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Commentary

VA's Commitment to Caregiver Support in Action

VHA first implemented its Caregiver Support Program in 2007, to support Public Law 109-461,¹ which instructed VA to “carry out a pilot program to assess the feasibility and advisability of various mechanisms to expand and improve caregiver assistance services.” Implementation of these pilots occurred against the backdrop of early National Alliance for Caregivers (NAC) and AARP studies² that illustrated the growing number of family caregivers, particularly as the U.S. population ages. From 2007-2011, thousands of caregivers participated in various VA programs, and VA eventually implemented Resources to Enhance All Caregivers Health (REACH) and Building Better Caregivers³ to support Veterans, and their families and caregivers.

The wars in Iraq and Afghanistan resulted in a new cohort of Veterans with catastrophic injuries, many of whom are now being cared for by family members at home. These caregivers worked with Congress to pass Public Law 111-163,⁴ the Caregivers and Veterans Omnibus Health Services Act of 2010, which provides an unprecedented level of direct services and supports to family caregivers of Veterans. VHA quickly pivoted from piloting a few programs to implementing two full-scale national programs – the Program of Comprehensive Services for Family Caregivers (PCAFC) and the Program of General Support Services for Caregivers (PGCSS). In 2018, Congress expanded availability of PCAFC to all family caregivers of eligible Veterans, regardless of the era when they served.

VA’s work to operationalize caregiver support has not been without challenges. One key challenge is balancing the requirements of a given program with the specific needs of the family caregivers. While the original pilot programs focused on supporting caregivers without requiring caregivers to complete an application or undergo an assessment, the implementation of PCAFC has required a strong focus on assessing Veterans and their individual needs for assistance. Because the level of assistance an individual Veteran requires is not always indicative of how much assistance or support a family caregiver requires, this can lead to frustration and confusion on the part of the family caregiver, and can even create, on occasion, an adversarial relationship between the caregiver and the Caregiver Support team.

As an example, in the early stages of Alzheimer’s or other related illnesses, a caregiver is likely working full time, may not understand the disease or its trajectory, and may also struggle to share the news with other family members. The care recipient is likely confused, focused on their independence, and significantly less worried about their safety than the caregiver. In this circumstance, the caregiver may need many more resources, additional support, or extra training. On the other hand, a caregiver who has somewhat mastered the daily tasks of caring for an individual in the later stages of the disease may need grief support.

The support needed by a family caregiver is very individualized and having to implement a “one size fits all” approach has had operational challenges. These challenges continue to be met, however, through partnership, innovation, an expansion of the PGCSS, and a much deeper understanding by VA of the role of family caregivers. The recent addition of “caregivers” to VA’s Mission Statement, “to fulfill President Lincoln’s promise to care for those who have served in our nation’s military and for their families, caregivers, and survivors,” demonstrates VA’s commitment to supporting not only Veterans, but also their caregivers.

An additional challenge in meeting the needs of caregivers is to ensure a balance of support services for family caregivers. Caregiver support programming can be divided into two buckets. The first bucket involves support programming that addresses the challenges associated with the new role and responsibilities placed on family members, i.e., “how” to be a family caregiver. Programs that offer support, either professional mental health or peer support, fall into this bucket. In addition, programs that teach goal setting, communication skills, anger management, and self-care often help caregivers at various transition points during their caregiver journey. The other bucket is more focused on the “what,” i.e., the actual hands-on skills needed to support their loved ones. Programs in this bucket include teaching skills through hands on training and videos; examples include supporting a transfer from a wheelchair, wound care, how to take a blood pressure, when to call the doctor, when to call 911, how to manage difficult behaviors, including de-escalation, and suicide prevention. Many programs offered by VA, such as Building Better Caregivers,⁵ include approaches that incorporate both the “how” of becoming a family caregiver and the “what” in terms of skills training.

An important area of focus for VA researchers should be on how we can better support the Veterans in our care who are caregivers themselves. A recent AARP study found that almost one in five Americans is a family caregiver.⁶ As a large, integrated healthcare system, VA treats more than nine million Veterans – therefore, we can assume that many Veterans must be caring for their spouse, or adult disabled child, neighbor, or friend. For example, is there a screening question we should be asking during primary care visits? While we may be limited in what supports and services we can provide to Veterans who are caregivers, are there community resources we can provide? Are there policy changes we can make so that Veterans who are caregivers can get access to some of the world class caregiver programming VA offers?

In summary, VA has led the United States in developing and implementing comprehensive programming to support family caregivers. VA research can help to individualize supports and services to better meet the needs of family caregivers and tailor programming to caregivers versus the needs of the Veterans they care for. In addition, VA research can lead in identifying ways to support family caregivers within healthcare systems through identifying interventions to support Veterans as they support their family members.

References

1. 461.pdf (house.gov), Veterans, Benefits, Health Care, and Information Technology Act of 2006
2. Microsoft Word - 40CF471C-3264-085D9B.doc (caregiving.org), Caregiving in the US, National Alliance for Caregiving and AARP (April 2004)
3. Program of General Caregiver Support Services (PGCSS) - VA Caregiver Support Program
4. 163.pdf (house.gov)
5. (National VA BBC page (buildingbettercaregivers.org)
6. AARP, Public Policy Institute, Valuing the Invaluable 2023 Update Strengthening Supports for Family Caregivers, March 2023.