Family Caregiver Alliance
Volume XIII, Number 4, June 12, 2013

Dear Colleagues,  


The folks at the Center on Aging at the University of Minnesota asked if we could help spread the word about an exciting new project that will develop and test a brief online questionnaire for caregivers of persons with dementia. The results from this questionnaire will help identify areas for service needs and key referrals for the caregiver and the person with dementia. Potentially this could link to service databases in regions or statewide if available. When the tool is completed, it will be available for broad scale use. Your participation is critical in order for the tool to work the best with service recommendations.



We are providing input here at Family Caregiver Alliance - we hope you will too!


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.

1. New York:  New York: New York's Paid Sick Leave Bill May Serve As Model For U.S.
2. Nebraska:  Nebraska: Bill would provide tax credits to caregivers
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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.

1.   Nat'l Center on Caregiving, Family Caregiver Alliance:
  • Family Caregiving & Transitional Care: A Critical Review, [pub: Oct. 2012]
  • Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners, 2nd Edition, [pub: Dec. 2012]

2.  NPR: Video Consults for Better Parkinson's Care? 
3.  NY Times: Cost of Dementia Care 

4.  New Reasons To "Like" Online Hospital Reviews
5.  NY Times: After the Diagnosis, the Get-Togethers

International News

International news surrounding caregiving and related healthcare issues from countries around the world. 
[None this issue]


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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

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Funding, Media & Miscellaneous 

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

STATE . . .

New York: New York's Paid Sick Leave Bill May Serve As Model For U.
New York City is preparing to mandate that thousands of companies provide paid time off for sick employees, bolstering a national movement. The legislation would eventually force companies with at least 15 employees to give full-time workers five compensated days off a year when they are ill, which would affect one million New Yorkers who do not currently have such benefits. New York City's mandate would not take effect until spring 2014, and for the first 18 months, it would apply only to businesses with 20 or more employees. . .  READ MORE


state2Nebraska: Bill would provide tax credits to caregivers  

Advocates for the elderly have asked Nebraska lawmakers to approve a $500 income tax credit for caregivers. This tax credit would provide caregivers with much-needed financial relief for medical supplies and other necessities the insurance company won't handle. If the bill is approved, caregivers would receive the annual $500 credit starting this tax season for taking care of anyone over the age of 65 who has physical, mental, or emotional disabilities. Only caregivers with incomes above $27,925 a year could qualify for a refundable tax credit. Estimates show the tax credit would cost the state more than $1.6 million over the first year, but would save significant money in the long run as people are able to stay in their homes. . . .   READ MORE


National Center on Caregiving, Family Caregiver Alliance:  


  • Family Caregiving and Transitional Care: A Critical Review, October 2012. This report describes major transitional care programs, assesses the extent to which they actively involve family caregivers and identifies barriers to greater engagement.
  • Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners, 2nd Edition, December 2012
     An updated listing of vetted caregiver assessment tools for practitioners in the field to use when developing caregiver assessment instruments. This 2nd Edition brings a number of changes to measures inventoried in 2002 (the first edition of the inventory), as well as new measures which have been added; gaps have been noted in the Future Directions section.  


Video Consults for Better Parkinson's Care 

The director for the Johns Hopkins Movement Disorders Center, is on a mission to convince America that video chats with doctors are as good or better than the traditional office visit. He has been practicing telemedicine and consulting with some of his patients from the comfort of their own home. This has resulted in a decrease in time and cost for the patient without affected the quality of care. Patients are happy with the care they receive and unanimously want to continue. He is now offering up free one-time video consultations.


