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Vol. 16, No. 4
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May 2, 2016
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Elder Abuse Victims Act of 2016 (H.R. 4963)
- This bill establishes a program to encourage States and other qualified entities to better protect, serve, and advance the rights of victims of elder abuse and exploitation. These entities would be responsible for creating jobs designed to hold offenders accountable; to enhance the capacity of the justice system to investigate, pursue, and prosecute elder abuse cases; and to assure data collection, research, and evaluation to promote the efficacy and efficiency of the aforementioned activities.
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Elder Protection and Abuse Prevention Act (S. 2747)
- This bill amends the Older Americans Act of 1965 to authorize Federal assistance to State adult protective services programs.
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Older Americans Act Reauthorization Act of 2015 (S. 192)
- This bill amends and reauthorizes the Older Americans Act (OAA) of 1965, which establishes services and protections for Americans above the age of 60. The OAA funds caregiver supports, nutritional, and health services for older Americans, as well as for ombudsman programs to protect elders from abuse or negligence within these services.
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Palliative Care and Hospice Education and Training Act (S. 2748)
- This bill amends the Public Health Service Act to increase the number of permanent faculty in palliative care at accredited allopathic and osteopathic medical schools, nursing schools, social work schools, and other programs, including physician assistant education programs. Its goal is to promote education and research in palliative care and hospice, and to support the development of faculty careers in academic palliative medicine.
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An Act Relating to the Discharge of Patients from Hospitals and to the Caregivers of These Patients (S.B. 72)
- This bill amends existing state law regulating hospitals to include new sections regarding discharge procedures. In particular, the new text requires that hospitals, prior to discharging a patient, assess the patient's ability for self-care after discharge. The hospital is also responsible for providing care transition planning resources to the patient and their designated caregiver, including any necessary instruction and training for the caregiver to perform medical and nursing aftercare.
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Alzheimer's Advocacy Day (H.R. 1145)
- This resolution establishes April 14th as the annual Alzheimer's Association Advocacy Day in the state of Illinois.
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Caregivers Task Force (H.C. 100)
- This resolution commends and supports the Caregivers Task Force for providing the educational resources and skills necessary to provide older adults and individuals with special needs the appropriate and adequate level of care.
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Appropriate Funds/Dementia Caregiver Programs (S.B. 735)
- This bill appropriates funds to the Department of Health and Human Services (HHS) to support the Caregiver Alternatives to Running on Empty project and the No Wrong Door to Accessing Benefits initiative. Using these funds, HHS would also be expected to explore and report on possible expansion of North Carolina's Medicaid home and community-based services waiver programs.
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AARP Pennsylvania Hails Governor's CARE Act Signature
- This PR Newswire press release announces the passage of the Caregiver Advise, Record, Enable (CARE) Act in Pennsylvania, the 23rd state to approve similar legislation designed to help family caregivers. Under the CARE Act, more than 1.6 million family caregivers across the state will receive critical assistance to help their loved ones remain at home. The law will help control health care expenses, reduce costly hospital readmissions, and trips to the emergency room by ensuring family caregivers receive the information and knowledge they need to care for their loved ones at home.
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Distance Caregiving a Family Member with Cancer: A Review of the Literature on Distance Caregiving and Recommendations for Future Research
- This recent review of the existing medical literature on distance caregiving, published in the World Journal of Clinical Oncology, examines common findings of prior research and new opportunities for research about distance caregiving. The research suggests that challenges of distance caregiving are particularly evident when the caregiver provides care for a loved one with cancer, in part because family-centered care is critical for quality cancer care. Based on their review of the existing literature, the researchers recommend that future studies be conducted to better understand the benefits and burdens associated with distance caregiving, and to develop interventions to address these burdens.
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Gender Differences in Caregiving Among Family Caregivers of People with Mental Illnesses
- Research recently published in the World Journal of Psychiatry reviews the body of literature on gender differences among family caregivers, ranging from the different pressures men and women may face to take on the caregiving role to gendered variations in caregiving stress and coping strategies. The research found that although women still constitute the majority of caregivers of older adults and those with mental or physical disabilities, the proportion of men taking on the caregiving role is steadily increasing. Additionally, although a large body of evidence seems to indicate that women suffer more from the negative consequences of providing care, gender differences in caregiving have not been consistently or conclusively documented--more research is needed to explore these outcomes and their causes.
