Family Caregiver Alliance
Volume IV, Number 2, March 10th, 2014

Dear Readers:       

Come Help Us Celebrate Innovations in Caregiving by joining us at the Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards Reception at the American Society on Aging Conference in San Diego. Join us on March 13th from 6:30 to 8 pm to honor the award winners from the Alzheimer's Poetry Project in New Mexico, the Alzheimer's Specific Services in the Everglades Agricultural Area in Florida and the documentary, The Genius of Marian, produced by WeOwnTV in San Francisco. Food, drink and creative frivolity will be served! Location: Coronado DE Room at the Manchester Grand Hyatt Hotel, 1 Market Place in San Diego.

Kathleen Kelly, Executive Director
Family Caregiver Alliance, National Center on Caregiving

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.

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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, summits and speaker series on caregiving and related healthcare topics

2013 Rosalinde Gilbert Innovations in Alzheimer's Disease Awards Reception

Aging in America: 2014 Annual Conference of the American Society on Aging

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FCA's Research Registry

Research and clinical trials including graduate student research projects that help further the field of caregiver research and advocacy

STATE . . .


IL: SB 3378 -Ensures Consistency in HCBS Services Regardless of Program or Funding Source

This bill amends the Illinois Act on the Aging. In provisions concerning the Community Care Program, provides that in regard to reforms of service delivery and changes to the State's home and community based services waiver, the Community Care Program shall ensure the availability of services to clients of the program, including, but not limited to: assistance in the home, adult day services, emergency home response, community reintegration services, and medication management. Provides that these services shall be made available to clients that demonstrate a need for them regardless of the model of service delivery or federal waiver under which their care is delivered.    


HI: SB 105   Hawaii is the Latest State to Introduce Legislation Preventing Fall Related Disability, Death and Hospitalizations. 

SB 105 Establishes and appropriates funds for a Fall Prevention and Early Detection Program within the Department of Health's Emergency Medical Services Branch.  Falls are estimated to result in $65,000,000 in hospital costs, as well as 44% of fatal injuries to the elderly.  States such as CA, FL, IL, MA, OR, and TX have enacted legislation to reduce fall related morbidly and mortality. 


CT: State Moves to Fully Fund the Elderly Nutrition Program, and Expand Income Eligibility for HCBS Services

SB 161: Ensures adequate nutrition for vulnerable senior citizens by fully funding the elderly nutrition program.  It appropriates three million, seven hundred thousand dollars to the Department of Social Services from the General Fund for the fiscal year ending June 30, 2015.   

SB163:  Amends general statutes to expand income eligibility, and decrease the percentage of income for the elderly and disabled participating in the Connecticut home care program. This will provide more senior citizens with the opportunity to receive care at home rather than in an institution. 


CA:  Senate Hearings on Assisted living Center Deaths and Injuries- Lack of State Oversight
Investigative reporting in 2013 has precipitated a spate of legislative hearings in the California Legislature during the month of February. On February 11, a joint hearing of the Assembly and Senate Human Services committees was held in the morning; in the afternoon a second hearing was held by the state Senate committees on Health and Business, Professions and Economic Development.  The agenda included numerous complaints of abuse, neglect and death at assisted living facilities throughout the state, as well as the lack of oversight and penalties from the Department of Social Services which licenses assisted-living facilities.  Witnesses at the hearings described numerous problems such as patient abuse leading to death, inadequately trained employees, and employees being discouraged from reporting medical mistakes, insufficient staffing, poor oversight of staff and other issues.  Currently DSS does not track medical errors, and while hundreds of facilities have unpaid fines due to safety violations they remain licensed and continue to operate.


President's Budget Has Paid Family Leave Investments Expand to Other States
The President's Budget, released on March 4th, included $105 million to support paid family leave, creating a paid family leave fund and technical assistance component for the states to implement paid family leave for employees at the state level. California, New Jersey and Rhode Island are the only states that have operational paid family leave programs. The President has included similar measures in previous years' budgets.  Conventional wisdom in DC is that a continuing resolution is in store for next year's budget given mid-term elections.
S 1950:  Veterans Bill  Provides Comprehensive Benefits and Expands Caregiver Support

The Comprehensive Veterans Health and Benefits and Military Retirement Pay Restoration Act of 2014 will amend federal veterans provisions to revise or add provisions concerning medical services and other benefits provided to veterans and/or their dependents through the Department of Veterans Affairs.  Some of the new services include preventative health, TBI care, mental health and employment training, as well as enhanced caregiver supports. Section 304 of the bill extends the VA's Caregiver Program to all veterans injured in the line of duty regardless of the era, and Section 342 calls for the establishment of a program of supportive services for family members and caregivers of veterans suffering from mental illness. Many other expansions of benefits are included in the bill.

Update: On February 27, 2014, the Senate blocked the vote on S 1950.   