The 30-minute consult can include advice on diagnoses, tests, medication changes, physical therapy, and the patient's prognosis. "The toll free number is 855-237-7446. Due to licensing requirements, this offer is only available to residents of CA, DE, FL, MD, and NY, and those outside of the US. . . . READ MORE 


[For the full research article on this project, please see JAMA citation below under Research Reports and Journal Articles]



fed3 NY Times: Cost of Dementia Care

 A study by the RAND corporation looked at the projected costs to care for Americans with dementia and found that the financial burden is at least as high as that of heart disease or cancer. And both the costs and the number of people with dementia will more than double within 30 years. Currently, nearly 15 percent of people aged 71 or older, about 3.8 million people, have dementia, and by 2040, that number is expected to swell to 9.1 million people. The study found that direct health care expenses in 2010 for dementia, which included nursing home care, were $109 billion compared to heart disease and cancer, which were $102 billion and $77 billion respectively. The study also calculated the value of informal caregiving, which they estimated to be between $50 billion to $106 billion, depending on whether economists valued it by the income a family member was giving up or by what a family would have paid for a professional caregiver. . . READ MORE 

New Reasons To 'Like' Online Hospital Reviews
Two recent studies have examined users hospital reviews on Facebook and Yelp, and found that they may accurately reflect quality. The findings are particularly important as more people are turning to the Internet to evaluate health care providers. According to a survey by the Pew Research Team, 14% of Americans went online last year to consult rankings or reviews of hospitals or medical facilities. In a study published in the American Journal of Medical Quality, researchers compared the activity on the Facebook pages of 40 hospitals in the greater New York City metropolitan region with hospital quality measures such as mortality rates and patient experience surveys. The researchers found that hospitals with lots of "Likes" tended to have lower mortality rates and substantially better patient reviews. Another study published in BJM Quality & Safety, used a similar methodology and looked at Yelp reviews of hospitals. The hospitals with the highest ratings had better mortality and readmission outcomes. . . READ MORE 



fed5NY Times: After the Diagnosis, the Get-Togethers

The Alzheimer's Association is expanding its "social engagement" groups nationwide for people in the early stages of dementia. These groups meet regularly and are both a social activity and a support. Programs around the country offer a wide array of activities such as dancing, music, visits to museums, and much more with the goal of making it a positive experience for the patients and their caregivers. The association will also help chapters launch peer-to-peer programs in which a person with early-stage Alzheimer's disease counsels those newly diagnosed or already living with the condition. The initiative is part of a larger effort to recognize the growing number of people diagnosed with early-stage Alzheimer's disease. Over 2 million Americans fall into this category,  and the Alzheimer's Association is realizing that this population is still active, still wants to be engaged, and has specific needs and challenges.  



 International1 Caregiving from Another Continent  

No one knows the exact number of how many people who immigrate to America eventually become transnational caregivers, but there is certainly a long tradition of cross-border family interactions in this country. The dynamics of these arrangements are changing because of two major trends. First, around the world, people are living longer, so more immigrants have aging relatives in their home countries who are in their 70s, 80s or 90s, with all the related medical and social issues. Second, technology has transformed how people can communicate over long distances and altered expectations of what people can do for relatives who are far away. Cellphone and video chats make it easier for people to communicate with  and see their relatives on a daily basis. . . . READ MORE    



JAMA Neurology: Randomized Controlled Clinical Trial of "Virtual House Calls" for Parkinson Disease
This study aimed to evaluate the feasibility, effectiveness, and economic benefits of using web-based videoconferencing (telemedicine) to provide specialty care to patients with Parkinson disease in their homes. This study was conducted over a seven month period and involved twenty patients with Parkinson's disease who had internet access at their homes. The twenty participants were randomized to receive either telemedicine or in-patient care, which was delivered by a specialist in the area of medicine. Compared with in-person visits, each telemedicine visit saved participants, on average, 100 miles of travel and 3 hours of time. The study authors concluded that using telemedicine to provide specialty care at home is feasible, offers the patient the same level of care as an in-person visit, yet saves the patient time and money. . . READ MORE 
[subscription required to read full article]



rsch2FCA Research Registry: Schlesinger Associates - Research Opportunity 
Schlesinger Associates, a local marketing research company, is looking for individuals 60 years of age or older who are experiencing early-stage/mild Alzeimer's or MCI and their family caregivers, and can share their thoughts and perceptions via a 90 min, in-person interview, either in Los Angeles, CA on June 24th or 25th, or in Orlando, FL on June 26th, 27th, or 28th.

