Dementia beyond Drugs: Changing the Culture of Care.
Article Type: Book review
Subject: Books (Book reviews)
Author: Rinfrette, Elaine S.
Pub Date: 08/01/2011
Publication: Name: Health and Social Work Publisher: National Association of Social Workers Audience: Academic; Professional Format: Magazine/Journal Subject: Health; Sociology and social work Copyright: COPYRIGHT 2011 National Association of Social Workers ISSN: 0360-7283
Issue: Date: August, 2011 Source Volume: 36 Source Issue: 3
Topic: NamedWork: Dementia beyond Drugs: Changing the Culture of Care (Nonfiction work)
Persons: Reviewee: Power, G. Allen
Accession Number: 267421731
Full Text: Dementia beyond Drugs: Changing the Culture of Care. G. Allen Power. Baltimore: Health Professions Press, 2010, 264 pages. ISBN 978-193252-956-2 $32.95 paperback.

The percentage of the U.S. population age 65 or older is projected to increase from 12.4 percent in 2000 to 19.6 percent in 2030 (Centers for Disease Control and Prevention, 2003). In addition, a recent study regarding the prevalence of dementia, primarily a disease of those 65 and older, found that 3.4 million Americans age 71 and older have dementia, one in seven of the people in this group (Plassman et al., 2007). As the number of people with dementia increases, the need for improved methods of care increases. Improved methods of care are essential to addressing the quality of life of those with dementia and the costs of their long-term care.

In Dementia beyond drugs: Changing the Culture of Care, G. Allen Power begins by describing the precipitants of his journey from being a traditional physician practicing in a nursing home to one who embraces the culture-change perspective of the Eden Alternative, founded by William Thomas. Tom Kitwood, a British psychologist who founded the Bradford Dementia Group, which has a "person-centered" approach to people with dementia, was another significant influence for Dr. Thomas. Through this introduction, Power began to recognize the distress caused to patients by the institutional approach to management of those who suffer from dementia. The book deals with the issues of changing a conventional nursing home into one in which culture change is occurring. There is a great deal to learn from this book, whether you are new to this topic or looking for additional ideas about how to continue to improve an already existing program of culture change.

Part 1 addresses "paradigms and problems," beginning with a review of dementia, with special emphasis on the behaviors exhibited by those who suffer from dementia that others find troubling and the poor outcomes that frequently result from current medications used to treat these symptoms. This is followed by a description of the usual care received by those with dementia, even in facilities that are trying to follow the concepts of culture change.

Power informs us that most people with dementia are medicated with antipsychotic drugs for behavioral symptoms such as agitation, aggression, anxiety, pacing, and repetitive speech and that the rate of increase of prescribing antipsychotic drugs to nursing home patients, especially with the advent of atypical antipsychotic medications, went from 16 percent in the 1990s to nearly 32 percent by 2000. Most of this medication is prescribed to address the behaviors of dementia patients that staff and family find difficult. This, of course, has led to a concurrent increase in cost. Power reports on several studies that have found that the effectiveness of all types of drugs used to treat symptoms of dementia have found them to have very limited benefit, at best, and that the risks often outweigh the benefits. He also discusses how studies have found that with the use of targeted psychosocial interventions, antipsychotic medications could be discontinued without any worsening of symptoms.

Part 2 addresses "shifts" in the practices of care for those with dementia who are living in nursing homes. Current concerns about nursing home care and the problems that contribute to them begin the chapter. A new experiential model of understanding dementia and how it affects those who suffer with it is discussed. This model is aimed at allowing people with advanced dementia to experience well-being and growth in their daily lives, with the use of little or no medication.

Moving into a long-term care facility leads to numerous problems for the 1.8 million people currently living in them. Medical reimbursement programs make long-term care dependent on medical diagnoses and treatments. Thus, interventions that are monetarily reimbursable are preferred to those that are not. Individuals suffer many losses--homes, possessions, privacy, control, meaning of life--when they enter a long-term care facility. Dementia only worsens their situation. Nursing homes tend to treat these losses of identity and meaning by treating the physical aspects of the person and ignoring the person's spirit and psyche, because interventions for physical problems are reimbursable.

Other aspects of moving into a nursing home also contribute to problems for elders with dementia. Nursing homes are often built and operated in a way that makes it harder for elderly patients to get around than it was in their own homes. These features often contribute to the anxiety that residents experience. The administrative functioning of many nursing homes makes employees place tasks before people and, thus, makes change difficult as it only seems to add another task to their full plates. As a result, the direct care workers who know the elderly residents best are usually left out of decision-making processes. In addition, nursing homes do not see elderly residents as active participants in their personal care, stifle diversity and individuality, and act as protectors rather than as advocates of personal growth throughout the life span. Nursing homes are rewarded financially for illness, frailty, and functional dependency, and they are punished for improving the overall quality of life of residents.

