Health and Medicine: Resources for Caregivers

• AARP  https://www.aarp.org/caregiving/
  The AARP website offers a section on caregivers. There is a plethora of articles for caregivers from understanding the cost of caregiving, understanding legal and medical needs, as well as guides on how to care for a loved one and being a first time caregiver. There are a number of support groups available.

• Alzheimer’s Association https://www.alz.org/longisland 
  24/7 Helpline: 800.272.3900
  The Alzheimer's Association has a section for caregivers. Resources include a 24/7 helpline, information on Financial and Legal Planning for Caregivers, Caregiver Health, and Caregiving at different stages of a person with Alzheimer’s. Support groups for caregivers are also available.

• American Cancer Society https://www.cancer.org/cancer/caregivers/
  This organization provides interactive caregiver resources, as well as support videos on physical training, caregiver self care, advocacy, and caregiver stories.

• BrainLine.org https://www.brainline.org/caregivers
  BrainLine.org is a “national multimedia project offering authoritative information and support to anyone whose life has been affected by brain injury or PTSD: people with brain injuries, their family and friends, and the professionals who work with them.” Information for caregivers including how a brain injury or PTSD affects family relationships, caregiver emotions, caregiver self-care, and information for military caregivers are available.

• Caregiver Action Network (CAN) https://www.caregiveraction.org/
  This non-profit organization provides education, peer support, and resources to family caregivers. The Family Caregiver Toolbox provides resources for staying strong while caregiving, caring by condition, information on clinical trials, and finding a balance between a job and caregiving. CareChat connects caregivers through forums specific to their caregiving needs.

• Family Caregiver Alliance (FCA) https://www.caregiver.org/
  Resources for caregivers including caring for another, caring for yourself, and information on specific health conditions. Caregiving webinars and support groups are available.

• Family Service League https://www.fsl-li.org/find-help/senior-caregiver-services/
  Family Service League provides educational sessions for caregivers on topics including elder law, dementia care, nutrition, and long-term planning. Weekly group or individual counseling is available to caregivers. Services are free of charge. The program is funded by the Department of Health and Human Services through the New York State Office for the Aging and the Suffolk County Office for the Aging.

• National Alliance for Caregivers (NAC) https://www.caregiving.org/
  This nonprofit coalition of national organizations has a mission to build partnerships in research, advocacy, and innovation to improve the life of caregivers.

• Parent to Parent of New York State https://www.ptopnys.org/
  Parent to Parent of New York State has a mission to build a supportive network of families to reduce isolation and empower those who care for people with developmental disabilities or special healthcare needs to navigate and influence service systems and make informed decisions. One of several programs includes connecting a parent of a person with a developmental disability or special health need with another parent who has first hand experience.

• SAGE-Advocacy & Services for LGBTQ+ Seniors
  https://www.sageusa.org/resource-category/caregiving/
  This organization is dedicated to improving the lives of LGBTQ+ older adults. There is a section dedicated to caregivers with information on caring for specific needs of this population.

• Government Agencies:
  • New York State Office for the Aging https://aging.ny.gov/
    The office provides programs and services to older adults, focused on caregiving, health, housing, employment and elder abuse, among other aging-related topics.
  • Suffolk County Office for the Aging https://suffolkcountyny.gov/aging/Caregivers
    “This program helps sustain family caregivers in their efforts to care for an older relative who has a chronic illness or disability.  The Office for the Aging coordinates a variety of services.   These services are designed to complement, not replace, family care.  Priority is given to caregivers 60 years and older with the greatest social and economic need.”
  • Center for Disease Control (CDC) https://www.cdc.gov/aging/caregiving/index.htm
    Information for Caring for Yourself When Caring for Another and Creating a Care Plan. Additional articles about supporting caregivers.

• Gauch, S. M. (2023, September 20). Why caregivers' mental health is suffering. Psychology Today. View Online

Let’s ask ourselves why caregivers' mental health is suffering and explore what we could do differently. When we understand the complexity of this type of caregiving (the chronic sorrow, trauma, isolation, otherness) we can team with them—not vilify them—revolutionizing how we help them, and their children.

• Esposito, L. (2023, April 6). What to do when you become the family caregiver. U.S. News and World Report. View Online

The caregiver role often takes people by surprise, leaving them unprepared.

• Booth, J. (2023, March 2). What is respite care? Forbes Health. View Online

Sometimes family caregivers aren’t ready to transition their loved one to a long-term care setting, but they need temporary relief from their duties to take a vacation, go to appointments or simply relax. Respite care can help—it allows older adults and people with illnesses or disabilities to get the attention and support they need while also providing primary caretakers with a much-needed break, or respite. Such care may even help prevent caregiver burnout.

• Brodaty, H. & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217-228. DOI: View Online

Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.

• Cheng, S. T., Au, A., Losada, A., Thompson, L. W., & Gallagher-Thompson, D. (2019). Psychological interventions for dementia caregivers: What we have achieved, what we have learned. Current Psychiatry Reports, 21(7), 59. DOI: View Online

With the rising dementia population, more and more programs have been developed to help caregivers deal with the care-recipient as well as their own frustrations. Many interventions aim to enhance caregiver’s ability to manage behavior problems and other deteriorations in functioning, with less direct emphasis placed on caring for the caregivers. We argue that techniques based on psychotherapy are strategically important in assistance provided to caregivers because of their utility for promoting emotional health. This article provides a focused review of such methods used in evidence-based intervention programs, along with the mechanisms of change associated with these methods.