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Livability For All: The 2016 AARP Age-Friendly Community Survey
- This series of reports from AARP investigates the quality of various communities by their age-friendliness and livability for older adults. Using an eight-point evaluative system that captures the age-friendliness of a given community, researchers issued findings to help policymakers establish a baseline with regards to older adults being able to age in place and to identify needs and priority areas of focus for improvement. Some key findings include: few long-time residents of their community intent to move when they are no longer working; when residents do decide to move, most report tyring to find a home that helps them live independently as they age; most respondents report the most important community feature for age-friendly living relates to health and wellness, and to transportation.
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Pitt Report Suggests Urgent Need for Policies to Support Family Caregivers of Aging and Disabled Americans
- This release from PRWeb shares news of a recent report published by the Pitt Health Policy Institute that finds that state and federal policies do not adequately address the health and economic risks of caregivers. Researchers examined the impact of federal and state policy designs on family caregivers' finances, employment, and access to services and supports, surveying programs such as Social Security, Medicaid, and the Family and Medical Leave Act, in addition to state policies on tax credits and paid sick leave. They found that although caregivers provide support to over 90% of individuals receiving care at home, they lack access to financial policies, flexible employment, and social services needed to support them in their critical role. Furthermore, even though there is evidence of positive impact of programs that deliver these supports--such as respite programs--they have not expanded to meet growing demand.
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A New Spin on Senior Living
- This piece from the The New York Times profiles the growing popularity of "affinity group communities" among retirement and assisted living housing options for American seniors. These facilities build community among its residents by leveraging their shared identities--examples of these retirement communities include those for military officers, members of religious groups, for LGBTQ individuals, for the alumni of particular colleges and universities, and even for specific ethnic groups. Seniors living in these facilities report greater feelings of community and connection in these spaces than in standard retirement or assisted living.
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Big Financial Costs are Part of Alzheimer's Toll on Families
- This NPR article reviews findings from a recent report published by the Alzheimer's Association on the financial burden friends and families bear when they care for someone with dementia. The report, based on a survey of more than 3,500 Americans contributing to the care of someone with dementia, found that the cost of paying for care often put people in situations where they had to make difficult choices about which basic needs they would continue to prioritize and which they would forego--things like food, medical care, and transportation. Additionally, the report found that over one-third of those surveyed had to reduce hours or quit their jobs to care for a loved one with dementia, and nearly half had to dip into their savings or retirement funds to cover the costs of care. These findings raise important questions about how realistic it is to expect every family to absorb the cost of long-term care, and how we might develop societal solutions to funding care for vulnerable seniors.
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How Getting High Made Me a Better Caregiver
- In this The New York Times op-ed, Tom Huth, a 74-year old caregiver for his wife--who has been living with Parkinson's disease for two decades--shares his experience using marijuana as a tool to prevent burnout as his wife's sole caregiver. "I am charting my own course," he writes, "as a stoner helpmate: chronically chipper, resilient on demand, fully rechargeable and unmatched at keeping myself amused for long stretches of downtime." Huth presents a provocative case for the importance of self-care: as a caregiver who shoulders the burden of caring for his wife--and of performing every other responsibility in their shared home unaided--he has identified a resource that helps to refresh and inspire him, and to provide better, more lively care for his wife.
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Superheroes of Caregiving Need Better Support
- Terry Fulmer, president of the John A. Hartford Foundation (an organization dedicated to improving the care of older adults), makes a case for improving access to supportive programs and resources for family caregivers in this Forbes opinion piece. She argues that, among other services, caregivers require better transitions of care when their loved ones move between the hospital, nursing facilities, and family homes; an organized network of social services such as transportation, counseling, and housing options; and, more robust adult day care and respite programming. With such resources at hand, family caregivers can better offset the financial, and the health costs of providing valuable, but unpaid, care to their aging loved ones.
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AARP: 71 Percent of Caregivers Want to Use Caregiver-Focused Technology
- This MobiHealthNews article discusses the results of a recent AARP study on caregiver technology utilization. According to the study, the majority of caregivers are likely to use technologies that support caregiving that are currently available on the market, and while 71% of caregivers are interested in using caregiver-focused technology, just seven percent have used these tools. Caregivers report that the tools they use most help them with scheduling, organizing, and refilling medication. Some barriers to adoption of these technologies are cost and complexity.
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Bringing Technology Home
- This post from HomeCare Magazine explains that seniors are increasingly dependent on technology. Many observers are now realizing that seniors are actually good at and comfortable with using technology--and older adults do not shy away from technologies that improve their social lives, increase family and community engagement, and help them manage their lives and the services they seek. In particular, seniors are seeking out technologies oriented to self-focused health care management with two main goals in mind: (1) they want to easily and unobtrusively assess their current health status through monitoring, and (2) they want a unified resource that connects them easily, immediately, and constantly with their caregivers, care plan, medication schedules, family, friends, and local community and support services.
