New Tool: Clinical Trial Tool


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We’ve been tracking recent articles, reports and statistics relevant to caregiving. We hope you find these useful

  • DFTA 2017 Survey of Informal Caregivers in NYCThis study is the first of its kind to examine the extent to which unpaid caregivers’ needs are met in NYC and to identify areas for further improvement. The study was created to provide actionable and policy-relevant data on the extent to which unpaid caregivers in New York City obtain the services they need and the barriers they may face in obtaining those services. The study was designed by DFTA and the Mayor’s Office for Economic Opportunity (NYC Opportunity) with input from the Administration for Children’s Services (ACS), the Mayor’s Office for People with Disabilities (MOPD), and community stakeholders including AARP. Conducted by NYC Opportunity in partnership with Westat, a research and statistical analytics firm, the study includes separate surveys for three groups of unpaid caregivers and providers of services to these caregivers. The three groups are adults caring for family member(s) aged 60 or over, including adults with Alzheimer’s disease or other dementia; Grandparents or other older relatives who are the primary caregivers of children under 18; and Adults caring for individuals with disabilities between the ages of 18 and 59.“There are an estimated 900,000 to 1.3 million unpaid caregivers in New York City. While the three types of caregivers surveyed may not be representative of this entire population, the findings reveal that of all caregivers who completed the survey, most are women and many are seniors. A majority provide at least 30 hours of care per week, with many spending 40 or more hours a week providing care. Many have jobs, and it is not uncommon for these caregivers to encounter problems at work, change to part-time work, or quit their job because of their caregiving responsibilities. Many struggle financially, either barely managing to get by or not able to make ends meet. Caregivers acknowledge needing services like respite care and legal help, but sometimes they do not know that such services are available.”The study is a wealth of information for anyone serving New York City’s caregivers. Please click here to read the entire study.
  • DFTA Annual Plan Summary  2018-2019 also provides valuable information about caregiving programs in NYC, including Social Adult Day Services, Silver Alert, Caregiver Resource Center, etc. “DFTA’s mission is to work to eliminate ageism and ensure the dignity and quality‐of‐ life of New York City’s diverse older adults, and for the support of their caregivers through service, advocacy, and education.  DFTA continues its long history of collaborative partnerships with community‐based organizations for the provision
    of programs and services, which aim to foster independence, safety, wellness, community participation and quality‐of‐life.” PSS is proud to collaborate with DFTA on many programs including our Senior Centers and Circle of Care.
  • Charting the LifeCourse Tools

    Missouri Family to Family, which is housed within Missouri’s University Center for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) at the University of Missouri-Kansas City Institute for Human Development, in collaboration with the ARCH National Respite Network and Resource Center, developed Charting the LifeCourse Respite materials that were released at the National Lifespan Respite Conference. The materials include a Respite guide book, portfolio and other tools meant to help family caregivers caring for anyone of any age or disability and those who support them create a plan to access respite services within and outside the formal services system.

    The purposes are to provide information on the importance of respite for the well-being of the family caregiver and all family members; tools for thinking about and planning for respite; and additional resources for finding informal respite in the community.

    Information on how to use the Charting the LifeCourse respite materials can be found in this Power Point Presentation of Jane St. John, Community Inclusion Specialist and Field Research Specialist for the Missouri Family to Family team at the UMKC-Institute for Human Development at the 2017 ARCH National Lifespan Respite Conference. Stay tuned for additional training opportunities on how to best use the tools.