• Vu, M., Mangal, R., Stead, T., Lopez-Ortiz C., & Ganti, L. (2022). Impact of Alzheimer’s disease on caregivers in the United States. Health Psychology Research,10(3).  DOI:View Online

First discovered by Alois Alzheimer in 1906, Alzheimer’s disease (AD) has become a growing global health concern with numerous implications for individuals and modern society. As patients’ symptoms of dementia continue to worsen, they gradually grow more limited in their independence. As a result, family members and close acquaintances often become caregivers for the patient and become more involved in maintaining the patient’s lifestyle. The authors of this research sought to study what motivates caregivers to look after AD patients and the impact of AD on their lifestyles and physical, mental, and social health.

• Yang, J., Lin, L., Gao, Y., Wang, W. & Yuan, L. (2022). Interventions and strategies to improve social support for caregivers of children with chronic diseases: An umbrella review. Frontiers in Psychiatry, 13(973012). DOI: View online

Adequate social support is a protective factor for the mental health of caregivers of children with chronic diseases. Since caregivers are the closest contact of children with chronic diseases, and the mental health of caregivers directly affects the quality of life and psychological condition of children with chronic diseases, the objective of this paper was to determine which interventions and strategies could promote the level of social support among caregivers of children with chronic diseases.

• Nemcikova, M., Katreniakova, Z., & Nagyova, I. (2023). Social support, positive caregiving experience, and caregiver burden in informal caregivers of older adults with dementia. Frontiers in Public Health, 11(1104250). View Online

Dementia is currently one of the major causes of disability and dependency among older adults worldwide. Cognitive dysfunction, neuropsychiatric symptoms, somatic complaints, and functional impairment fundamentally affect not only a person living with dementia (PLwD), but also his/her informal caregiver(s), often resulting in a high caregiver burden. A number of variables, including the caregiver's sociodemographic characteristics, the clinical characteristics of PLwD, social support, and the caregiver's personal resources determine the caregiver's burden. The aim of this study was to investigate the associations of caregiver burden in informal caregivers of PLwD with perceived social support, positive caregiving experience, and applying therapeutic communication methods.

• Falzarano, F., Moxley, J., Pillemer, K., & Czaja, S. J. (2022). Family matters: Cross-cultural differences in familism and caregiving outcomes. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 77(7), 1269–1279. View Online

The increasing number of minority older adults, and the subsequent increase in family members providing care to these individuals, highlights the need to understand how cultural values contribute to differential caregiving outcomes. Using the sociocultural stress and coping model as a guiding framework, the current study examined cross-cultural relationships among familism, social support, self-efficacy, and caregiving outcomes and examines how these relationships vary as a function of caregiver background characteristics.

• Xiang, E., Guzman, P., Mims, M., & Badr, H. (2022). Balancing work and cancer care: Challenges faced by employed informal caregivers. Cancers, 14(17). View Online

Caregiving for a family member or close friend with cancer can be particularly demanding for employed individuals who are juggling work responsibilities while providing care. With an eye toward stimulating research to develop programs and resources to support this vulnerable subgroup of caregivers, this narrative review first describes the financial, work, and mental health impacts of cancer on employed caregivers. Next, critical knowledge gaps are identified and directions for future research are described. The article concludes by formulating an agenda for practice that includes a multipronged effort on behalf of employers, healthcare, and community-based organizations to support and empower employed cancer caregivers.

• Caregiving Magazine  https://chicagocaregiving.com/  (Available online and in print.)

Caregiving magazine helps you navigate everyday life, find necessary services and locate professional assistance. We give you the information you need to make the best choices during this complex phase of life.

• Alzheimer’s TODAY https://alzfdn.org/media-center/alztoday/ (Available online and in print.)

Alzheimer’s TODAY is AFA’s magazine for caregivers of individuals living with Alzheimer’s disease and related illnesses. Each issue provides helpful information from professionals and family caregivers, personal stories from people who have been affected by Alzheimer’s and tips on health and wellness.

• National Alliance for Caregiving (NAC) E-Newsletter: This Week in Caregiving https://www.caregiving.org/this-week-in-caregiving/ (E-newsletter emailed weekly or available online.)

Weekly e-newsletter from NAC that brings subscribers the latest news, events, and resources related to caregiving.

• Family Caregiver Alliance E-Newsletter: Connections https://www.caregiver.org/about-fca/news-press/connections-newsletter/ (E-newsletter emailed monthly or available online.)

FCA’s Connections e-newsletter focuses on issues and information important to family caregivers. The newsletter regularly covers tips, articles, and helpful advice that can assist families with the numerous daily care tasks that caregiving for loved ones presents ― including the often overlooked “caring for yourself.” While much of the content can prove helpful to caregivers nationwide, the events included are local to the six-county region of FCA’s Bay Area Caregiver Resource Center.

• ARCH National Respite Network and Resource Center’s E-Newsletter: ARCH Quick News Update https://archrespite.org/about/subscribe/ (E-newsletter emailed monthly or available online.)

Subscribe to the ARCH email list to receive timely and informative respite news in the monthly ARCH Quick News Update. You will also receive notices of new ARCH products, upcoming webinars, policy or research updates.

DVDs

• Caring for Mom & Dad. Directed by Larkin McPhee. PBS, 2015. https://search.livebrary.com/record=b4844454~S85
  Americans are living longer than ever before. The U.S. is not prepared for this unprecedented demographic shift, and the question we're now all facing is: who will care for this aging population when they can no longer care for themselves?

• It's not a burden: the humor and heartache of raising elderly parents. Directed by Michelle Boyaner. Gravitas Ventures, 2021.  https://search.livebrary.com/record=b5657110~S85
  An intimate, humorous, and heartfelt journey into the stories of adult children navigating the challenges and joys of caring for their aging parents.

