Caregivers

Background and context for interpretation of the data about Alzheimer's disease and other dementias are contained in the Overview. This information includes definitions of the types of dementia and a summary of current knowledge about Alzheimer’s disease. Other sections address prevalence, mortality, caregiving and use and costs of care and services. There is a focus on the challenges of people with Alzheimer’s disease and other dementias who live alone.

This public policy issue brief from the Alzheimer’s Association describes functional eligibility issues for people with dementia and discusses how six states determine eligibility for Medicaid-funded long-term care services. Based on an analysis of these states provisions, the paper makes recommendations for appropriately assessing the long-term care needs of people with dementia, and for setting level-of-care criteria that treat people with physical and cognitive impairments equitably.

This report examines the importance of Medicaid as a safety net for financing long-term services and supports (LTSS). Most older adults will require some form of LTSS, but paid LTSS can be very expensive. Unpaid, family caregiving has enormous economic value and currently accounts for the greatest portion of LTSS provision. However, if an individual needs paid LTSS, and can't afford LTSS insurance, Medicaid is often needed after an individual spends down their assets.

The U.S. Department of Health and Human Services Agency for Healthcare Research and Quality (AHRQ) has a new YouTube channel. It shows successful health information technology projects that focus on ways to enhance quality measurement, preventive care & medication management. These videos provide insights for health services researchers, health care providers and patient advocates on how AHRQ research supports the use of health IT to improve quality, safety, efficiency and effectiveness of care.

This compilation includes information about state 1915(c) Home and Community-Based Medicaid waivers, which provides the largest federal source of funding assistance for respite. New waiver tables have been added to this compendium for the following states: DC, Oregon, South Dakota, Utah, Washington, West Virginia, Wisconsin and Wyoming. Individual tables were also added to the Search Results pages for each of these states in the National Respite Locator under Respite Funding and Eligibility.

This fact sheet provides strategies for identifying transportation options and eliminating transportation barriers related to the provision and receipt of respite care. It addresses the importance of transportation and how to help family caregivers, providers and Lifespan Respite programs identify community transportation resources; determine the best transportation options; include transportation in the respite planning process; and create transportation options.

This survey provides national, statewide, and area specific, within certain states (based on population), average daily rates for private and semi-private rooms in a nursing home, monthly base rates in assisted living communities, hourly rates for home health aide and homemaker services, and daily rates for adult day services as well as the range of rates in each area surveyed. Download the survey and key findings.

This report evaluates the experience with the New Jersey Care Partner Support Pilot Program (Pilot) that was conducted in four counties in New Jersey in 2011. The Pilot aims at improving the knowledge and skills of family caregivers caring for adult family members and friends participating in New Jersey’s Medicaid Global Options home and community-based services waiver (GO Waiver) and the state-only funded Jersey Assistance to Community Caregivers (JACC) program.

This study challenges the common perception of family caregiving as a set of personal care and household chores that most adults already do or can easily master. The major shift is that the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once only provided in hospitals. The findings highlight an urgent need for both individual and collective action. The report makes ten recommendations to support the current caregivers.

This report finds common themes between African American and Hispanic family caregivers and also between the nurses and social workers. The report suggests ways to improve collaboration and communication between families and professionals. Explores the needs of African American and Hispanic family caregivers, finding common themes between the two groups and also between the nurses and social workers.