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Unleashing the Power of Caregivers

Key Points

  • While caregivers play a critical role in supporting patient activities of daily living and improving medical outcomes, their well-being is largely ignored by the healthcare system.

  • RAISE Family Caregiving Advisory Council's 2022 National Strategy to Support Family Caregivers aims for healthcare teams to recognize, integrate, and support family caregivers.

  • Changes are needed within VHA to integrate caregivers into Veterans' care and to connect them to the evidence-based resources available through the Caregiver Support Program.

Family and friend caregivers (i.e., caregivers) are critical to good health, especially for older adults. Yet their roles, needs, and well-being are largely ignored within healthcare delivery.1,2 Caregivers decrease depression,3 support activities of daily living (including medical adherence), preserve autonomy, and improve medical outcomes.4 This support also delays or even prevents use of congregate living. Upwards of 55 million Americans provide unpaid care to an adult age 50 or older (National Alliance for Caregiving and AARP, 2020), caring for persons with chronic medical and mental illnesses, dementia, and traumatic brain injuries. The number of caregivers has dramatically risen in recent years because of the shortage of direct care workers, which is expected to continue.

Less than 50 percent of caregivers are asked about their roles and needs.1 One essential goal of the RAISE Family Caregiving Advisory Council’s 2022 National Strategy to Support Family Caregivers is for healthcare teams to recognize, integrate, and support family caregivers. To make this a reality, clinicians need new and better tools, such as culturally sensitive caregiver needs assessments that can be embedded into routine care. There are national efforts to acknowledge the critical role of the caregiver. Supported by AARP, 44 states have adopted the Caregiver Advise, Record, Enable (CARE) Act. The CARE Act requires hospitals to 1) record the name and contact information of the caregiver in the medical record, 2) inform the caregiver of the discharge date, and 3) provide the caregiver with education and instruction about medical tasks expected to be performed following discharge. As a federal agency, VHA does not fall under the jurisdiction of these state laws.

Though VHA offers substantial support for Veteran caregivers, it does not routinely or systematically identify caregivers. When the caregiver’s name and contact information is collected, the information is listed in different locations as unstructured data not readily accessible to clinicians.1 Within the electronic health record, there is no structured feld to designate and identify the caregiver. Veterans may choose to identify a next of kin or secondary next of kin, yet the next of kin should not be assumed to be the Veteran’s caregiver. Caregiving relationships are complex, and many Veterans may have different caregivers who assume different roles. Veterans may also designate a durable power of attorney for healthcare, but this too may not be the caregiver who provides day-to- day assistance. To integrate caregivers into the Veteran’s care, frontline clinicians need easy access to each caregiver’s name and role.

Efforts exist within VHA to identify the needs of Veteran caregivers, yet this information also is not accessible. VHA has a caregiver self-assessment tool, but the tool is online and is not integrated into any VA data source (Caregiver: Self-Assessment ( The VA Caregiver Support Program offers substantial support services to Veterans’ caregivers, but the evaluation and supports provided through the program are separate from the healthcare teams that care for Veterans. Caregivers must refer themselves or be referred by their healthcare team to the Caregiver Support Program. Needs assessments completed by the Caregiver Support Program can offer rich information about the experiences of both the Veteran and the caregiver. However, this information is recorded in unstructured notes in the electronic health record.

Thus, frontline clinicians are left to search through years of clinical encounter records to determine whether anyone has ever assessed and documented the caregivers’ roles, responsibilities, and needs and to determine whether those needs have ever been addressed.

HSR&D is a leader in funding caregiver research, including Partners in Dementia Care, a care consultant intervention. Partners in Dementia Care assessed the needs of persons with dementia and their caregivers and then created action plans and coached them to connect with resources to meet their needs and build their support network. The research established that the intervention was effective in decreasing unmet needs, stress and strain, and symptoms of depression for both caregivers and the persons receiving care. The research was foundational in its recognition by the Administration for Community Living and has been implemented in more than 50 sites in and outside VHA.

To support Veteran caregivers, VHA must identify how best to engage caregivers in all clinical environments. Hospital GamePlan4Care: A Web-Based Delivery System for Dementia Caregiver Support, a recently funded career development award jointly funded through VA and the National Institute on Aging, seeks to support and engage caregivers of hospitalized Veterans living with dementia. The intervention will adapt a community-based dementia caregiver support program to incorporate tailored care transitions training and support for caregivers. In addition to dementia research, HSR&D has funded caregiver research to address those with other chronic neurological and medical conditions.

Structural changes in VHA are critical to integrate caregivers into Veterans’ care and to connect them to the evidence-based  resources available through the Caregiver Support Program and ongoing research studies. Implementing the CARE Act within VHA would be an important frst step, but alone, this step is insuffcient to meet the goals of the 2022 National Strategy to Support Family Caregivers. As the largest integrated healthcare system in the United States, VHA can be a leader in ensuring that frontline clinicians have the information needed to connect caregivers to evidence- based services, supports, and clinical trials. Additional steps should include 1) ensuring that caregiver information is collected and recorded in a format that is easy for frontline clinicians to access, 2) developing a systematic assessment of caregiver needs and consistent facilitation of action plans across clinical settings, and 3) integrating the caregiver into the healthcare team.

  1. Davis ML, et “Taking Care of the Dyad: Frequency of Caregiver Assessment among Veterans with Dementia,” Journal American Geriatric Society 2019; 67(8):1604-9.
  2. 2022 National Strategy to Support Family The Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council & The Advisory Council to Support Grandparents Raising Grandchildren 2022 National Strategy to Support Family Caregivers (acl. gov).
  3. Burley CV, Burns K, Lam BCP, Brodaty “Nonpharma- cological Approaches Reduce Symptoms of Depression in Dementia: A Systematic Review and Meta-analysis,” Ageing Research Reviews 2022; 79:101669. Epub 2022 Jun 14.
  4. Lindeza P, et al. “Impact of Dementia on Informal Care: A Systematic Review of Family Caregivers’ Perceptions,” BMJ Supportive and Palliative Care 2020 Oct 14:bmjsp- care-2020-002242.

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