Advancing Alzheimer's disease diagnosis, treatment, and care: recommendations from the Ware Invitational Summit.

To address the pending public health crisis due to Alzheimer's disease (AD) and related neurodegenerative disorders, the Marian S. Ware Alzheimer Program at the University of Pennsylvania held a meeting entitled "State of the Science Conference on the Advancement of Alzheimer's Diagnosis, Treatment and Care," on June 21-22, 2012. The meeting comprised four workgroups focusing on Biomarkers; Clinical Care and Health Services Research; Drug Development; and Health Economics, Policy, and Ethics. The workgroups shared, discussed, and compiled an integrated set of priorities, recommendations, and action plans, which are presented in this article.

Paid Family Leave: An Emerging Benefit for Employed Family Caregivers of Older Adults.

As our population ages, the ability to take time off to care for an ill family member or close friend without losing income or a job is a growing social, health, and economic issue for American families. Therefore, the need for paid family leave policies for workers with caregiving responsibilities is an important topic for employers and policymakers, in the clinical care of older adults, and at kitchen tables across the United States. Despite this growing need, paid family leave is not available to most workers, and there is no national paid family leave policy. Health care and social service providers have a role in ensuring that family members of their patients with a serious health condition or disability are aware of the potential availability of paid family leave benefits in the states and businesses that provide them. Building a better system of care for older adults means changes not only in health care settings and in long-term services and supports, but in workplaces too. This article describes the challenges faced by workers with family caregiving responsibilities, explains why paid family leave matters, indicates which states have adopted these protections, and reviews research on existing paid family leave policies. Finally, actions by clinicians and other stakeholders are offered to advance awareness about paid family leave benefits, including coverage for workers with care responsibilities for older people.

Decision-making involvement scale for individuals with dementia and family caregivers.

This report describes the development and preliminary psychometric properties of the Decision-Making Involvement Scale for individuals with dementia and family caregivers. Data were collected from 217 individuals with dementia and their respective caregivers. Principal axis factor analysis, Kendall tau, and Pearson correlations were used to determine the Decision-Making Involvement Scale's psychometric properties, mean differences of caregiver and individual with dementia, and the relationship between scores of Decision-Making Involvement Scale and measures of well-being. Analyses support a reliable, 1-factor solution of the Decision-Making Involvement Scale for both individuals with dementia and caregivers. Socio-demographic, impairment, and well-being variables are differentially related to the perceptions of how involved the individual with dementia is in decision making. The Decision-Making Involvement Scale provides useful information about daily decision making of an individual with dementia, and it shows promise as a means for understanding the relationship between decision-making involvement and well-being of individuals with dementia and caregivers.

Measuring the values and preferences for everyday care of persons with cognitive impairment and their family caregivers.

PURPOSE: This study describes the development and psychometric properties of a 24-item scale to be used in both research and practice settings that assesses the everyday care values and preferences of individuals with cognitive impairment and the perceptions of family caregivers about their relative's values and preferences for care. DESIGN AND METHODS: The Values and Preferences Scale was developed on the basis of previous measures used with cognitively intact samples with additional items generated by the authors in consultation with an advisory committee of practitioners, researchers, family caregivers, and persons with cognitive impairment. Individuals with mild to moderate cognitive impairment and their family caregivers (n = 111) were interviewed for the study. RESULTS: Results of a factor analysis determined that the Values and Preferences Scale can be divided into two domains or subscales for persons with cognitive impairment and their family caregivers (i.e., Environment-Social Network and Personal Autonomy). These domains were found to have good internal consistency for both the individuals and their caregivers (Cronbach's alphas ranged from.70 to.82). Evidence of their psychometric properties compared with measures of depression, quality of life, and involvement in decision making was also found. IMPLICATIONS: These findings suggest that persons with cognitive impairment are able to express values and preferences about care they currently receive or will need in the future. Further application and testing of the Values and Preferences Scale should prove useful to practitioners who assist those with cognitive impairment and their caregivers with daily care decisions and the development of care plans.

A study of 10 states since passage of the national family caregiver support program: policies, perceptions, and program development.

PURPOSE: This study describes the preliminary experiences of 10 states in providing support services to family or informal caregivers of elderly adults and adults with disabilities; it focuses on the newly created National Family Caregiver Support Program, state general funds, Medicaid-waiver programs, and other state-funding streams. DESIGN AND METHODS: Case studies were conducted, between March and July 2002, through in-person interviews with state officials and stakeholders in Alabama, California, Florida, Hawaii, Indiana, Iowa, Maine, Pennsylvania, Texas, and Washington. RESULTS: States were in the start-up phase of implementing the National Family Caregiver Support Program and varied greatly in program design and integration of caregiver support into their home- and community-based care system. Viewing family caregivers as a client population was a paradigm shift for many state officials. IMPLICATIONS: Heavy reliance is currently placed on family and informal caregivers in home- and community-based care, without adequate support services. Family support should be an explicit goal of long-term-care system reform.

Decision-making for persons with cognitive impairment and their family caregivers.

Despite the large number of persons affected by cognitive impairment, very little is known about how they and their families make choices and decisions about everyday living and long-term care. Moreover few studies have examined the concept of consumer direction, particularly the ability ofcognitively impaired persons to delegate decision-making to other persons. This study explored decision-making through personal interviews with 51 respondent pairs, or dyads (i.e., the cognitively impaired person and the family caregiver). Results suggest that persons with mild to moderate cognitive impairment are able to answer questions about their preferences for daily care and to choose a person, usually a spouse or adult child, to make a variety of decisions on their behalf by recognizing both voices-those of the care receiver and the family caregiver--we can enhance future research and practice, foster the development of consumer direction in long-term care, and advance public policy to support caregiving families.

Preliminary experiences of the states in implementing the National Family Caregiver Support Program: a 50-state study.

Despite increased attention to policy choices to support family and informal caregivers, relatively little is known about states' experiences in providing caregiver support services. This article reports on the first nationwide survey of all 50 states and the District of Columbia in providing caregiver services since the passage of the National Family Caregiver Support Program. State program administrators reported that their program differs from other home and community-based services because of the explicit focus on the family or informal caregiver. Results suggest that despite an increasing availability of caregiver supports in all 50 states, there is also a great unevenness in services and service options for family caregivers across the states and within states.

Family and friends as respite providers.

Consumer-directed service options in home- and community- based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers "direct-pay" program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.

Older women with breast cancer: caregiving and the risk of depression--an exploratory analysis.

OBJECTIVES: The primary objective of this exploratory analysis was to assess the prevalence of caregiving among older (60+) newly diagnosed female breast cancer patients and to examine the risk of depression associated with breast cancer, caregiving, and age, at 3 months and 12 months after diagnosis. METHODS: Data from interviews conducted for the case-control study, Health and Functioning in Women with Breast Cancer (HFW), were used for this analysis. Interviews were conducted at 3 months and 12 months post-diagnosis. Participants for this analysis were restricted to those who completed both interviews (cases n = 904; controls n = 966). Risk of depression was assessed using a self-reported depression question from the HFW instrument. RESULTS: The multivariate analysis showed that stage of breast cancer was significantly related to depression among older women with breast cancer while controlling for various socio-demographic factors; however, caregiving did not significantly increase the risk for depression for this population. DISCUSSION: A breast cancer diagnosis for women, regardless of age or caregiving status, presented an increased risk of depression at 3 and 12 months post-diagnosis. These and other findings and their implications for social work practice are discussed.