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Social Work Alzheimer's Disease and Other Dementias
by
Stanley G. McCracken
  • LAST REVIEWED: 05 May 2017
  • LAST MODIFIED: 21 November 2012
  • DOI: 10.1093/obo/9780195389678-0115

Introduction

Prior to the last century dementia, referred to as senility, was seen as a normal and inevitable part of aging. About one hundred years ago Dr. Alois Alzheimer described the case of a woman with a complex set of symptoms including impaired memory and speech, disorientation, and hallucinations. After her death, Dr. Alzheimer conducted an autopsy and described the beta-amyloid (Aβ) plaques and neurofibrillary tangles that are the hallmarks of Alzheimer’s disease (AD). The prevalence of AD and other dementia is estimated at 5–7 percent in individuals sixty-five years old and at 25–50 percent in those over eighty-five (Agronin 2008; see Guidebooks). There were approximately 35 million adults over sixty-five in the United States in 2000, and that number is expected to double by 2050. When considered together, these figures explain why dementia is considered a growing national problem. Research on AD and other dementias has grown in the past thirty years and especially in the last decade. Advances in imaging and neuropsychological testing have improved the ability to recognize and distinguish between AD, frontotemporal, Lewy body, vascular, and Parkinson’s disease dementias. Knowledge has expanded particularly rapidly in understanding the changes associated with AD. For example, knowledge from multicenter projects is yielding insights into the pathophysiology of dementia, and information from large-scale genetic studies has revealed a number of potential gene candidates contributing to the risk of AD in older adults. Unfortunately, these basic science insights have yet to be translated into proven treatments to prevent or interrupt the disease process in AD or other dementias. There have been some advances in the treatment of dementia symptoms and associated conditions, such as development of medications designed to slow the progression of memory loss. While these medications provide some symptomatic relief, the effects have not been large, and use is often associated with unpleasant side effects. Many have looked to herbal remedies and dietary supplements to preserve cognitive functioning and slow progression of dementia, though these approaches too have shown minimal effect. Psychosocial approaches, often delivered by family members and other informal caregivers, are still considered the first line interventions to maintain the function of individuals with dementia and associated conditions. Because of the rapid growth of knowledge in AD and other dementias, most of the works cited in this bibliography will be recent systematic reviews and meta-analyses. This will provide a portal to current information and to authors or approaches that can be explored further.

General Overviews

One of the best ways to keep up with the rapid growth of knowledge on dementia is to regularly visit or sign up for updates from web-based dementia and aging resources for practitioners, researchers, clients, and family and other caregivers. These websites range from sites that specifically target dementia, like the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center, the Alzheimer’s Research Forum, Alzheimer’s Disease International, the Alzheimer’s Association, and the Lewy Body Dementia Association to those that focus more broadly on aging in general such as the National Council on Aging. (See the Oxford Bibliographies article on Aging for additional links to general gerontological websites.) These web-based resources, associated with national, international, and governmental organizations, include a variety of educational materials including publications that can be downloaded or ordered as booklets, brochures, and fliers. Some of these educational materials are written for clients, families, and other caregivers, and others are more suitable for practitioners, students, teachers, and researchers. The first five dementia-specific sites post updates and news releases on dementia research including advances in assessment and treatment and changes in diagnostic criteria. They also provide links to other websites and treatment resources, and some provide information for people interested in participating as subjects in dementia research and clinical trials. While several of the sites list Alzheimer’s in their name, they also provide information on other types of dementia as well. Finally, the CSWE Gero-Ed Center and Lippincott Williams & Wilkins’s How to Try This provide gerontology teaching resources useful for training staff in health, mental health, substance abuse, and aging settings, as well as graduate and undergraduate level social work courses. These resources include teaching notes and online skill demonstrations of assessments and interventions.

  • Alzheimer’s Association.

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    Alzheimer’s Association is the largest private, nonprofit, funder of Alzheimer’s research. It promotes care and support for individuals with dementia through local chapters around the nation. This site provides links to a variety of resources including local chapters, online message boards, support groups, clinical trials, and educational activities and materials.

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    • Alzheimer’s Disease Education and Referral Center (ADEAR).

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      Site for Alzheimer’s disease information with resources for teaching, staff training, and the public. Publications, including DVDs and videos, can be downloaded or ordered. One of the best is Alzheimer’s Disease: Unraveling the Mystery (2008), a primer on Alzheimer’s disease. Includes information about participating in clinical trials, other research.

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      • Alzheimer’s Disease International (ADI).

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        ADI is an international federation of Alzheimer associations around the world, in official relations with the World Health Organization. ADI believes integrating global solutions and local knowledge is key to winning the fight against dementia. Site provides links to dementia information and resources, including contact information for Alzheimer’s Associations around the world.

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        • Alzheimer’s Research Forum.

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          Alzheimer’s Research Forum posts current information and news on Alzheimer’s and dementia research including (national and international) conference presentations. People may post comments on articles, receive the weekly Alzheimer’s Research Forum Newsletter, view webinars, and download papers and presentations. Includes special section specific to familial (early onset) Alzheimer’s disease.

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          • CSWE Gero-Ed Center.

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            Resources for infusing gero competencies and content in undergraduate and graduate teaching. Resources developed by participants in the Curriculum Development Institute Program, GeroRich, and SAGE-SW Projects; and other gerontological social work educators. Training modules addressing dementia and associated conditions found in several sections including mental health, health care, and caregiving.

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            • How to Try This. Lippincott’s NursingCenter.com.

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              Teaching resource developed by nurses for nurses and nursing students but has many videos and articles on dementia suitable for training social work students and staff. Demonstrations include both the skill demonstration and a discussion of administration and interpretation of the information gathered from the discussion.

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              • Lewy Body Dementia Association (LBDA).

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                LBDA is a nonprofit organization that promotes awareness of the Lewy body dementias (LBD), supports individuals with LBD and their families and caregivers, and promotes scientific advances in the understanding and treatment of LBD. The site provides resources and links both for families and for professionals who work with LBD.

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                • National Council on Aging.

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                  NCOA is a national, nonprofit service and advocacy organization bringing together nonprofit organizations, businesses, and government to develop solutions to help older adults remain in their homes, active in their communities, find jobs and benefits, and improve health. Links to events, advocacy, research, and programs that promote older adults’ well-being.

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                  Guidebooks

                  The books in this section are best thought of as guidebooks that broadly address dementia and associated conditions and can be used as resources for teaching, practice, and research. Two of the books (Cox 2007 and Moniz-Cook and Manthorpe 2009) are specifically about psychosocial interventions and social work practice. The chapters in Cox 2007 provide an overview of dementia and related conditions, assessment, working with clients in the early stages of dementia and their families, ethnic and other diversity, and settings of care and would serve as an excellent textbook for a course on dementia. While the chapters in Moniz-Cook and Manthorpe 2009 describe approaches used in western Europe, practitioners from other countries will find most of the psychosocial approaches relevant to practice in other countries. Agronin 2008 is written for physicians but is a valuable and user-friendly clinical resource for practitioners and students working in a variety of settings in which individuals with dementia receive services. He provides a concise overview of the dementias and their treatment and includes a number of practice-relevant pocket cards. There are two publications by the National Institute on Aging included in this section: Alzheimer’s Disease: Unraveling the Mystery (National Institute on Aging 2008) and 2009 Progress Report on Alzheimer’s Disease: Translating New Knowledge (National Institute on Aging 2010). The first of these provides a very readable overview of Alzheimer’s disease and its treatment, and the second provides a detailed discussion of research progress on understanding mechanisms, diagnosis, and clinical trials. The editors of Nature published an online supplement (Brody 2011) with brief articles reviewing recent research on biomarkers, prevention, medication, and genetics. One or more of these free publications would provide a nice addition to another text, such as Cox 2007. Berkman 2006 places dementia care in the context of social work in health and aging in general. While the chapters do not provide the level of detail seen in the other books in this section, they fit dementia into a healthcare system that addresses a range of medical and aging issues.

                  • Agronin, Marc E. 2008. Alzheimer disease and other dementias. 2d ed. Philadelphia: Lippincott Williams & Wilkins.