• The patient's playbook: how to save your life and the lives of those you love. Directed by Dave Povero. PBS, 2016. https://search.livebrary.com/record=b4854743~S85
  When faced with a health problem and critical decisions about treatment must be made, it's easy to become paralyzed. Author and host Leslie Michelson reveals a roadmap of life-saving strategies and decision-making tools to empower viewers to completely rethink the way they interact with caregivers and hospitals, going step-by-step through the process of getting the best possible medical care.

• To the edge of the sky. Directed by Jedd Wider, Todd Wider. Juno Films, 2019.
  A documentary that captures the evolution of four mothers from caregivers for their terminally ill children, with all of the ensuing stress and strain on their personal relationships, to ardent political activists, learning how to navigate government agencies and company boardrooms to reach their goal.

• The weight of honor. Directed by Stephanie Seldin Howard. Virgil Films, 2017.
  Filmed over five years, the film follows the lives of the caregivers of veterans who have been catastrophically wounded in America's longest war. Their lives are transformed overnight to twenty-four/seven caregivers tasked with caring for their war-wounded. The film reveals the family dynamic, their relationships before the wounds of war, and now, the uncertainties that lie ahead.

Audio Books

• Coste, Joanne Koenig. Learning to speak Alzheimer’s: a groundbreaking approach for everyone dealing with the disease. Tantor Media, Inc., 2014. Audiobook. https://livebrary.overdrive.com/media/1860392
  Revolutionizing the way we perceive and live with Alzheimer’s; the author offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality.

• Washington, Kate. Already toast: Cargiving and burnout in America. Beacon Press Audio. 2021. Audiobook. https://search.livebrary.com/record=b5616318~S85
  A revealing look at the often-unsupported role unpaid caregivers play in our society. It shows how all-consuming caregiving can be, how difficult it is to find support and how the social and literary narratives that have long locked women into providing emotional labor have also kept them in unpaid caregiving roles.
• White, Susanne. Self-care for caregivers: A practical guide to caring for you while you care for your loved one. Adams Media, 2022. Live-brary.com, https://livebrary.overdrive.com/media/8808504
  Self-care is vital to caregivers maintaining stamina and a positive outlook for both themselves, and the people they care for. In this book you'll find short, easy-to-read, and often easy-to-do ways to replenish your mind, body, and spirit.

E-Books

• Cabral, Joseph ed.  The engaged caregiver : how to build a performance-driven workforce to reduce burnout and transform care. McGraw -Hill, 2020. Live-brary.com, https://livebrary.overdrive.com/media/506613
  From the top experts on healthcare workforce engagement comes the vital road map to reduce the alarmingly high-and fast-growing-rate of staff burnout and to transform care. This is an actionable plan for developing and building a resilient culture that empowers caregivers and gives them the support they need to fulfill the patient promise with every care experience, every day.

• Cohn, Barbra. Calmer waters: the caregiver's journey through Alzheimer's and dementia. Blue River Press, 2016. Live-brary.com,  https://livebrary.overdrive.com/media/3943168
  After spending a decade caring for her husband who died from younger-onset Alzheimer's disease, Barbra Cohn offers a spiritual and holistic guide to help caregivers feel happier and healthier, have more energy and time for themselves, sleep better, feel more relaxed and confident, and experience inner peace, despite the obstacles they face. A bonus is that both the caregiver and memory-impaired individual --can use most of the healing modalities, allowing for a stronger connection between the two.

• Gillick, Muriel R. The Caregiver’s Encyclopedia: A compassionate guide to caring for older adults. Johns Hopkins University press, 2020. Live-brary.com, https://livebrary.overdrive.com/media/4895559
  The Caregiver's Encyclopedia provides you with all the information you need to take the best care of your loved one—from making major medical decisions to making sure you don't burn out. Authoritative, comprehensive, holistic, and highly illustrated, The Caregiver's Encyclopedia will help you figure out how to be the best caregiver you can be.

• Hayes, Kevin, ed. Caregiving sourcebook : basic consumer health information about caregiving, types of caregivers, childcare, elderly care, and care for people with serious medical conditions including Alzheimer disease, cancer, heart disease, stroke, mental-health disorders, and more : along with self-care tips for caregivers, information about programs, policies, and support services available for caregivers, a glossary of related terms, and a directory of resources for more information. Omnigraphics, Inc., 2021. Gale Ebooks, https://0-go-gale-com.search.livebrary.com/ps/i.do?p=GVRL&u=scls_main&id=GALE|60SV&v=2.1&it=eto
  This book overviews caregiving and the types of caregivers, challenges of long-distance caregiving, and information on long-term caregiving. It discusses childcare and eldercare, abuse prevention, and care of patients with COVID-19, Alzheimer's/dementia, cancer, heart disease, HIV/AIDS, stroke, mental health disorders and more. It offers tips for self-care and information about activities, programs and policies to support caregivers. Includes a glossary directory of resources.

• Lambert, Amanda, Aging with care: your guide to hiring and managing caregivers at home. Rowman & Littlefield Pub., 2017. Live-brary.com, https://livebrary.overdrive.com/media/3712865
  Finding the best and most appropriate in-home care for an aging loved one can be confusing and time consuming. This guide helps readers through the process of hiring a private caregiver, assessing needs and resources, and making difficult choices.

• O’Donnell, Liz. Working daughter: how to care for your aging parents while making a living. Rowman & Littlefield Pub., 2019. Live-brary.com, https://livebrary.overdrive.com/media/4762295
  Working Daughter is the story of a woman caring for her parents while trying to hang on to her career and raise her kids, the lessons she learned, and the advice she has to share. This book provides a roadmap for women trying to navigate caring for aging parents and their careers. It's ideal for readers who want straight talk and real advice about the challenges, and the upside, to eldercare.

