Resources

As caregivers and patient advocates, many emotions can surface from day-to-day, week-to-week. Some of these feelings hit us immediately and some not for a while. No matter when they show up, it is important to remember that you are important. All of your emotions are valid, whether you or anyone else perceives them as good or bad. We hope the stories on 1 Day 1 Week will help you feel comforted, validated and informed.

There are also other excellent resources on the internet to assist caregivers, patient advocates and people in need of their support. Below is a brief list you may find interesting and helpful.

Services

Family Caregiver Alliance

Coping

Legislation, Task Forces & Reports

  • Credit for Caring Act of 2021 (U.S. Congress pending legislation) – This bill allows an eligible caregiver a tax credit of up to $5,000 for 30% of the cost of long-term care expenses that exceed $2,000 in a taxable year. The bill defines eligible caregiver as an individual who has earned income for the taxable year in excess of $7,500 and pays or incurs expenses for providing care to a spouse or other dependent relative with long-term care needs.
  • RAISE Family Caregivers Act 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. 
  • AARP Caregiving in the U.S. (2020) – Report shows that 1 in 5 Americans (21.3 percent) are caregivers. This represents 53 million adults, up from 43.5 million in 2015. Among caregivers, 24 percent are doing so for two or more individuals.
  • The Commonwealth Fund – A report that addresses the questions: Community-Based Long-Term Services and Supports: Are the Needs of Older Adults and Their Caregivers Being Met?
  • State Family Caregiving Task Forces – Since 2014, 12 states have created family caregiving task forces through legislation or executive order. These task forces draw in stakeholders with lived experience and professional expertise to take inventory of existing programs and recommend actions that improve caregiver supports. Many of the reports from task forces highlight the challenges caregivers face and how new policies and programs can assist family caregivers.
  • Palliative Care Advisory Task Forces – Many states have created a palliative care advisory council or other advisory groups through legislation and identified tasks the group should complete. The composition and goals of these groups vary by state; for individual state information, view or download NASHP’s chart.
  • Inventory of Key Family Caregiver Recommendations (an analysis by Wendy-Fox Grage) – To assist the RAISE Act Family Caregiving Advisory Council make its recommendations, NASHP collected and analyzed about 800 recommendations from 27 key family caregiving reports written in the past decade. NASHP synthesized and inventoried the recommendations in this resource, with support from The John A. Hartford Foundation and in collaboration with the US Administration for Community Living.

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