Family Caregiver Alliance
Volume XIV, Number 5, July 24, 2014

Honoring Innovation Everywhere      


Applications are now open for the 2014 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards that honor the efforts of communities across the country that develop supportive policies and programs for underserved communities, and promote creativity for caregivers and those they care for. Now in our seventh year of administering the award program for The Rosalinde and Arthur Gilbert Foundation, we are inspired by those who see the needs of family caregivers and respond with innovative ways to address the many and varied issues family caregivers face every day. Award winners receive $20,000 to use as they choose in their programs. You can find descriptions of the past 6 years of winning organizations and programs in our
Digital Scrapbook. (Included are several video clips showing a few of the programs in action.)

If you have a program or project you would like considered, apply now! If you know of a program or project that should apply, forward this message to them! Applications are online only, and the deadline is August 22, 2014 at 5pm.  


Kathleen Kelly, Executive Director

Family Caregiver Alliance, National Center on Caregiving

(San Francisco, CA)

State Legislation, Policy & Reports
Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare at the state level.

Bills Passed:

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Federal Legislation, Policy & Reports 

Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare across the United States.

International News

Articles on pending/proposed caregiving legislation, or current policies and reports on caregiving, healthcare around the world.   
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Research Reports & Journal Articles

Organizational reports and professional journal articles of interest surrounding caregiving and healthcare nationally and world-wide.

Conferences & Trainings

Upcoming trainings, educational conferences and speaker series on caregiving and related healthcare topics

1. SCAN Foundation:  2014 California LTSS Summit in Sacramento September 30, 2014
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Funding, Media & Miscellaneous 

Information and links related to funding and media and more...

FCA Research Registry
Current professional and graduate level Studies Seeking Participants:



STATE . . .

OH SB 43: Civil commitment/treatment of mentally ill-change laws

Amends the law for mental health involuntary holds requiring court intervention beyond existing requirement for danger to self and others, by adding a new requirement of "patient unlikely to adhere to prescribed treatment, or unable to meet basic needs." The bill also includes an express statutory option for courts to order assisted outpatient treatment. Advocates opposed to the bill claim the bill expands the definition of individuals that receive court intervention and involuntary commitment, and is not clear as to when the individual would no longer be under the court's control. 


CA AB 1552: Community-based adult services: adult day health care centers.
Bill would establish the Community-Based Adult Services (CBAS) program as a Medi-Cal benefit. The bill would require that CBAS providers be licensed as ADHC centers and certified by the California Department of Aging as CBAS providers who must meet specified licensing requirements and provide care in accordance with specified regulations. The bill would require that provisions be implemented only to the extent that federal financial participation is available.


NY A688: Tax Credit for the Purchase of Technology to Remotely Monitor Persons with Alzheimer's disease and/or Dementia.
When family members or care providers in the state of New York purchase technology for the purpose of delivering proper care through remote monitoring of someone diagnosed with Alzheimer's disease or dementia who lives with them, they may be eligible for a tax credit. The bill is noteworthy since it is one of the few that recognize the utility and cost of technology for providing in-home care.


MA 3231: An Act Regarding Discrimination in Caregiving.   

This bill amends current regulations by defining the following terms: family caregiver, family member, serious health condition, and adding family caregiver to several section of anti-discrimination law.  


IL 2636:  Limits on Medical Marijuana (passed legislature; to Governor for signature)
Patients with a physical diagnosis (Alzheimer's, Parkinson's, Epilepsy, spinal cord illnesses, cancer, and many others) may possess and use 2.5 ounces of marijuana every 14 days.  An order by a licensed physician is required and the marijuana must be from an intrastate source. Caregivers are allowed to transport and administer the marijuana. More than 2.5 ounces can be used every 14 days with a doctor's justification.  


CA: SB 1269 and 1238 Addresses Medicare Observation Status (see CMS Guide in Federal Reports)
Two California Bills have been introduced which would change how Medicare patients in California are billed for hospital care. Recent Medicare policy allows for up to three days of inpatient hospitalization to be considered observation status, which is not paid for by Medicare. Beneficiaries complain there is no difference in the level of inpatient care and services between observation status and admitted patient, and only become aware of their status when they receive a bill.  



will force hospitals to declare a patient either admitted or observation status within 24 hours, and is backed by the California Nurses Association. Hospitals would be required to obtain a special permit to admit patients to observation status.  

SB 1238

allows hospitals to go beyond status declaration limit of 24 hours, and is sponsored by Tenent Healthcare.  