• Smits, Angel. When reasoning no longer works: a practical guide for caregivers dealing with dementia & Alzheimer's care. Parker Hayden Media, 2017. Live-brary.com, https://livebrary.overdrive.com/media/3435171.
  "Nearly five million families deal with Alzheimer's Disease and other forms of dementia on a daily basis. They do this with little training, and often only their good intentions guide them. When Reasoning No Longer Works is the training manual these family caregivers have been searching for. This reference gives the reader an easy-to-understand view of what dementia does to the brain, how it is diagnosed, and most importantly, how to deal with its effects"

• Washington, Kate. Already toast: Caregiving and burnout in America. Beacon Press, 2020. Live-brary.com, https://livebrary.overdrive.com/media/5558792.
  A revealing look at the often-unsupported role unpaid caregivers play in our society. It shows how all-consuming caregiving can be, how difficult it is to find support and how the social and literary narratives that have long locked women into providing emotional labor have also kept them in unpaid caregiving roles.

• White, Susanne. Self-care for caregivers: A practical guide to caring for you while you care for your loved one. Adams Media, 2022. Live-brary.com, livebrary.overdrive.com/media/7454950Self-care is vital to caregivers maintaining stamina and a positive outlook for both themselves, and the people they care for. In this book you'll find short, easy-to-read, and often easy-to-do ways to replenish your mind, body, and spirit.

• Alzheimer’s Association  (https://www.alz.org/help-support/community/support-groups)
  225 N. Michigan Ave., Floor 17
  Chicago, IL 60601
  Phone (24/7 Helpline): (800) 272-3900
  The Alzheimer’s Association strives to maximize the care and support of those impacted by Alzheimer’s disease and other dementias. It leads the way with research, education, early detection and advocacy, and provides a wealth of information, resources and services, including support groups for caregivers and those living with the disease. Support groups are facilitated by trained individuals and are available in-person and virtually. The Alzheimer’s Association also hosts “ALZConnected” (https://alzconnected.org/), an online community/message board where those with Alzheimer’s, their caregivers and loved ones can ask questions, get advice and find support.
  
  Alzheimer’s Association – Long Island Chapter (https://www.alz.org/longisland)
  300 Broadhollow Road, Suite LL100
  Melville, NY 11747
  Phone (Long Island Chapter): (631) 629-6950
  24/7 Helpline: (800) 272-3900
  The Long Island Chapter of the Alzheimer’s Association offers support and education for community members living with Alzheimer's disease/dementia, their caregivers and loved ones. They provide a number of services, including in-person and virtual caregiver support groups, Memory Cafes, care consultations, educational programs and conferences, and more. The website includes a Long Island Caregiver Support Groups page (https://www.alz.org/longisland/helping_you/caregiver-support-groups) that provides information on local support groups located in Suffolk and Nassau counties.

• AARP (American Association of Retired Persons) (https://www.aarp.org)
  Local addresses:
  750 Third Avenue, 31st Floor, New York, NY 10017
  One Commerce Plaza, Suite 706, Albany, NY 12260
  Phone: (866) 227-7442
  Email: nyaarp@aarp.org
  AARP is the nation's largest nonprofit, nonpartisan organization that focuses on the issues affecting those age 50 and older.  Although many of the services are only available with membership, the website provides a wealth of information including articles like Marcia Mercer’s “How to Find a Caregiver Support Group That's Right for You” (AARP, August 31, 2021). (See https://www.aarp.org/caregiving/life-balance/info-2021/support-groups.html.) As noted in the article, there are a number of organizations and institutions that often offer support groups for caregivers, including faith institutions, hospitals and medical centers, disease specific associations, social service agencies and places of employment, as well as a wide range of support groups found online. With the suggestions made in this article, caregivers will be better prepared to locate a support group that meets their needs.
   
• American Cancer Society  (https://www.cancer.org/support-programs-and-services.html)  
  Business Office:
  3380 Chastain Meadows Pkwy NW, Suite 200
  Kennesaw, GA 30144
  
  New York (Manhattan) Office:
  PO Box 1357
  New York, NY 10018
  Phone: (800) 227-2345
  Chat: (https://www.cancer.org/about-us/online-help/contact-us.html)
  The American Cancer Society works to improve the lives of those with cancer, their families and caregivers by making sure that all have a chance to prevent, detect, treat, and survive cancer. They provide a number of programs and services, including support groups, navigation support for the newly diagnosed, lodging and transportation assistance, a survivor’s network, etc. Their website provides a lot of helpful information, and even has a search tool to locate local and virtual support groups and other services. To find support groups for caregivers, for example, go to https://www.cancer.org/support-programs-and-services.html  and click on “Search for Programs in Your Area.” Enter the desired zip code, click on “Care,” then “Support Network,” and then “Support Groups.” Click on “Personal Filters,” and under “Role” select “Caregivers.” Finally, click on the “Filter Search” button.                                                  

• American Diabetes Association (https://diabetes.org)
  2451 Crystal Drive, Suite 900
  Arlington, VA 22202
  Phone: 1-800-DIABETES (800-342-2383).
  
  American Diabetes Association – Greater NY & NJ (https://diabetes.org/get-involved/community/local-offices/greater-nynj)
  P.O. Box 7023
  Merrifield, Virginia 22116-7023
  Phone: (703) 549-1500
  The American Diabetes Association is committed to building a more equitable health care system where every American can access the best possible preventative and diabetes care. They provide education, information, tools and programs for those living with diabetes (including type 1, type 2 and gestational diabetes) and their caregivers. Support groups are found in their Beyond Type 1 and Type 2 Communities (https://diabetes.org/get-involved/community/community-collab-beyond-type-1-just-got-better), which are safe spaces to engage and connect with others online, learn tips, get answers, and gain insight. The Beyond Type 2 (BT2) community also offers a group for Spanish-speakers.