Power describes the process for transforming a traditional biomedical setting into one that uses an experiential approach. This new model seeks to see people with dementia as they see themselves in order to change the environment, whether it is a nursing home, the elder's own home, or the community. The model's goal is to meet the individual's needs rather forcing the individual to conform to the needs of a setting. Thus, the focus of change is on transforming the care environment, not the individual with dementia. Power clearly focuses on the need to change from the biomedical model's practice of seeing problems as residing within people who have dementia rather than in how they are perceived and treated. He suggests that changing the language used to discuss people with dementia and their care to reflect a person-directed, experiential view is an important early step in the process.

The first steps in this change involve deinstitutionalizing care environments, whether in nursing homes or the community. He states that changes in the physical environment are the final step in this process; however, he discusses these first. Important aspects to address in changing the physical environment are its size and layout and the decor, furnishings, lighting, and acoustics that meet the needs of elderly residents. Power stresses the need to establish options for privacy and spaces that have meaning to individuals. Good lighting, without glare, and good acoustics are critical components of the environment.

Improving the interpersonal environment to allow for the development of close and ongoing relationships among residents and all staff is paramount. Power identifies this as key to deinstitutionalizing the environment. Knowing a resident as a person, not just a patient, is the first step. Restoring choice and control to the resident and his or her "care partners" (Power's term for caregivers) is an important next step that creates collaboration among all players. Creating options for residents to continue in some caregiving role is another important component of changing the interpersonal environment. The final components of changing this aspect of the environment is finding ways for elderly patients to have meaning and to enjoy the simple pleasures of day-to-day life and an environment that allows for spontaneity. The importance of meaning to elders with dementia, and all older adults, is addressed in a chapter that clarifies the differences between being kept busy in activity programs and creating meaning in the moment. A major factor in developing meaning is involving residents and care partners in the grief process when another resident dies. This not only allows them the opportunity to grieve, but also enables residents to realize that they are valued and will be remembered.

The final component of overall milieu change is transforming the operational environment. Building consistent care partner relationships is essential to this aspect. The challenge to administration and staff is a significant hurdle to address in regard to staffing patterns, concerns about costs, creating a buy-in for nurses and certified nursing assistants who may resist working consistently with elders and families they find difficult, and expansion of the roles of all personnel to include involvement with residents. Planning holistic care that involves the resident, the family, and the primary nurse and aide in the process is another aspect of this process. From these two steps comes the creation of "neighborhoods" in the facility, which allows for empowerment of teams who make decisions about life in their neighborhood. This is seen as part of the course of action that creates meaning and joy in the life of the elderly resident and while supporting all staff in participating in this process.

This part concludes with possible future alternatives to the care for older adults, including those with dementia. Multigenerational communities and the green house model, which uses principles of the Eden Alternative, are discussed as viable substitutes for traditional nursing homes. This movement involves processes similar to the one used in the deinstitutionalizations of those with psychiatric illness and developmental disabilities in the past. Examples already in existence are described, along with some specific potential plans for expanding these alternatives.

Part 3 address "solutions" to specific concerns, focusing on the care partners of elders who suffer from dementia. The effect of interpersonal interactions as they currently occur in nursing homes is reviewed. The main point that Power stresses is the need to honor the humanity of the person. The important aspects of interacting with a friend are elucidated as a means of establishing a reciprocal and empowering relationship with the elder who has dementia. Alternative approaches to caring for elderly people and concrete suggestions for understanding and responding to behaviors of concern are discussed. We are reminded of the most basic aspects of respect for another person, sometimes lost in the medicalized nursing home setting, such as knocking and waiting for a response before entering an elder resident's room, creating a safe and quiet space for a conversation in which the resident can see and hear us, projecting that we are relaxed and have an accepting demeanor, sitting down when speaking so as to let the resident know that he or she has our attention and to diminish any power differential, listening to what the resident has to say and not just forging ahead with our own agenda, speaking at a pace that gives the resident time to process what is said, and using eye contact and nonverbal cues to increase the connections made with the resident when communicating.

The challenges of personal care for the elderly person and ways for care providers to better manage these situations are discussed. Power strongly points to the need for organizational transformation to successfully establish and maintain the changes needed to accomplish these improvements in care. We cannot expect direct care staff to better the lives of elders with dementia by developing engagement with them, fostering their individuality and autonomy, and promoting the development of personal meaning in all of the events of their day-to-day life without the organizational support to do so. Support for care partners is critical to success.

