November is National Family Caregivers Month. Family caregivers, or “informal” caregivers, are unpaid individuals (i.e., spouse, partner, or family member) who assist with activities of daily living (i.e., eating, bathing, or dressing) and/or medical tasks (i.e., taking medication or doing required exercises). According to the 2015 Report Caregiving in the U.S., produced by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute (PPI), approximately 34 million Americans provided unpaid care to an adult age 50 or older in the prior 12 months. Caregivers spend an average of 25 hours per week providing care, but this increases to nearly 45 hours per week for the spouse or partner of a care recipient. In addition, nearly 16 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia.1
The NAC/AARP Report states that more than five million caregivers provide care for former or current military personnel in the United States, and more than 20% care for someone who served since the terrorist attacks of September 11, 2001. Their research also shows differences in care recipient needs between Veterans post-9/11, pre-9/11, and civilians. For example, 75% of Veterans post-9/11 needed help from his/her caregiver to cope with stressful situations compared to 49% of pre-9-11 Veterans and 53% of civilians. There also were significant differences in the depression status of caregivers; for example, 38% of caregivers caring for post-9/11 Veterans met the criteria for probable depression compared to 20% of caregivers providing care for pre-9/11 Veterans and 20% of caregivers providing care for civilians.2
With an increasing number of Veterans requiring some form of caregiving or assistance, there is a growing need for evidence-based research that supports family and/or informal caregivers. Studies funded by VA's Health Services Research & Development Service (HSR&D) address many aspects of the informal caregiver’s role, such as emotional support, access to services, and in-home safety. In addition, VA HSR&D’s Quality Enhancement Research Initiative (QUERI) supports the Optimizing Function and Independence QUERI program that works with the VA Caregiver Support Program (CSP) to promote functional ability for Veterans – and to avoid nursing home placement through caregiver training at the time of referral for home care services (see project HI-FIVES, Helping Invested Families Improve Veterans Experiences Study). The QUERI Caregiver Support (VA-CARES) Evaluation Initiative also works with CSP to evaluate short-term impacts of the Program of Comprehensive Assistance for Family Caregivers and the Caregiver Support Services Programs.
Following are descriptions and findings from several specific research projects conducted by HSR&D and QUERI investigators on issues critical to improving quality of caregiving for Veterans, as well as the experience of the caregivers.
The Program of Comprehensive Assistance for Family Caregivers (PCAFC) supports caregivers of Veterans from the post-9/11 era who need assistance with activities of daily living (ADLs) or supervision or protection because of the residual effect of injuries sustained during their service. A monthly stipend to caregivers ranges from $600-$2,300 per month depending on Veterans’ care needs. Required caregiver training covers topics such as: caregiver self-care, nutrition, exercise, caregiving skills (e.g., taking vital signs, infection control), home safety, support groups, and respite. As of September 2015, more than 27,000 family caregivers were enrolled in PCAFC at a cost of over $1 billion. In this study, investigators examined the early impact of PCAFC on VA healthcare utilization and costs. The treatment group consisted of Veterans (n=15,650) whose caregivers were approved for participation in PCAFC since its inception (May 2011) through March 2014. The control group included Veterans (n=8,339) whose caregivers applied by March 31, 2014 and were not approved (most common reasons included caring for a Veteran injured before 9/11 or caring for a Veteran with non-service-related illness/injury). Study outcomes focused on VA healthcare use and total costs. Results of the study show:
Implications: Findings suggest that comprehensive supports for family caregivers can increase patient engagement in outpatient care in the short term, which may enhance long-term health outcomes.
Van Houtven C, Smith V, Stechuchak K, et al. Comprehensive support for family caregivers: Impact on Veteran health care utilization and costs. Medical Care Research and Review. April 1, 2017; Epub ahead of print.
RESCUE Stroke Caregiver Website Enhances Discharge Planning for Veterans
Caregiver depression is common following a family member's stroke and is a major contributor of the survivor's hospital readmission and institutionalization. Problem-solving interventions are effective in reducing caregiver depressive symptoms; however, these interventions have been underused in practice because they involve multiple sessions and are time-intensive for caregivers and staff. To overcome these barriers, our long-term goal is to implement stroke caregiver programs that involve sustainable, low-cost interventions in routine clinical practice.
