Resources
Caregiver Companion-A Guide for the Family Caregiver of Cancer Patients
Release Date: 02/11/2026
There are many resources available for family carergivers. Sometimes it's hard to know just where to look. We want to provide access to as many resources as we can, and will keep this page upadted as we learn of nedw ones. If you know of some you want to share please write to us via our website www.caregivercompanion.libsyn.com
"Loving Support and Caring for the Cancer Patient" by Stan Goldberg
Fran's Place for Cancer Counseling www.centerforcancercounseling.org
Rosalyn Carter Caregiver Institute www.rosalyncarter.org
Family Caregiver Alliance www.caregiver.org
National Cancer Institute www.cancer.gov 1-800-4-CANCER
American Cancer Society www.cancer.org 1-800-ACS-2345
Cancer Care www.cancercare.org 1-800-813-HOPE
Caregiver Action Network www.caregiveraction.org 1-202-772-5050
In Season 3 Episodes 3 & 4 John and Fran talked about the state of public policy in caregiving around the world. Here are some resources....
Caregiving and Public Policy in USA and beyond
In July 2025 the American Association of Retired Persons (AARP) and the Caregiving Alliance published an article on the state of caregiving and caregivers in the United States. I have attempted to recap that article here, and to add additional facts about caregiving public policy in some other countries around the world.
As of 2025, there are 63 million family (sometimes referred to as ‘informal’) care givers in the United States. That is defined as an adult who is caring for a friend or family member with a medical condition or disability. That is roughly 1 in 4 Americans. That number has grown by 45% since 2015. The growth is primarily related to the aging baby boom population, and in increase in chronic medical or cognitive conditions requiring care. Those numbers are expected to grow. Of the 63 million caregivers, 59million are caring for an adult, while about 4 million are caring for a child. The estimated economic value of caregiving is $6 Billion annually.
The average caregiver is 51 years old, more likely to be a woman (61% are women), and spend on average about 27 hours per week in caregiving, with 24% reporting their caregiving is over 40 hours per week. About 40% of caregivers live with their patient, 32% get some paid outside help, and 53% rely on friends, neighbors, or family members.
The duties caregivers provide, and tasks they perform vary greatly. However, there are some key themes. 55% perform nursing related tasks, such as wound care, administering medications, monitoring vitals, giving injections, handling IV lines etc. The other primary role is patient advocate, with 70% coordinating with medical team, and about 2/3 communicating with Health Care Providers.
Most caregivers that are working age (18-64) have a regular job (70%). The tension between holding down a job and caregiving is evidenced by caregivers experiencing arriving late to work, leaving early, or otherwise taking time off to care for a loved one. Many caregivers experience physical, psychological and financial stress trying to balance work and caregiving. While caregiver friendly benefits have improved somewhat since 2015, There is a dearth of regulations in employment law surrounding caregiving. Most benefits are at employer discretion and vary among employers. Only 49% of caregivers have told their supervisors of their caregiving duties.
Caregivers are suffering from chronic fatigue, stress and compassion burnout. 20% rate their physical health as “fair” or “poor”. 25% say they have difficulty caring for themselves with 45% reporting physical symptoms. 64% of caregivers report high emotional stress.
There are some major gaps between the demands put on caregivers, and resources either available to, or used by caregivers to aid the. Over ½ of caregivers are performing some kind of nursing or medical task, however only 22% say they received adequate training to perform these tasks. While 70% of all working age caregivers are employed outside their caregiving duties, there are few regulations or employment law supporting flexibility in working arrangements for caregivers. In addition, 39% of caregivers self-report that some form of respite care would be helpful to them, yet only 13% use respite care. The reasons are many, however, trust and shame are the two main reasons caregivers do not use respite care.
So, what is being done to bridge these gaps between need and services? At the Federal level, within the United States, employees can take time off to care for a family member, up to 12 weeks, and have their job guaranteed upon their return (Family Medical Leave Act). However, this law applies only to employers with more than 50 employees, (only 4% of all employers have more than 50 employees), the time off is unpaid, and is limited to 12 weeks, which may or may not be enough time to care for a loved one. Medicare will now reimburse health care providers for the time they spend training and educating caregivers on basic nursing tasks. This should provide additional incentive for doctors’ offices to ensure caregivers walk out of the office with adequate training to care for their loved one. There is no universal paid leave policy in the US, although some states (8 currently) offer some partial paid leave for family caregivers, and/or tax credits to offset cost of expenses associated with at home caregiving. For Medicaid patients (Medicaid is a Federal/State health insurance program for qualifying low-income citizen), there is a partial direct payment program available for qualifying patients/caregivers.
In 2018, Congress passed the RAISE Family Caregiver Act. RAISE stands for Recognize, Assist, Include, Support Engage). An advisory council was formed and developed 5 strategies to address family caregiver issues. The 5 strategic areas are:
1. Increase awareness of family caregivers for available services, through outreach and education.
2. Build partnerships among non-profits, state and local governments
3. Strengthen the support services available to caregivers
4. Ensure financial and workplace security for caregivers
5. Expand research and study best practices in caregiver support
Eight years later, some progress has been made, but in the Us it is mostly a patchwork of programs varying by location, with a mix of direct payments, tax credits, governmental services, and non-profit services.
Since we have several podcast listeners from outside the US, I wanted to look at policies in countries outside the US, in hopes of seeing some best practices that could be applied universally. Un fortunately, what I found was a similar patchwork of programs and approaches that vary by country. Still, there is some good elements that all those working in public policy for caregivers could use.