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                    Chapters on each type of dementia include symptoms, clinical presentation, and treatment. Detailed discussions of dementia evaluation interview, client environment assessment, and medical workup, including review of different types of imaging; approaches to treatment; caregiver support; and legal and ethical issues.

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                    • Berkman, Barbara. 2006. Handbook of social work in health and aging. New York: Oxford Univ. Press.

                      DOI: 10.1093/acprof:oso/9780195173727.001.0001Save Citation »Export Citation »E-mail Citation »

                      Comprehensive collection of chapters on social work practice and policy in health care and aging by leaders in the field. Assessment and intervention with older adults with dementia and caregivers placed in context of heath care and medical social work. Includes chapters on LGBT, ethnically diverse, and immigrant/refugee older adults.

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                      • Brody, Herb, ed. 2011. Special issue: Alzheimer’s disease. Nature 475.7355 supp. (14 July).

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                        Includes several recent Nature articles on neurochemical and neuroanatomical changes, ethics of Alzheimer’s research, and disease altering treatments plus several articles written specifically for the supplement. Articles available online for purchase or by subscription.

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                        • Cox, Carole B., ed. 2007. Dementia and social work practice: Research and interventions. New York: Springer.

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                          Chapters by dementia practice leaders cover assessment, intervention, program development, and service systems for elders with dementia, their families/caregivers. Includes chapters addressing needs of ethnically and nationally diverse populations and both community and residential care. Excellent text for course on dementia and resource for practice, service development, and staff training.

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                          • Moniz-Cook, Esme, and Jill Manthorpe, eds. 2009. Early psychosocial interventions in dementia: Evidence-based practice. Philadelphia: Jessica Kingsley.

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                            Chapters examine variety of interventions and services for providing support to clients and families/caregivers during assessment, diagnosis, and early stages of dementia. Addresses experiences in the United Kingdom and Europe. Discussion of implementation has implications for developing and introducing innovations in systems of care.

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                            • National Institute on Aging. 2008. Alzheimer’s Disease: Unraveling the Mystery. NIH Pub. 08-3782. Bethesda, MD: National Institutes of Health.

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                              Primer on Alzheimer’s disease, with particular focus on β-amyloid, tau pathology, and neuropathology, describes the main areas of research, and highlights approaches for helping clients and families/caregivers. Clear, detailed explanation of Alzheimer’s disease would be a good (free) addition to a more clinically focused book for class or practice.

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                              • National Institute on Aging. 2010. 2009 Progress Report on Alzheimer’s Disease: Translating New Knowledge NIH Pub. 10-7500. Bethesda, MD: National Institutes of Health.

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                                In 1996 the NIA began publishing annual updates on Alzheimer’s research, all of which are archived online. Recent issues have documented significant advances in knowledge about mechanisms, biomarkers, imaging, and treatment.

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                                The Experience of Dementia

                                The entries in this section include the widely acclaimed HBO documentary film series The Alzheimer’s Project, as well as articles about the reaction to dementia. Carpenter, et al. 2008 and Steeman, et al. 2006 examine reactions to the diagnosis and early stages of dementia. Carpenter, et al. 2008 reports that diagnosis of dementia does not provoke a catastrophic reaction in most people and may even provide a sense of relief. This paper highlights the fact that clients and families have a range of reactions to the diagnosis and addresses the fear that informing individuals and their families of a diagnosis of dementia will uniformly provoke a catastrophic reaction. The article by Steeman and colleagues is a meta-synthesis and provides a sensitive overview of qualitative studies of the experience of clients prior to, during, and shortly after diagnosis of dementia. Caddell and Clare 2010 reviews the literature on the impact of dementia on self and identity. Their paper addresses the debate on the extent to which the self persists or diminishes in people with dementia—does the self remain intact, gradually disintegrate, or maintain in a compromised state. The Alzheimer’s Project (Hoffman, et al. 2009) engages both the intellect and the emotions in its four feature-length documentaries, fifteen supplementary films, book, and other material on the website. The documentaries are an excellent teaching resource with their balance of poignancy and hope in the films showing individuals in various stages of AD, conversations with children and grandchildren, experiences of caregivers, and advancements in science. Taken together, these resources help students and practitioners gain both an intellectual and an empathetic understanding of what it means to experience dementia in oneself or a loved one.

                                • Caddell, Lisa S., and Linda Clare. 2010. The impact of dementia on self and identity: A systematic review. Clinical Psychology Review 30:113–126.

                                  DOI: 10.1016/j.cpr.2009.10.003Save Citation »Export Citation »E-mail Citation »

                                  Examines methods used to evaluate self and identity in people with dementia and the evidence on the persistence of the self and identity throughout the illness. Illustrates the complexity of the question of maintenance of identity in AD.

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                                  • Carpenter, Brian D., Chengjie Xiong, Emily K. Porensky, et al. 2008. Reaction to dementia diagnosis in individuals with Alzheimer’s disease and mild cognitive impairment. Journal of the American Geriatrics Society 56:405–412.

                                    DOI: 10.1111/j.1532-5415.2007.01600.xSave Citation »Export Citation »E-mail Citation »

                                    Study of individuals coming to a memory clinic for evaluation found that many people are relieved by having an explanation for their experiences. Setting in a specialty clinic limits the generalizability of this study, but the findings may relieve some concerns about the effect of the diagnosis on client and caregiver.

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                                    • Hoffman, John, and Susan Froemke, with Susan K. Galant. 2009. The Alzheimer’s Project. HBO Documentary Films and National Institute on Aging.

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                                      Outstanding set of resources including four full-length documentaries, fifteen supplementary films, book (The Alzheimer’s Project: Momentum in Science, Philadelphia: Perseus, 2009), online information, and extensive online links to other resources. Documentaries are thoughtful and sensitively portrayed. Good teaching resource.

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                                      • Steeman, Els, Bernadette Dierckx de Casterlé, Jan Godderis, and Mieke Grypdonck. 2006. Living with early-stage dementia: A review of qualitative studies. Journal of Advanced Nursing 54:722–738.

                                        DOI: 10.1111/j.1365-2648.2006.03874.xSave Citation »Export Citation »E-mail Citation »

                                        Review of thirty-three qualitative papers on the experience of people in the prediagnostic, diagnostic, and postdiagnostic phases of dementia and other significant cognitive impairment. Examines themes that recur in each of these phases. Useful review of the lived experience of dementia.

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                                        Continuum of Cognitive Functioning in Older Adults

                                        The continuum of cognitive functioning in older adults may be separated at different points with varying degrees of significance in predicting development of AD and other dementias. The papers in this section begin consideration of that continuum with discussions of the significance of subjective memory complaints (SMCs) in older adults (Reid and MacLullich 2006) and cognitive impairment in preclinical AD (Backmän, et al. 2005). Reid and MacLullich 2006 notes that SMCs are inconsistently related to current cognitive functioning but more strongly related to risk of future decline, though the usefulness of SMCs in diagnosing predementia states is uncertain. Backmän, et al. 2005 concluded that deficits in multiple domains are characteristic of AD long before diagnosis. The construct of mild cognitive impairment (MCI) is addressed in Gainotti 2010 on MCI controversies. Some of the questions he addresses include criteria used to diagnose MCI, whether MCI is a precursor of AD and other dementias, and the rate of return to normal functioning.

                                        • Backmän, Lars, Sari Jones, Anna-Karin Berger, Erika Jonsson Laukka, and Brent J. Small. 2005. Cognitive impairment in preclinical Alzheimer’s disease: A meta-analysis. Neuropsychology 19:520–531.

                                          DOI: 10.1037/0894-4105.19.4.520Save Citation »Export Citation »E-mail Citation »

                                          Meta-analysis of forty-seven studies examining deficits in a variety of domains of cognitive functioning. Authors note deficits in multiple cognitive domains characterize individuals several years before diagnosis of AD. Suggests involvement of a number of brain structures in pathology of AD. Clearly describes the range of cognitive impairments in AD.

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                                          • Gainotti, G. 2010. Origins, controversies, and recent developments of the MCI construct. Current Alzheimer Research 7:271–279.

                                            DOI: 10.2174/156720510791050858Save Citation »Export Citation »E-mail Citation »

                                            Gainotti reviews controversies about the MCI construct focusing on the problem of conversion from MCI to AD and on the number of individuals who return to normal cognitive functioning. Ends with discussion of whether there are one or multiple MCI constructs. Good overview of controversies about MCI for students and practitioners.

