Caregivers

To assist states designing and/or revising HCBS waivers, in this report ADvancing States analyzed how waiver language defines family caregivers and how those definitions relate to older adults without immediate family available as caregivers.

On Tuesday, September 17th, the Department of Health and Human Services (HHS), through the Administration for Community Living, delivered a progress report to Congress on the federal implementation of the 2022 National Strategy to Support Family Caregivers. This Strategy includes recommendations to ensure that family caregivers have the support and resources they need, along with commitments from fifteen federal agencies and 350 actions to implement these recommendations. To date, all of these actions have either been completed or are currently in progress. This report to Congress reflects the Biden-Harris Administration’s ongoing commitment to addressing the unmet needs of family caregivers across the country.

The Center for Health Care Strategies (CHCS) has released a fact sheet detailing the challenges faced by LGBTQ+ caregivers when navigating health and human services systems. The fact sheet offers policy recommendations centered on inclusive language, intersectional approaches, comprehensive data collection regarding sexual orientation and gender identity, and strategies to address ageism, ableism, homophobia, and transphobia in caregiving settings. The fact sheet also emphasizes the need for stakeholders to collaborate with community leaders in order to better understand the needs, barriers, and existing strengths of LGBTQ+ caregivers.

The ADvancing States, in partnership with the National Alliance for Caregiving, created an infographic that depicts an overview of statistics on the experiences of caregivers in the United States, documenting their growing contributions to providing care to older adults and persons with disabilities in light of limited resources for caregiver services.

CMS is inviting states to participate in a Medicaid learning collaborative. The learning collaborative is an opportunity for states to develop new solutions and identify promising practices to improve the delivery of supports and services for people with I/DD and their aging caregivers. The collaborative will consist of six monthly virtual learning sessions between November 2021 and April 2022.

The University of California, San Francisco and Northwestern University are testing a program for caregivers of people with Alzheimer's Disease. The program, titled LEAF (Life Enhancing Activities for Family Caregivers) is funded by a grant from the National Institute on Aging, and is designed to help lower stress and support caregivers. Participants must be the primary caregiver of someone with Alzheimer’s disease or probable Alzheimer's, be English-speaking, and have access to Wi-Fi.

Researchers at Emory University Goizueta Alzheimer's Disease Research Center are seeking participants for a study on LGBTQ caregivers. The project is intended to help develop a caregiver training program that addresses the obstacles these caregivers face in caring for people with Dementia. The center is seeking individuals who identify as lesbian, gay, bisexual or transgender, are 18 or older, and consider themselves a primary caregiver to complete a 60 minute questionnaire.

ACL has announced that the theme of Older Americans Month (OAM) 2021 is Communities of Strength. Older adults have built resilience and strength over their lives through successes, failures, joys, and difficulties. Their stories and contributions help to support and inspire others. In May, ACL will celebrate the strength of older adults and the Aging Network, with special emphasis on the power of connection and engagement in building strong communities.

This paper provides direct insights from managed care leaders about family caregiver supports and provides examples of how progressive managed care plans are supporting family caregivers who are caring for plan members with LTSS needs. The paper discusses how it is important to understand and address family caregivers’ roles and their needs in order to have a high-performing LTSS system, because the family provides the lion’s share of LTSS to people who need help.