Caregiver Resources
There is a wealth of information and resources available for caregivers, and the Steven S. Elbaum Family Center for Caregiving is committed to spreading the word to those in need. This page is a hub for educational materials, social services that are available, and support organizations on the state and national level that include links to additional support material and resources.
From the Director: Allison J. Applebaum, PhD, FAPOS
Stand by Me draws on more than a decade of clinical and research experience as well as Dr. Applebaum’s personal journey as the primary caregiver for her own father. Stand By Me puts the practical tools and transformative support of the Caregiver Support Program in your hands, empowering you to provide your loved one with the best quality of life and care possible, while promoting your own well-being. The book covers crucial topics, including:
- Getting the most from any health care system
- Productive advanced care planning
- Navigating changing roles and relationship dynamics
- Finding meaning and purpose in the caregiving experience
This textbook for professionals explores the broad spectrum of experiences that caregivers face, influenced by their life stage, relationship to the patient, cultural background, as well as the patient’s disease trajectory and type of treatment. It also covers advances in research into support for caregivers, illustrated by case examples.
Meaning-Centered Psychotherapy for Cancer Caregivers: Therapist Manual and Caregiver Workbook
Meaning-Centered Psychotherapy is an approach that has proved to powerfully enhance meaning, purpose, and spiritual well-being among patients with advanced cancer. Meaning-Centered Psychotherapy for Cancer Caregivers builds on that approach to help caregivers develop the same emotional resources to support them through their challenges. This manual provides clinicians with guidance on the delivery of the seven-session approach to assist caregivers to connect to a greater sense of meaning in their role.
Guides and Toolkits
Resources Across the Mount Sinai Health System
Chaplain Services
Available through the Center for Spirituality and Health and open to people of all faiths, cultures, and beliefs.
Interpreter services, translation, and assistive devices provided free of charge.
Multi-medium art therapy for patients and caregivers is available free of charge for those enrolled in palliative care at The Mount Sinai Hospital.
Assistance with navigating insurance, financial concerns, and public benefits.
Short-term home health care, including home health aides; physical, speech, and occupational therapy; social work; nutrition.
Navigating Dementia: A Mount Sinai Health System Community for Caregivers
This online community is designed to offer guidance and support from others walking a similar road, as well as from Mount Sinai’s dementia experts.
Patient representatives are here to assist you and your family with any questions, complaints, or concerns you may have regarding your loved one’s health care or our services.
Resources in the Greater New York City Area
American Parkinson Disease Association (APDA)
Provides an online support community, Ask the Doctor forum, tips for explaining Parkinson’s disease to children, and more.
American Parkinson’s Disease Association - New York Chapter
Offers a wide range of support services, including information, referrals, educational programs, and support groups. They have a network of support groups throughout the city and surrounding areas.
Heights and Hills
This Brooklyn-based organization offers in-person and Zoom support groups for those caring for older adults.
Lewy Body Dementia Resource Center
Offers support groups for caregivers in-person at locations throughout the New York area and by Zoom.
Tri-State Resources
Resources, education, events, free services for residents of Hudson, Bergen, and Essex Counties.
American Parkinson Disease Association (APDA)
Provides an online support community, Ask the Doctor forum, tips for explaining Parkinson’s Disease to children, and more.
Professional oncology social workers provide free emotional and practical support for people with cancer, caregivers, loved ones, and the bereaved.
CT.Gov Aging and Disability Services
Education, short-term respite, training, support groups, funding.
Search for services by state with this tool.
New York State Department of Health
Search by county for caregiver support programs and Centers of Excellence for Alzheimer's Disease.
Trualta via the New York State Caregiver Portal
Free online training and peer support with personalized 24/7 bite-sized lessons, peer support groups, expert-led webinars, and more.
Retreats
Camp Sunshine inspires hope in children with life-threatening illnesses and their families through many unique, supportive programs at its beautiful campus on Maine’s Sebago Lake.
Connecting Our Paths Eternally (COPE)
COPE workshops offer healthy coping tools and effective strategies to grieving individuals, as well as professionally led support groups, a grief support phone line, educational, and healing workshops, including yoga, meditation, art, movement, music, and journaling.
National Resources
Comprehensive guides to help you access programs and services for everything from health, legal, and financial assistance to respite care.
Alzheimer’s and Dementia Caregivers Helpline: 800-272-3900
Or dial 711 for services in multiple languages (200 languages offered), and for deaf and speech-impaired individuals.
Administration for Community Living (ACL)
ACL programs, councils, and research projects help support and empower those caring for older adults and people with disabilities.
Education programs, support, and volunteer opportunities.
Alzheimer’s Foundation of America
Resources, support groups, help line, webinars, self-care programming.
Caregiver resources, online communities, and support.
Association for Frontotemporal Degeneration
Support resources, education, current research, and policy.
Community support for people living with dementia and their essential care partners so they can safely remain and continue to engage in the community.
Lewy Body Dementia Association
Provides a 24/7 support hotline called the “Lewy Line” as well as support email correspondences, caregiver support groups, and educational resources.
National Alliance for Caregiving
Offers a series of free, online guidebooks developed in partnership with patient-advocacy and consumer-facing partners to improve the caregiving experience.
National Ataxia Foundation Support Groups
The Foundation coordinates support groups for the Ataxia community both virtually and in-person.
Tips, communication guidance, and support resources.
Offers resources and support networks for all stages of the care partner journey and practical tips that can help along the way.