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Describes an intermittent, focused social work intervention to help overcome personal and intrapsychic barriers to using available help for wives of Alzheimer's patients. Discusses therapeutic goals, common themes, and implications for practice with caregiving wives with specific attention to supporting the wife in her wish to "responsibly finish" rather than separate from a marital bond. (Author/ABL)

Introduction: The Alzheimer's Disease Prevention Registry (ADPR) of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University has been successful in achieving a racially diverse and "research ready" cohort of cognitively healthy volunteers. Methods: The ADPR is based on an infrastructure that includes: (1) an administrative leadership team; (2) a coordinating center; (3) an IT management team; (4) a community engagement team; and (5) collaborations with study partners across disciplines. Results: The ADPR currently has more than 4677 members, 26% of whom are African American. The ADPR has supported 21 studies including 8 biomarker studies, 7 clinical trials, 4 cognitive neuroscience studies, and 2 studies assessing novel computerized measures. Discussion: We describe our experiences establishing and maintaining a diverse ADPR as well as insights on recruitment strategies to increase the representation of African Americans in Alzheimer's disease studies. [ABSTRACT FROM AUTHOR]

This symposium includes three papers that provide new insights into the caregiving experience. Papers focus upon a group of caregivers who appear to be at special risk for negative outcomes, the family caregivers of older persons suffering from Alzheimer's Disease or a related disorder. (Author/ABB)

There is now an unprecedented opportunity to improve the care of the over 5 million people who are living with Alzheimer's disease and related dementias and many more with cognitive impairment due to brain injury, systemic diseases, and other causes. The introduction of a new Medicare care planning benefit—long sought openly by advocacy organizations and clinicians and badly needed by patients and families—could greatly improve health care quality, but only if widely and fully implemented. We describe the components of this new benefit and its promise of better clinical care, as well as its potential to create a new platform for clinical and health outcomes research. We highlight external factors—and some that are internal to the benefit structure itself—that challenge the full realization of its value, and we call for broad public and professional engagement to ensure that it will not fail. [ABSTRACT FROM AUTHOR]

Objectives To understand the range of symptoms that present to family caregivers of community-dwelling persons with Alzheimer's disease and related dementias ( ADRD). Design Six-month longitudinal prospective study to identify the incidence of new or worsening symptoms and their association with acute care medical service use. Setting Community-based sample of volunteers from multiple states. Participants A total of 136 patient-caregiver dyads with a range of dementia severity. Measurements Forty four symptoms and signs common in older persons and/or persons with dementia; frequency of emergency department visits, hospitalizations, and death; and associations between reported symptoms and acute medical care. Results During a mean of 5.7 months' follow-up, new or worsening organ-specific (90% of participants), nonspecific (89%), and behavioral (88%) symptoms were common, with the average caregiver reporting seven new or worsening symptoms. Most common were worsening confusion (74%), decreased activity (64%), agitation (57%), hallucinations/delusions (45%), voice and speaking problems (45%), not eating or drinking (44%), and stress/anxiety (41%). Hospitalization and emergency department use occurred respectively in 19% and 20% of participants, and were associated with organ-specific symptoms ( OR 3.15, P = .02), less so with nonspecific symptoms ( OR 2.27, P = .07), and very little with behavioral symptoms ( OR 1.44, P = .38). Within each symptom category, certain symptoms were significantly associated with acute medical service use. Conclusion Family caregivers of persons with ADRD must respond to a variety of medical, nonspecific, and behavioral symptoms. The high incidence of new or worsening symptoms and of acute medical care use suggests a need to better target symptom evaluation and management in caregiver education. [ABSTRACT FROM AUTHOR]

Introduction Under the U.S. national Alzheimer's plan, the National Institutes of Health identified milestones required to meet the plan's biomedical research goal (Goal 1). However, similar milestones have not been created for the goals on care (Goal 2) and support (Goal 3). Methods The Alzheimer's Association convened a workgroup with expertise in clinical care, long-term services and supports, dementia care and support research, and public policy. The workgroup reviewed the literature on Alzheimer's care and support; reviewed how other countries are addressing the issue; and identified public policies needed over the next 10 years to achieve a more ideal care and support system. Results The workgroup developed and recommended 73 milestones for Goal 2 and 56 milestones for Goal 3. Discussion To advance the implementation of the U.S. national Alzheimer's plan, the U.S. government should adopt these recommended milestones, or develop similar milestones, to be incorporated into the national plan. [ABSTRACT FROM AUTHOR]