We are offering a  combined compensation of $250 to be shared/split between each patient and his/her caregiver. Participants will be helping a company offering treatments to understand how to best serve its future patients' needs.  

  • To participate in this study in Los Angeles, please contact our study coordinator, Olivia at (310) 295-3040 Ext. 205.
  • To participate in this study in Orlando, please contact our study coordinator, Amy at (407) 660-1808 Ext. 119 (please use reference code 153).

Or, click here to see if you are eligible to participate in this paid study.  




The N4A 38th Annual Conference and Tradeshow
The N4A event is scheduled for July 27-31, 2013, at the Kentucky International Convention Center in Louisville. For more information, visit 


Stanford Geriatric Education Center 2013 webinar series
In collaboration with the American Geriatrics Society, California Area Health Education Centers (AHECs), and the Community Health Partnership, the Stanford GEC will be presenting a series of webinars on dementia topics during 2013. Topics include the new recommendations of the DSM-V diagnostic criteria for dementia; evidence based interventions for persons with dementia and their caregivers; recognizing and differentiating depression, delirium and dementia; ethical issues in Alzheimer's diagnosis; pain control and medications in patients with dementia; and end of life care for dementia patients. There is a $10 fee for each webinar, and it is $25 for CME and CEU credits.

PCORI Announces Second Round of Funding

Washington, D.C. (May 15, 2013) - The Patient-Centered Outcomes Research Institute (PCORI) today opened its second year of funding of patient-centered comparative clinical effectiveness research (CER), revising its broad funding announcements to clarify key review criteria and application definitions.


PCORI plans to award up to $81 million in this newly announced round of PCORI Funding Announcements (PFAs). With this latest funding opportunity, plus previous calls for research proposals and plans to offer additional PFAs later this year, PCORI aims to commit to at least $355 million in support for patient-centered CER in 2013.



New Round of Funding from the CMS Innovation Center

The Department of Health and Human Services announced on May 15, 2013 a second round of the Health Care Innovation Awards from the CMS Innovation Center, a $1 billion initiative to test new payment and service delivery models that will deliver better care and lower costs for Medicare, Medicaid and/or Children's Health Insurance Program (CHIP) enrollees.

  • - Read more on Health Care Innovation Awards Round Two 


New Consumer Materials: Family Caregiver Alliance Fact Sheets Recently Translated

Recently translated fact sheets are available in Vietnamese, and Korean on the following consumer topics: Alzheimer Disease and Caregiving; Guide to Understanding Dementia Behaviors; Caregiving and Depression; Dementia, Caregiving and Controlling Frustration (Korean Only); Is This Dementia and What Does it Mean?; Mild Cognitive Impairment. The Legal Planning for Incapacity Fact Sheet in Chinese was also updated. FCA has over 50 Fact Sheets, Tip Sheets and Checklists on its website for download or sent via email.


UCSF Osher Center for Integrative Medicine : Caregivers: Support for Family Caregivers of Loved Ones with Serious Illness


The UCSF Osher Center for Integrative Medicine has produced a series of materials as part of the Caregivers Project to support family caregivers of loved ones with serious illness.



FCA Fact Sheet - Home Away from Home: Relocating Your Parents  

This fact sheet offers advice and summarizes the issues to consider before making the important and challenging decisions regarding relocating your parent.


FCA Tip Sheet: Checklist for Helping Caregivers Downsize A Home

This fact sheet offers a handy guide to save time and energy, and the checklist provides a tool to help you organize your move and help it progress as smoothly as possible.


AARP Blog: Taking Care with Amy Gover: Caregiving and Taxes

 Working caregivers often have extra pressure around tax time. Even a simple tax situation can be very daunting as we are simultaneously working, caregiving, organizing our own and organizing our loved ones' taxes! The good news is there may be some ways to ease the burden for your loved ones. Here is a short video with a few tips on handling this stressful time of year. 

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