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                                            • Jack, Clifford R., Jr., David S. Knopman, William J. Jagust, et al. 2010. Hypothetical model of dynamic biomarkers of the Alzheimer’s pathological cascade. Lancet Neurology 9:119–128.

                                              DOI: 10.1016/S1474-44220970299-6Save Citation »Export Citation »E-mail Citation »

                                              Lays out a hypothetical model of the sequence of biochemical, structural, and clinical events leading to AD. Model has implications for understanding underlying mechanisms of AD as well as the timing of interventions to prevent, slow progression, and treat AD. Fundamental reading for understanding AD pathology and clinical course.

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                                              • Reid, Louise M., and Alasdair M. J. MacLullich. 2006. Subjective memory complaints and cognitive impairment in older people. Dementia and Geriatric Cognitive Disorders 22:471–485.

                                                DOI: 10.1159/000096295Save Citation »Export Citation »E-mail Citation »

                                                Review of research on relationship between subjective memory complaints (SMCs) and current cognitive function, risk of cognitive decline, and depression and personality. This is a particularly useful paper for direct practice students and staff working with aging adults worried that their SMCs presage the onset of dementia.

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                                                National Institute on Aging and Alzheimer’s Association Workgroup

                                                The National Institute on Aging and Alzheimer’s Association workgroup developed recommendations for revising the 1984 AD diagnostic criteria, for MCI criteria, and for defining preclinical stages of AD. These four papers presenting the recommendations were published in a single 2011 issue of Alzheimer’s and Dementia (vol. 7, issue 3) and are grouped together below (Jack, et al. 2011; McKhann, et al. 2011; Albert, et al. 2011; and Sperling, et al. 2011). These criteria are likely to be widely used, clearly influencing proposed DSM5 criteria for neurocognitive disorders online and have significant implications both for clinical and research diagnosis. The significance of the continuum of cognitive functioning and why it is important to be able to identify people at preclinical stages of AD is addressed in a proposed model of dynamic biomarkers for AD (Jack, et al. 2011). The authors illustrate this hypothetical model with a figure with sigmoid curves relating changes in β-amyloid (Aβ), tau-mediated neuronal changes, brain structure, memory, and clinical function to different points on the cognitive function continuum from cognitively normal to MCI to dementia. This figure is being widely cited to illustrate the putative changes in AD and to explain the reason for failure of some treatment approaches targeting Aβ, formation of tau proteins, and other pharmacological approaches to treat or slow development of AD in older adults with early clinical signs of dementia.

                                                • Albert, Marilyn S., Steven T. DeKosky, Dennis Dickson, et al. 2011. The diagnosis of mild cognitive impairment due to Alzheimer’s disease: Recommendations from the National Institute on Aging and the Alzheimer’s Association workgroup. Alzheimer’s Disease and Dementia 7:270–279.

                                                  DOI: 10.1016/j.jalz.2011.03.008Save Citation »Export Citation »E-mail Citation »

                                                  The workgroup developed two sets of criteria for MCI, one set of core clinical criteria that could be used by practitioners without access to advanced imaging and cerebrospinal fluid (CSF) measures and another set of research criteria. The MCI research criteria have four levels of certainty depending on biochemical marker data.

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                                                  • Jack, Clifford R., Jr., Marilyn S. Albert, David S Knopman, et al. 2011. Introduction to the recommendations from the National Institute on Aging and the Alzheimer’s Association workgroup on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s Disease and Dementia 7:257–262.

                                                    DOI: 10.1016/j.jalz.2011.03.004Save Citation »Export Citation »E-mail Citation »

                                                    Brief overview of historical background and reasoning for the development of the revised guidelines for AD, of criteria for MCI, and of a definition of the preclinical stages of AD. Discusses the clinical implications of these criteria.

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                                                    • McKhann, Guy M., David S. Knopman, Howard Chertkow, et al. 2011. The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging and the Alzheimer’s Association workgroup. Alzheimer’s Disease and Dementia 7:263–269.

                                                      DOI: 10.1016/j.jalz.2011.03.005Save Citation »Export Citation »E-mail Citation »

                                                      Presents recommendations for diagnostic criteria for all cause and probable AD dementia. Goal of the workgroup was to develop criteria flexible enough for use by both dementia researchers and practitioners without access to neuropsychological testing, advanced imaging, and CSF measures.

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                                                      • Sperling, Reisa A., Paul S. Aisen, Laurel A. Beckett, et al. 2011. Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging and the Alzheimer’s Association workgroup. Alzheimer’s Disease and Dementia 7:280–292.

                                                        DOI: 10.1016/j.jalz.2011.03.003Save Citation »Export Citation »E-mail Citation »

                                                        The goal of the authors was to review evidence and develop recommendations to determine factors during the preclinical phase that predict the risk of progression from normal cognition to MCI to dementia. Authors emphasize that these recommendations are intended for research and do not currently have clinical implications.

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                                                        Dementia Epidemiology, Genetics, Risk and Protective Factors

                                                        The works in this section include papers that examine the epidemiology of AD and other dementias in selected national studies as well as estimates of the epidemiology and economic impact of dementia worldwide. This section also includes reviews of the data on genetics of AD and on nongenetic risk and protective factors.

                                                        Epidemiology

                                                        Among the most frequently cited sources for the epidemiology and impact of dementia are the Alzheimer Disease International World Alzheimer’s Report 2009, which documents the rapid growth of Alzheimer’s and other dementias worldwide, and World Alzheimer Report 2010, which provides data on the cost of care and the overall economic impact for countries around the world. Prevalence estimates are reported for dementia (type unspecified) by region but not individual country; cost data are provided for a number of both high-income and low/middle-income countries worldwide. Plassman, et al. 2007 reports data on AD, vascular dementia, and other dementia prevalence and selected risk factors from a nationally representative US sample of adults seventy-one and older from the Aging, Demographics, and Memory study. Aarsland and Kurz 2010 reviews the epidemiology and risk factors for dementia associated with Parkinson’s disease. Finally, Luck, et al. 2010 provides a systematic review on the incidence of mild cognitive impairment, a potential precursor to dementia. Taken together these papers provide a current overview of the epidemiology and impact of dementia and mild cognitive impairment for students, scholars, practitioners, and policy makers looking for a more detailed discussion of epidemiology than typically provided in overviews found in other papers dealing with dementia more generally.

                                                        • Aarsland, Dag, and Martin W. Kurz. 2010. The epidemiology of dementia associated with Parkinson’s disease. Journal of the Neurological Sciences 289:18–22.

                                                          DOI: 10.1016/j.jns.2009.08.034Save Citation »Export Citation »E-mail Citation »

                                                          Review of recent literature on point and cumulative prevalence, incidence, risk factors, and genetics for dementia in Parkinson’s disease. Brief discussion of distinction between dementia with Lewy bodies and dementia in Parkinson’s disease.

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                                                          • Luck, Tobias, Melanie Luppa, Susanne Briel, and Steffi G. Riedel-Heller. 2010. Incidence of mild cognitive impairment: A systematic review. Dementia and Geriatric Cognitive Disorders 29:164–175.

                                                            DOI: 10.1159/000272424Save Citation »Export Citation »E-mail Citation »

                                                            Systematic review of nine studies providing estimates of incidence of amnestic and nonamnestic mild cognitive impairment (MCI). Discussion of problems related to differing definitions and criteria for MCI. Limited discussion of risk factors. Useful contrast and comparison with other epidemiological papers on dementia.

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                                                            • Plassman, Brenda, K. M Langa, G. G. Fisher, et al. 2007. Prevalence of dementia in the United States: The aging, demographics, and memory study. Neuroepidemiology 29:125–132.

                                                              DOI: 10.1159/000109990Save Citation »Export Citation »E-mail Citation »

                                                              Relative prevalence of AD, vascular dementia, and other dementias from nationally representative US sample of adults seventy-one or older. Includes social and medical history data, cognitive and functional impairment measures, neuropsychological exam, and biomarkers. Reports risk factors for dementia. Good bridge between general epidemiological studies and research on biomarker and risk factors.

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                                                              • Prince, Martin, and Jim Jackson, eds. 2009. World Alzheimer’s Report 2009. London: Alzheimer’s Disease International.

