RESOURCES
ALZHEIMER’S CAREGIVER SUPPORT
NATIONAL RESOURCES
Alzheimer’s Association
24/7 Help Line: 800-272-3900
This Chicago-based organization has chapters throughout the country, a range of services, education and support to those facing Alzheimer’s and other dementias throughout the area, including caregivers, health care professionals and families. The association offers community education programs (now online) for the general public; caregiver training and information about dementia; early-stage social engagement programs; family care consultations; and monthly caregiver support groups. The Alzheimer’s Association offers several online tools, including the Alzheimer’s Navigator (www.alzheimersnavigator.org), which helps caregivers create a personalized action plan; and ALZConnected (www.alzconnected.org), the association’s online message boards with more than 50,000 members who share their ideas and experiences 24 hours a day. In addition, the organization is the world’s largest nonprofit funder of Alzheimer’s research and sponsors a number of high-profile annual fundraising activities, including “The Longest Day,” its signature event that takes place during the summer solstice each year. The association’s TrialMatch program (www.alz.org/TrialMatch) is a free matching service that connects individuals living with Alzheimer’s, caregivers, and volunteers to local clinical trials seeking participants.
Alzheimers.gov
This new website of the National Institute on Aging is the federal government portal designed to educate and support people whose lives are touched by dementia. The site includes information and resources on an array of topics, including planning for the future, everyday care, home safety, changes in communication and behavior, and caring for yourself.
Alzheimer’s Foundation of America (AFA)
National Toll-free Help Line: 866-232-8484
The New York City-based foundation provides support and services to individuals, families and caregivers affected by Alzheimer’s and related dementias nationwide, as well as funds research seeking better treatments and a cure. It also offers educational webinars, caregiver support groups, an online Memory Screening Program and professional training for physicians AFA’s national network of more than 2,700 member organizations serves families affected by Alzheimer’s disease and other dementia-related illnesses in every state.
eCareDiary
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“Caregivers Speak!” is an online support group created by and for caregivers. Moderated by Margery Pabst, eCareDiary’s caregiving expert and author of Enrich Your Caregiving Journey. It airs live on the 2nd Tuesday of every month at 2:00 p.m. EST. Each month three caregivers share personal perspectives and what worked for them during a specific challenge. “Empowering Family Caregivers” airs live on the 1st and 3rd Tuesdays each month at 2:00 p.m. EST. Renowned authors and eldercare experts are interviewed. Caregiver and Physician Conversations airs live on the last Tuesday of each month at 2:00pm EST. Host Margery Pabst interviews physicians and experts on the challenges confronting patients and their families.
U. S. Department of Veterans Affairs
Toll-free 855-260-3274
Through the Caregiver Support Program, local Caregiver Support Coordinators can provide a full range of VA health care services for veterans with Alzheimer’s or other forms of dementia. Depending on a veteran’s needs, services may include home based primary care, homemaker and home health aide, respite care, adult day health care, outpatient clinic, inpatient hospital, nursing home, palliative care or hospice care.
Music and Memory
This nonprofit organization brings personalized music into the lives of the elderly or infirm through digital music technology, helping those with Alzheimer’s, dementia and other cognitive and physical challenges to reconnect with the world through music-triggered memories. The group teaches elder care professionals in local health care facilities, as well as family caregivers, how to create personalized playlists for care recipients through iPods and related digital systems.
Rosalynn Carter Institute for Caregiving
This nonprofit group, whose goal is to support caregivers through advocacy, education and service, offers a series of almost two dozen “Dementia Capability Webinars.”
LOCAL RESOURCES
Alzheimer’s Association, Long Island Chapter
Main office: 300 Broadhollow Rd., Suite LL100, Melville
Satellite office: Riverhead
24/7 Help Line: 800-272-3900
This organization has an active Long Island chapter that provides a range of services, education and support to those facing Alzheimer’s and other dementias throughout the area, including caregivers, health care professionals and families. The Alzheimer’s Association offers community education programs (now also online) on topics such as Understanding Alzheimer’s and Dementia, Effective Communication Strategies, Healthy Living for your Brain & Body, and Legal & Financial Planning. In addition, the association also provides caregiver training and information about dementia; early-stage social engagement programs; family care consultations; and monthly caregiver support groups. Also available are several online tools, including the Alzheimer’s Navigator (www.alzheimersnavigator.org), which helps caregivers create a personalized action plan; and ALZConnected (www.alzconnected.org), the association’s online message boards with more than 50,000 members who share their ideas and experiences 24 hours a day.
Alzheimer’s Disease Resource Center
631-580-5100
24/7 Toll-free Help Line: 855-732-4500
Main office: 200 Carleton Avenue, East Islip
Serving all of Long Island including Eastern Suffolk County, the ADRC works with family members, health care professionals and researchers to help provide quality care and support to people affected by Alzheimer’s Disease and other forms of dementia. ADRC offers caregiver training programs, as well as CEU courses for social workers, assisted living facilities and caregivers, including family members in the home. “We make it convenient for families and professionals to access training,” says Executive Director Lauren Vlachos. “We offer Zoom training, in-person, and onsite training.”
Long Island Alzheimer’s and Dementia Center (LIAD)
(Formerly the Long Island Alzheimer’s Foundation, or LIAF)
516-767-6856
1025 Old Country Rd., #115, Westbury
Recently rebranded with a new name to better convey its mission, the Westbury-based center offers programs for people in the early, moderate and late stages of the disease. LIAD’s highly regarded stage-specific adult day program is offered Monday through Saturday, from 10 a.m. to 2 p.m., including lunch and transportation with dementia-trained drivers. Also available are caregiver support groups and educational trainings, one-on-one counseling, an in-home respite program, Brain Fitness Workshops, physical and occupational therapy. A team of licensed social workers provides direct assistance to families, resources and trusted referrals, both in person or through telehealth services. LIAD also regularly hosts workshops, conferences and a variety of community events.
Parker Jewish Institute for Healthcare and Rehabilitation
Willing Hearts, Helpful Hands
www.parkerinstitute.org (Click "Services", then "Community Health Services")
516-586-1507
This caregiver support initiative provides free in-home consultations for family caregivers of those with Alzheimer's disease and other dementias, as well as in-person and telephone support groups; education and training programs at public libraries across Long Island, respite care; access to volunteer caregiver companions; and memory cafes, which bring together caregivers and people facing memory loss. The program is supported in part by a grant from the New York State Department of Health.
Stony Brook Center of Excellence for Alzheimer’s Disease
631-954-2323
South Campus, Putnum, Stony Brook
631-954-2323
One of 10 such centers in New York State, funded in part by the state health department, the center serves as a regional resource, offering up-to-date information about the disease; assisting family members by recommending resources and other caregiver support; and providing educational resources and experts who can assist primary care physicians and other medical specialty providers with the diagnosis of Alzheimer’s disease and other related dementias.
Caregivers also should consider these resources for listings of Alzheimer’s adult day care programs, support groups, and respite services: