Care for the Caregiver

Are you a family caregiver? If you provide regular and unpaid care to a loved one, you are a family caregiver. Caregivers need care too. It's why we created the Care for the Family Caregiver initiative. The goal? Offer information, resources and support that caregivers need to avoid becoming care recipients.

We recognize that:
  • The number of care recipients and caregivers grows daily. There are nearly 44 million family caregivers in the U.S.—nearly one in every three people. With aging Baby Boomers, shorter hospital stays and longer life expectancies, this number will grow.
  • Family caregivers are often the forgotten or silent patients. Many caregivers endure physical, emotional and economic challenges without adequate support. Most need help in order to maintain their own health and quality of life.

EmblemHealth's Care for the Family Caregiver initiative recognizes the health needs of the "silent patients" and is designed to serve as a resource. We encourage you to see us as a supportive partner in your caregiving journey.


 

What is a Family Caregiver?

People who step in to help friends, relatives, neighbors or life partners with health problems or disabilities are family caregivers. This help ranges from grocery shopping, help with personal grooming, and meal preparation to providing financial support and basic assistance with medical needs. 

Did you know:

  • About 25 percent of American families (nearly 66 million Americans) serve as unpaid caregivers to adult family members, special needs children, life partners and others in need. Most provide care to a family member, typically a parent who is over the age of 50.
  • Fourteen percent of care recipients are between ages 18 and 49.
  • If caregivers were paid on the open market for their services, society would have to spend about $375 billion.
  • More than half of caregivers are women and nearly four in ten are men.
  • Caregivers spend an average of 20 hours per week on caregiving; additional time is needed when the care recipient has more than one disability.
  • Caring for a person with disabilities can be physically demanding. This is especially true for older caregivers.
  • One-third of all caregivers describe their own health as fair to poor. Caregivers may have depression and are more likely to become physically ill.
  • Caregivers often worry that they will not live longer than the person they care for.
  • In 1900, average Americans could expect to live just 47 years. Today, life expectancy is 75 years, but chronic illness is common in the later years. As a result, older people now require about two years of care prior to death.

 

Sources: 
National Alliance for Caregiving and AARP. Caregiving in the U.S. Funded by MetLife Foundation. U.S. Department of Health and Human Services. RAND White Paper,. Living Well at the End of Life.

Care for the Caregiver Information and Resources

Improving Family Caregivers' Health & Wellness
Take care of your own health and well-being. You can do this by taking steps to:

  • Visit our Facebook Page for ideas, information and connections that can make your role easier.
  • Join a support group or take part in family, community and spiritual activities.
  • Get regular checkups and eat a healthy, sensible diet.
  • Find time for physical activity. Even a short daily walk can help you maintain your physical health, lower your risk for certain disease and improve your mood.
  • Ask for help! Remember, you are not alone. Identify ways to take time away from your caregiving duties and seek help whenever you need it. It will also help you maintain your own personal health and well-being.

 

Tips for Family Caregivers. This helpful and informative tip sheet is available in EnglishSpanishRussian and Mandarin

 

Care for the Family Caregiver: A Place to Start: EmblemHealth published this comprehensive guide to help ease the family caregiving experience. Inspiring and supportive, this is an excellent starting place for all caregivers. The guide is also available in Spanish and Chinese.

 

Caring for Me; Caring for You: This play aims to raise awareness about family caregiving and its challenges. The DVD version and its companion playbill continue to encourage meaningful discussion among family caregivers.

 

SAGECAP — Tips for LGBT Caregivers: This information card from SAGE offers LGBT caregivers ways to navigate their current and future needs in areas of end-of-life decisions, finances, in home and long term care issues, just to name a few.

 

Share the Care: Seven Principles for Team Building: Share the Care promotes a team effort in providing support to a loved one who needs help. Dividing the responsibilities among a team of helpers allows the recipient to get appropriate care without any one person burning out.

 

Six Spiritual Principles of Caregiving: Friends In Deed provides free emotional and spiritual counseling for people who are living with a terminal or life-threatening illness, and their family and friends. The six principles that guide their counseling techniques appear on this card as a handy reference for making the best of challenging life events.

 

Spiritual Conditioning — Ten Affirmations to Support the Family Caregiver: Positive statements can help one take charge and move from a negative state of mind to a positive and creative one. The affirmations on this card are meant to help family caregivers meet their unique set of challenges with hope and grace.

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.

 

National Family Caregiver Support Program
The National Family Caregiver Support Program (NFCSP), established in 2000, provides grants to States and Territories, based on their share of the population aged 70 and over, to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible.

 

Eldercare Locator
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
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  https://www.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  https://www.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 care giving 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 policy makers, 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  https://www.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

 

Caring Kind NYC
CaringKind* is New York City’s leading expert on Alzheimer’s and dementia caregiving. With over 30 years of experience, we work directly with our community partners to develop the information, tools and training to support individuals and families affected by dementia.
We offer a 24-hr Helpline (646) 744-2900 run by professional staff; individual and family counseling sessions with licensed social workers; a vast network of support groups; education seminars and training programs; early stage services and a wanderer’s safety program. We believe in the power of caregiving and seek a world where everyone dealing with dementia has the support they need, when they need it.

 

DOROT
DOROT's educational and support network for caregivers is called Caregivers' Connection. Among other things, this resource provides support groups, workshops and classes. There is a very nominal registration fee for Caregivers' Connections and participation in certain programs.



NYC Department for the Aging
This site includes links to a number of helpful resources for family caregivers, including Benefit QuickCheck, a tool that makes it easy for caregivers to get information on benefits and services that may be available to help older New Yorkers in need.



New York State Office for the Aging
Users can access a list of "general caregiving resources" and search for other resources for seniors from the State of New York. The site also includes information for "Grandparents and Kinship Caregiving,"  Programs for Families and Caregivers and extensive lists of both state and national caregiving resources.

