Reprinted from The National Alliance for Caregiving
One of the toughest yet most loving responsibilities is that of caregiver.
The National Alliance for Caregiving partners with other caregiving associations and groups to provide additional resources to help family caregivers address and cope with the challenges of caring for a loved one. We’ve got a list to get you started:
Are you a family caregiver in need of information or assistance? Are you interested in learning more about the programs and services that may be of assistance to you or your loved one? The Eldercare Locator, a public service of the U.S. Administration on Aging, is the first step to finding resources for older adults in any U.S. community. Just one phone call or Website visit provides an instant connection to resources that enable older persons to live independently in their communities. The service links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers.
Next Step in Care
Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients.
Lotsa Helping Hands
Lotsa Helping Hands is a free caregiving coordination web service that provides a private, group calendar where tasks for which a caregiver needs assistance can be posted. Family and friends may visit the site and sign up online for a task. The website generates a summary report showing who has volunteered for which tasks and which tasks remain unassigned. The site tracks each task and notification and reminder emails are sent to the appropriate parties.
Caring.com is the leading online destination for family caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. Caring.com offers helpful content, advice from leading experts, a supportive community of caregivers, and a comprehensive directory of eldercare services. 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.
- Caring.com’s Steps & Stages offers a free guide to Alzheimer’s care. Expert advice and practical tips provided in a Custom Care Guide and e-newsletter help family caregivers learn what to expect, what to do, and how to cope with Alzheimer’s.
- Caring.com also publishes findings from research with family caregivers at caring.com/about/news.
Financial Steps for Caregivers
WISER (Women’s Institute for a Secure Retirement)
Financial Steps for Caregivers: What You Need to Know About Money and Retirement is designed to help you identify financial decisions you may face as a caregiver. The decision to become a caregiver can affect both your short-term and long-term financial security, including your own retirement. For more information on planning for a secure retirement, please visit wiserwomen.org.
National Transitions of Care Coalition
The last concern most individuals have when they or their loved ones are dealing with a health situation is ensuring effective communication between their doctors, nurses, social workers and other health care providers. However, poor communication between well-intentioned professionals and an expectation that patients themselves will remember and relate critical information that can lead to dangerous and even life-threatening situations. NTOCC has brought together industry leaders who have created resources to help you better understand transitional challenges and empower you as part of the caregiving team.
Family Caregiver Alliance
Established in 2001 as a program of Family Caregiver Alliance, the National Center on Caregiving (NCC) works to advance the development of high-quality, cost-effective policies and programs for caregivers in every state in the country. Uniting research, public policy and services, the NCC serves as a central source of information on caregiving and long-term care issues for policymakers, service providers, media, funders and family caregivers throughout the country.
Caregiver Action Network
Resources from the Caregiver Action Network, including a Peer Forum, a Story Sharing platform, the Family Caregiver Tool Box and more. CAN also provides support for rare disease caregivers at rarecaregivers.org
U.S. Food and Drug Administration, Office of Women’s Health
Tips for Caregivers
FDA Office of Women’s Health understands caring for a loved ones can be rewarding, but challenging. FDA’s Tips for Caregivers website provides tools to help caregivers manage the care of their loved ones. The website provides tips for caregivers of older adults, young children, teens and people with special needs. The website also highlights 7 tips for all caregivers to know. FDA Office of Women’s Health also provides information on women and clinical trials. To learn more, visit: fda.gov/womeninclinicaltrials
Alzheimer’s & Dementia Caregiving
Are you caring for a loved one with Alzheimer’s or another form of dementia? These resources may be helpful to you.
The Alzheimer’s Association works on a global, national and local level to provide care and support for all those affected by Alzheimer’s and other dementias. They offer help through a professionally staffed 24/7 Helpline (1.800.272.3900), face-to-face support groups and educational sessions in communities nationwide, and comprehensive online resources and information through the Alzheimer’s and Dementia Caregiver Center.
Alzheimer’s Foundation of America
The Alzheimer’s Foundation of America offers a national, toll-free helpline (866-232-8484) staffed by licensed social workers, educational materials, a free quarterly magazine for caregivers and “AFA Partners in Care” dementia care training for healthcare professionals. For more information about AFA, call 866-232-8484, visit alzfdn.org.
The Association for Frontotemporal Degeneration (AFTD)
AFTD promotes and funds research into finding the cause, therapies and cures for frontotemporal degeneration. They also offer information, education and support to persons diagnosed with an FTD disorder, and for their families and caregivers.
The Lewy Body Dementia Association (LBDA)
LBDA works to raise awareness of Lewy body dementias (LBD), promoting scientific advances, and supporting people with LBD, their families, and caregivers. LBD is a complex disease that can present a range of physical, cognitive, and behavioral symptoms. It dramatically affects an estimated 1.4 million individuals and their families in the United States.
Alzheimers.gov – For the People Helping People with Alzheimer’s
Resources from the Administration for Community Living on Alzheimer’s disease and other forms of dementia.
National Institute on Aging: Alzheimer’s Disease Education and Referral Center
Resources from the National Institutes of Health on Alzheimer’s disease and other forms of dementia, including information on clinical trials and current advances in scientific research.
U.S. Department of Veterans Affairs: Dementia Care (including Alzheimer’s)
For those caring for a Veteran, resources on dementia care through the VA and information on new research on dementia in Veterans.
Are you caring for a loved one with cancer? These resources may be helpful to you.
Family caregivers may be spouses, partners, children, relatives, or friends who help the patient with activities of daily living and health care needs at home. Many cancer patients today receive part of their care at home. Hospital stays are shorter than they used to be, and there are now more treatments that don’t need an overnight hospital stay or can be given outside of the hospital. People with cancer are living longer and many patients want to be cared for at home as much as possible. It is important that the family caregiver is a part of the team right from the start. These resources are about adult family caregivers in cancer.
The Cancer Experience Registry is a unique online community that allows people facing cancer to share their experiences, identify the issues that impact their lives, take surveys, access resources and learn from each other. It is free, confidential and open to anyone who has been diagnosed with cancer or provides care to a cancer patient.
Cancer Support Community Helpline: 1-888-793-9355 or to chat live at cancersupportcommunity.org
The Cancer Support Community Helpline provides emotional and educational services for all people affected by cancer and their family caregivers.
The Cancer Support Community Affiliate Network consists of 44 licensed affiliates, 170 locations and a growing number of healthcare partnerships.
A cancer diagnosis affects close friends and family too. Find out what to expect if you become a caregiver for a person with cancer, and get tips for making sure that you take care of yourself as well. Resources available include information and support on How to Care for Someone with Cancer, Taking Care of Yourself as a Caregiver, How to Be Supportive to Someone with Cancer, When Your Child has Cancer, and a list of American Cancer Society Support Services and Programs for families who are managing cancer.
A collaboration of Anthem, Inc., CancerCare, Caregiver Action Network, Indiana University and Michigan State University, this website provides resources and news on caregiver caregiving.
Caregiving for Persons with Disabilities
ALS (Amyotrophic Lateral Sclerosis) Association
Autism Society of America
Brain Injury Association of America
Muscular Dystrophy Association
ALS (Amyotrophic Lateral Sclerosis) Association
National Alliance on Mental Illness (NAMI)
National Down Syndrome Society
National MS Society
National Organization for Rare Disorders (NORD)
United Cerebral Palsy