for People with Dementia
The following is an alphabetical list of U.S.-based and International Caregiver Resources with links. Descriptions are derived from these organizations’ websites.
[Updated January 2017]
Scroll to the bottom to learn how to be listed or to revise your listing.
*ADMINISTRATION on AGING
The principal agency of the U.S Department of Health and Human Services designated to carry out the provisions of the Older Americans Act (OAA). The OAA promotes the well-being of older individuals by providing services and programs designed to help with independent living at home. The Act also empowers the federal government to distribute funds to the states for services for those over age 60 – including supportive and caregiver services, nutrition and health promotion programs, elder justice, adult protective services.
Voluntary health organization in Alzheimer’s care, support, and research. The Alzheimer’s Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
*ALZHEIMER’S DISEASE INTERNATIONAL (ADI)
ADI is the international federation of Alzheimer associations worldwide. ADI’s vision is prevention, care and inclusion today, and cure tomorrow. ADI works locally, by empowering Alzheimer associations to promote and offer care and support for people with dementia and their family carers, while working globally to focus attention on dementia and campaign for policy change from governments. ADI has been in official relations with the WHO since 1996 and has had consultative status with the UN since 2012.
*ALZHEIMER’S FOUNDATION of AMERICA (AFA)
The AFA provides education and support for individuals living with Alzheimer’s disease and their families and caregivers. The AFA funds research toward improved treatments and a cure. Unites more than 2,600-member organizations nationwide with the goal of providing optimal care and services for people living with dementia and their families and caregivers.
*ARCH NATIONAL RESPITE NETWORK AND RESOURCE CENTER
Assists and promotes the development of quality respite and crisis care programs. Helps families locate these services in their communities. Serves as a strong voice for respite in all forums. Includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community, the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels.
*CALIFORNIA’S CAREGIVER RESOURCE CENTERS
Every year, California’s 11 nonprofit Caregiver Resource Centers (CRCs), serve more than 14,000 families and caregivers of adults affected by chronic and debilitating health conditions including dementia, Alzheimer’s disease, cerebrovascular diseases (such as stroke or aneurysms), degenerative diseases such as Parkinson’s, Huntington’s and multiple sclerosis, or traumatic brain injury (TBI), among many others. The centers provide core services to families and caregivers ranging from counseling and care planning, to legal/financial consulting and respite, at low or no cost.
*CAREGIVER ACTION NETWORK (CAN)
The nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. A nonprofit organization providing education, peer support, and resources to family caregivers across the country free of charge. (Formerly the National Family Caregivers Association.)
For caregivers seeking information and support online. Personal, one-on-one guidance with a Family Advisor, thousands of original articles, helpful tools, a comprehensive local Senior Care Directory, and the collective wisdom of an involved community. Caring.com’s carefully researched and expert-reviewed content includes advice from a team of more than 50 trusted leaders in geriatric medicine, law, finance, housing, and other key areas of healthcare and eldercare.
Disclosure: Brenda Avadian, MA of The Caregiver’s Voice serves as an expert for Caring.com
Click to read The Caregiver’s Voice Review of Caring.com’s Steps & Stages program.
Online resource that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The site is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH). Information on ClinicalTrials.gov is provided and updated by the sponsor or principal investigator of the clinical study.
*DEMENTIA ALLIANCE INTERNATIONAL (DAI)
DAI is the world’s leading organization exclusively for people diagnosed with dementia. Its mission is to represent, support, and educate people living with the disease and the wider dementia community. DAI’s vision is a world where people with dementia are valued and included. It provides free online support groups and other activities for members, as well as educational webinars for everyone interested in dementia. It is registered as a 501(c)3 in the U.S.
A public service of the U.S. Administration on Aging connecting people to services for older adults and their families. Administered through the National Association of Area Agencies on Aging in Washington, D.C.
*FAMILY CAREGIVER ALLIANCE (FCA)®
The first community-based nonprofit organization in the U.S. to address the needs of families and friends providing long-term care for loved ones at home. The FCA champions the challenges caregivers face through education, services, and advocacy with support, tailored information, and tools to manage the complex demands of caregiving.
*HEALTHCARE and ELDER LAW PROGRAMS Corporation (H.E.L.P.)
A nonprofit organization that empowers older adults and their families with impartial information, education and counseling on elder care, law, finances and consumer protection so they may lead lives with security and dignity. H.E.L.P. provides information and referrals through telephone and walk-in services, educational website updates, free community classes, and short private legal consultations with volunteer attorneys.
*HOSPICE FOUNDATION of AMERICA
Provides leadership in the development and application of hospice and its philosophy of care. It aims to enhance the U.S. health care system and the role of hospice within it. Offers programs for professional development, public education and information. Funds research, produces publications, and provides information on issues related to hospice and end-of-life care.