• American Heart Association (https://supportnetwork.heart.org/s/)
  National Center
  7272 Greenville Ave.
  Dallas, TX 75231
  Phone: 1 (800) AHA-USA-1 / 1 (800) 242-8721
  Founded in 1924, the American Heart Association is the nation’s oldest and largest charitable organization devoted to improving heart health and decreasing deaths from heart disease and stroke.  With heart disease being the No. 1 killer (and stroke being No. 2) worldwide, the AHA’s mission is “to be a relentless force for a world of longer, healthier lives.” The AHA offers an online community called the Support Network for those affected by heart and stroke conditions. In this community, patients, survivors and caregivers can connect with each other to share their stories, information and advice, and provide support. Membership is free. To register, go to https://www.supportnetwork.heart.org/s/login/SelfRegister and complete the online form.
   
• American Lung Association (https://www.lung.org/PCN)
  55 W. Wacker Drive, Suite 1150
  Chicago, IL 60601
  Phone: 1 (800) LUNGUSA / 1 (800) 586-4872
  Email: info@lung.org
  
  American Lung Association – New York, Hauppauge Office
  PO Box 12154
  Hauppauge, NY 11788
  Phone: (631) 265-3848
  Phone: 1 (800) LUNGUSA / 1 (800) 586-4872
  Email: info@lungne.org
  As America's trusted resource for lung health education, research, support and advocacy, the American Lung Association strives to defeat lung cancer, improve the quality of life for those with lung disease and their families, help people quit smoking, and ensure all Americans have clean, healthy air. Through their Patient & Caregiver Network online support program, those with lung disease and their caregivers can connect with others for support in disease-specific online communities, and access a variety of webcasts, disease management tools and e-newsletters.

• American Stroke Association (https://www.stroke.org)
  National Center
  272 Greenville Avenue
  Dallas, TX 75231
  Phone: 1 (800) 242-8721
  Phone (Warmline): 1 (888) 4-STROKE (1-888-478-7653) (M-F 9-6 ET)
  The American Stroke Association, a division of the American Heart Association, provides information, education and support for stroke survivors, their caregivers and loved ones. Their website includes a Family Caregivers page (see https://www.stroke.org/en/help-and-support/for-family-caregivers) that provides helpful information and resources. There is also a Stroke Support Group Finder (https://www.stroke.org/en/stroke-support-group-finder), where caregivers can locate nearby support groups by inputting their zip code and desired radius, and then selecting “Caregiver” under “Filter by Audience.”

• The ALS (Amyotrophic Lateral Sclerosis) Association - Greater New York Chapter (https://als-ny.org/)
  42 Broadway, Suite 1724
  New York, NY 10004
  Phone: (212) 619-1400
  Email: als@als-ny.org 
  The ALS Association works to improve the quality of life of those living with this progressive neurodegenerative disease by providing a multidisciplinary care services program, supporting global research and fostering government partnerships. The Greater New York Chapter serves Long Island and surrounding areas, offering a number of programs and services to residents living with ALS, their families and caregivers including support groups, a grant program, home assessments, equipment loan, transportation services, and more.
  The ALS Association’s website provides a lot of helpful information, including a Support for Caregivers page (https://als-ny.org/navigating-als/support-for-caregivers/) that gives tips and information on available programs. ALS support groups are available virtually and by telephone, and are facilitated by social workers and nurses. Although they are regional, these groups are open to anyone if it fits with their schedule. For further information, including a support group calendar, see the website (https://als-ny.org/navigating-als/support-groups/).  The ALS Association also offers their TLC: Talk. Learn. Connect program (https://als-ny.org/tlc-talk-learn-connect/), where a variety of speakers lead discussions on various topics (for example, adaptive clothing, travel tips, and assistive technology) in order to educate participants on local community resources and effective strategies for living with the disease. 

• Association for Autism & Neurodiversity (AANE)
  Main Office:
  85 Main Street, Suite 3
  Watertown, MA 02472
  Phone: (617) 393-3824
  Website: (https://www.aane.org/)
  The Association for Autism & Neurodiversity (AANE) (formerly the Asperger/Autism Network) provides information, education, community, support, and advocacy for those on the spectrum and their families, loved ones and caregivers. They offer a number of online support programs, including their single session (“Open”) and multi session (“Closed”) support groups for parents/families, groups for Spanish speakers, fathers, grandparents and partners, etc. There are also online Google Group Discussion Forums. Many support groups have a fee, but financial assistance is available. Registration is required for all groups.
  
• Association for Mental Health & Wellness (http://mhaw.org/family-support-groups/)
  939 Johnson Avenue
  Ronkonkoma, NY 11779
  Phone: (631) 471-7242
  Email: helpline@mhaw.org
  The Association for Mental Health & Wellness (MHAW) is Suffolk County’s local chapter of Mental Health America and the Mental Health Association of New York State.  It was formed in 2014 with the merger of three Suffolk County organizations: the Mental Health Association in Suffolk County, Clubhouse of Suffolk, and Suffolk County United Veterans. With the belief that mental health is just as important as physical health, MHAW strives to ensure that Suffolk County residents are provided with evidence-based practices, information, education, and resources. 
  MHAW offers a number of programs and services, including recovery and wellness centers, care management and coordination, peer services, workforce training, housing services, and food pantries. They also offer peer support groups and support groups for family and friends (and caregivers) of persons in recovery from mental illness. These family support groups are free and meet in person (in Riverhead) and via Zoom. For more information, see the website for meeting details or contact Jasmine Lucas, Family Support Group Facilitator, at (631) 471-7242 ext. 1315 / jlucas@mhaw.org. A phone conversation is recommended prior to attendance.

