Family Caregiver Alliance
Volume XIII, Number 8, September 12th, 2013

In Honor of World Alzheimer's Month 2013 . . .     


We are highlighting two other organizations' efforts to help fund research and find a cure for Alzheimer's disease:

  • Alzheimer's Association's Walk to End Alzheimer's. Find a Walk near you, join up with an organization's walking team (like the FCA Team in San Francisco), or if you're unable to walk, think about volunteering at the event or donating to the cause.  
  • Banner Alzheimer's Institute (BAI)'s Alzheimer's Prevention Registry -  This Registry was created to advance Alzheimer's prevention research through education, advocacy and study participation. With a goal of enrolling 250,000 people in the United States, the registry supports participation in a variety of community-based prevention studies by creating a pool of interested individuals from which researchers can identify potential participants. Read more below . . .  


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.

1. OR: SB 626 LTC Ombudsman Now Serves
Adults with Mental illness or Developmental Disabilities in Residential Care Facilities
ILL: SB 1190: Law for Caregiving Grandparents
Gathers More Legislative Support  
3. MA: H 3231: Defines Terminology to Avoid Employment Discrimination for Caregivers
Federal legis icon
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.   
map of world globe
research report graphic
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

1Alzheimer's Disease Summit: The Path to 2025

conference graphic
funding media graphic
Funding, Media & Miscellaneous 

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

STATE . . .

OR: SB 626 LTC Ombudsman Now Serves Adults with Mental illness or Developmental Disabilities in Residential Care Facilities  
The Long Term Care Ombudsman duties now include oversight of needs for residents of care facilities who have mental illness or developmental disabilities in addition to physical disabilities. Ombudsman duties now include adult foster homes. Renames Long Term Care Advisory Committee as Residential Facilities Advisory Committee and increases committee membership. New duties start July 1, 2014. 


ILL: SB 1190 Law for Caregiving Grandparents Gathers More Legislative Support
The  Illinois Family Care Provider Act which states an employer must provide up to 12 weeks of unpaid family medical leave to an employee during any 12-month period for the following purposes: the birth or adoption of a grandchild in order for the employee to care for such grandchild; because of the placement of a grandchild with the employee for adoption or foster care; or in order for the employee to care for a grandchild if such grandchild has a serious health condition or the employee to care for a grandparent if such grandparent has a serious health condition. The bill contains provisions concerning employee benefits and prohibited acts. Requires the Illinois Department of Labor to enforce the Act and authorizes an employee to file a civil action for enforcement.   


MA:  H 3231 - Defines Terminology to Avoid Employment Discrimination for Caregivers
HB 3231 adds three new definitions to the Massachusetts General Laws governing employment discrimination.  The following terms will be added to the law: family caregiver (an individual who provides medical or supervisory care to a family member with a serious health condition); family member (person who is related to the family caregiver by consanguinity, legal custody, marriage, or  a person with whom a family caregiver lives in a familial relationship); and serious illness (illness, injury, impairment, or physical or mental condition which requires: inpatient care in hospital, hospice, or residential medical care facility; or continuing supervision by a health care provider).

