Caregiver Self Assessment Survey
Family caregivers provide 80% of all long-term care in NYS. NYSCRC understands the unique needs of caregivers. Through training and education, we focus on increasing caregiver access to respite resources. The Caregiver Self Assessment Survey is designed to assist caregivers in recognizing the importance of self-care.
What is Respite?
Respite is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult.
VIRTUAL RESOURCE CENTER - Resources for Caregivers
Helpful Caregiving Websites
Helpful Caregiving Apps (free)
AARP Caregiving - The app allows users to monitor symptoms, coordinate care with other family or caregivers, and keep track of appointments and medications. It also features a help center, where caregivers can find answers to urgent or commonly asked questions. AARP Caregiving is available for free on iPhone or Android.
Carezone - Dubbed a "health info organizer," CareZone helps caregivers keep track of medical information by organizing medication, allergies, insurance cards and ID cards all in one place. Through the app, caregivers can also create to-do lists to keep track of appointments and medication times. The app also curates news relevant to your loved one's illness, disability or condition. All features are private and secure, according to the company, meaning sensitive information stays private. Carezone is available for free on iPhone or Android.
CaringBridge - Communication is critical when dividing caregiving duties among multiple people — and that's where CaringBridge can help. CaringBridge connects several caregivers through one app, allowing several people to keep track of appointments, changes in health and other essential information. Users can also send each other inspiring messages and motivation through the app, which really helps pull together a team of caregivers in the toughest moments. CaringBridge is available for free on iPhone or Android.
Symple - Symple is an easy way to keep track of your loved one's symptoms like anxiety, fatigue and pain over long periods of time. The app allows you to track up to 10 individual symptoms, recording how your loved one feels and documenting any possible contributing factors to mood or health shifts. Symple features an interactive graph and spreadsheet that a caregiver can use independently, or send to a doctor for evaluation. Users say the app is simple to use, making it easy to remember sometimes vital health information in between office visits. he app is available for free on iPhone.
Caregiving Blog Articles
Of Meaning, Grit and Gratitude: A Caregiver’s Spiritual Journey - American Society on Aging
Proven, Effective, Caregiver Support - American Society on Aging
The Other Side of Alzheimer’s-One Caregiver’s Journey - American Society on Aging
After Caregiving Ends - The Purple Jacket
How Caregiver’s Can Keep Cancer Patients Safe at Home - The Purple Jacket
Caregiver Training - Video Series
The UCLA Alzheimer's and Dementia Care Video series provides viewers with practical tools you can use in a variety of settings to create a safe, comfortable environment both for the person with dementia and the caregiver.
From tips on dealing with refusal to bathe to Caregiver Guilt - All these helpful videos are between 4 and 6 minutes long. See All Videos Here
AARP Family Caregiving at Home Resources
NY Connects is a trusted resource for anyone who needs information and assistance with linking to long term services and supports. NY Connects can help you understand your care options, find services, learn about supports in caregiving, get answers about health insurance options, and more.
Access to Self Directed and Medicaid Managed Long Term Care can provide significant relief for caregivers.
Below is comprehensive list of resources in New York.
New York Expanded In-Home Services for the Elderly (EISEP)
Populations served: Adults (60+) who need help with everyday activities to take care of themselves, want to remain at home, and are not eligible for Medicaid
Self-directing participant count: 735
Mainstream Medicaid Managed Care (MMMC)
Populations served: Persons with mental Illness
Consumer Directed Personal Assistance (CDPA) Program- Available under MMMC and MLTC
Populations served: Adults with physical disabilities
Self-directing participant count: 20,000
NYS OPWDD Comprehensive Renewal Waiver
Populations served: Adults with intellectual/developmental disabilities
Self-directing participant count: 10,000
Help for Grandfamilies Impacted by Opioids and Other Substance Use - Generations United, 2019
In 2016, more than 1/3 of children removed from their homes due to parental substance use moved in with grandparents or other family members. This resource offers information and tips to help grand-families affected by substance use both inside and out of the foster care system. It lists additional resources on five topics: Practicing Self-Care; Addressing Childhood Trauma; Preventing Harmful Drug Use by Children; Engaging with Birth Parents; and Talking with a Child about their Birth Parent. Access the report.
The 2018 State of Grandfamilies in America Annual Report
Most grandfamilies face challenges in raising children they did not expect or plan to raise. Love Without Borders: Grandfamilies and Immigration highlights the additional hurdles faced by grandfamilies who come together as a result of a parent’s detention or deportation. Those hurdles include restricted access to support and services to help meet the children’s needs, language barriers, and fear of government agencies. The Report contains concrete policy and program recommendation to help guide policy makers and advocates.The report contains concrete policy and program recommendations to help guide policymakers and advocates
American Society on Aging - Substance use, most recently the opioid epidemic, is hurting America’s families and often placing greater responsibility upon grandparents to care for their grandchildren. To learn more about this increasing phenomenon read, Grandparents, Grandchildren, and Caregiving: The Impacts of America’s Substance Abuse Crisis
Support Needs of People with I/DD and Co-Occurring Mental Health Challenges and their Families
The Arc has recently released a 2018 brief on the support needs of people with I/DD and co-occurring mental health challenges and their families. Up to 40% of individuals with I/DD experience co-occurring mental illness, with some estimates pointing to even higher prevalence rates. Despite its large presence in the community, little is known about how to support families, caregivers, and direct service providers in meeting the needs of individuals experiencing mental illness and I/DD. Read the Brief Here.
The Juggling Act of Caregiving: Balancing Career, Health, and Gender Roles
Sarah B. Barnes, Wilson Center, March 2019
This report offers some hope for the future of caregiving. Currently 2/3 of unpaid caregivers are women. More supportive policies and millennials' gender equity in caregiving are easing the stress on women. With continued steps to increase the societal value of caregiving, it can become a more positive experience that benefits all involved.
Care Community from Caregiver Action Network - Share and talk with other caregivers
Alzheimer's Reading Room - Reports on new Alzheimer's research and documents the author's personal experience with caregiving.
Caregiving with Purpose - Award-winning blog written by Dr. Ina Gilmore about fictional character Lisa's jorney through the stages of caregiving.
Caregiving.com Blogs - Family caregivers' personal blogs that cover a variety of topics; it includes the blog of caregiving expert Denise Brown.
The Caregiver's Voice - Written by caregiving expert Brenda Avadian, this blog brings humor and inspiration to caregiving topics.
The Unprepared Caregiver - Written by former caregiver Dr. Azchary White, this honest and informative blog discusses the challenges of caregiving and ways to cope.
What's Hot in PD? - Monthly blog by National Parkinson's Foundation Director Dr. Michael Okun with the latest Parkinson's news and research
"Shining the Light on Elder Abuse" - A powerful video in the victim's own words
FRAUD Hotline If you or a loved one have been the victim of fraud, please call 1-855-303-9470 or Click here