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Family Caregiving: Helpful Resources for Family Caregivers (FS689, Revised Oct. 2019)

One of the most important aspects of managing life as a family caregiver is accessing useful resources that can provide needed knowledge and skills. The list of helpful resources below provides information about educational materials and support organizations related to family caregiving. It is not exhaustive but instead provides a beginning point for those involved in family caregiving.

Sean Brotherson, Ph.D., Extension Family Science Specialist

Jane Strommen, Ph.D., Extension Gerontology Specialist; Philip Estepp, M.S., Extension Associate


Family Caregiving: Tips and Tools for You and Your Loved Ones

(iStock.com)

State-level Resources for Caregivers

In the U.S., many services and supports for caregivers can be accessed through state-level agencies or departments focusing on health, human services or aging. Selected resources are listed here for North Dakota. Search out the resources available in your state or region. 

  • North Dakota – Aging and Disability Resource LINK (ADRL): 1-855-462-5465

The North Dakota Aging and Disability Resource LINK (ADRL) is a toll-free number that provides all North Dakota residents and their family members with free information, counseling and links to services and supports available in your community. The CareChoice website, which is part of the North Dakota Aging and Disability Resource-LINK, can be accessed at: https://carechoice.nd.assistguide.net

  • North Dakota – Family Caregiver Support Program: 1-855-462-5465

The Family Caregiver Support Program: 1) helps eligible caregivers address challenges related to providing 24-hour care and 2) provides services including respite care, information about services and supports, training to assist caregivers to improve skills, individual or family counseling, and other services to complement the care provided by caregivers. Information on this program can be accessed at: www.nd.gov/dhs/services/adultsaging/caregiver.html

  • Regional Aging Services Program Administrator (RASPA): 1-855-462-5465

A RASPA is a professional in your area employed by the Aging Services Division who is familiar with local supports and services for older adults and people with physical disabilities. The RASPA can make home visits, meet you at a convenient location or talk by phone to connect you to available services. Call the ADRL at 1-855-462-5465 to connect with a RASPA to schedule an options counseling visit. Access the North Dakota Department of Human Services website to identify the RASPA for your region at: www.nd.gov/dhs/locations/regionalhsc/index.html

  • Options Counseling: 1-855-462-5465

Options counseling helps guide people and their families through options in services and supports that match their needs. Call the ADRL at 1-855-462-5465 to connect with a RASPA to schedule an options counseling visit.

  • Alzheimer’s Association: 1-800-272-3900

The Alzheimer’s Association provides free care consultation through the North Dakota Dementia Care Services Program to assist families in identifying needs, developing plans, finding resources and services, and obtaining education and ongoing support. Care consultation is available in person or on the phone across North Dakota. For information on the Dementia Care Services Program, call the ADRL at 1-855-462-5465. To schedule a time to meet with a care consultant with the Alzheimer’s Association, call 1-800-272-3900 or visit the website: https://www.alz.org

  • Veterans Health Administration – Caregiver Support Program (CSP)

The Veterans Health Administration CSP connects caregivers to resources within the VA system and in their local communities. Caregiver support coordinators (CSCs) provide and link caregivers to education, training, support groups, respite and in-home support services. For more information and to be connected with a CSC, please call 1-800-410-9723, ext. 9-3786 or 9-4507. You also may access information at : www.caregiver.va.gov

  • Home and Community-based Services (HCBS): 1-855-462-5465

HCBS include a variety of services and supports paid for by federal, state and local funding to allow people to stay in their homes. The HCBS services and supports are administered by the local county social service office or through other community providers, and a person’s functional ability and financial status determine if the person qualifies for help. Call the ADRL at 1-855-462-5465 to connect with these services and supports

  • NDSU Extension: 701-231-5948

North Dakota State University Extension provides research, resources, training and outreach on topics related to aging and caregiving. Education materials and resources may be accessed through NDSU Extension at: 

• Aging Well – www.ag.ndsu.edu/aging  

• Powerful Tools for Caregivers - NDSU Extension offers the Powerful Tools for Caregivers Program, a self-care education program that will provide caregivers with tools and strategies to better handle the unique caregiver challenges. – www.ag.ndsu.edu/aging/family-caregivers

National and Professional Resources for Caregivers

A variety of national-level resources and professional organizations provide support to caregivers. A few such resources and organizations are identified here. 