  • The Embracing CarersTM  online survey was conducted by Censuswide on behalf of Merck KGaA, Darmstadt, Germany. It questioned 3,516 unpaid/unprofessional caregivers aged 18-75 years including 2,106 respondents aged 35-55 in Australia, France, Germany, Italy, Spain, UK and the US between July 27 and August 8, 2017. Respondents were screened to ensure that only unpaid, unprofessional caregivers participated in the survey. Results from the survey revealed that: 
    • Nearly half (47%) of unpaid caregivers have feelings of depression with almost 3 in 5 (57%) feeling that they needed medical care/support for a mental health condition (e.g. depression, anxiety, stress) due to their role as an unpaid caregiver. Of these a quarter (25%) have not sought medical help.
    • More than half (55%) of unpaid caregivers feel that their physical health has suffered as a result of their caregivers duties.
    • More than half (54%) of unpaid caregivers don’t have time to book or attend medical appointments for themselves.
    • 42% of unpaid caregivers puts the health of the person they’re caring for above themselves.
    • 30% of unpaid caregivers feel that their role of a caregiver has put pressure on their financial situation.
    • Almost 3 in 10 (28%) of unpaid caregivers feel their role as a caregiver is unrecognized by their healthcare system.
    • More than 1 in 5 (21%) of unpaid caregivers feel their career has been negatively affected by their role as a caregiver.
  • Family Caregiver Alliance has published a compilation of statistics from a broad array of caregiving experts featuring information on effects of caregiving on physical and mental/emotional health, use of technology and access to support and resources:


  • You’ll want to look over this amazing fact and analyis-filled blog written by Vicki Kaufmann, MA, MPSt, retired certified family life educator and counselor:
  • Here’s a great article by elder lawyers Lamson & Cutner. “Six major risks arising from the growing crises in dementia care.” It is especially relevant to New York residents who need to learn more about Medicaid Community Care vs. Medicaid Nursing Home care.
  • The National Alzheimer’s Association has just released the 2017 Alzheimer’s Disease Facts and Figures which includes a special report on the next frontier of Alzheimer’s research.
  • To access the one page NYS Statistics Fact Sheet
  • 2016 Centers for Disease Control 2016 Alzheimer’s At a Glance
  • If someone in my family has had #Alzheimers, will I have it, too? Understanding Alzheimer’s Genes: Know Your Family History
  • An article in the March 9th 2016 New York Times reports that a 2013 survey of nearly 500 caregivers by the Manhattan borough president’s office and the New York City chapter of the Alzheimer’s Association found a “’desperate’ need for services like home care and respite programs to relieve those giving unpaid care”. PSS is proud to be at the forefront of those serving this growing need, offering support to NYC’s caregivers for over a decade.
  • The first ever State of Caregiving report uses the results of an online survey of more than 3,300 family caregivers to dive deep into the demographics, financial circumstances, living situations and support systems used by people caring for an aging loved one. This analysis offers unprecedented information about this vitally important group of men and women. “As Americans’ average life expectancy creeps ever upward, the need for family members to step in and take care of their aging loved ones will only increase. Currently, 36 percent of U.S. adults provide some kind of caregiving assistance for an older relative, according to the Pew Research Center.”’s State of Caregiving 2015 report supports PSS’ position that one of the most important services we can provide is support to those who care for an elderly adult. Our Circle of Care has grown and continue to grow to fill these vital needs.
  • AARP’s “Valuing the Invaluable: 2015 Update” and The National Alliance for Caregiving/AARP’s 2015 Caregiving in the U.S. offer a wealth of information on caregiving nationwide.
  • The NYC Department for the Aging’s website is a vital resource for New York City caregivers.
  • The Family Caregivers Alliance Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers, in both English and Spanish. Check out their Fact Sheets, especially their new Caregiving 101: On Being a Caregivers.
  • E-book from Family Caring for Family — Navigating the landscape of caring for your elderly loved one; and thriving along the way.
  • SharetheCaregiving’s blog Share the Care provides resources for caregivers that will help prevent burnout, stress, isolation, depression and economic hardship.
  • A Place for Mom’s Blog is a great source of information on caregiving, Medicare, and dementia, among other issues.
  • Together in This covers general caregiver topics and emphasizes solutions for Alzheimer’s disease.
  • The Alzheimer’s Reading Room website provides you with materials to read and an online community to talk with.
  • Integrity Senior Services provide in-home mental health counseling to older adults and caregivers throughout the 5 boroughs. Visit their website to conduct a referral.