Europe:
There is no universal program across EU countries, but rather programs that reflect the cultural norms of various countries. For example, Scandinavian countries are more likely to have community-based support that provide patient care. In Mediterranean Europe, the norm is for family members to care for a patient, so programs are structured to support the family caregiver.
Germany and Austria provide direct payments to family (referred to as ‘informal’) caregivers but is only a partial compensation. Some countries offer paid leave for caregivers, with Belgium the most generous, with up to 48 months of paid leave.
Spain and Germany also offer pension credits for time spent outside the formal workforce as a caregiver. This is an important piece, universally, of a caregiver’s financial security. With so many leaving the workforce to care for a loved one, they not only lose their current income, but also the retirement benefits that accrue to workers. Over the course of a lifetime, this could add up to hundreds of thousands of dollars.
Australia:
Australia’s major elements include providing workplace flexibility, respite care, and direct supplemental payments to caregivers. The major obstacle is overcoming workplace resistance to participate in support programs.
Canada:
Like the US, there are little universal policies at Federal level. Polices vary among provinces. Canada did pass the CARE Act, which provides tax credits, pension credits and a (lightly used) publicly funded home health care program, British Columbia, Manitoba and Nova Scotia provide some direct payments to Caregivers.
Japan:
Japan has mandatory long-term care insurance for every worker over 40 years. This ensures universal access to care services and lessens the burden on informal caregivers. They also rely on community based integrated care, which provides healthcare, housing, and nursing care in familiar surroundings. For the caregivers, Japan employs “Kaijo Cafes”, a place for caregivers to share experiences, find support among fellow caregivers and reduce the feeling of isolation.
Conclusion:
Informal caregiving is growing in the US and around the world, as the population ages and lives are extended with advances in medical care. For most people, the role of caregiver falls to family members. The percentage of adults caring for a sick or disabled family members range from 15% to 40% of adults across the globe. It is a growing force, and the problems associated with it are not going away. Some steps are being taken, albeit is slowly and in a patchwork, to help ameliorate the situation of caregivers. Policy makers, in local, state, regional or Federal levels of government, corporate human resource policy makers, health insurance industry, and healthcare field all have a part to play in improving the conditions and giving informal caregiving a viable, sustainable future. Individually, we are but a lone voice, but collectively, voices raised with those policy makers will bring this to light and make things happen. As a caregiver, you are over your head with responsibilities. Buit we all have friends, neighbors, family that are in those ‘outer rings’ of the concentric circle that can lend support. Getting them to advocate for caregivers can be a step to recognizing and supporting the work caregivers do, with the people that can do something about it.
https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/
https://www.gao.gov/assets/gao-20-623.pdf
https://www.beobachtungsstelle-gesellschaftspolitik.de/f/04d661be68.pdf
In Season 2 Episode 11 ...John and Fran talked about Fran's book "Losing Mom". You can find it on Amazon here....
Season 2 Episode 10 A Monster Calls
Fran and John spoke with Jenny McClintock, an educator and child of a cancer patient. Her drama class performed the play "A Monster Calls" about a 13 year old facing his mother's terminal illness. Below is a link to the performance
Season 2 Episode 9- Caregiving on PBS
John and Fran talked about the Caregiving Documentary on PBS, and wellbeings.org. Below are some links to these organizations
https://wellbeings.org/series/caregiving/
https://wellbeings.org/from-one-caregiver-to-another/
https://www.pbs.org/show/caregiving/
Season 2 Episode 7- Clinical Trials
Dr Wong referred to a few organizations that can be helpful in learning about clinical trials. We want to share those sites with you
National Cancer Institue (NCI) www.cancer.gov
American Society of Clinical Oncology www.asco.org
SWOG Cancer Research Network www.SWOG.org
European Society of Clinical Oncology www.esmo.org
National Comprehensive Cancer Network https://www.nccn.org/patientresources/patient-resources/patient-webinars/patient-webinar--clinical-trials
John and Fran talked about journaling in Season 2, Episode 1. Here is the book John is writing to his grandkids
In our discussion with Professor Yang about handling medications, she mentioned the following website to refer for medication handling information
https://oralchemoedsheets.com/index.php/sheet-library
In Episode 12...Caring for Your Child, Kristen mentioned Gold Rush Cure, a non profit advocating for children with cancer. Their mission is to provide hope and encouragement to children fighting cancer.
Their website is www.goldrushcure.org
And... Sage's latest song "Cold Country Woman" is here!
n Episode 8.... Nutrition, we spoke with Certified Dietitian Toni Marinucci. To get more information on nutrtion, diet and healthy eating , go to Toni's webiste
or check out her instagram page.
https://www.instagram.com/tips_with_toni?igsh=ZDZzaGhqMzg2bjE0
In Episode 7...Music Therapy Dr. Ravaglioli referred to the American Music Therapy Association as a reource. The website link is www.musictherapy.org
Dr. Ravaglioli's Music Therapy Practice can be found at www.raquelchristinemusic.com
She can also be reached through her email raquel.ravaglioli@biola.edu
In Episode 6... Caregiver as Collaborator, Emily suggested creating a binder or some means to keep and record important information. The link below is an example of the kinds of templates that are available to caregivers. This is just one example of many, but can give you an idea of what is available.
https://www.etsy.com/listing/1360870027/caregiver-planner-home-aide-tracker?ref=share_v4_lx
Some interesting recent articles on Caregiving
NY Times Article on Caregiving
NPR Article on Black Men Caregivers
Uber offers Help to Caregivers
Here are some recent books on caregiving to check out
Another interesting article on caregiving compexities for older unmarried couples