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                                                                Current estimates and projections to 2050 for prevalence of dementia among adults over sixty regionally throughout the world. Estimates rapid rise of dementia worldwide, particularly in low- and middle-income regions and discusses the impact of this rise on personal, social, and healthcare systems.

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                                                                • Wimo, Anders, and Martin Prince, eds. 2010. World Alzheimer Report 2010: The Global Economic Impact of Dementia. London: Alzheimer’s Disease International.

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                                                                  Analysis of economic impact of dementia and companion to Prince and Jackson 2009. Costs attributed to combination of informal care; direct costs of social care by community professionals and residential settings, and direct costs of medical care. Recommended for health economists, health and aging policy analysts, and service planners.

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                                                                  Genetics and Nongenetic Risk and Protective Factors

                                                                  Not everyone develops dementia during their lifetime. The papers in this section address the genetic and nongenetic risk and protective factors for dementia in older adults. While there is a strong support for involvement of three genes (APP, PSEN1, PSEN2) in the rarer, early onset, familial AD, there has been consistent support for only one gene (APOE) in late onset AD. Bertram and Tanzi 2008 reviews thirty years of genetic research on ten different genes and examine the implications of these genes for the mechanisms of AD. Hollingworth, et al. 2011 reviews research from three large-scale genome-wide studies which identify four additional susceptibility genes for late onset AD. Christensen, et al. 2008 demonstrate that it is possible to develop risk assessment protocols that are sensitive to the implications of incorporating ethnicity into genetic testing. AlzGene provides a comprehensive and current field synopsis of research for researchers and practitioners interested in the genetics of AD. This site is a good place to begin the search for information on involvement of specific genes in AD. Patterson, et al. 2007 and Qiu, et al. 2010 both examine a broad set of nongenetic risk and protective factors associated with Alzheimer’s and other dementias. The former, frequently cited paper limited their systematic review to longitudinal studies, excluding case-control research. Qiu, et al. 2010 used evidence from previous meta-analyses, systematic reviews, and large-scale studies, such as the Rotterdam Study and the Kungsholmen Project, to formulate recommendations about long-term, multidomain interventions designed to postpone the onset of dementia. The remaining systematic reviews and meta-analyses in this section focus on single categories of risk or protective factors that are often mentioned in the literature. Aarsland, et al. 2010 considers whether physical activity reduces risk of vascular dementia, which often occurs independently and which is often mentioned along with cardiovascular disease as a risk factor for Alzheimer’s disease. Education and mental activity are often suggested as protective factors for dementia. Stern and Munn 2010 reviews research examining whether cognitive leisure activities have a role in preventing dementia. It is from research like this that psychosocial and lifestyle interventions may be developed and which may some day reduce the prevalence of dementia even as the population ages.

                                                                  • Aarsland, Dag, Farzaneh S. Sardahaee, Sigmund Anderssen, Clive Ballard, and the Alzheimer’s Society Systematic Review Group. 2010. Is physical activity a potential preventative factor for vascular dementia? A systematic review. Aging & Mental Health 14:386–395.

                                                                    DOI: 10.1080/13607860903586136Save Citation »Export Citation »E-mail Citation »

                                                                    Review of twenty-four longitudinal studies reports evidence that physical activity may prevent development of vascular dementia and should be included in secondary programs for people at risk for cerebrovascular disease. Authors note physical activity is not only a personal choice, but is affected by variety of environmental and social factors.

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                                                                    • AlzGene.

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                                                                      AlzGene provides a comprehensive and regularly updated field synopsis of research and meta-analyses on genetic association studies of Alzheimer’s disease. The site can be searched in a number of ways including by gene, chromosome, or keyword. Excellent resource for researchers and students interested in Alzheimer’s genetics.

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                                                                      • Bertram, Lars, and Rudolph E. Tanzi. 2008. Thirty years of Alzheimer’s disease genetics: The implications of systematic meta-analyses. Nature Reviews/Neuroscience 9:768–778.

                                                                        DOI: 10.1038/nrn2494Save Citation »Export Citation »E-mail Citation »

                                                                        Reviews the research for ten different susceptibility genes and the implications of these genes for the putative mechanisms of Alzheimer’s disease. This paper is a good step up from basic discussions of AD genetics provided in sources like Alzheimer’s Disease: Unraveling the Mystery.

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                                                                        • Christensen, Kurt D., J. Scott Roberts, Charmaine D. M. Royal, et al. 2008. Incorporating ethnicity into genetic risk assessment for Alzheimer disease: The REVEAL study. Genetics in Medicine 10:207–214.

                                                                          DOI: 10.1097/GIM.0b013e318164e4cfSave Citation »Export Citation »E-mail Citation »

                                                                          Reports how investigators in large, multisite, randomized clinical trials balance scientific and ethical issues to create risk models based on genetic testing of African American participants. Excellent example of process for developing risk assessment protocols sensitive to the implications of genetic testing and feedback. Suggested for research methods courses.

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                                                                          • Hollingworth, Paul, Denise Harold, Lesley Jones, Michael J. Owen, and Julie Williams. 2011. Alzheimer’s disease genetics: Current knowledge and future challenges. International Journal of Geriatric Psychiatry 26:793–802.

                                                                            DOI: 10.1002/gps.2628Save Citation »Export Citation »E-mail Citation »

                                                                            Data from three large-scale genome wide association (GWA) studies provide evidence for four new susceptibility genes associated with increased risk of AD. Discusses clinical and research implications of knowledge of disease mechanisms generated from large sample GWA studies. Good example of translating basic science research into clinical interventions.

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                                                                            • Patterson, Christopher, John Feightner, Angeles Garcia, and Chris MacKnight. 2007. General risk factors for dementia: A systematic evidence review. Alzheimer’s & Dementia 3:341–347.

                                                                              DOI: 10.1016/j.jalz.2007.07.01Save Citation »Export Citation »E-mail Citation »

                                                                              Systematic review of sixty longitudinal studies and eight systematic reviews of potentially modifiable risk factors for dementia. Identified medical, lifestyle, drug exposure, and education and occupation factors related to dementia. Excellent place to start investigation of risk and protective factors.

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                                                                              • Qiu, Chengxuan, Weili Xu, and Laura Fratiglioni. 2010. Vascular and psychosocial factors in Alzheimer’s disease: Epidemiological evidence toward intervention. Journal of Alzheimer’s Disease 20:689–697.

                                                                                DOI: 10.3233/JAD-2010-091663Save Citation »Export Citation »E-mail Citation »

                                                                                This narrative review summarized findings from major population-based studies with the goal of identifying modifiable factors that can be targeted in interventions postponing Alzheimer’s disease and dementia. The focus is on vascular and social factors many of which are accessible to modification by social workers in various practice settings.

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                                                                                • Stern, Cindy, and Zachary Munn. 2010. Cognitive leisure activities and their role in preventing dementia: A systematic review. International Journal of Evidence Based Healthcare 8:2–17.

                                                                                  DOI: 10.1111/j.1744-1609.2010.00150.xSave Citation »Export Citation »E-mail Citation »

                                                                                  Systematic review of thirteen observational studies of leisure activities that require mental activity showed a positive association between participating in cognitive leisure activities in midlife or late-life and reduced risk of Alzheimer’s disease and other dementias. Significant in that leisure activity is more accessible to modification than education or occupation.

