Abstract
Tronto (1993) outlined four principles that are part of the ethic of care of service professions: (1) recognizing and being attentive to others, (2) taking responsibility for action, (3) performing caring work competently, and (4) being responsive to care receivers’ position or considering care from their perspective. The increasing incidence and prevalence of dementia require occupational therapy practitioners to better understand the needs of people who have dementia and to find innovative, evidence-based ways to enable occupation through an efficient and cost-effective therapeutic process, all the while considering the desires, preferences, and aspirations of people with dementia and their caregivers. This issue of the American Journal of Occupational Therapy includes the summaries of several systematic reviews that were part of an evidence-based practice project initiated by the American Occupational Therapy Association (AOTA) in 2006. The findings of these reviews strengthen occupational therapy’s ethic of care.
René Padilla, PhD, OTR/L, FAOTA
Alzheimer’s disease (AD) is an irreversible, progressive brain ailment that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks of daily living. According to estimates, as many as 27 million people in the world, 5.3 million of them in the United States, have AD (Alzheimer’s Association, 2009b). Unless the disease can be effectively treated or prevented, the number of people with AD will increase significantly if current population trends continue. Worldwide, the number of people with AD is predicted to double every 20 years to >80 million by 2040, with much sharper increases in low- and middle-income countries than in high-income countries (Alzheimer’s Disease International, 2009). The annual number of incident cases in the United States alone is expected to more than double by the midpoint of the 21st century: from 377,000 in 1995 to 959,000 in 2050 (Hebert, Beckett, Scherr, & Evans, 2001). AD is the sixth leading cause of death among U.S. adults, and its mortality rate is on the rise, unlike heart disease and cancer death rates, which continue to decline (Centers for Disease Control and Prevention, 2008).
The risk of AD increases with age, and the U.S. population is aging. In most people with AD, symptoms first appear after age 60 (Alzheimer’s Disease Education and Referral Center, 2006). About 13% of Americans > age 65 have AD (Alzheimer’s Association, 2009a). The number of people ≥ age 65 is expected to double from 36 million in 2003 to 72 million in 2030, and the number of people with AD doubles for every 5-yr interval beyond age 65. The incidence of AD is approximately 14 times higher among people > age 85 than among those between ages 65 and 69 (Kukull et al., 2002). Although no gender differences have been found in the incidence of dementia up to high age, after age 90, the incidence of AD is higher for women than for men (Ruitenberg, Ott, Van Swieten, Hofman, & Breteler, 2001).
Care of people with dementia is extremely resource demanding and has a great impact on both formal care systems and informal caregivers (Wimo & Norlund, 2007). Approximately 70% of people with AD are cared for by friends and family at home (National Academy on an Aging Society, 2000). People with AD and other dementias are high users of health care, residential care, and home and community services, particularly as the disease progresses. An estimated 47% of all nursing home residents have a diagnosis of AD, and at least 50% of people living in assisted-living facilities or participating in adult day services have AD (Alzheimer’s Association, 2009a).
The symptoms and course of AD vary widely, but it is characterized by progressive loss of memory and cognitive function (Sarazin, Horne, & Dubois, 2007). The most common early symptom is forgetfulness severe enough to interfere with a person’s ability to function at home or at work. As the disease progresses, people with AD find it hard to plan or complete everyday tasks, have problems with language, and can become disoriented to time and place. Poor or decreased judgment; problems with abstract thinking; misplacing things; changes in mood, behavior, or personality; and loss of initiative are also common symptoms of dementia. Because of these progressive symptoms, people with AD experience decreasing independence in a wide range of occupations including activities of daily living, work, leisure, and social participation (Levitt, 2007).
No cure or effective treatment for AD exists (Alzheimer’s Association, 2009a). Understanding of its pathophysiological basis is increasing rapidly, however, and several potential treatment modalities have emerged. Although substantial research has focused on drug development, the optimal application of such drugs remains controversial (Cummings, 2008). Nondrug therapy for the person and caring for family members remain the main elements in delaying institutionalization. A major point of this approach is to consider the disease manifestations not only as the consequence of brain lesions but also as the impact of the disease on the person’s affective and relational functions (Gräsel, Wiltfang, & Kornhuber, 2003). The main aims of this therapy are identification and treatment of excess disability, understanding and control of psychobehavioral manifestations, sustaining and stimulating cognitive function and communication, maintaining the patient’s autonomy, and alleviating the caregiver’s burden. Moreover, some evidence has shown that purposeful physical activity delays the onset of dementia in older adults and slows down cognitive decline to prevent the onset of significant cognitive disability (Barnes, Whitmer, & Yaffe, 2007).
Occupational therapy services for people who have AD and related dementia are provided in multiple settings that range from hospitals and special care units to community centers and homes. In all of these settings, client and caregiver education, training, and support are essential. Services may be consultative or on a programmatic level. The systematic reviews included in this issue of the American Journal of Occupational Therapy provide occupational therapy practitioners with guidance for their clinical reasoning as they plan and prioritize interventions for people with AD throughout the progression of the disease. These reviews have already been integrated into AOTA’s Occupational Therapy Practice Guidelines for Adults With Alzheimer’s Disease and Related Disorders (Schaber, 2010). Together, they contribute to the legitimacy of occupational therapy’s unique contribution to maximizing the quality of life of a growing segment of society.
Certainly, work remains to be done. The systematic reviews support the need for further and more rigorous research. Several questions remain unanswered. For example, what impact does the setting in which a person lives or where the person receives services have on the effectiveness of particular strategies? What outcome measurements best reflect the person’s preserved functions to support occupational performance? How do occupational therapy services provided in an interdisciplinary program enhance the person’s function? The reviews also point to the need to ensure that occupational therapy practitioners are well educated in neuroscience and neurorehabilitation and are well versed in the provision of services in family-centered and community-based models of care. The systematic reviews provide evidence that occupational therapy services for people with AD should focus on the context and environment rather than on restorative treatment of the person.
Occupational therapy practitioners’ expertise lies in their knowledge of occupation and of how engaging in occupation can be used to support health and participation in home, school, workplace, and community life (AOTA, 2008). Through that expertise, supported by interventions selected on the basis of evidence that shows their effectiveness, the profession’s particular ethic of care toward people with AD can be realized (Tronto, 1993).