• Autism Speaks – New York (https://www.autismspeaks.org/tool-kit-excerpt/caring-caregiver)
  1 East 33rd Street, 4th Floor
  New York, NY 10016
  Phone: (646) 385-8543
  Phone (Autism Response Team): (888) 288-4762
  Phone (Español): (888) 772-9050
  Email: newyork@autismspeaks.org
  Email: help@autismspeaks.org
  Dedicated to creating an inclusive world where all individuals with autism can reach their full potential, Autism Speaks helps those with autism and their families through advocacy, services, supports, research and advances in care.
  On the Autism Speaks website there is the Caring for the Caregiver page that provides resources and tips on how a parent/caregiver can cope with their child’s Autism diagnosis. Included on the page are links to help find local and online support groups such as the searchable
  Autism Speaks Resource Guide (https://www.autismspeaks.org/resource-guide), the Autism Speaks Facebook page (https://www.facebook.com/autismspeaks/), the My Autism Team social network (https://www.myautismteam.com/), etc.

Brain Injury Association of America (https://www.biausa.org/public-affairs/media/virtual-support-groups)
3057 Nutley Street #805
Fairfax, VA 22031-1931
Phone: (703) 761-0750
Phone (Brain Injury Information Line): 1 (800) 444-6443
Email: info@biausa.org
As a primary authority on brain injury, the Brain Injury Association of America strives to advance awareness, research, treatment, and education of brain injury and to improve the quality of life of those affected by this diagnosis. Their website provides links to support groups for those with brain injury and their caregivers throughout the country, including national and state specific groups. The national support groups include, for example, a group for caregivers of those with severe brain injury called “Severe BI Caregivers” (www.severebicaregivers.com), and “Hope after Head Injury” (https://hopeafterheadinjury.com/), an online community for those with brain injury and their caregivers that offers virtual support groups, a Facebook support group, and a community newsletter.

• Brain Injury Association of New York State
  5 Pine West Plaza, Suite 506
  Albany, NY 12205
  Phone: 1 (518) 459-7911
  Phone (Family Helpline): 1 (800) 444-6443
  Email: info@bianys.org
  Website: (https://bianys.org/programs/support-groups/support-group-list/ )
  The Brain Injury Association of New York State provides education, advocacy, and community support services to help improve the lives of those with brain injury and their families. They offer chapters and support groups throughout the state, as well as a toll free family help line, prevention and professional development programs, and a video and publications library.
  On the website, there is a list of statewide virtual and county-specific support groups for caregivers and those with brain injuries. There are a few virtual support groups listed in Suffolk County, as well as an in-person group that meets in Bay Shore. See website for updated information on meeting dates, times, locations and contact information.

• Cancer Care (https://www.cancercare.org/tagged/caregiving)
  275 Seventh Avenue
  New York, NY 10001
  Phone (Hope Line): (800) 813‑HOPE (4673)
  Email: (info@cancercare.org)

• Cancer Care Long Island (https://www.cancercare.org/contact/long_island)
  819 Grand Blvd, Suite 3
  Deer Park, NY 11729
  Phone: (800) 813-HOPE (4673)
  Email: (liinfo@cancercare.org)
  Cancer Care is a leading national organization committed to providing free services to anyone affected by cancer, including resource navigation, counseling and support groups, educational workshops and publications, financial assistance, etc.  The Cancer Care website has a Caregiving page with links to information on recommended readings and podcasts, as well as workshops and support groups specifically for caregivers
  Cancer Care’s Live Caregiver Support Groups use a secure video platform with a telephone call-in option for those without access to video technology. They are free and are led by oncology social workers. Registration is required. To register, call the Cancer Care’s Hope Line to sign up for the next support group cycle. Cancer Care also has Online Support Groups that utilize a password-protected message board format and run for 15 weeks at a time. They are open to anyone in the United States, Puerto Rico and U.S. Territories. These groups are also free and are led by oncology social workers.  Registration is required. After completing registration, members can post in the groups 24/7.
   
• Caregiver Action Network (CAN) (https://www.caregiveraction.org/)
  1150 Connecticut Ave, NW, Suite 501
  Washington, DC 20036-3904
  Phone (Caregiver Help Desk): (855) 227-3640 (M-F, 8:00 AM – 7:00 PM Eastern time)
  Phone (Office): (202) 454-3970
  Email: info@caregiveraction.org 
  CAN is the nation’s leading caregiver organization that works to improve the lives of those who care for loved ones with chronic conditions, diseases and disabilities. They provide education, peer support and resources to family caregivers across the country, free of charge.
  The CAN website includes a wealth of information for caregivers, including the Caregiver’s Toolbox (https://www.caregiveraction.org/family-caregiver-toolbox) where caregivers will find tips and links to information and educational videos. There is the Finding the Right Support Group page (https://www.caregiveraction.org/finding-right-support-group), where caregivers are given advice on finding a group that meets their needs. There is also the Care Chat (https://www.caregiveraction.org/forum) where caregivers can ask questions and offer support. For caregivers who have questions or would like to talk with a caregiving expert, there is the Caregiver Help Desk (https://www.caregiveraction.org/helpdesk), available by phone, email and live chat.

• Day Haven Adult Day Services (https://www.dayhaven.org/training-and-caregiver-support)
  Ronkonkoma Location:
  2210 Smithtown Avenue
  Ronkonkoma, NY 11779
  Phone: (631) 585-2020
  Port Jefferson Location:
  400 Sheep Pasture Road
  Port Jefferson, NY 11777
  Phone: (631) 476-9698
  With their therapeutic activities, caring staff, and fun, supportive environment, Day Haven strives to enrich the daily lives of their participants. They provide a wide range of programs and activities for seniors including, for example, adult day services, respite care, Alzheimer’s and dementia-specific programming, personal care assistance and social opportunities, as well as educational events and support programs for families and caregivers.
  Day Haven offers caregiver support groups for families and caregivers of frail loved ones / someone with Alzheimer’s, which are led by professionally trained staff. Support groups are held both in-person (in Ronkonkoma), and virtually (through the Port Jefferson location) with free on-site care available during the meetings.  To confirm dates, times and locations, call Lori Maldavir at (631) 585-2020 x261.   

