifics within a strategy rather than as a strategy in and of itself. Moreover, Kohler suggests activities such as listening to music and viewing home movies and albums from which their personal histories can be explored together. However, she presents these activities separately from the strategies, which is a point that I will return to shortly.
There are several important aspects of Feil's and Kohler's techniques/strategies that fundamentally differ. Feil's validation technique is built around the premise that persons with AD have unresolved past needs that prevent them from fully achieving self-actualization (in the Abraham Maslow theoretical sense). Thus, she promotes exploration of past issues in the present in a manner that honors but does not negate the past. In contrast, although Kohler suggests reminiscing, she promotes orienting the person with AD to the present with calendars and subtle corrections to their speech without saying they made a mistake at all. Whose approach is best? Feil's approach states that her techniques are inappropriate for anyone who does not have unresolved past needs. So, in the absence of such unresolved needs, I surmise that Kohler's method of orienting to the present is more appropriate. However, who does not have unresolved past needs? Furthermore, beyond pure description neither approach provides a practical way for caregivers, per se, to determine the care recipient's stage and to definitively evaluate whether or not they have unresolved past needs. For ways to get such assessments from health care professionals, one can see the appendices of Mittelman's book.
A Necessary Philosophical Dialogue
"Does it [Alzheimer's] give rise to a collective empathy that transcends individualism?"—Christine K. Cassel (in Purtilo & ten Have, 2004, p. x)
After the in-depth examination of Feil and Kohler's approaches with their numerous similarities but fundamental differences, one may ask questions. First, are their approaches really different? At face value, they are probably so, because they are from multidisciplinary perspectives. Further, they are different in their intentions. Feil wants caregivers to set up validation groups internationally to train and support caregivers in applying her method (this has happened as her book is in its second edition). Seemingly, her vision is to create an international network of caregivers—a system, which is very akin to a social work perspective. Kohler wants family members to be motivated to review and use her strategies immediately after reading them. She's a clinician with an eye towards direct practice.
Second, what is the difference between a technique, a strategy, and an activity to share between two people? In light of the ample overlap between the two approaches, the difference is probably more semantic than not. Kohler, however, is so very well-versed in the fundamentals of communication, and the simple presentation of her strategies appears more user friendly, especially to the lay family caregiver. In either case, the different styles taken by Feil and Kohler suggest an inherent complexity in conveying how to connect. For example, after reading the books, where does one begin? What's missing?
A Return to the Big Picture
"It is not true that ‘there is nothing left to do'."—Christine K. Cassel (in Purtilo & ten Have, 2004, p. v)
If all of these books share a variation of the connecting theme—even if only in a chapter or two—then have the bases been sufficiently covered? The short answer is no. But the authors' efforts spark ideas on where to go from here based on what is missing. First, what is adequately covered in all of these books is the nexus of the key players: the person with AD, their primary and secondary caregivers, the extended family, the health care professionals that the caregivers and care recipients visit, policy makers, and ethicists. Despite this impressive range of players, an important key player is still missing: the frontline caregiver. Certified nursing aides (CNAs) provide 90% of the care to institutionalized persons with AD (McGilton, 2004), but next to the "career" family caregiver (Aneshensel, Pearlin, Mullan, Zarit, & Whitlach, 1995) they are the least trained in connecting, know relatively little about the care recipient's background and personal history, and are very likely to be from an entirely different cultural background. Where is the strategic book for them on connecting when they are not only demographically different from the care recipient but also from an entirely different culture? Doka has a chapter on "Culture, Ethnicity, and Dementia" in his book in which he addresses how culture affects both perceptions of AD and subsequent treatment decisions. However, he does not discuss the interface of care and culture as occurs when a certified nursing aide from Mexico, for example, cares for a Jewish elder from Los Angeles.
These nursing aides do not need their own book, per se, but they need additional training beyond what they receive to become "certified" (or the requirements to be certified need revising). Mittelman's book on Counseling the Alzheimer's Caregiver is a manual for health professionals to better counsel family caregivers. The same concept is needed for CNAs. Currently, Title 22 of the California "Licensing and Certification of Health Facilities and Referral Agencies" requires 100 clinical and 50 theory training hours. Of these hours, only two theory hours are dedicated to interpersonal skills—no clinical hours are required for this module. In these modules, they learn mostly about biomedical aspects of direct and indirect technical care. Direct care concerns the long-term care resident (e.g., dressing), and indirect care concerns resident-related tasks, such as making beds. Equally if not more important than such technical care is the interpersonal manner of care. No loving family member (or resident) would be satisfied with a well-made bed over a "well" relative (or "being well-connected to" in the case of a resident). Ideally, they want both but they would no doubt choose the latter over the former.
Of course, is this suggestion to imply that CNAs can all be trained to successfully connect at a high level of skill? No. However, more and higher quality training on how to connect these formal caregivers to care recipients should improve the interpersonal manner of care. In other words, while not everyone can be empathetic to the same degree, everyone should be able to improve, relatively speaking. The principle here is to optimize rather than design one size that fits all relationships. An important policy issue is whether even a gold standard training program alone will sufficiently change behaviors in long-term care settings where communication problems may be systemic. With such an overwhelming issue raised, one may resort to philosophical perspectives. Bruce Jennings, in his chapter in Doka's volume, calls for "... caregiving environments that provide some measure of rehabilitation in terms of the human relationships, modes of interaction and communication, and the sustaining of semantic agency and moral personhood (making meaning, and being treated with respect; p. 277)."
Although some of the authors in these six books state directly that the intent is to stir debate and further reflection, others are confident in their resource (Mittelman et al.), technique (Feil), or strategy's (Kohler) ability to create new and improved caregiving behaviors. That is, some of these authors expect change to occur in care recipients as a result of the caregivers' new communication behaviors. For example, Feil asserts that validation will result in fewer psychotropic drugs being needed, and care recipients will be delayed in their progression towards vegetation. However, her assertions are not based on empirical scientific evidence, specifically of the more objective type of independent observations (Fine & Rouse-Bane, 1995). In this current time where product speaks louder than process, this fault cannot be ignored. In keeping with the essence of this essay, though, evaluations cannot take the individual/attributional approach of focusing on the caregiver, health provider, or care recipient separately. Evaluations must focus on the dynamic relationships between them in order to genuinely address the efficacy and effectiveness of connecting.
In closing, no one book exists that fully captures the meaning of connecting in a universal fashion. Although this is possible, it is not necessarily practical. Taken together, these books offer significant contributions in how to cope with the otherwise unfathomable idea of becoming or dealing with an "empty vessel" by raising our consciousness about connecting or offering tangible ways to connect. Accomplishing this was possible by portraying AD and related dementias as having physical, mental, emotional, and social dimensions with the latter being expressed through interactions between caregivers and the older persons, themselves. As Jennings stated so aptly in his chapter, "to wrong a person is to treat that person like an object or a thing; it is to fail to recognize and acknowledge the humanity of the person" (p. 267).
References
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