New York State Department of Health Announces New Caregiver Guide for People Helping Loved Ones with Health Care

"Holiday Gift" from the Department Makes Caregiving Easier All Year

ALBANY, N.Y. (December 19, 2018)- The New York State Department of Health today announced a special holiday gift to recognize people caring for an older adult or a loved one with a disability: the New York State Caregiver Guide. Free copies of the book will initially be distributed by seven organizations in New York State to nonprofessional caregivers helping a friend or family member.

The announcement was made at the Carter Burden Gallery in Manhattan, which is part of the Carter Burden Network, a leader in aging services in New York City featuring work by artists over the age of 60.

"People who take the responsibility to care for loved ones with serious or limiting health conditions may often feel overwhelmed by the management of day to day activities," said New York State Health Commissioner Dr. Howard Zucker. "The Caregiver Guide is my gift to caregivers to make their lives easier and acknowledge them for all that they do year round."

Greg Olsen, Acting Director of the New York State Office for the Aging, said, "There are many resources in New York State to assist caregivers, and we are thrilled to partner with the Department of Health to offer the Caregiver Guide. The Guide serves as yet another example of New York's strong commitment to older adults and their families and furthers our efforts as the first age-friendly state in the nation. There are more than four million caregivers across New York State who provide more than 2.6 billion hours of hands on daily care to loved ones at any given time each year. The Guide, in addition to being a valuable resource for available services, reminds caregivers to take much needed temporary relief from the daily routine and stress that can come with providing care, and allows them to focus on their own health and well-being."

The 140-page Caregiver Guide comes in a custom-made box that includes a pen, a notepad and sticky notes in multiple colors. It is designed to help people who are not medical professionals navigate the healthcare system, with and on behalf of a loved one who either needs assistance or is not able to participate. Its 10 color-coded sections cover topics like "Communicating with Healthcare Professionals," "Legal and Financial Planning" and "Creating Your Care Team."

Printed in large font on colorful, glossy pages, the guide describes the various types of care available in New York State and their differences, provides web addresses for resources like Medicaid and Medicare and explains legal issues like HIPAA (Health Insurance Portability and Accountability Act). It also has places for note taking and comes in a sturdy box with a pocket for storing important papers and a shoulder strap to make it easier to carry to medical appointments.

Perhaps most importantly, the book reminds caregivers to take some time to care for themselves too. It emphasizes the need for a team approach to the many caregiver tasks, which include helping loved ones with grocery shopping, recreation, grooming and laundry, in addition to managing healthcare appointments and medication.

The Guide was developed by caregiving experts at the State Department of Health, in collaboration with the New York State Office for the Aging. It was published with the support of the NYS Health Foundation, in collaboration with AARP (American Association of Retired Persons) foundation.

In this first pilot run, 1,000 copies have been printed for distribution. The following sites will be distributing guides to caregivers through their programs and services:

  • NYC: CaringKind, Presbyterian Senior Services
  • Capital Region: St. Peter's Nursing and Rehabilitation Center, Eddy Alzheimer'sServices
  • Finger Lakes: Lifespan
  • Western New York: Alzheimer's Association, WNY
  • Statewide: New York Independent Living Open Doors Program

A survey asking for feedback, as well as a self-addressed stamped envelope, has been packaged with the guide. The Department of Health intends to incorporate community feedback received during the pilot into a larger printing and future statewide distribution of the guide.

The caregiver guide represents one of many actions New York State has taken to support caregivers.

In 2015, the State expanded the Alzheimer's Disease Caregiver Support Initiative, investing $27.4 million in caregiver services. Support includes care consultations, support groups, education and respite through community organizations such as the Alzheimer's Association. The initiative also funds diagnostic services and clinical care through 10 Centers of Excellence for Alzheimer's Disease. Caregivers can learn more about available services in their area:

Also in 2015, Governor Cuomo signed into law the Caregiver Advise, Record, Enable (CARE) Act, which requires hospitals to allow patients to formally designate a caregiver and also educate and support caregivers to provide post-discharge care at home.

New York State has led a multi-strategy approach to assisting families and caregivers by supporting respite through expansion of the Respite Education and Support Tools (REST) program. In 2017, New York State received the REST Vision Award, which is given to the state that has trained the highest number of individuals or organizations to provide critical respite support for caregivers.

In 2017, Governor Cuomo launched the nation's first statewide aging services mobile app to connect older adults and caregivers with valuable local resources and services, including information regarding health and wellness, housing and transportation options. The New York State Office for the Aging's Aging Services App puts easily understandable information into the hands of older New Yorkers, helping them remain healthy and connected to their communities.

Beginning in 2018, New York State's Paid Family Leave Act provides New Yorkers with job-protected, paid leave to bond with a new child, care for a loved one with a serious health condition or to help relieve family pressures when someone is called to active military service abroad. As of January 1, 2019, the amount of time eligible New Yorkers can take for paid family leave will increase to 10 weeks. For more information please visit

AARP New York State Director Beth Finkel said, "This guide to help New Yorkers care for their loved ones is a valuable resource and an important recognition of the critical role family caregivers play in our lives and in our long-term care system. Practical help is what most family caregivers need above all, and there is great need; there are nearly 2.6 million family caregivers across New York, and they provide 2.4 billion hours of care valued at $31.3 billion every year. We commend Dr. Zucker for developing this guide and Governor Cuomo for taking another step toward fulfilling New York's commitment to all its citizens as the first state in the nation to enroll in the AARP-World Health Organization's Network of Age-Friendly States and Communities."

ABOUT THE CARTER BURDEN NETWORK: Carter Burden Network promotes the well-being of seniors 60 and older through a continuum of services, advocacy, arts and culture and volunteer programs, all oriented to individual, family and community needs. The organization is dedicated to supporting the efforts of older people to live safely and with dignity. As a leader in aging services in NYC, the Carter Burden Network welcomes seniors to participate in programs and attend centers offering vital resources that support independence and provide opportunities to form connections that enrich their lives. Carter Burden Network provides programs that nourish body, mind and spirit of vulnerable NYC seniors.