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                                                                                  Screening, Assessment, and Diagnosis of Dementia in Clinical Practice

                                                                                  Screening, assessment, and diagnosis of the dementias are quite different in dementia research versus clinical practice. Much of this difference reflects access to sophisticated imaging technologies, biomarker data, and neuropsychological testing. At the most basic level are social workers and other professionals in general practice who screen to identify individuals who should receive a more thorough evaluation. The second level includes clinical professionals who have access to neuropsychological testing and basic neuroimaging technology, such as CAT scans and MRI. The third level includes dementia researchers with access to more sophisticated neuroimaging and biochemical marker tests. This section focuses on clinical assessment, particularly screening and cognitive assessment. Researchers and practitioners who work with individuals with dementia and their families/caregivers will benefit from a basic understanding of cognitive functioning. Hodges 2007 provides a good overview of the domains of cognitive functioning and how they are assessed. It is a good book to have for reference. Agronin 2008 includes a brief overview of the domains of cognitive functioning in his chapters describing the elements of a dementia workup that might be performed or ordered by a physician. Huntley and Howard 2009 describes the construct and different aspects of working memory and how it is impaired at different points in the progression of dementia. These papers would be good choices for practitioners and students who want to understand cognitive functioning and how different domains are impaired in individuals with dementia. Ismail, et al. 2009 reviews brief cognitive and dementia screening instruments that could be used by social workers and other professionals in a variety of practice settings. Wild, et al. 2008 reviews the status of computerized testing, a particularly important area given the advent and growth of testing applications for handheld computing devices. Taken together, these papers provide a solid overview of the range of levels of cognitive assessment of dementia in primary and secondary care and tests used to differentiate between different kinds of dementia. Some of the methods (e.g., the screening tools) can be taught by social work faculty to students and practitioners. Some of the others, even some basic neuropsychological tests, can be learned by social workers if taught by people with special training in administering the tests. Other methods must be administered and interpreted by clinical psychologists or neuropsychologists, but the papers in this section will help practitioners and researchers understand the benefits and limitations of these more advanced tests.

                                                                                  • Agronin, Marc E. 2008. Alzheimer disease and other dementias. 2d ed. Philadelphia: Lippincott Williams & Wilkins.

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                                                                                    Three chapters review the phenomenology of dementia; dementia evaluation interview; client environment assessment; medical workup, including review of different types of imaging; and mental status examination addressing the different cognitive domains. Explains significance of differentiating between different types of dementia and implications for decisions about management and planning.

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                                                                                    • Hodges, John R. 2007. Cognitive assessment for clinicians. 2d ed. New York: Oxford Univ. Press.

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                                                                                      First three chapters describe distributed and localized cognitive functions and delirium and dementia. Overview of domains of cognitive functioning and how they are evaluated. Useful resource to help social worker practitioners, scholars, and students understand and make good referrals for cognitive (neuropsychological) assessment.

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                                                                                      • Huntley, J. D., and R. J. Howard. 2009. Working memory in early Alzheimer’s disease: A neuropsychological review. International Journal of Geriatric Psychiatry 25:121–132.

                                                                                        DOI: 10.1002/gps.2314Save Citation »Export Citation »E-mail Citation »

                                                                                        Defines working memory; provides a model of how central executive system processes verbal and visuospatial functions; and describes how these processes are impaired in individuals with AD. Relates impairment of working memory to changes in brain structure and function and explains a number of clinical phenomena in AD.

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                                                                                        • Ismail, Zahinoor, Tarek K. Rajji, and Kenneth I. Shulman. 2009. Brief cognitive screening instruments: An update. International Journal of Geriatric Psychiatry 25:111–120.

                                                                                          DOI: 10.1002/gps.2306Save Citation »Export Citation »E-mail Citation »

                                                                                          Describes current primary care screening practices and reviews strengths and limitations of ten cognitive screening instruments, most of which are available on the Internet. Given proposed changes for DSM-5 and increased emphasis on assessment, this is highly recommended for social work practitioners and direct practice faculty and students.

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                                                                                          • Wild, Katherine, Diane Howieson, Frank Webbe, Adriana Seelye, and Jeffrey Kaye. 2008. Status of computerized cognitive testing in aging: A systematic review. Alzheimer’s & Dementia 4:428–437.

                                                                                            DOI: 10.1016/j.jalz.2008.07.003Save Citation »Export Citation »E-mail Citation »

                                                                                            Review of eleven computer-based cognitive tests appropriate for older adults—emphasis on detecting cognitive decline. Includes domains tested, evaluation of quality of psychometric data, and description of administration. Recommended introduction and overview for students and practitioners given rapid growth of use of hand-held computing devices in medical practice.

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                                                                                            Treatment of Dementia

                                                                                            The works in this section address interventions that target the primary symptoms of dementia, such as impaired memory and other domains of cognitive functioning, quality of life, independence, and functioning. Behavioral and psychological symptoms of dementia (BPSD) and interventions and support for caregivers are covered in different sections. Psychosocial and biological (i.e., medications, herbs, and dietary supplements) interventions are covered separately.

                                                                                            Psychosocial Approaches

                                                                                            Psychosocial interventions can improve quality of life for individuals with dementia and their carers. They may even be able to delay institutionalization and help the individual maintain independence. The papers in this section examine the evidence for interventions that address impairment directly related to dementia, such as memory and other cognitive functioning, activity, and surveillance for individuals with dementia. Interventions addressing behavioral and psychological symptoms of dementia will be addressed in a different section. The chapters in sections 2 through 7 of Cox 2007 describe a continuum of psychosocial approaches beginning with initial diagnosis and early stages of dementia to community care to residential care, including five chapters on addressing the needs of different ethnic groups. The chapters in Moniz-Cook and Manthorpe 2009 are specific to early psychosocial interventions but address a broad range of approaches from those focusing specifically on cognition, art therapy, and support groups to interventions addressing the needs of family and other carers. Olazaran, et al. 2010 used the Oxford Center for Evidence-Based Medicine criteria in a systematic review of the effectiveness of a broad range of nonpharmacological interventions for people with dementia. The remaining papers address specific interventions, specific populations, or specific settings. This section does not address preventive approaches for asymptomatic individuals; these approaches are included in the section on Genetics and Nongenetic Risk and Protective Factors. This section does, however, include the Jean, et al. 2010 systematic review of cognitive intervention programs for individuals with mild cognitive impairment, better thought of as early intervention rather than prevention. Social workers are often required to recommend or oversee interventions delivered in the home or in institutions by family members and other carers with little or no specialized training. Hulme, et al. 2010 focuses its systematic review on nonpharmacological approaches that can be used by informal carers in the home setting. While not strictly a psychosocial intervention, the Niemeijer, et al. 2010 review of the literature on ethical and practical concerns of surveillance technologies in residential care settings for people with dementia is included in this section. The resources in this section can be used by practitioners, faculty, and students to locate specific interventions that have evidence supporting their effectiveness and that they might want to implement with their client.

                                                                                            • Cox, Carole B., ed. 2007. Dementia and social work practice: Research and interventions. New York: Springer.

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                                                                                              Chapters by dementia practice leaders cover a variety of psychosocial approaches beginning with interventions during diagnosis and early stages of dementia to community care to residential care. Covers institutional as well as direct practice interventions for individuals with dementia and their carers. Excellent text and resource for students and practitioners.

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                                                                                              • Hulme, Clare, Judy Wright, Tom Crocker, Yemi Oluboyede, and Allan House. 2010. Non-pharmacological approaches for dementia that informal carers might try or access: A systematic review. International Journal of Geriatric Psychiatry 25:756–763.

                                                                                                DOI: 10.1002/gps.2429Save Citation »Export Citation »E-mail Citation »

                                                                                                Separated nonpharmacological approaches into those that work, might work, and do not work. Found three interventions for use with particular symptoms of dementia: music or music therapy, hand massage/gentle touch, physical activity/exercise. Identifies home-based interventions that carers might use with little or no cost and those that require training.

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                                                                                                • Jean, Léonie, Marie-Ève Bergeron, Stéphanie Thivierge, and Martine Simard. 2010. Cognitive intervention programs for individuals with mild cognitive impairment: Systematic review of the literature. American Journal of Geriatric Psychiatry 18:281–296.

                                                                                                  DOI: 10.1097/JGP.0b013e3181c37ce9Save Citation »Export Citation »E-mail Citation »

                                                                                                  Review of fifteen studies of cognitive interventions, seven individual and eight group (including cognitive rehabilitation, cognitive and memory training, and stimulation) identified improvements in both objective measures of memory and subjective measures of memory, quality of life, and mood.

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                                                                                                  • Moniz-Cook, Esme, and Jill Manthorpe, eds. 2009. Early psychosocial interventions in dementia: Evidence-based practice. Philadelphia: Jessica Kingsley.

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                                                                                                    Chapters specific to support for clients and families/caregivers during diagnosis and early stages of dementia. Chapters typically include overview and rationale for intervention, implementation or case examples, and outcome data. Written by authors from Europe, others will find this a useful resource.