NY: AARP - NY Winners and Losers 2014
AARP in New York is encouraged by initial steps taken by NY legislators to aid family caregivers by including a $5 million increase in non-Medicaid funding for elderly in-home services (AARP recommended $26 million to eliminate waiting lists for these services which assist family caregivers caring for elderly at home, and often spare taxpayers Medicaid expenses associated with caregiver burnout and turning to nursing homes as a care solution.) Another positive move for caregivers was the introduction of A9816/S7676 that insures that caregivers get pre-discharge training from hospitals to provide necessary care for loved ones at home. The subsidy for low-cost prescription drugs was also expanded to cover persons making up to $75,000 a year. Losers were utility customers seeking relief from high rates, and A7189B, which would have strengthened the rights of relatives who were not grandparents raising children whose parents are unable to.   


AARP: Rating States for Long-Term Services and Family Caregivers 
AARP's Public Policy Institute, The Commonwealth Fund and The SCAN Foundation joined to study how states vary in their provision of long-term services and supports (LTSS) to the elderly and disabled. Recently states have begun to improve LTSS, including home care, family caregiver supports, and nursing home care. This study notes that there is great disparity between the states, and even the top performing states have ample room for improvement. A scorecard ranks each state in 5 key areas; affordability and access, choice of provider and setting, family caregiver support, quality of care and life, and effective transitions. The report address several problems in nursing home care including the use of anti-psychotic drugs. The U.S. population appears to be aging faster than the pace of LTSS changes.  

Project RED: Revision in Transitional Care Incorporates More Robust Caregiver Assessment and Involvement in Care Transitions
A new chapter in the Project RED toolkit was developed jointly by the research group at Boston Medical Center/Boston University School of Medicine, which created Project RED, and staff from the United Hospital Fund to more formally involve and address the training and care needs of family caregivers into the care transitions model. It structures the process of working with family caregivers into five steps: identifying the family caregiver, assessing the family caregiver's needs, integrating the family caregiver's needs into the after-hospital care plan, sharing family caregiver information with the next setting of care, and providing telephone reinforcement of the discharge plan.

The new tool, "Understanding and Enhancing the Role of Family Caregivers in the Re-Engineered Discharge," is one of seven chapters in the Project RED toolkit and the first addition to the toolkit since its launch in 2007. The toolkit is free and can be downloaded at the URL listed below.

President's Proposed 2015 U.S. Budget

Analysis of the President's Proposed 2015 Budget shows promise in areas effecting family caregivers and their relatives needing assistance. The 2015 Budget strengthens the sustainability of Medicare by: Increasing the solvency of the hospital trust fund by at least 5 years by simplifying income related premiums while reducing Federal subsidy for higher income beneficiaries; increasing value-based incentive and purchasing; and reducing Part D prescription drug abuse risk. The budget would also move the deadline to close the Part D drug benefit donut hole to 2016 instead of the previous 2020 date, while developing new physician payment systems focused on improved patient outcomes and integrated care systems. States will pilot new elder abuse detection and reporting programs using $25 million in funds earmarked from the ACA. The budget also includes increased funding for Money Follows the Person Rebalancing Demonstration projects and earmarks $440 million in HUD Housing for Elderly programs that link affordable housing and caregiving.


DOL: Same Sex Spouses Eligible for FMLA to Care for Spouse
(New Proposal Would Make Same-Sex Partners Eligible Under Family And Medical Leave Act)

The Labor Department will issue a proposed rule Friday stating that any employee is eligible for leave to care for a same-sex spouse under the Family and Medical Leave Act, according to White House officials, regardless of whether they live in a state that recognizes their marital status. Due to FMLA's scope, the Labor Department rule would apply only to private-sector employees, but administration officials said the U.S. Office of Personnel Management would issue its own proposal Friday extending the same benefits to federal employees.


NIH:  Calls for $4.5 billion Investment to Fund Brain Research
A federal report calls for $4.5 billion in funding for brain research over the next 12 years. The long-term scientific vision of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative was presented today to National Institutes of Health Director Francis S. Collins, M.D who noted "How the brain works and gives rise to our mental and intellectual lives will be the most exciting and challenging area of science in the 21st century." New technologies, treatments and cures are expected to come from this research. A plan for a sustained commitment of $4.5 billing in federal funding over the next 10 years beginning in 2016 is part of the plan. NIH plans to grant $40 million in 2014 for brain research, and President Obama has requested $100 million for the NIH component in 2015.