AARP Blog Series On Key Recent Changes in CMS Rules and Guidance
A number of final rule changes and guidance in Home and Community-Based Services has provided states with greater flexibility with waiver administration, clarified definition of a home setting and included family/informal caregivers in care planning if appropriate. This is good news to advocates, persons needing assistance to remain in the community, and their family/informal support networks. An AARP blog series examines three key changes recently announced by CMS.

The New Federal Rule on Home- and Community-Based Services: All Eyes on the States:
There's No Place Like Home - But How Do You Define It?:
Setting the Pace for Identifying Family Caregiver Needs in Home- and Community-Based Services:


HHS Office of Inspector General Study on Preventable Adverse Events in SNFs Among Medicare Beneficiaries    

A study released late February 2014 on identification of adverse events and the extent to which they are preventable in post-acute care provided in skilled nursing facilities was released recently. The study found that an estimated 22% of Medicare recipients experienced adverse events and an additional 11% experienced temporary harm during stays. The cost of hospital treatment resulting from these SNF stays is estimated at 2.8 billion in 2011. 


Accelerated Medicines Partnership (AMP): NIH, Pharmaceutical Industry, and Non-Profits Join Forces to Find New Treatments  

The National Institutes of Health, 10 biopharmaceutical companies and several nonprofit organizations created an unprecedented partnership to identify the most promising biological targets of disease for new diagnostics and drug development. The Accelerating Medicines Partnership (AMP) aims to distinguish biological targets of disease most likely to respond to new therapies and characterize biological indicators of disease, known as biomarkers. AMP partners will invest more than $230 million over five years in the first projects, which focus on Alzheimer's disease, type 2 diabetes, and the autoimmune disorders rheumatoid arthritis and systemic lupus erythematosus (lupus), with the goal of finding more effective treatment of these diseases.


U.S. Consumer Financial Protection Bureau:  Free Guides on "Managing Someone Else's Money"
The CFPB Office for Older Americans recently released four easy-to-understand booklets to assist the millions of Americans who are managing money or property for family or friends unable to pay bills or manage their finances.  There is one booklet for each of the following: those with powers of attorney, court-appointed guardians, trustees, and recipients of government benefits such as Social Security and Veteran's Benefits. Each of the guides is designed to clearly walk those managing others' money through their duties, help them be alert to scams and financial exploitation, and know that to do if their loved one is a victim. They also provide resources for additional assistance. 


Healthcare Biggest Target of Identity Theft

Medical identity theft, defined as fraudulently obtaining personal data such as name, Social Security number or health insurance numbers to illegally gain health services, insurance reimbursement or prescription drugs, is the largest cause of identity thefts in the U.S. A recent report by the Identity Theft Resource Center claims that 43% of identity thefts in the US were medical-related, 34% were related to retailers and technology companies, and 3.7% were experienced by financial institutions. Thieves usually gain information by hacking into computer networks or stealing laptop computers. It's estimated that up to 67.7 million individuals' health records have been compromised since the Department of Health and Human Services started tracking data breaches in 2009. One legal expert noted that some providers do not report breaches, so the number is likely higher--and that patient records can sell from between $50- $500 each.   


From National Senior Citizens Law Center -- Best Practices in Assisted Living: Considering Potential Reforms for California
This 53-page report reviews assisted living laws of California and 11 other states. California is one of only 4 states reviewed that have a single level of assisted living care licensure (others are Connecticut, Kansas, and Washington).  The remaining 7 states have licensing categories for assisted-living with dementia, and 4 of those states offer differing assisted living licensing programs to correspond with differing levels of required care. California is noted for its low standards for quality of care, and the fact that it has been slow to put laws in place that reflect the dramatic increase in residents' care needs over the last 15 years.  The report makes many recommendations for improving quality of assisted living care in all states, at all levels--staff, residents, locally and statewide.  