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                                                                                                    • Niemeijer, Alistair R., Brenda J. M. Frederiks, Ingrid I. Riphagen, Johan Legemaate, Jan A. Eefsting, and Cees M. P. M. Hertogh. 2010. Ethical and practical concerns of surveillance technologies in residential care for people with dementia or intellectual disabilities: An overview of the literature. International Psychogeriatrics 22:1129–1142.

                                                                                                      DOI: 10.1017/S1041610210000037Save Citation »Export Citation »E-mail Citation »

                                                                                                      Review of seventy-nine papers find that ethical debate centers around moral acceptability of surveillance technologies more so than effects of technology. Excellent resource for discussion of safety versus autonomy, institutional versus individual needs, staff versus client concerns.

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                                                                                                      • Olazarán, Javier, Barry Reisberg, Linda Clare, et al. 2010. Nonpharmacological therapies in Alzheimer’s disease: A systematic review of efficacy. Dementia and Geriatric Cognitive Disorders 30:161–178.

                                                                                                        DOI: 10.1159/000316119Save Citation »Export Citation »E-mail Citation »

                                                                                                        Review of 179 RCTs in twenty-six categories. Evidence was graded and practice recommendations were rated using Oxford Center for Evidence-Based Medicine criteria. Highest grade for multicomponent interventions for caregiver followed by cognitive training, cognitive stimulation, and multicomponent interventions for person with dementia. One of the most comprehensive reviews of nonpharmacological interventions.

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                                                                                                        Biological Treatments for Dementia

                                                                                                        The papers in this section consider the effectiveness of medications, herbal remedies, such as ginseng and ginko biloba, and dietary supplements to address the primary symptoms of AD, such as cognitive decline, quality of life, and independence. Treatments of behavioral and psychological symptoms of dementia will be addressed in a separate section. While social workers do not prescribe medications and should not make recommendations about whether or not to use herbal preparations or nutritional supplements, they are often in a position to refer for medication evaluation, to collaborate with physicians to monitor treatment adherence and response, or to work with individuals who are considering complementary/alternative medicine approaches. A good place to begin gaining familiarity with the different biological approaches is with a recent review such as Wollen 2010, which discusses pharmaceutical, nutritional, botanical, and stimulatory therapies, or Delrieu, et al. 2011, which reviews the role of memory enhancers through the continuum of AD beginning with mild cognitive impairment. Wollen 2010 begins with a brief review of the pathology of AD and relates the logic of different treatment approaches to the onset and development of the pathological process. One of the strengths of this article is that the reader can get a good sense of the full range of biological approaches used to treat AD; a limitation is that there is only a brief discussion of strengths and limitations of each approach. Chopra, et al. 2011 gives a perspective on a range of pharmacological approaches targeting disease modification therapies, such as medications targeting inflammation and oxidative stress, as well as symptomatic treatments (memory enhancers). Current pharmacological approaches to symptom management, provided by cholinesterase inhibitors and memantine, have a rather modest impact on illness outcomes, and there is minimal evidence for the effectiveness of disease modification therapies. At the same time, interest in herbal medicines and nutritional supplements has remained strong, though evidence is weak with research plagued by methodological flaws and small samples. Man, et al. 2008 reviews the evidence on the efficacy and safety of herbal medicines for AD, and Jia, et al. 2008 examines the question of whether nutritional supplements, such as vitamins, minerals, and fatty acid supplements prevent cognitive decline. Finally eMedicineHealth is a website for family members seeking a user-friendly overview of the biology and medication treatment of dementia and AD.

                                                                                                        • Chopra, Kanwaljit, Shubham Misra, and Anurag Kuhad. 2011. Current perspectives on pharmacotherapy of Alzheimer’s disease. Expert Opinion in Pharmacotherapy 12:335–350.

                                                                                                          DOI: 10.1517/14656566.2011.520702Save Citation »Export Citation »E-mail Citation »

                                                                                                          Begins with overview of current theories of AD pathology and reviews a variety of pharmacological approaches targeting both disease modification and symptomatic relief. Includes discussion of medications currently in clinical trials. Good overview of current thinking on pharmacotherapy of dementia.

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                                                                                                          • Delrieu, Julien, Antoine Piau, Céline Caillaud, Thierry Voisin, and Bruno Vellas. 2011. Managing cognitive dysfunction through the continuum of Alzheimer’s disease: Role of pharmacotherapy. CNS Drugs 25:213–226.

                                                                                                            DOI: 10.2165/11539810-000000000-00000Save Citation »Export Citation »E-mail Citation »

                                                                                                            Describes the sequence of pathological and clinical events during the course of AD. Reviews evidence for effectiveness of cholinesterase inhibitors and memantine alone and in combination for different stages of disease AD, and critically examines treatment guidelines from American and European professional organizations.

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                                                                                                            • eMedicineHealth

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                                                                                                              User-friendly discussion of the biology, causes, and medication treatment of AD for family members. Features: option to increase size of text, slide shows on dementia and AD. Includes information about cholinesterase inhibitors and NMDA inhibitors.

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                                                                                                              • Jia, X., G. McNeill, and A. Avenell. 2008. Does taking vitamin, mineral and fatty acid supplements prevent cognitive decline? A systematic review of randomized trials. Journal of Human Nutrition and Dietetics 21:317–336.

                                                                                                                DOI: 10.1111/j.1365-277X.2008.00887.xSave Citation »Export Citation »E-mail Citation »

                                                                                                                Reviews twenty-two trials. Found little beneficial effect of either B vitamins or antioxidant supplements on cognitive functioning in later life, though research characterized by small samples, short duration, and poor methodology.

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                                                                                                                • Man, Sui Cheung, Siva Sundara Kumar Durairajan, Wan Fung Kum, et al. 2008. Systematic review on the efficacy and safety of herbal medicines for Alzheimer’s disease. Journal of Alzheimer’s Disease 14:209–223.

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                                                                                                                  Review of fifteen studies found potential for herbal medicines to be safe and effective treatment for AD. Authors note methodological flaws in design of research limit any conclusions drawn from studies. Recommended, in conjunction with Jia, et al. 2008, as background for discussion of complementary and alternative medicine approaches.

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                                                                                                                  • Wollen, Keith A. 2010. Alzheimer’s disease: The pros and cons of pharmaceutical, nutritional, botanical, and stimulatory therapies, with a discussion of treatment strategies from the perspective of patients and practitioners. Alternative Medicine Review 15:223–244.

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                                                                                                                    This concise review of biological approaches and stimulatory therapies is an excellent introduction to medical and complementary/alternative medicine approaches to AD. Includes brief introduction to AD pathology and relates interventions to pathology.

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                                                                                                                    Behavioral and Psychological Symptoms of Dementia

                                                                                                                    Psychotic symptoms (usually delusions and hallucinations), agitation, irritability and anger, aggression and violence, apathy, inappropriate behaviors (e.g., sexual behaviors), euphoria, anxiety, and depression are sometimes referred to as behavioral and psychological symptoms of dementia (BPSD) and sometimes as neuropsychiatric symptoms (NPS). These symptoms, often more than the primary symptoms of dementia, are associated with increased caregiver burden, increased functional limitations, decreased quality of life, increased health costs, and often are the events that lead to residential care. BPSD and NPS are highly prevalent in individuals with dementia; in fact, behavioral disturbances may be more prominent than memory impairment at certain stages of some dementias, such as frontotemporal dementia. The papers in this section provide an overview of the phenomenology and epidemiology of BPSD/NPS in dementia. Three papers examine the prevalence and risk factors for BPSD/NPS in dementia. Monastero, et al. 2009 reviews the prevalence and characteristics of NPS in mild cognitive impairment (MCI) and provide a useful comparison with rates in dementia. Ropacki and Jeste 2005 focuses specifically on psychotic symptoms in AD in their review of epidemiology and risk factors. Seitz, et al. 2010 limits its systematic review to long-term care (LTC) facilities but includes both BPSD and comorbid psychiatric disorders in residents with and without dementia. This paper was included both because of its focus on LTC and because it provides a useful comparison with studies that focus only on rates of BPSD/NPS in individuals with dementia. Wetzels 2010, a systematic reviews of the course of NPS in individuals with dementia in LTC settings, was published in the same journal issue as the Seitz, et al. 2010 paper. It is recommended that these two papers be read together, since one provides a cross-section of co-occurrence while the other provides a picture of how NPS changes over time. The two papers are recommended for direct practice students and staff as well as those interested in LTC planning and policy. Two papers in this section address the phenomenology and clinical presentation of psychotic symptoms in AD. Schneider and Dagerman 2004 examines the clinical characteristics and course of psychosis in individuals with AD, and Sweet, et al. 2003 reviews the evidence for whether there is a distinct phenotype of psychotic symptoms in AD. These papers are useful reading both for practitioners and students interested in dementia care and for those interested in the overlap between BPSD/NPS with very late onset schizophrenia-like psychosis. Finally, Black and Almeida 2004 reviews the impact of BPSD on caregivers in their review of the association between BPSD and burden of care.