AARP Urges Reauthorize Older Americans Act Now
Millions of vulnerable seniors rely on the OAA to provide much needed health services, senior nutrition programs, home and community based services, preventative health programs, transportation services, and caregiver support services among others that directly aid family caregivers. The OAA is cost effective by providing a safety net that prevents low-income seniors from entering Medicaid funded nursing homes. Although the current OAA expired in 2011, Congress has been unable to agree on funding to renew the act. AARP urges the House and Senate to reauthorize the OAA immediately to provide security in funding the needs of at risk seniors and their caregivers.


Google Glass Doubles MD Time with Patients
Some doctors are now using Google Glasses to record a patient visit or surgery with the patient's permission. Videos of the visit are stored as a patient's electronic medical record or in the cloud using services such as Box, a cloud-based storage and collaboration service. Freed from having to continually enter notes and comments into a patient's chart, doctors are able to spend more time with patients, or to increase the number of patients they see. Google has held events in its San Francisco offices targeting care providers, hospitals administrators and medical-tech entrepreneurs to discuss how to bring these wearable computers into practices. Many startups are developing software to expand the medical uses of Google Glass.


CMS: Valuable Guide for Medicare Recipients to Determine if they are Inpatients or 'Observation'
Many ill Medicare beneficiaries who have spent one or more nights in a hospital are surprised to find that Medicare considers their stay "observation" instead of an inpatient stay. Your hospital status (observation vs. admission) determines how much you pay for hospital services such as x-rays, drugs, and your hospital nursing and medical care. It will also affect whether Medicare will pay for a skilled nursing facility after discharge from the hospital. This guide from the Centers for Medicare and Medicaid Services (CMS), encourages patients to ask their physician which status they have been given when they enter the hospital and it explains the significance of each.


Canada: National Employers for Caregivers Plan Committee Formed
Alice Wong, the Canadian Minister of State for Seniors, announced on June 23rd, a Canadian Employers for Caregivers Plan that aims to find ways to accommodate workers who are caregivers. "There are currently 6.1 million employed Canadians who are providing to a family member or friend," Ms. Wong will say in a news release. "Our government will work with employers through the Canadian Employers for Caregivers Plan to help identify cost-effective workplace solutions to support employed caregivers, helping them to achieve a better balance of work and caring responsibilities."


Quebec Introduces Right to Die Legislation
Bill 52, which was recently introduced in Quebec, will allow state patients to request from a physician the means to end their life on the basis of unbearable physical or psychological suffering. The patient must be deemed mentally sound at the time of the request. Critics are concerned safeguards will not be upheld and that it conflicts with national laws. The federal government has said it could challenge the legality of the Quebec legislation, the Canadian Press reports, noting assisted suicide and euthanasia are illegal under Canadian Criminal Code.
RAND Corp: Reports on What to do About Dementia
Currently almost 4 million people in the United States over the age of 70 have dementia. That number will grow to almost 14 million people over the age of 65 with Alzheimer's disease, the most common form of dementia, by 2050. Alzheimer's is currently the fifth leading cause of death for people over 65, and is the only cause of mortality in the top ten in the U.S. that has no cure, preventative measures or ways to slow its progress. RAND researchers surveyed stakeholders on policy options for dementia and long term services and support (LTSS), in an effort to assist decision makers improve LTSS delivery systems for dementia. Rand researchers stress the necessity of improving care for afflicted persons and their families by: establishing residential dementia centers-of-excellent models; increase financial incentives to bundle home, community and institutional services; encourage quality measures to ensure that standardized dementia assessment tools are used for those with dementia and their caregivers; identify those with dementia jointly with caregivers; minimize care  transitions across settings; create and distribute best practices for training formal caregivers, and provide specialized geriatric training of formal caregivers.



JAMA: Exercise for elderly reduces disability rate

Reduced mobility, often found in older adults, contributes to morbidity, disability, hospitalization and death. Researchers developed the Life Intervention and Independence for Elders (LIFE), a clinical randomized trial, to examine where physical activity can reduce the risk of mobility disability. The study group consisted of a volunteer sample of 1635 sedentary men and women between the ages of 70 and 89 years, from 8 urban and rural communities at 8 centers in the United States. 818 participants were randomized to a structured moderate exercise program conducted at a center twice a week and at home 3-4 times a week. Results found that the exercise group had lower rates of major mobility disability and persistent mobility disability and had lower rates of serious adverse events than the health education group.