Power provides suggestions for breaking through communication barriers--such as word-finding problems, confusing word substitutions, third-person speech, confabulation, emotional amplification of speech problems, reverting to a language of origin, and tangential speech--along with numerous vignettes to illustrate the processes described. These approaches, rather than medication, are then used to demonstrate how they can be effective during times of distress and with behavioral expressions of those with dementia.

The concerns of frequently exhibited behaviors such as anxiety and agitation, their numerous causes, and intervention options are addressed. Power discusses the need to look at how medical illnesses may affect behavioral symptoms. Medication side effects, infections, and other medical illnesses are the main areas to be addressed. A review of an elder resident's medications is the first step. Does the drug affect the brain? Does the drug affect mobility, sleep, or bowel or bladder function; cause an allergic reaction; or cause a chemical imbalance or organ damage? The next concerns are the possibility of infection and other medical illness. The most important consideration here is the presence of pain. Because most people with anxiety or agitation will not have an acute medical problem, an environmental audit is imperative. This audit includes investigating the possibility of pain or discomfort, room temperature, bowel or bladder concerns, hunger, thirst, lightening problems, overstimulation due to noise, and understimulation due to isolation. Discomfort with the choice of words used by others in the surroundings, barely audible speech that may cause the elderly resident to become fearful or suspicious, and competing sounds that interfere with ability to focus may also be areas of concern. Issues regarding approaching an elder in distress conclude this section of the book. The use of good communication skills is paramount, as is remembering that the person in distress has a reason for the way he or she is feeling.

Specific behaviors--such as expressing a desire to "go home," pacing and wandering, episodic physical aggression, calling out and engaging in repetitive speech, displaying disinhibited behavior, and displaying behaviors associated with sundown syndrome--are all addressed by using the experiential approach. Identifying "whose problem is it?" is the first step in the process. This, of course, requires some self-examination as to why a behavior is bothersome to us and recognizing that although we see the behavior as a problem, it is often an expression of need. The process of understanding such behaviors begins with never assuming that a person cannot be involved in decision making without giving him or her a chance to do so, creating meaning by knowing as much as possible about the person to find ways to create familiarity in the physical surroundings, and incorporating meaning making into the traditions and tempos of everyday life. Finally, nonmedication approaches to paranoia, delusions, and hallucinations are discussed, highlighting the experiential approach, with a focus on determining whether a person is truly delusional, determining if the person is experiencing an acute delusional state/delirium because of illness or medication side effects, and then determining whether a transformed environment can address the issue without medication. Although most of Power's examples are resolved without medication, he demonstrates how this approach can be effective in managing care even if time-limited medication use is necessary.

Power ends the book addressing the questions of whether experiential approaches really work and if these approaches are safer and more effective than traditional interventions currently in use. Research studies, Power's anecdotal experience, and his description of a visit to a facility that uses experiential practices are cited in support of his position--these approaches are effective. There is a need to fill in the gaps in the research on experiential care by developing new methodologies that specifically measure well-being and are able to capture the wide range of transformative interventions that occur concurrently in the transformative approach. Several studies that support this approach are briefly noted.

This book is an excellent resource for social workers who come into any type of contact with elders who suffer from dementia, whether through direct care or through work with family members, friends, or others concerned for such elders' well-being. Power writes in a clear and compassionate manner while frankly broaching the problems that currently exist in our systems of care for elders with dementia. The book is filled with practice advice that is supplemented by powerful and often moving vignettes. The central concepts--including seeing a person as an individual, not as a disease; person-centered care; the power of language; identifying the cause of a problem rather than seeing a person as the problem; allowing for and creating opportunities for choice, autonomy, and meaning in life along with opportunities to experience joy and knowing that one is cared about--should be extremely familiar to social workers. Creative problem solving within a biopsychosocial--spiritual model is a hallmark of social work practice, along with the recognition that change must occur at the micro, mezzo, and macro levels if it is to be effective. This familiar perspective will help social workers understand Power's rationale for the model he advocates and recognize the import difference these changes can make to the quality of life of elders suffering from dementia.

REFERENCES

Centers for Disease Control and Prevention. (2003). Public health and aging: Trends in aging: United States and worldwide. Morbidity and Mortality Weekly Report, 52, 101-106.

Plassman, B. L., Langa, K. M., Fisher, G. G., Heeringa, S. G., Weir, D. R., Ofstedal, M. B., et al. (2007). Prevalence of dementia in the United States: The Aging, Demographics, and Memory Study. Neuroepidemiology, 29, 125-132.

Elaine S. Rinfrette

Edinboro University of Pennsylvania, Edinboro, PA
Gale Copyright: Copyright 2011 Gale, Cengage Learning. All rights reserved.