                                                                                                                    • Black, Warwick, and Osvaldo P. Almeida. 2004. A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. International Psychogeriatrics 16:295–315.

                                                                                                                      DOI: 10.1017/S1041610204000468Save Citation »Export Citation »E-mail Citation »

                                                                                                                      Review of forty-two cross-sectional and longitudinal studies show moderately strong association between BPSD and caregiver burden, psychological distress, and depression.

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                                                                                                                      • Monastero, Roberto, Francesca Mangialasche, Cecilia Camarda, Sara Ercolani, and Rosolino Camarda. 2009. A systematic review of neuropsychiatric symptoms in mild cognitive impairment. Journal of Alzheimer’s Disease 18:11–30.

                                                                                                                        DOI: 10.3233/JAD-2009-1120Save Citation »Export Citation »E-mail Citation »

                                                                                                                        Review of twenty-seven studies reported that the most common behavioral symptoms of MCI were depression, anxiety, and irritability. Hospital-based studies reported a higher prevalence of NPS than population-based studies. Useful comparison with studies of prevalence of BPSD/NPS in dementia.

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                                                                                                                        • Ropacki, Susan A., and Dilip V. Jeste. 2005. Epidemiology of and risk factors for psychosis of Alzheimer’s disease: A review of 55 studies published from 1990 to 2003. American Journal of Psychiatry 162:2022–2030.

                                                                                                                          DOI: 10.1176/appi.ajp.162.11.2022Save Citation »Export Citation »E-mail Citation »

                                                                                                                          Review of fifty-five studies found prevalence of psychosis of 41 percent in individuals with AD. Incidence increased progressively over first three years of observation then hit a plateau. Authors identified several risk factors for psychotic symptoms.

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                                                                                                                          • Schneider, Lon S., and Karen S. Dagerman. 2004. Psychosis of Alzheimer’s disease: Clinical characteristics and history. Journal of Psychiatric Research 38:105–111.

                                                                                                                            DOI: 10.1016/S0022-39560300092-XSave Citation »Export Citation »E-mail Citation »

                                                                                                                            Authors identify a number of demographic, setting, and clinical conditions associated with presentation and course of psychotic symptoms in individuals with AD. Good overview of NPS for practitioners and students.

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                                                                                                                            • Seitz, Dallas, Nitin Purandare, and David Conn. 2010. Prevalence of psychiatric disorders among older adults in long-term care homes: A systematic review. International Psychogeriatrics 22:1025–1039.

                                                                                                                              DOI: 10.1017/S1041610210000608Save Citation »Export Citation »E-mail Citation »

                                                                                                                              Review of seventy-four studies examined prevalence of dementia, psychiatric disorders, and psychiatric symptoms, both independently and comorbid, of LTC residents. Includes data from North America, Europe, Australia, Middle East, and Asia. Recommended for those with policy as well as practice interests.

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                                                                                                                              • Sweet, R. A., V. L. Nimgaonkar, B. Devlin, and D. V. Jeste. 2003. Psychotic symptoms in Alzheimer disease: Evidence for a distinct phenotype. Molecular Psychiatry 8:383-392.

                                                                                                                                DOI: 10.1038/sj.mp.4001262Save Citation »Export Citation »E-mail Citation »

                                                                                                                                Authors review research evidence for possible genetic models of psychotic symptoms of psychosis in AD. Good addition to papers examining nongenetic risk factors for BPSD/NPS.

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                                                                                                                                • Wetzels, Roland, Sytse Zuidema, Iepke Jansen, Frans Verhey, and Ramond Koopmans. 2010. Course of neuropsychiatric symptoms in residents with dementia in long-term care institutions: A systematic review. International Psychogeriatrics 22:1040–1053.

                                                                                                                                  DOI: 10.1017/S1041610210000918Save Citation »Export Citation »E-mail Citation »

                                                                                                                                  Review of eighteen longitudinal studies examine specific pattern in which different NPS symptoms wax, wane, and remain constant over time. Good addition to and comparison with other papers examining course of NPS in individuals with dementia.

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                                                                                                                                  Treatment

                                                                                                                                  It is consistently recommended that nonpharmacological (psychosocial) interventions be used as the first line of treatment of BPSD/NPS. There is, however, more diversity of opinion about the effectiveness and safety of the different pharmacological approaches to treatment. There have been a number of excellent systematic reviews of nonpharmacological treatments for BPSD/NPS and most of these are cited in the systematic review prepared by the Evidence-based Synthesis Program Center of the Portland VA Medical Center for the Department of Veterans Affairs (O’Neil, et al. 2011). This systematic review examines the comparative effectiveness, safety, and cost of the full range of nonpharmacological interventions, including cognitive/emotion-oriented therapies, sensory stimulation interventions, behavior-management techniques, animal-assisted therapy, and exercise. This is recommended as essential reading for researchers, practitioners, and students interested in treatment of BPSD/NPS. There is no single overview that captures the complexity of the debate on use of medication for these symptoms. Cummings, et al. 2008 examines the question of whether medications (i.e., cholinesterase inhibitors and memantine) designed for symptomatic relief of the primary symptoms of AD, such as memory, are also effective in reducing BPSD/NPS. Ballard and Howard 2006 and Sultzer, et al. 2008 examine the safety and efficacy of antipsychotic medications in individuals with AD and other dementias. The latter study is from CATIE-AD, a large multicenter study of atypical antipsychotic medication use in AD. Nelson and Devanand 2011 reviews the evidence for use of antidepressants for individuals with depression and dementia. Ballard, et al. 2009 reviews the effectiveness of drugs from several different classes of medication to reduce agitation and aggression in people with AD. Finally, Agronin 2008 integrates both nonpharmacological and pharmacological approaches in his discussion of treatment of agitation, psychosis, and depression, though he does not provide depth of analysis of the literature found in the systematic reviews. Taken together, the papers in this section provide a solid basis for understanding the debate on treatment of BPSD/NPS. If social work teachers, providers, and students are limited to one or two resources, Agronin 2008 and O’Neil, et al. 2011 would be good choices.

                                                                                                                                  • Agronin, Marc E. Alzheimer disease and other dementias. 2d ed. Philadelphia: Lippincott Williams & Wilkins, 2008.

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                                                                                                                                    Includes chapters on assessment and treatment of depression, psychosis and agitation. Includes discussion of medications for comorbid conditions. Places assessment and treatment of these conditions in context of an overall plan for dementia treatment. Good overview of treatment, though less detail on effectiveness than other papers in this section.

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                                                                                                                                    • Ballard, Clive, and Robert Howard. 2006. Neuroleptic drugs in dementia: Benefits and harm. Nature Reviews Neuroscience 7:492–500.

                                                                                                                                      DOI: 10.1038/nrn1926Save Citation »Export Citation »E-mail Citation »

                                                                                                                                      Good balanced discussion of efficacy and risk of both typical and atypical antipsychotic drugs for agitation, aggression, psychotic symptoms. Focus on AD but mentions vascular, Lewy body, and other dementias.

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                                                                                                                                      • Ballard, Clive, Anne Corbett, Ramilgan Chitramohan, and Das Aarsland. 2009. Management of agitation and aggression associated with Alzheimer’s disease: Controversies and possible solutions. Current Opinion in Psychiatry 22:532–540.