Analgesic use, pain and daytime sedation in people with and without dementia in aged care facilities
This study plans to investigate if administration of pain medication and daytime sedation differs between patients with dementia and those without in Australian residential aged care facilities (RACF), and their clinical and diagnostic relevance. A cross-sectional study of 300 permanent residents with and without dementia in 10 RACFs in South Australia will have trained study nurses administer dementia-specific assessments of patient- and clinician-observed pain, sedation and other outcomes. Medication data will be from the nurses mediation administration record, and multinomial logistic regression will be used to determine statistically significant odds ratios. Independent variables include quality of life, patient satisfaction, attitudes towards medication, ADLs, nutritional status, and behavioral and psychological symptoms. This study is intended to develop strategies that will improve quality of life for people with dementia.

Johns Hopkins: More Research on Caregivers needed in Low Income Countries Needed

Johns Hopkins researchers conducted a meta-analysis of caregiving in low-and middle-income countries (LMICs). The more than a billion people worldwide who have disabilities are receiving increasing attention, yet little has been quantified regarding the burden of caring for the disabled- especially in LMICs. Electronically available literature published before March 2012 was reviewed in the following categories: psychological, social, financial and physical burden of caregiving as well as caregiver demographics and activities.  Existing evidence is clear that those in the caregiving role suffer adverse consequences in multiple areas- especially those in LMICs. Further research in the area is necessary.


NIH: Stigma towards people with Alzheimer's disease and Anti-Stigma Interventions.
A research study to evaluate if stigmatized reactions develop from the label of "Alzheimer's disease" or from the disease's observable impairments--and if the reaction is modified by the condition's prognosis. Data was collected using a web-based experiment of 789 adult members of the US population ranging in age from 18-90 years old (median age=49) that were randomized to read one of 9 vignettes of mild stage dementia. Three different disease labels were attached to the vignettes (Alzheimer's vs. traumatic brain injury vs. no label), and three types of stigma reactions were assessed: stereotypes, emotions and behaviors. The greatest level of stigma corresponded to prognosis of the impairment rather than the label "Alzheimer's."

Projecting the Local Burden of Alzheimer's Disease using a Population-Based Model
Currently Alzheimer disease (AD) is the fifth leading cause of death for adults over 65, and requires constant supervision and assistance with ADLs and IADL's for many years. The number of adults with Alzheimer's disease is expected to rise requiring more supportive services and long-term care providers. Projections were made through 2030 using AD prevalence data, estimates of senior populations and long term care facility data.
SCAN Foundation: 2014 California LTSS Summit in Sacramento September 30, 2014
Leaders in policy and implementation of long-term care services in California and the United states meet to discuss opportunities for supporting family caregivers, financing long-term care, transitions in care, working with the media, leading change, and other topics. Registration is open now.
Applications Now Open for the 2014 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards
With continuing support from The Rosalinde and Arthur Gilbert Foundation, Family Caregiver Alliance (FCA) is pleased to oversee the annual Rosalinde Gilbert Innovations in Alzheimer's disease Caregiving Legacy Awards program in its seventh year. Three awards of $20,000 each will be awarded to government agencies or universities, and nonprofit organizations that have a program or project that addresses a need of family/informal caregivers of adults with Alzheimer's disease and dementia. Open to organizations working within the continental U.S. One award will be granted in each of the following areas*: creative expression, diverse communities, and policy and advocacy. Applications are online only, and the deadline is August 22, 2014 at 5pm.
[*Provided a sufficient number of competitive entries are submitted in each category.]  

Health Affairs Journal: Call for Papers on Care for Older Adults
The journal Health Affairs is seeking articles on older adults, and specifically regarding the care and management of multiple chronic conditions among this population. We are interested in work that spans the full range of care settings, including primary care and specialty practices, hospitals, nursing homes and other long-term care settings. We are grateful to The John A. Hartford Foundation for providing support for our ongoing coverage of these topics. There is no deadline for submissions; papers on these topics will be considered on an ongoing basis and considered for publication through 2015. For more information, contact Health Affairs executive editor, Don Metz:[email protected].


Wish of a Lifetime: Helping Seniors fulfill a long time dream

Wish of a Lifetime ( can help make a life-long wish of a person over 65 come true. The senior, a friend or family member can apply to have a wish fulfilled. Recipients must be at least 65 years of age, a legal resident or citizen of the U.S. who have not been convicted of a felony, and able to obtain approval from a doctor if necessary.

Recent Grants Made in Various Areas of Alzheimer's disease
News on Grants recently awarded for on Caregiving, Information Dissemination and Public Policy of Alzheimer's Disease.
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