family caregiver

Table of Content

• Caregiving Organizations
• Specialized Support
• Planning Guides & Tools

Caregiving Organizations

AgingCare

A website to support families. The site has an active online forum where caregivers can share their experience and learn from others by asking questions, giving answers, or participating in a group discussion.

Caregiver Action Network

CAN (the National Family Caregivers Association) provides articles, videos, and peer support to family caregivers across the country free of charge. They cover a broad range of topics from practicalities such as medication and nutrition management, to caregiver self-care to navigation of the medical system.

Family Caregiver Alliance

This non-profit’s mission is to improve the quality of life for caregivers and the people who receive their care. Their website has an online learning center and links to many other resources such as in-person support groups.

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Specialized Support

Alzheimer’s Association

For those caring for loved ones with Alzheimer’s, this website has clear and easy to access information on practical and emotional elements of caregiving.

American Cancer Society

The caregiver page of the website has an interactive caregiver resource guide, articles, and videos on cancer-related caregiver topics, online communities, and links to other support groups. 

Companioa from the Institute on Aging

A paid-for service, to support caregivers of loved ones with dementia. This service pairs you with a personal “Care Coach”, a trained dementia expert. The Care Coach helps assess your loved one’s needs, map out a care plan and meet with you bi-monthly to discuss the plan and your needs.

George Mark Children’s House

Life-affirming care and comfort for children with illnesses and their families.

Imerman Angels

Imerman Angels support cancer fighters, survivors, previvors and caregivers by matching them with a “Mentor Angel” – a cancer survivor or caregiver who has faced the same type of cancer and who can answer questions and provide one-to-one support.

Lorenzo’s House

Lorenzo’s House focuses on younger-onset dementia and revolutionize care in an industry where existing practices need profound reimagining.

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Planning Guides & Tools

A List to Reduce Work for Your Next-Of-Kin

This useful list and accompanying templates were kindly shared with us by Donna Woodward, a Hospice Volunteer and Dementia-care Volunteer. They will be particularly useful for friends or family in a caring role.

AARP Local Caregiver Resource Guides

AARP has put together local resource guides showing what support is available for family caregivers in different states and different cities.

How Do I Start My Advance Care Planning

A list of links to guides and toolkits for creating your Advance Care Directives.

Next Step In Care

Next Step In Care provides written guides and videos for family caregivers that help them through any medical treatment – from visiting the family doctor, trips to ER, hospitalization and discharge and Homecare.

This year we began a two-year project in partnership with the Palliative Care Team at the Palo Alto Medical Foundation (PAMF), which is part of the Sutter Health Network. The aim of the project is to introduce support sessions for family caregivers within Sutter Health. 

The project began with Zen Caregiving Project (ZCP) delivering four sessions to the Palliative Care Team in Palo Alto and San Mateo. These sessions covered self-care, managing difficult emotions, loss, and maintaining healthy boundaries. The sessions were a way of introducing ZCP’s teaching approach and content to staff, helping them to recommend the sessions to family caregivers in the future, and hopefully also provided support to the staff in their emotionally demanding work. 

The next stage of the project will be running our CAREgivers program for family caregivers in Sutter Health. The CAREgivers course consists of six one-hour sessions, run weekly. The sessions are drop-in providing flexibility for the caregivers with their often unpredictable schedules. Each session includes some teaching on a topic, a short guided meditation, activities, and an opportunity for sharing with other caregivers in the group. 

We are working with social workers from two Sutter Health locations to recruit for our first pilot course in October and are planning to run another three to four courses in 2022. We hope that these first courses, taught by ZCP instructors, will build awareness and demand for the CAREgivers program among the family caregiver population. Following completion of the ZCP-led sessions, we hope to train Sutter Health staff members in the delivery of the program as part of our established Train-the-Trainer program. In this way, we would ensure the sustainability of the program and continued support for family caregivers. 

For more information on this project, CAREgivers, or our Train-the-Trainer program, please contact us at education@zencaregiving.org.

Family Caregiver Alliance

This non-profit’s mission is to improve the quality of life for caregivers and the people who receive their care. Their website has an online learning center and links to many other resources such as in-person support groups.

Caregiver Action Network

CAN (the National Family Caregivers Association) provides articles, videos, and peer support to family caregivers across the country free of charge. They cover a broad range of topics from practicalities such as medication and nutrition management, to caregiver self-care to navigation of the medical system.

Better Health While Aging

Better Health While Aging provides actionable information for older adults and family caregivers, grounded in what geriatricians believe to be optimal healthcare for older adults.

AgingCare

A website to support families. The site has an active online forum where caregivers can share their experience and learn from others by asking questions, giving answers, or participating in a group discussion.

Alzheimer’s Association

For those caring for loved ones with Alzheimer’s, this website has clear and easy to access information on practical and emotional elements of caregiving.

American Cancer Association

The caregiver page of the website has an interactive caregiver resource guide, articles, and videos on cancer-related caregiver topics, online communities, and links to other support groups. 

AARP Local Caregiver Resource Guides

AARP has put together local resource guides showing what support is available for family caregivers in different states and different cities.

Imerman Angels

Imerman Angels support cancer fighters, survivors, previvors and caregivers by matching them with a “Mentor Angel” – a cancer survivor or caregiver who has faced the same type of cancer and who can answer questions and provide one-to-one support.

Next Step In Care

Next Step In Care provides written guides and videos for family caregivers that help them through any medical treatment – from visiting the family doctor, trips to ER, hospitalization and discharge and Homecare.

Companioa from the Institute on Aging

A paid-for service, to support caregivers of loved ones with dementia. This service pairs you with a personal “Care Coach”, a trained dementia expert. The Care Coach helps assess your loved one’s needs, map out a care plan and meet with you bi-monthly to discuss the plan and your needs.

RAISE

On September 22, 2021, the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council delivered its initial report to Congress.  It includes a comprehensive review of the current state of family caregiving and 26 recommendations for how the federal government, states, tribes, territories, and communities—in partnership with the private sector—can better Recognize, Assist, Include, Support, and Engage family caregivers. 

Download the RAISE Family Caregivers Act Initial Report to Congress.

To learn more about how the council developed this report, check out the Implementing the RAISE Family Caregivers Act factsheet.