• Family Service League: Senior &  Caregiver Services (https://www.fsl-li.org/find-help/senior-caregiver-services/)
  Commack Office:
  74 Hauppauge Road.
  Commack, NY 11725
  Phone: (631) 724-6300
  Riverhead Office:
  Riverhead Family Center
  208 Roanoke Avenue
  Riverhead, NY 11901
  Phone: (631) 369-0104
  Email: restorehope@fsl-li.org
  With 20+ locations and over 60 social service programs, the Family Service League is dedicated to helping vulnerable Long Islanders meet their needs for shelter and food, mental health and addiction treatment, companionship and purpose, and more. With funding from the Department of Health and Human Services through the New York State and Suffolk County Offices for the Aging, the Family Service League provides a number of important services for seniors and their caregivers.
  The Family Service League’s Senior and Caregiver Services program includes, for example, informative and educational sessions, as well as group and individual counseling for caregivers of aging or elderly loved ones (available both in person and via Zoom) where caregivers can learn how to handle stress, better understand their options, and secure assistance that is available. These services are provided free of charge. For further information, contact the FSL Senior & Caregiver Services office in Commack or Riverhead (see above).

• National Alliance on Mental Illness (NAMI) (https://www.nami.org/Your-Journey/Family-Members-and-Caregivers)
  4301 Wilson Blvd., Suite 300
  Arlington, VA 22203
  Phone (Main): (703) 524-7600
  Phone (Member Services): (888) 999-6264
  Phone (Help Line): (800) 950-6264 (available M-F, 10am – 10 pm, ET)
  
  NAMI Central Suffolk Long Island (NAMI CSLI NY)  (https://namicsliny.org/)
  446 Willis Avenue #177
  Williston Park, NY 11596‌
  NAMI, the National Alliance on Mental Illness, is the nation's largest grassroots mental health organization and is committed to improving the lives of Americans affected by mental illness by providing advocacy, education, support and public awareness.
  NAMI offers programs and support groups for families and caregivers of those living with mental illness. For example, the Family-To-Family Program is a free, 8-session educational program where participants learn strategies for taking care of their loved one. There is also the Family Support Group, a peer-led support group where participants learn coping skills, find strength and acceptance, and gain support from others in a non-judgmental space.
  In Suffolk County, most support groups are held virtually. See the NAMI Central Suffolk Long Island website’s online calendar for details on meeting dates and times (and locations if applicable): https://namicsliny.org/calendar/.

• National MS/Multiple Sclerosis Society – Greater New York City / Long Island Chapter (https://www.nationalmssociety.org/Resources-Support/Find-Support)
  733 Third Avenue, 3rd Floor
  New York, NY 10017
  Phone: (800) 344-4867
  With their mission to “cure MS while empowering people affected by MS to live their best lives,” the National Multiple Sclerosis Society offers numerous programs and services for those living with the diagnosis, their families and caregivers.  Their website includes the Find Support Page where those in need can find information and resources, including finding local and virtual support groups and connecting with the National MS Society’s Online Communities. There are also MS Navigators available to answer questions, provide information, give support and crisis intervention and assist in locating local resources and support groups.

• Northwell Health (https://www.northwell.edu/support-and-resources/support-groups)
  South Shore University Hospital
  301 East Main Street
  Bay Shore, NY 11706
  Phone (Caregiver Support Group): (631) 968-3400
  Phone (Stroke Caregiver Support Group): (631) 675-3400 (contact Anthony Martino, CTRS)
  Northwell Health, a healthcare system that treats more than two million New Yorkers each year, helps “create a brighter tomorrow” for many residents. They provide care at their numerous hospitals and related facilities, and offer residents numerous programs and services.
  Northwell Health offers a variety of health related support groups across Long Island, with many groups open to caregivers. For example, the Caregiver Support Group meets at South Shore University Hospital in Bay Shore on the first Wednesday of each month from 6:30pm - 8:30pm. For more information, including updated dates and times, call (631) 968-3400. The Stroke Caregiver Support Group also meets at South Shore University Hospital on the first Wednesday of every month from 6:30-8:30pm in Board Room 1. For updated information and to RSVP, contact Anthony Martino, CTRS at (631) 675-3400. See the website for information on the many other support groups available at Northwell Health.

• Parent to Parent of New York State (https://www.ptopnys.org/)
  500 Balltown Rd.
  Schenectady, NY 12304
  Phone: (518) 381-4350
  Phone: (800) 305-8817
  
  Parent to Parent of New York State: Long Island Office
  415 A Oser Ave.
  Hauppauge, NY, 11788
  Phone: (631) 434-6196
  Parent to Parent of New York State is a statewide, not for profit organization that supports and connects families and caregivers of individuals with special needs. They help parents, family members and other caregivers connect with other individuals who are dealing with similar issues, provide information and referral to local resources and services, and offer online trainings and workshops, including, for example, Loss, Grief, and Adjustment for Parents of Children with Special Needs, as well as Preventing Parent Burnout for Parents of Children with Special Needs.
  Parent to Parent of New York State also provides a variety of virtual support groups for parents and other caregivers, such as the Statewide-Virtual Fathers Group, the Statewide Down Syndrome Parent group, the Long Island group for parents of children under 16, the Long Island group for parents of children 16 and older, and many more. For the Long Island support group meeting calendar, see https://www.ptopnys.org/calendar/category/long-island.