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Online Comfort for Real-World Cancer Can Be Surprisingly Sweet
- This profile from NPR explores the story of Felicia Friesema and her husband, Steve Julian--who is living with a diagnosis of terminal brain cancer. Friesema had kept a journal of her experience providing care to her husband on Caring Bridge, a website designed to help families and friends of someone who is ill give updates and get them, and offer and receive encouragement. In addition to using the site to communicate medical details clearly and efficiently to friends and family, Friesema is able to use the blog to process what is happening in her world, and to connect with others who have had similar experiences, or wish to express their support. In addition to offering notes of encouragement, people have also reached out to help Friesema run errands or complete tasks around the house--with the help of the site, she has been able to develop a social network in the truest sense.
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Alzheimer's and Dementia Care Relief Grant Program
- Hilarity for Charity and the Home Instead Senior Care network are collaborating to award home care grants to those providing care to their loved ones living with Alzheimer's disease or other dementias.
- The grants will be awarded across the United States and Canada, and are meant to contribute to the provision of exceptional home care to families affected by this disease, and to give these families support and rest.
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Seed Grants Available for the Start-up of Dementia Day Programs
- The Brookdale Foundation Group has issued a Request For Proposals (RFP) for the start-up of new social model Group Respite or Early Memory Loss (EML) programs for people with Alzheimer's disease and related dementias.
- In October 2016, The Foundation will be awarding up to 15 seed grants for the development of dementia-specific Group Respite programs or specialized programs for people with EML. The grants are $10,000 for the first year with an opportunity for a second tier grant of $5,000. Any 501(c)(3) or equivalent not-for-profit service agency wishing to develop a social model day program for Alzheimer's families is invited to apply. Proposals are due at The Brookdale Foundation Group office in New Jersey on Thursday, July 7, 2016. More information can be obtained by visiting www.brookdalefoundation.org.
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FAMILY CAREGIVER ALLIANCE ANNOUNCEMENTS
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FCA Call for Caregiver Stories for the News Media
- FCA often receives requests from the news media seeking family caregivers served by FCA willing to be interviewed about their caregiving experience and how FCA has helped them.
- If you would like to share your caregiving stories and how FCA has helped you, please complete the online form to be added to the list of FCA's caregiver media ambassadors.
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FCA To Release Updated Caregiver Statistics Fact Sheet in Mid-May
- The Caregivers Statistics Fact Sheet is comprised of three parts: Caregiver Statistics: Demographics (now viewable), Caregiver Statistics: Work and Caregiving, and Caregiver Statistics: Health, Technology, and Caregiving Resources. All parts will be available in mid-May 2016.
- FCA Fact Sheets are detailed informational handouts on health, legal, and a variety of other topics that relate to family caregivers.
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Put Your Family Caregiving on the Map (from the Atlas of Caregiving Pilot)
- The Atlas of Caregiving Pilot offers information on how caregivers can create their own care map.
- A care map is a helpful way to visually represent all the people and services involved in a family caregiving situation.
- Once completed, the map will show all the individuals who are providing care and the relationships between them.
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COMMUNITY-BASED ORGANIZATIONS (CBOs)
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Resources for CBOs: The SCAN Foundation Linkage Lab Initiative
- The SCAN Foundation, through its Linkage Lab Initiative, offers a suite of resources for CBOs seeking partnerships with the health care sector. Resources include the following:
- Case studies from the first cohort of Linkage Lab grantees, which includes information about their key objectives and strategies, successes, challenges, and lessons learned.
- Free online learning modules for CBOs to build leadership and management capacity.
- Perspectives from Dr. Bruce Chernof on the importance of forming effective health care/CBO partnerships.
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The Community Research Center for Senior Health (CRC-SH) Offers a New Resource in the Arena of Evidence Based Programs (EBPs)
- CRC-SH has developed a free web-based toolkit to guide CBOs through the selection, implementation, and evaluation of EBPs to better promote older adult health and well-being.
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FCA/NCC RESEARCH REGISTRY
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NOTE: All FCA/NCC Caregiving Policy Digest Research Registry listings are displayed in the manner they were received by FCA/NCC.
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FURTHER INFORMATION ON CLINICAL STUDIES/TRIALS
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Copyright © 2016 Family Caregiver Alliance | National Center on Caregiving.
All Rights Reserved.
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