AARP: Potential Number of Caregivers to Plummet the Next 20 Years  
Family caregivers provide a majority of long term care services. Currently there are 7 family caregivers for each person over the age of 80, but by 2030 there will be only 2.9 caregivers for each person over 80.  As baby boomers age, they are transitioning from providing care to requiring care. The rapidly increasing demand for care, coupled with smaller families to provide support, makes establishing a U.S. comprehensive policy for long-term care services essential. Demographic changes are analyzed, and a call is made for a national integrated policy on long term care, that includes strong family support:      
IOM: Institute of Medicine Workshop on Value and Science Driven Healthcare
Summary of discussions held during the February 2013 IOM workshop, sponsored by the Gordon and Betty Moore Foundation and the Blue Shield of California Foundation. The event gathered patients and experts in areas such as decision science, evidence generation, communication strategies, and health economics to consider the central roles patients can play to bring about progress in all facets of the U.S. health care system. The workshop built on the ongoing work of the Roundtable on Value & Science-Driven Health Care to raise awareness of, and demand by patients and families for better care at lower costs, in addition to creating a health care system that learns and improves continuously.
CMS:  State Health Agencies Given Notice- Improve Hospital Discharge Planning; Involve Caregivers and Families in Discharge Planning and Training:
Earlier this year CMS's Center for Clinical Standards and Quality/Survey and Certification Group sent a guide to state survey agency directors. The guide contained guidelines for improving discharge planning from hospitals including: involving patients and families at every stage of the process, and using trained professionals as discharge planners that will ensure that appropriate training and community referrals are provided. In addition, hospitals are responsible for knowing capabilities and capacities of the facilities they discharge patients to and maintain effective communication with them. The hospital survey agencies in each state must perform chart reviews, as well as talk with staff and patients to monitor hospital compliance with these new guidelines established to improve transition from hospital to home, and reduce readmissions.  At the same time the United Hospital Fund issued an Agenda calling for 10 recommended changes to improve the hospital discharge process and advice for surveyors on how to review hospital compliance with the new guidelines.  UHF recommends using tools from the Institute of Healthcare Improvement and UHF as part of hospital Quality Improvement. fed4
Washington Post: Will a Little Known Provision of the ACA Stop Medicaid Payments to Guardians Providing HCBS? - A Response to Peggy Noonan's article in the WSJ:
The Community First Choice (CFC) Options expands home and community based service (HCBS) for Medicaid eligible persons with disabilities requiring a nursing home level of care. So far nine states have applied for the program as part of their ACA implementation plan. Recently disability advocates noticed one provision of the CFC preventing a guardian from receiving pay for caregiving. This provision was intended to avoid a conflict of interest between the person developing the plan of care and the paid provider. So far Oregon and California are the only states that have received federal approval of their CFC application (in which the federal government pays a higher share of HCBS cost, reducing the state share). Last week the Oregon Department of Health and Human Services said that federal officials have agreed to work with the state to develop "the right processes" to allow guardians to continue as paid caregivers.  No news yet from the other states. Peggy Noonan's piece in the Wall Street Journal pointed to this provision as a failure of Obamacare. Featured below are the links to the response to Noonan's article as well as the actual regulatory language of the CFC as it appears in the Federal Register:
State by State Insurance Map
The National Organization for Rare Disorders (NORD) has published a health exchange map of the U.S. showing which states operate their own exchange, which are using a federal exchange, and which have a joint state-federal exchange system. Clicking on a state takes the reader to contact information for that state's Department of Insurance.



CHINA: Will New Elder Rights Law Banish Loneliness? 
Last month the Chinese government enacted a law requiring children to provide for the emotional and physical needs of their parents. Adult children not complying with the law face fines and/or possible jail time.  Already one woman was found negligent for not visiting her 77-year-old mother under the Law on Protection of the Rights and Interests of the Elderly. As punishment she was ordered to visit her mother at least once every two months, and on at least two national holidays a year. Many countries have similar laws, such as those in the former Soviet Bloc, which allow elderly parents to sue their children for support, or siblings to sue one another to help support their aging parents.  Although most states in the U.S. do not enforce their laws regarding family support, some indigent elderly (and nursing homes) in Pennsylvania and South Dakota have sued and won financial judgments requiring adult children to pay in recent years. The Time and The Atlantic articles listed below discuss issues of elder care in other countries, and examine global concerns as the world population ages.  
Countries with Low Infectious Disease Rate, Good Sanitation, and Urbanization Have Increased Risk of Alzheimer's  
Residents of Industrialized countries may be more prone to Alzheimer's disease due to reduced contact with bacteria, viruses and microorganisms, theorize professors at England's Cambridge University. The 'hygiene hypothesis' which states there is a connection between cleaner environments and higher risk of autoimmune disorders and allergies, may contribute to the higher incidence of Alzheimer's found in highly industrialized countries. Reduced exposure to animals, feces, and soil decrease exposure to friendly microbes which are thought to stimulate the immune system to produce T-cells, and other white blood cells that fight infection and inflammation. After adjusting for differences in population age structures, countries such as the UK and France with higher levels of sanitation where found to have 9% higher Alzheimer's rates than countries where less than half the population has access to sanitation, such as Kenya and Cambodia. Similarly,  Switzerland and Iceland who have low levels of infectious disease experienced 12% higher rates of Alzheimer's compared to China and Ghana, that have high rates of infectious disease even when controlling for other factors.      
CDC:  The Different Characteristics of Younger and Older Caregivers  
CDC researchers used the 2009 Behavior Risk Factor Surveillance System survey (BRFFS) in a representative phone sampling of non-institutionalized adults age 18 and older in all 50 states and 2 US territories, to determine several behavioral characteristics.  Response rate for the survey was 75%, but the sample size is not mentioned.  25% of respondents self-identified as being caregivers in the previous month for a friend or family member. Older caregivers (> 65 years) were more likely to report fair or poor physical health and distress compared to younger caregivers (age 18-64 years). Younger caregivers were more likely to have higher levels of mental distress and dissatisfaction with life. Caregivers tended to be 50 to 64 years old, female, non-Hispanic black, and part of a couple. In the 2000 BRFFS 16.4% of people surveyed identified as caregivers, signifying a growth of 50% from 2000 to 2009.