International Facts on Senior Caregivers 
Worldwide there are approximately 600 million persons aged 60 years and over; this total will double within the next 10 years. In some cultures the elderly are primary caregivers of the young,such as in Africa where millions of adult AIDS patients are cared for at home by their parents. These African grandparents are often left to care for the 14 million orphaned children of parents who have died of AIDS. In Spain, a majority of care for the sick and elderly is done by seniors. A study of Spanish caregivers noted that caregivers age 30-49 average 50 minutes of care per day, while those age 75-84 average over 5 hours of daily care.  In India, where there is a high proportion of widows with no pension, it is estimated that 56% are abused by their sons and 24% are abused by daughters-in-law.  
Pew Study: A Global Perspective on Attitudes About Aging 
This Pew study reports on the findings of an extensive survey of 22,425 respondents in 21 countries conducted from March to April 2013 to measure public opinion on a variety of challenges faced by aging persons and their countries. The report also examines trends in the aging of the global population, the U.S. population, and the populations in 22 other selected countries. Japan, China, South Korea and most countries in Europe will be challenged by greater numbers of elderly supported by a shrinking workforce. The elderly in these countries are more concerned with how they will fare in the future. India and most African countries have a more favorable balance of young workers and the elderly, a potentially advantageous trend for economic growth.  When asked if aging was a problem in their country respondents in the United States, Indonesia and Egypt expressed the least concern- while those in Japan, South Korea, China, Germany, and Spain expressed a high level of concern. 
Predicting those at Risk For Elder Abuse in Community Living Situations   
An elder abuse vulnerability index for community dwelling seniors was developed using Chicago Health and Aging Project (CHAP) data. Information on 8,175 participants over the age of 65, of whom 213 were reported to social services as victims of elder abuse, was used to develop a 9 item vulnerability index to predict likelihood of being abused (>80 years old, female, black, 3 medical conditions, difficulty with one flight of stairs, low score on mini-mental exam, low score on depression scale, fewer than 2 friends, income<$15,000). Odds ratios were developed, showing for every item in the index there was twice the risk of being reported as abused. Elder abuse was 18 to 27 times more likely to occur in those with 5 or more index items. Logistic regression models were used to determine accuracy of the index items and risk of abuse, and all results were statistically significant.
Annals of Behavioral Medicine: Caregiver Stress Studied using Female Twin Sets 
Using 1228 female twins (188 of whom were caregivers), researchers at the University of Washington examined the origins of different types of psychological distress among caregivers.  Findings included: depression and perceived mental health have strong associations with genetic inheritance, anxiety is directly related to caregiving, while perceived stress is more likely to be a reflection of the type of environment a person grows up in.  Response to distress also depends on a person's resources such as coping, social supports and income. The author notes that as the number of people with Alzheimer's will almost triple from 2008 to 2030 many more people will become caregivers, so it's important to target treatments to caregivers at the highest risk.   


Family Matters: Effects of Birth Order, Culture, and Family Dynamics on Surrogate Decision-Making

Researchers in New York, Chicago and San Francisco held focus groups in which ethnically diverse participants discussed end-of-life or other serious medical decisions for others (surrogate decision-making).  The study found that in all cultures, firstborn children play critical roles as surrogate decision makers, leading to increased feelings of emotional stress, and loneliness. The 69 participants ranged in age from 55-74, spoke Spanish or English, and were selected from county and Veteran's Affairs hospitals, senior centers, and cancer support groups. Clinicians should be aware of stress on firstborns and help facilitate communication between the surrogate, patient and extended family. 


2013 Rosalinde Gilbert Innovations in Alzheimer's Disease Awards Reception

The 2013 Rosalinde Gilbert Innovations in Alzheimer's Disease Award winners will be honored at a reception at the American Society on Aging Annual Conference on March 13th and you're invited! Hosted by Family Caregiver Alliance, the reception will showcase the good works of the Alzheimer's Poetry Project, The Genius of Marian (documentary) and the Alzheimer Specific Services for the Everglades Agricultural Area. The reception will be held in the Coronado Room DE at the Manchester Grand Hyatt, San Diego from 6:30 to 8 pm. Join us for food, fun and celebration of the innovative projects and communities across the country!     

  • For more information call 800.445.8106 or email at     
Aging in America: 2014 Annual Conference of the American Society on Aging  

Aging in America: 2014 Annual Conference of the American Society on Aging is slated for March 11th - 15th in San Diego, CA. The ASA Conference is the largest multidisciplinary conference on aging in the nation. Over 600 sessions including interactive workshops, panels, poster sessions, and round tables will be offered.  

Transforming Care for Elders Through Creative Engagement June 23-25, 2014
The Osher Lifelong Learning Institute at the University of Wisconsin, Madison (UWM) joins with UWM's Peck School of the Arts Department of Theatre and several artists' groups for continuing education in cross-generational learning and play. The goal is to promote "transformative care for elders" and is recommended for students, artists, caregivers and other interested parties.
FCA Research Registry . . .
Exercise and Memory Training Study
Study participants needed for exercise and memory training in older veterans with memory problems.
Are you a Veteran and need to start exercising? 
Do you have problems with your memory? 
Are you 50 or older? 
If so, we'd like to hear from you! 
Eligible Veterans will receive compensation, free memory training and exercise training sessions. This study will take place at the VA Palo Alto. To learn more, please contact our office at 650-493-5000 Ext.65992.

Funded by the Department of Defense (DOD) Telemedicine and Advanced Technology Research Center (TATRC).

Volunteer Opportunity! 
From now until May 20th, a positive aging research lab at the University of San Francisco is looking for volunteers over the age of 60. The study will focus on different aspects of aging and elder mistreatment. All research will take place at the University of San Francisco, and will take approximately 2 hours of your time. Parking is free, and all volunteers will receive $30 cash for participating. Please contact Marian Liu at (415) 422- 2617 for an appointment or information.
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