 


The ARCH National Respite Network and Resource Center 
The site’s National Respite Locator is an interactive tool to help caregivers locate respite services in their community. A respite service provides temporary care to children or adults with disabilities, or chronic or terminal illnesses.



ChaplainsOnHand 
ChaplainsOnHand from HealthCare Chaplaincy Network provides online spiritual comfort for the seriously ill and their family caregivers ̶ whoever you are, whatever you believe, wherever you are. Spiritual distress can raise questions about the meaning of a new or ongoing health crisis and affect you physically and emotionally, too.



The Department of Health and Human Services—Administration on the Aging
In addition to a robust collection of information for older adults, caregivers and professionals, the Administration on Aging (AOA) site includes a tool that allows users to get information on state agencies on the aging and available local resources. 



Medicare.gov: the Official U.S. Site for Medicare
Visit for information on caregiving topics, condition-specific resources, financial and legal support options, a discussion board and more.

 

National Counsel on Aging
Among the caregiving resources accessible on this site is BenefitsCheckUp®, a screening tool that directs users to location-specific benefits possibilities.

 


Share the Care
The site provides information on local training seminars, workshops and lectures designed to improve both caregivers' and care recipients' quality of life.

 

Talking Alternatives
Through mediation, this firm helps families who are struggling with caregiving, to resolve their conflicts through communication. Talking Alternatives aims to help resolve disagreements by ensuring that all family members express their ideas and concerns and in turn are heard by all whom are involved. 


VideoCaregiving
Chicago-based Terra Nova Films' Visual Education Center for Family Caregivers offers free online videos providing information on a range of topics like: caregiving and recovery after a stroke; how to approach a discussion about nursing homes; caregiving and Alzheimer's; how to lift and transfer a person who is bedridden and more.
 

AAA(National Association of Area Agencies on Aging)
This is a resource we’d like to highlight at a national level.  You’ll see that the link brings you to a page that allows you to input your location, and it provides you with local resources that may be helpful to members.

 

Other Key Resources 

Resources for Caregivers-2007 Edition (PDF)

Aging Parents & Common Sense – 5th Edition (PDF)

Aging Parents & Common Sense Resource Directory (PDF)

Supports for Single Parent Caregivers Literature Review (PDF)

Caring Today, Planning for Tomorrow (PDF)

Planning for Your Retirement and Long-Term Care (PDF)

Are you caring for a loved one with Alzheimer’s or another form of dementia? These resources may be helpful to you. 

 

Alzheimer’s Association
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 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 www.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. To learn more about AFTD, visit  www.theaftd.org.

 

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 behavioural symptoms. It dramatically affects an estimated 1.4 million individuals and their families in the United States. To learn more, visit www.lbda.org.

 

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. 

 

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. 

 

National Cancer Institute
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.

 

Cancer Experience Registry – Caregiver
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 www.cancersupportcommunity.org 
The Cancer Support Community Helpline provides emotional and educational services for all people affected by cancer and their family caregivers.

 

Cancer Support Community Affiliates & Support Groups for Caregivers 
The Cancer Support Community Affiliate Network consists of 44 licensed affiliates, 170 locations and a growing number of healthcare partnerships.

 

American Cancer Society – Caregivers Page
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.

 

Help for Cancer Caregivers 
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

Autism Speaks

Brain Injury Association of America

Easter Seals

Epilepsy Foundation

Global Genes

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)

The Arc

United Cerebral Palsy

  • Introduction to the World of Family Caregiving
  • The family caregiver, also known as the “silent patient,” holds an important role in the world of caregiving.
  • Families of Origin, Families of Choice
  • We are all part of a family, whether it is a family of origin (birth family) or a family of choice (friends, neighbors, social group, face groups, etc.).
  • The Many Faces of Family Caregiving
  • There are many faces of caregiving. Caring for seniors; seniors raising grandchildren (kinship); caring for those with end-of-life issues in the middle of life; long-distance caregiving; caring for persons with disease-specific needs or chronic conditions; children as family caregivers; caregiving for veterans. Often, caregivers are caring for more than one person ("the sandwich generation").
  • Maintaining the Physical
  • There are resources that can help make caring for yourself and others easier.
  • Maintaining the Emotional
  • Professional support groups are available to help you maintain your emotional balance.
  • Maintaining the Spiritual
  • Spiritual guidance can help you walk with the care recipient — not into their lives.
  • Grief
  • You are not alone. There are resources available to help you with the grief of losing someone you are caring for.
  • The Gifts of Family Caregiving
  • Use your caregiver expertise to plan ahead for your own future caregiving needs.

For many years, EmblemHealth has been working closely with experts on family caregiving, from financial advisers to community leaders.

In this video series — hosted by Greg Johnson, Senior Advisor for Family Caregiving — these experts give practical advice on how to manage your caregiving responsibilities.

Military and Veteran Caregiving

Family Caregiving Legal and Financial Issues

The Emotional and Spiritual Worlds of Family Caregiving

The Physical World of Family Caregiving

Next Step in CareTM, an initiative of the United Hospital Fund, helps family caregivers and health care professionals work better together. This set of online tools is designed to improve the quality of care patients receive, especially during their move from one care setting to another.

Since many patients with chronic illness or long-term disabilities move frequently between hospitals, rehabilitation facilities, nursing homes and home, Next Step in Care helps family caregivers and practitioners work together to improve the patient's care during the transition. This also means that patients will have fewer hospital readmissions by improving medication management and promoting better outcomes.

EmblemHealth partnered with the United Hospital Fund to support the essential role the family caregiver plays in their loved one's overall care.

Visit Next Step in Care | Learn More About the United Hospital Fund

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