*LEWY BODY DEMENTIA ASSOCIATION (LBDA)
Nonprofit organization raising awareness of the Lewy body dementias (LBD), supporting people with LBD, their families and caregivers, and promoting scientific advances. Through outreach, education, and research, LBDA supports those affected by Lewy body dementias.
The Mayo Clinic’s mission is to inspire hope and contribute to health and well-being by providing the best care to every patient through integrated clinical practice, education, and research. More than 3,300 physicians, scientists and researchers from Mayo Clinic share their expertise to empower patients. The needs of the patient come first.
*MedicAlert® + Alzheimer’s Association Safe Return®
A 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency. Assistance provided 24/7, no matter when or where the person is reported missing.
*MUSIC & MEMORY℠
MUSIC & MEMORY℠ is a nonprofit organization that brings personalized music into the lives of the elderly or infirm through digital music technology, vastly improving quality of life. Works with caregiving professionals, from aides to music therapists and nurses, along with family members, to create a powerful personalized music program for each person who chooses to participate.
*NATIONAL ADULT DAY SERVICES ASSOCIATION (NADSA)
Adult day service centers provide a coordinated program of professional and compassionate services for adults in a community-based group setting while giving caregivers a respite. Services are designed to provide social and some health services to adults who need supervised care in a safe place outside the home during the day. Click for directory of Adult Day Centers
*NATIONAL ACADEMY of ELDER LAW ATTORNEYS (NAELA)
Elder law and special needs planning includes helping families with planning for incapacity and long-term care, Medicaid and Medicare coverage (including coverage of nursing home and home care), health and long-term care insurance, and health care decision-making. NAELA members are attorneys based in the United States, Canada, Australia and the United Kingdom, who are trained and experienced in helping families draft special needs and other trusts, select long-term care providers, and solve home care and nursing home problems. They also help with retiree health and income benefits, retirement housing, fiduciary services, and more.
*NATIONAL HOSPICE and PALLIATIVE CARE ORGANIZATION
The largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. Committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
*NATIONAL INSTITUTE of NEUROLOGICCAL DISORDERS and STROKE (NINDS)
The National Institute of Health’s NINDS Dementia Information Page provides a comprehensive overview of dementia–what it is, prognosis, research, treatment, clinical trials, publications and more. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. Scroll down on page for “dementia.”
Mission to make life better for people with Parkinson’s disease by improving care and advancing research toward a cure. To build on the energy, experience, and passion of the global Parkinson’s community. In 2016, the National Parkinson Foundation and the Parkinson’s Disease Foundation merged to form the Parkinson’s Foundation
The Road Scholar Educational Travel Program is the nation’s largest nonprofit educational travel organization for adults. It offers 5,500 educational adventures in 150 countries and 50 states for individuals dedicated to lifelong learning. Participants are immersed in a variety of experiential learning activities, enlisting world-renowned faculty and local experts who offer insider access not available to most individuals.
Check out their Caregiver Grant program.
*THE CAREGIVER’S VOICE (TCV)
The independent voice for family caregivers and professionals helping people with dementia, including Alzheimer’s, vascular, Lewy bodies, Parkinson’s, frontotemporal lobe. Since 1998, TCV has been providing knowledge, strength, and joy for caregivers through Caregiver Tips, Caregiver Humor, Review of Caregiver Books and Products, Resources, Musings, Inspiration, and The Caregiver’s Voice Monthly Newsletter. Contact us for an expert caregiver speaker and/or writer for your organization.
*VA CAREGIVER SUPPORT
U.S. Department of Veterans Affairs
The Caregiver Support Program offers training, educational resources, and multiple tools to help caregivers who play an important role in the health and well-being of veterans.
To Revise Your Listing
Please copy and paste the original description as it appears on this page in an email to TCV@TheCaregiversVoice.com with the corrected version below the original. Submit within text box of email (no attachments). For expedited service, use “Please Revise TCV Resource Listing” in the Subject line. (Revision requests can only be made by an authorized organization representative who provides complete name, title, and direct telephone number.)
To Be Included in The Caregiver’s Voice Resource Directory
Each organization listed above has had or currently has a relationship with The Caregiver’s Voice. These include presentations at conferences, guest articles, webinars, radio and TV interviews. These collaborative ventures act as a means of vetting (albeit, subjective) in a virtual world. To request that your organization be considered for inclusion, please cut and paste the following three items and answer each in your email to TCV@TheCaregiversVoice.com.
- How have we worked together? (If available, direct links will help us expedite your request.)
- From a caregiver who wants to be informed, how does your organization compare and distinguish itself from the competition?
- Provide a brief description modeled after the above listings.
To fast-track your listing – if we haven’t yet worked together – you may choose to introduce your product/service to our website visitors while showing your support for The Caregiver’s Voice Mission. We recommend that you start with a sponsored guest post.
BONUS: We promote sponsored articles via our social media channels and consider them for inclusion in our monthly newsletter. Write to us at TCV@TheCaregiversvoice.com