To better understand the process and outcomes of family involvement for long-term care residents with varying stages of dementia, we analyzed family and staff data for 467 residents of 24 residential care/assisted living and nursing-home settings. Adjusted analyses found that although the amount of family visitation did not significantly vary by resident cognitive status (15 versus 20 visits/month to persons with and without dementia, respectively), the nature of the visit did. Families of cognitively intact residents spent more time in activities related to social and community engagement, such as taking residents on trips and calling and writing letters (p < .001), while families of more impaired residents spent more time on care-related activities, including tasks related to nutrition (p < .027), mobility (p = .001), and discussing care with staff (p = .007), the latter of which was associated with greater burden (p < .001). Staff identified similar patterns but perceived less family involvement. [ABSTRACT FROM AUTHOR]

A diagnosis of an early-stage dementia poses risks to lifelong resilience in individuals with a diagnosis of dementia and their family care partners. The unique social engagement and support needed for sustained resilience in individuals with early-stage dementias and their families are often overlooked by traditional community-based long-term care services. Lessons learned from 4 consecutive evidence-based early-stage Alzheimer education and support groups highlight how these structured 8-week programs set in motion a new, continuously expanding community to support resilience among individuals with a diagnosis of dementia and their families. Individual perspectives from 35 dyads provide specific examples of supports for resilience. [ABSTRACT FROM AUTHOR]

The recruitment of asymptomatic volunteers has been identified as a critical factor that is delaying the development and validation of preventive therapies for Alzheimer disease (AD). Typical recruitment strategies involve the use of convenience samples or soliciting participation of older adults with a family history of AD from clinics and outreach efforts. However, high-risk groups, such as ethnic/racial minorities, are traditionally less likely to be recruited for AD prevention studies, thus limiting the ability to generalize findings for a significant proportion of the aging population. A community-engagement approach was used to create a registry of 2311 research-ready, healthy adult volunteers who reflect the ethnically diverse local community. Furthermore, the registry's actual commitment to research was examined, through demonstrated participation rates in a clinical study. The approach had varying levels of success in establishing a large, diverse pool of individuals who are interested in participating in pharmacological prevention trials and meet the criteria for primary prevention research trials designed to delay the onset of AD. Our efforts suggest that entry criteria for the clinical trials need to be carefully considered to be inclusive of African Americans, and that sustained effort is needed to engage African Americans in pharmacological prevention approaches. [ABSTRACT FROM AUTHOR]

Research within residential care/assisted living (RC/AL) settings has shown that the attitudes of personal care (PC) staff toward their organization and its residents and families can affect the quality of resident care. This article describes the perceptions, experiences, and attitudes of PC staff and their supervisors, and considers these data in the context of non-hierarchical staffing patterns--a philosophically expected, yet unproven tenet of RC/AL. Using data collected from 18 RC/AL communities, these analyses compared the characteristics, perceptions, experiences, and attitudes of PC staff (Research within residential care/assisted living (RC/AL) settings has shown that the attitudes of personal care (PC) staff toward their organization and its residents and families can affect the quality of resident care. This article describes the perceptions, experiences, and attitudes of PC staff and their supervisors, and considers these data in the context of non-hierarchical staffing patterns--a philosophically expected, yet unproven tenet of RC/AL. Using data collected from 18 RC/AL communities, these analyses compared the characteristics, perceptions, experiences, and attitudes of PC staff (N = 250) and supervisors (N = 30). Compared to supervisors, PC staff reported greater burden, frustration, depersonalization, hassles, and feeling significantly more controlling of, and less in partnership with, families (p < 0.05). Because the PC staff experience is crucial for resident outcomes, more work is needed to create an environment where PC staff are less burdened and have better attitudes toward work and families. [Journal of Gerontological Nursing, 40(1), 41--49.] [ABSTRACT FROM AUTHOR]

Nursing homes and residential care/assisted living settings provide care to 2.4 million individuals. Few studies compare the experience of, and relationships between, family and staff in these settings, despite ongoing family involvement and evidence that relationships are problematic. Data from 488 families and 397 staff members in 24 settings examined family involvement and family and staff burden, depressive symptoms, and perceptions; and staff absenteeism and turnover. There were few differences across setting types. Although conflict rarely occurred, there was room for improvement in family–staff relations; this area, and preparing family for their caregiving roles, are appropriate targets for social work intervention. [ABSTRACT FROM PUBLISHER]

For more than 3 decades, the recruitment and retention of African Americans for research in Alzheimer disease have been regarded as difficult undertakings with poor results. The typical explanation for failure to respond to research participation options is a widespread mistrust of research and the biomedical community. Mistrust is a reasonable response; given the historic reality of malfeasance, victimization, and mistreatment over the course of the research participation history of African Americans. The challenges are real but there are opportunities for successful recruitment and retention of African Americans for research including research on Alzheimer disease. Participation, however, comes with specific terms and considerations. Two of the most prominent criteria for research recruitment and retention are the transparency and accountability of the investigator, which may determine how he or she proceeds from the Start of the process throughout the steps of recruitment, retention, and subsequent follow-up with the community. [ABSTRACT FROM AUTHOR]

Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed description of the knowledge, skills, and values that are requisite for the unique, essential, and appropriate role of social work. This comprehensive statement delineates individual, family, group, team, community, and organizational interventions that extend across settings, cultures, and populations and encompasses advocacy, education, training, clinical practice, community organization, administration, supervision, policy, and research. This document is intended to guide preparation and credentialing of professional social workers, to assist interdisciplinary colleagues in their collaboration with social workers, and to provide the background for the testing of quality indicators and "best practice" social work interventions. [ABSTRACT FROM AUTHOR]

Focuses on the problems faced by families of Alzheimer's disease patients, even after the patient has been admitted to a residential facility. Difficulty of the transition; Emotions which may be experienced by family members; Practical tips for successful staff-family communication from moving in through visiting and end-of-life care; Advantages of families remaining active in caring for the Alzheimer's patient.

Describes Generation, a geriatric clinic program sponsored by Southern California Edison Company for its retirees and their dependents. Multidisciplinary team approach; Areas in which patients receive aggressive intervention; How ongoing research is evaluating the program's effectiveness in providing high-quality health care services while containing costs; How program was developed; Care planning and treatment procedures; More.

Families caring for a person with Alzheimer's disease (AD) soon discover that it is unlike any other illness. Coping with a degenerative brain disease is much different than dealing with a physical disability. AD is more disruptive to, and has greater impact on, the family than other chronic diseases. AD caregiving carries with it a high financial, social, and emotional price. Families must work toward effectively coping with the disease, decreasing the harmful effects on the family, and keeping family conflicts to a minimum. Support groups can provide families with much-needed information on the disease, emotional and practical support, and an expressive or advocacy outlet. Formal services can help relieve some of the burden of caring for an AD patient. Family members must remember that there is no "right" way to care for a person with AD, and each family must determine, with the help of the appropriate professionals and services, how to best meet its own needs. Given the burdens of care, however, even small interventions may translate into improvements in the quality of life or confidence of the caregiver. [ABSTRACT FROM AUTHOR]

No abstract available for this article. [ABSTRACT FROM PUBLISHER]

The well-being of family caregivers of older memory-impaired adults was examined in four dimensions: physical health, mental health, financial resources, and social participation. Results indicated that, relative to random community samples, caregivers are most likely to experience problems with mental health and social participation. In addition, characteristics of the caregiving situation were more closely associated with caregiver well-being than were illness characteristics of the patients. [ABSTRACT FROM PUBLISHER]

Examines the senior-to-senior mediation service (SSMS) project, sponsored by the University of Denver Institute of Gerontology. This program demonstrates the important potential of using seniors as volunteer mediators to assist other seniors. Program auspices and goals; Program implementation; Program evaluation and findings.