                                                                                                                                        DOI: 10.1097/YCO.0b013e32833111f9Save Citation »Export Citation »E-mail Citation »

                                                                                                                                        Compares BPSD rates in AD, Parkinson’s disease, vascular, and Lewy body dementias. Reviews recommendations for psychological and pharmacological treatments for agitation and aggression. Evidence for psychological and staff-training interventions as first line for agitation. Modest benefits of atypical antipsychotic drugs in short-term aggression management, more limited benefits for long-term treatment.

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                                                                                                                                        • Cummings, Jeffrey L., Joan Mackell, and Daniel Kaufer. 2008. Behavioral effects of current Alzheimer’s disease treatments: A descriptive review. Alzheimer’s & Dementia 4:49–60.

                                                                                                                                          DOI: 10.1016/j.jalz.2007.10.011Save Citation »Export Citation »E-mail Citation »

                                                                                                                                          Focus on BPSD-reducing effects of pharmacological treatments for primary symptoms of AD (e.g., cholinesterase inhibitors, memantine). Good discussion of characteristics of responders versus nonresponders.

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                                                                                                                                          • Nelson, J. Craig, and Davangere P. Devanand. 2011. A systematic review and meta-analysis of placebo-controlled antidepressant studies in people with depression and dementia. Journal of the American Geriatric Society 59:577–585.

                                                                                                                                            DOI: 10.1111/j.1532-5415.2011.03355.xSave Citation »Export Citation »E-mail Citation »

                                                                                                                                            Review of seven studies examining tricyclic and second-generation antidepressants in people with dementia plus depression—mostly major depression but includes dysthymia and minor depression. Well-defined inclusion and exclusion criteria and good discussion of methods in studies reviewed.

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                                                                                                                                            • O’Neill, Maya E., Michele Freeman, Vivan Christensen, Robin Telerant, Ashlee Addleman, and Devan Kansagara. Non-pharmacological interventions for behavioral symptoms of dementia: A systematic review of the evidence. VA-ESP Project #05-225. Portland, OR: Evidence-Based Synthesis Program (ESP) Center, Portland VA Medical Center, 2011.

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                                                                                                                                              Thorough review of effectiveness, safety, and cost of nonpharmacological interventions for BPSD, groups interventions into cognitive/emotion-oriented therapies, sensory stimulation interventions, behavior management techniques, animal-assisted therapy, and exercise. Includes five-page executive summary of findings for readers seeking a quick overview. Good place to start reading on this topic.

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                                                                                                                                              • Sultzer, David L., Sonia M. Davis, Pierre N. Tariot, et al. 2008. Clinical symptom responses to atypical antipsychotic medications in Alzheimer’s disease: Phase 1 outcomes from the CATIE-AD effectiveness trial. American Journal of Psychiatry 165:844–854.

                                                                                                                                                DOI: 10.1176/appi.ajp.2008.07111779Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                Results from CATIE-AD, a large-scale, multicenter examination of three commonly used atypical antipsychotic drugs for BPSD. One of strengths of this study is that design facilitates generalization of results to real-world practice.

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                                                                                                                                                Caregivers

                                                                                                                                                The majority of caregiving for individuals in the earlier stages of dementia is provided by family rather than professional caregivers, though in high-income nations this shifts toward professionals in the later stages when more intense medical care in institutional settings is needed. Family caregivers, informal caregivers, and professional caregivers and those who work with them all can benefit from the resources in this section. In addition, the websites listed in the General Overviews section of this bibliography also provide links to resources and education for caregivers. The Rosalynn Carter Institute for Caregiving, The Family Caregiver Alliance and the National Alliance for Caregiving provide links to educational resources, blogs, events, local resources, and news about illness and caregiving, though none of these sites is specific to caregivers of individuals with dementia. National Institute on Aging 2012 is one of the best (free) resources for both caregivers and professionals is available in both print and online versions. This 136-page booklet includes specific tips on working with various kinds of problems common to people with AD and other dementias, a glossary of terms and an overview of medications used in treatment of AD, and links to a variety of resources. Each issue of the Gerontologist, a journal of the Gerontological Society of America, includes a section of research and analysis on caregiving and is a good source for practice and policy literature in this area. Mace and Rabins 2006 is the fourth edition of a book that has provided family caregivers support, recommendations, and hope for over thirty years. It includes research as well as caregiving information for individuals with Alzheimer’s and other dementias. Finally, there are several papers about caregiver burden and interventions. Gallagher-Thompson and Coon 2007 examines evidence supporting the effectiveness of psychoeducational, psychotherapeutic, and multicomponent evidence-based interventions for caregivers of people with dementia. Napoles, et al. 2010 and Goins, et al. 2009 explore diversity issues in papers on culturally sensitive caregiver interventions and on rural caregiving.

                                                                                                                                                • Family Caregiver Alliance National Center on Caregiving

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                                                                                                                                                  FCA provides information and webinars, resources, a blog, news releases, online support groups, and links to state-by-state help for family caregivers. Includes information and resources on dementia among other chronic health conditions. Practical Tools and Resources for Caregivers and Professionals has useful recommendations for informal and professional caregivers.

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                                                                                                                                                  • Gallagher-Thompson, Dolores, and David W. Coon. 2007. Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging 22:37–51.

                                                                                                                                                    DOI: 10.1037/0882-7974.22.1.37Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                    Review of nineteen studies showed a large effect size for psychoeducational skill-building and psychotherapy interventions and a relatively low effect size for multicomponent interventions. Includes studies of family caregivers of older adults with cognitive impairment and physical frailty, but not caregivers of older adults with comorbid psychiatric problems.

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                                                                                                                                                    • Gerontologist. 1961–.

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                                                                                                                                                      The Gerontologist, from Oxford University Press, is a bimonthly journal of the Gerontological Society of America. Each issue has a section that includes articles on caregiving. Journal takes a multidisciplinary approach to aging, publishing research and analysis articles on social policy, program development, and service delivery.

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                                                                                                                                                      • Goins, R.Turner, S. Melinda Spencer, and Joshua C. Byrd. 2009. Research on rural caregiving: A literature review. Journal of Applied Gerontology 28:139–170.

                                                                                                                                                        DOI: 10.1177/0733464808326294Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                        Narrative review of thirty-one studies of informal caregiving of dependent older adults in rural settings. Included quantitative, qualitative, and mixed-method research. Sixteen-page table of study details and critique of methodological limitations.

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                                                                                                                                                        • Mace, Nancy L., and Peter V. Rabins. 2006. The 36 hour day: A family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life. 4th ed. Baltimore: Johns Hopkins Univ. Press.

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                                                                                                                                                          This book has become a standard recommendation for caregivers. Includes descriptions of the dementias and related conditions, advice on locating medical providers and other resources, a discussion of legal and financial issues, recommendations on self-care, and tips on home care for a wide variety of behavioral, medical, and hygiene concerns.

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                                                                                                                                                          • Napoles, Anna M., Letha Chadiha, Rani Eversley, and Gina Moreno-John. 2010. Developing culturally sensitive dementia caregiver interventions: Are we there yet? American Journal of Alzheimer’s Disease & Other Dementias 25:389–406.

                                                                                                                                                            DOI: 10.1177/1533317510370957Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                            Two systematic reviews: differences in caregiving experiences of African-American, Latino, and Chinese American caregivers and cultural tailoring of interventions. Authors identify differences at multiple levels and domains. Excellent resource for discussion of diversity in caregiving experience and interventions. A bibliography with 131 references provides good access to literature.

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                                                                                                                                                            • National Alliance for Caregiving

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                                                                                                                                                              Alliance of national caregiving organizations focuses on issues of family caregiving. Information about research, legislation, and advocacy, and links to coalitions in different states.

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                                                                                                                                                              • National Institute on Aging. 2012. Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging. Bethesda, MD: National Institute on Aging.

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                                                                                                                                                                Guidebook for caregivers of persons with AD. Clearly written and can be downloaded or ordered in print format. Information about AD, associated conditions, quotes from caregivers, tips on providing care and self-care. Overview of medications for dementia and medication issues for older adults. Highly recommended for caregivers, students, and practitioners.

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                                                                                                                                                                • Rosalynn Carter Institute for Caregiving

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                                                                                                                                                                  General caregiving organization that has great information (especially for professionals) regarding interventions for caregivers. The emphasis is on evidence-based interventions, including a searchable database to identify interventions, including those that have training manuals available. While it is general caregiving, programs related to dementia are easily available.

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