  • AARP

The American Association of Retired Persons (AARP) is a nonprofit, nonpartisan organization that works to address the needs and interests of middle-aged and elderly people in the U,S. Its membership is open to all people age 50 or older, whether working or retired. The website provides a host of resources for caregivers, including information on financial and legal issues, home care and caregiver life balance.  www.aarp.org/caregiving

  • Administration for Community Living (ACL) - U.S. federal government

The Administration for Community Living advocates across the U.S. federal government for older adults, people with disabilities, and families and caregivers; funds services and supports provided by states and networks of community-based programs; and invests in training, research, education and innovation. It manages a variety of programs that support and impact caregiving. To explore information about the resources and programs available, such as Aging and Disability Networks, access information online at: www.acl.gov/programs

  • American Society on Aging

The American Society on Aging is a nonprofit organization committed to enhancing the knowledge and skills of those working with older adults and their families. It provides a variety of publications and resources, as well as educational programs and diversity initiatives, and shares knowledge with the largest network of professionals in the field of aging. Learn more at:  www.asaging.org  

  • ARCH National Respite Network and Resource Center

The ARCH National Respite Network and Resource Center assists and promotes the development of high-quality respite and crisis care programs, and helps families locate respite and crisis care services. Learn more at: https://archrespite.org  

  • Family Caregiver Alliance (National Center on Caregiving)

The Family Caregiver Alliance is a nonprofit organization addressing the needs of families and friends providing long-term care for loved ones at home. The services, education programs and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information and tools to manage the complex demands of caregiving. Resources include online support groups, caregiver education and fact sheets. Learn more at:  www.caregiver.org 

  • Family Caregiver Council

The Family Caregiver Council focuses on providing helpful resources to caregivers on topics including technology, help, housing, finances, transportation and care. Learn more at: http://familycaregivercouncil.com  

  • The National Alliance for Caregiving

The National Alliance for Caregiving is a nonprofit coalition of organizations that focus on support of family caregiving through research, innovation, resources and advocacy. Learn more at:  www.caregiving.org  

  • The National Family Caregivers Association - Caregiver Action Network

The National Family Caregivers Association supports the Caregiver Action Network (CAN), a nonprofit family caregiver organization. It works 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. It provides education, peer support and resources to family caregivers. The website provides educational material for caregivers across a variety of situations and more: http://caregiveraction.org

  • Visiting Angels

Visiting Angels is a national network of home care agencies and providers. Those who work with Visiting Angels provide home care services for a variety of caregiving situations. Resources provided include caregiver information, caregiver selection, home care services, companion care, respite care and palliative care. Learn more at: www.visitingangels.com  

Online Resources for Caregivers

Many resources and support programs are available online to assist individuals in a caregiving situation. A variety of selected online resources and organizations are identified here. 

  • Caring.com

Caring.com is on an online resource site that provides practical advice from caregiving experts and seasoned caregivers for a wide range of topics, from senior hygiene to medication management, meal preparation, transportation and more. The site offers articles, tools, a supportive community and a directory of caregiving services. Learn more at: www.caring.com

  • Care Pathways

Care Pathways is an internet community created and maintained by registered nurses (RNs) dedicated to providing seniors and their families access to high-quality information and creditable services. In particular, it helps individuals locate options for senior care, home health care, selection of caregivers and related topics. It further helps individuals explore home medical and safety supplies, adult day care, senior transportation, hospice care, respite care and more. Learn more at: www.carepathways.com

  • Next Avenue

Next Avenue is an online resource site that provides a range of practical resources for those age 50 and older or who deal with caregiving needs. Articles, tools and resources provide news and up-to-date information. Learn more at: www.nextavenue.org

  • The Growth House

Growth House Inc. is an international gateway to resources for life-threatening illness and end-of-life care. The primary mission is to improve the quality of compassionate care for people who are dying. Growth House provides assistance through public education and global professional collaboration. Educational materials and resources are provided for the general public and health-care professionals. Those resources include books, articles, blogs and podcasts. Learn more at: http://growthhouse.org

  • The National Caregivers Library

The National Caregivers Library serves as an online clearinghouse to provide information and tools to caregivers and seniors. Resources are provided at no cost through alliances with professionals, businesses and organizations who serve seniors and caregivers. The library consists of hundreds of articles, forms, checklists and links to key resources related to caregiving. Learn more at: www.caregiverslibrary.org/home 

  • Videocaregiving.org

Videocaregiving.org is on an online resource site supported by Terra Nova Films that provides visual educational materials to family caregivers. The site focuses particularly on delivering short, simple and practical videos on a wide range of family caregiving circumstances and challenges. Topics addressed in videos include a range of caregiving issues and many specifically on Alzheimer’s disease and care. Learn more at:   www.videocaregiving.org

Disease-specific Resources for Caregivers

Caregiving often involves providing support and care to someone with a specific disease. Some leading resource organizations are listed below.

  • Alzheimer’s Association

www.alz.org

  • Alzheimer’s Foundation of America

https://alzfdn.org

  • American Diabetes Association

www.diabetes.org

  • American Parkinson Disease Association

www.apdaparkinson.org

  • National Osteoporosis Foundation

www.nof.org

  • Parkinson’s Foundation

https://parkinson.org

Conclusion

Most individuals have experience with providing care to young or adolescent children. But how do you go about taking over payment of the bills for a mother-in-law who has paid her own bills for much of her life? Or how do you know which items to buy at the grocery store when an aging sibling no longer can make the trip? Fortunately, an increasing amount of helpful information and useful resources are available to help caregivers reduce their stress and provide high-quality care.

Family caregiving presents challenges and opportunities. Caregivers, family members and others benefit as they identify useful resources and access them for information or support. Education and support are critical to enhancing the experience of family caregiving.

Filed under: family, adult development
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