• Parker Jewish Institute for Health Care and Rehabilitation – Willing Hearts, Helpful Hands Program (https://www.willingheartshelpfulhands.org/)
  271-11 76th Avenue
  New Hyde Park, NY 11040
  Phone (toll free): (877) 727-5373
  Phone (Caregiver HelpLine): (516) 586-5107
  Email: WHHH@parkerinstitute.org 
  The Parker Jewish Institute for Health Care and Rehabilitation is a nationally recognized, non-profit health care and rehabilitation center for adults with a comprehensive network of community health care programs and an academic campus for the training of health care professionals. Support groups for caregivers on Long Island are offered through the Willing Hearts, Helpful Hands Program.
  ​​​​​​​The Willing Hearts, Helpful Hands Program is a program of the Parker Jewish Institute for Health Care and Rehabilitation in cooperation with partnering community organizations, and is funded by a grant from the New York State Department of Health. The program offers support to family caregivers of individuals with Alzheimer's disease and other dementias throughout Long Island. The program’s services are free and include support groups, as well as consultations, education and training programs, respite care, access to volunteer companions, and more. For more information call (877) 727-5373. To join a support group, call (516) 586-1507 or email WHHH@parkerinstitute.org. A list of local support groups can be found at https://whhh.webflow.io/services/willing-hearts-helpful-hands-support-groups.

• Renal Support Network (https://www.rsnhope.org/rsn-programs/)
  1146 N. Central Ave. #121
  Glendale, CA 91202
  Phone: (818) 543-0896
  Phone (Toll Free): (866) 903-1728
  Phone (HOPEline): (800) 579-1970 (Monday-Friday, 1pm -9pm ET)
  The Renal Support Network provides information and programs for those with chronic kidney disease, their family members and caregivers, including their Kidney Talk magazine, podcast and blog; a health library; live and virtual events; and much more. They also offer virtual support groups and a peer support phone line called the HOPEline.
  RSN’s Online Kidney Disease Support Groups (https://www.rsnhope.org/rsn-events/rsn-zoom-room-meetings/) meet monthly, providing attendees with support needed to cope with the life changes of kidney disease. Their HOPEline (800-579-1970) -- available Monday-Friday from 1pm -9pm ET -- connects callers with someone who has lived with kidney disease and can share their experiences. For more information on the HOPEline, go to: https://www.rsnhope.org/hopeline-kidney-disease-support-phone-line/.

• Stony Brook Medicine: Support Groups for Patients and Caregivers (https://www.stonybrookmedicine.edu/patientcare/supportgroups)
  101 Nicolls Road
  Stony Brook, NY 11794
  Phone (main): (631) 689-8333
  Phone (for program/support group information): (631) 444-4000
  Phone (for cancer support group information): (631) 638-0004
  Stony Brook Medicine, known for its exceptional patient care, biomedical research, and healthcare education, offers numerous programs for patients, their family members and caregivers, including a wide variety of support groups. For example, there is a general Caregiver support group, a group for Alzheimer’s disease caregivers, and many more. The website includes a full list of groups, each with specific locations and contact information. All programs are free, and registration is required.

• Stony Brook Medicine: Center of Excellence for Alzheimer's Disease (https://www.ceadlongisland.org/resources/suffolk-county/azheimers-support-groups)
  The State University of New York at Stony Brook University: Department of Psychiatry/Neuroscience Institute
  127 Putnam Hall
  Stony Brook, NY 11794-8790
  Phone: (631) 954-2323
  Stony Brook Medicine’s Center of Excellence for Alzheimer’s Disease is a NYSDOH-funded Alzheimer's Disease Program Initiative. Their mission is to provide Long Islanders living with Alzheimer’s disease, dementia and other dementia disorders an early diagnosis and an enhanced quality of life. Their website provides information on the disease, the latest research and clinical trials, links to local resources, and an ample list of Alzheimer’s and Dementia Caregiver support groups held across Long Island.

• Suffolk County Office for the Aging (https://www.suffolkcountyny.gov/aging/Caregivers)
  H. Lee Dennison Building, 3rd Floor
  100 Veterans Memorial Highway, P.O. Box 6100
  Hauppauge, NY 11788
  Phone: (631) 853-8200
  The Suffolk County Office for the Aging is the designated area agency on aging under the Older Americans Act, and it administers the federal, state and county programs for persons aged 60 and older. The office provides information, referral and assistance to senior citizens and their caregivers. The website includes a Caregiver page that provides a lot of information for seniors and their caregivers in Suffolk County, including information on caregiver support groups and the many other services available to residents. Those needing more information on the support groups should call the Office for the Aging (631-853-8200) or Family Service League (Commack: 631-724-6300 / Riverhead: 631-369-0104).
   
• The Well Spouse Association (https://wellspouse.org/)
  63 West Main St., Suite H
  Freehold, NJ 07728
  Phone: (732) 577-8899
  Phone: (800) 838-0879
  Email: info@wellspouse.org
  With their mission “to support spousal caregivers,” the Well Spouse Association provides support and advocacy for individuals caring for a spouse/partner who is chronically ill and/or disabled. The Well Spouse Association offers local/regional support groups and a private Facebook group, and publishes Mainstay, their quarterly newsletter. The current “local” group is based in Manhattan, but meets virtually on the 3^rd Tuesday of the month at 7pm. To attend, contact Jack at (212) 593-0981 or Steven at (917) 596-2707 / mannywsg@wellspouse.org for details. See website (https://wellspouse.org/articles/wsa-in-the-news/find-a-group-near-you.html) for more information.