University of Michigan: The Value of Disability Insurance for those with Mental Health Impairments 

This paper addresses the questions of how the wellbeing of disability insurance (DI) and Social Security Insurance recipients with mental illness compares to those with similar diagnosis not receiving benefits. Survey data from the federal Health and Retirement Study, and Social Security Administration was linked to individuals, and the control groups consisted of those with similar conditions who were either rejected for insurance benefits or did not apply. Some of the findings are that applicants with mental illness are worse off than applicants that have only physical disabilities, and that applicants with mental illness denied DI/SSI were worse off than other rejected applicants in almost all measures of well-being.  Policy makers have become concerned about the dramatic growth in DI/SSI applicants since the mid-1980s because they tend to be younger at onset of disability and have longer lifespans. Mental health advocates fear a tightening of SSI/DI eligibility rules as mental health applicants increase.  
Variations in Disability Patterns between the U.S., England and Europe in Adults Age 50 to 85    
Researchers used data from 3 different studies in 15 different countries (N= 48,225) to compare variations in disability related to age, wealthy and country of residence for adults age 50 to 85. Levels of disability were high among all ages in the U.S., followed by Eastern Europe, England and Southern Europe. The lowest levels of disability were found in Northern and Western Europe.  Northern and Western European rates remained low until the age span of 75-85.  High disability levels in the U.S. started at an younger age and were attributed to early onset of chronic illnesses such as diabetes, hypertension and stroke.  Disability levels in all countries, and at all ages, were greater for people with low wealth than with high wealth.

Alzheimer's Disease Summit: The Path to 2025

November 6 - 7, 2013
The New York Academy of Sciences
Presented by The New York Academy of Sciences, National Institute on Aging/NIH and the Global CEO Initiative on Alzheimer's Disease
Alzheimer's disease (AD) is a large and growing global health, fiscal and economic challenge, one whose current trajectory threatens to destabilize health care systems and economies in both developed and developing nations. Governments in Europe, Asia and North America have committed to making Alzheimer's a global priority, and they have created important engagements with key stakeholders in their efforts. Action must be taken now to avert this crisis by accelerating the development of new AD diagnostics and therapeutics through action-oriented programs.

A primary goal of this critical meeting is to convene leading industry, academic, and government stakeholders to actively participate in discussions regarding how to prevent and effectively treat Alzheimer's by 2025, by coordinating with governmental efforts to build research resources, reengineer our current drug development and evaluation systems, and identify innovative technologies and financing models. The outcome of this meeting will comprise a research agenda that will delineate the pathways needed to effectively treat and prevent Alzheimer's disease by 2025.


Stanford Center on Longevity Student Design Challenge 

The Stanford Center on Longevity is collaborating with Aging2.0 to launch a Challenge to encourage students around the world to design products and services to improve the lives of older adults. In this first year, supported by innovative sponsors, the Challenge is focused on maximizing independence for people with cognitive impairment. A distinguished panel of judges will choose Finalists in December 2013, and award prizes (including $10,000 first prize) at a conference and ceremony at Stanford in April 2014.  Kick off September 24 at Stanford University.  

Paul B. Beeson Patient-Oriented Research Career Development Award in Aging  (primarily for clinically trained medical & nursing faculty)

Funding Number: RFA-AG-14-014

Release Date: August 28, 2013
Expiration Date: November 15, 2013 
The National Institute on Aging (NIA) and the National Institute of Neurological Disorders and Stroke (NINDS) are pursuing this initiative to encourage and assist the development of future leaders in the field of aging by supporting clinically trained (primarily physician) faculty members early in their careers to gain additional research training and to establish independent programs in aging research. The John A. Hartford Foundation ( and The American Federation for Aging Research ( are interested in independently funding applications submitted under this initiative - misc3
Banner Alzheimer's Institute Creates Alzheimer's Prevention Registry
Knowing that any research endeavor, regardless of its potential, is limited by the ability to enlist support from those willing to take part in the study process, the Banner Alzheimer's Institute (BAI)  created the Alzheimer's Prevention Registry as part of its commitment to ending Alzheimer's disease.

The Alzheimer's Prevention Registry strives to overcome that hurdle by engaging individuals, 18 and older, of all races and ethnicities with or without a family history of the disease who are committed to ending Alzheimer's. Participants become part of an online community of people eager to learn about Alzheimer's news and gain access to the latest information about research happenings and overall brain health. They become part of the conversation about Alzheimer's through webinars and videos and are encouraged to share news and information through their own social circles and networks.

Joining the Registry provides an opportunity to help advance Alzheimer's prevention research through education, advocacy and study participation.

Join Our Mailing List Donate
  Please help support FCA's caregiver advocacy efforts
with a donation today. Thank you!