This ongoing multi-site, randomized controlled trial is testing an online intervention for caregivers helping Veterans who have suffered a stroke. RESCUE (Resources & Education for Stroke Caregivers’ Understanding & Empowerment) includes web-based education, as well as skills training. The intervention is delivered during one post-discharge telephone session, followed by in-home sessions delivered online via a messaging center. The primary aim of the study is to test the effect of the intervention on stroke caregivers’ depressive symptoms at 11 and 19 weeks following baseline data collection. Investigators also will examine the effect of the intervention on stroke caregivers' knowledge, sense of burden around their caregiving role, perceptions about positive aspects of caregiving, self-efficacy, and health-related quality of life. Investigators also plan to determine:
Investigators hypothesize that stroke caregivers who receive the intervention will have fewer symptoms of depression compared to stroke caregivers in usual care.
Implications: This is the first known study to test a transition-to-home intervention combined with technology to improve the quality of caregiving and the recovery of Veterans. Other outcomes will include a state-of-the-art website and an evidence-based model (in-patient, discharge planning and online, training and caregiver-provider messaging) that can be transferable to other disease models.
Note: Based on lessons learned from this study, Dr. Magaly Freytes, part of HSR&D’s Center of Innovation on Disability and Rehabilitation Research (CINDRR), has recently begun an HSR&D Merit study, “Spanish Online and Telephone Intervention for Caregivers of Veterans with Stroke,” which uses the Spanish version of the RESCUE website.
Approximately half a million Veterans have dementia and approximately 80% of these individuals receive care at home from informal caregivers. This study team developed and evaluated two caregiver programs that are unique in that they are relatively brief (i.e., 3 months) and rely solely on telephone administration. The original program – the Telehealth Education Program (TEP) – provides caregiver support, psychoeducation, and skills training in a group format. The second program adapted the original TEP to be delivered to individual caregivers and includes collaborative care management services. Key components of this program include direct collaboration among teams of care managers, primary care providers (PCPs), and caregivers. The decision to develop an individually-tailored, collaborative care program was partly in response to the success of collaborative care models with other patient populations – and the fact that the majority of individuals with dementia receive their healthcare from their PCPs. What remains to be determined, therefore, is whether modifying the individually-delivered care management program to deliver TEP in a group format is more effective than the individually-delivered program alone. Thus, the current project includes:
This ongoing, prospective, randomized controlled trial will include 405 caregivers (spouses and children 18 years of age and older) of Veterans diagnosed with dementia who receive routine clinical care at two VA sites. Caregivers will be randomly assigned to usual care, the individual intervention, or the individual + group intervention. The main objectives of both interventions are to facilitate resource connection and provide education, psychosocial support, and care management for individuals caring for Veterans with dementia, thereby improving access to and use of non-institutional services, rates of guideline adherent care, and both caregiver and recipient outcomes. In both interventions, caregivers will receive education, continuous support, skills training, and monitoring of Veterans' medication adherence, symptoms, and service needs. Subsequently, caregivers will be asked to complete an assessment battery of standardized measures of caregiver and recipient characteristics. Veterans' clinical medical records (including cost data) also will be evaluated.
Thus far, findings from a pilot study suggest that caregivers receiving care management reported significantly greater reductions in distress due to patients' dementia-related and neuropsychiatric symptoms compared with caregivers in usual care. Additionally, caregivers in the intervention reported significantly larger improvements in their ability to cope and caregiving mastery. No significant group differences were found in caregiver burden or patients' dementia-related symptom frequency or severity over time.
Implication: Initial findings suggest that caregivers of Veterans with dementia may benefit from a telephone-delivered, care management program in improving caregiver-related outcomes.
Mavandadi W, Wright E, Graydon M, et al. A randomized pilot trial of a telephone-based collaborative care management program for caregivers of individuals with dementia. Psychological Services. February 1, 2017;14(1):102-111.
The 12-month prevalence of chronic neck pain is estimated to be between 30%-50%, and is especially common in adults older than 50 years. The impact of chronic neck pain is widespread, exerting negative effects on individuals' physical, psychological, and economic well-being; it is the fourth leading cause of disability in the United States. Chronic neck pain reduces functional status, quality of life, and is associated with deleterious psychological outcomes, including depression and anxiety. Chronic neck pain also is a major reason for healthcare utilization, accounting for more than 10 million ambulatory medical visits per year.
Safer alternatives to conventional pain treatments such as NSAIDS (non-steroidal anti-inflammatory drugs) and opioids are needed, especially in older adults. Existing studies show massage is safe for all ages--it has few risks if it is used appropriately, and serious adverse effects are rare. For example, in a review of complementary health approaches for neck pain, massage reduced pain and/or disability more than usual medical care (such as NSAIDs and exercise), physical therapy, or no treatment. Massage is theorized to work through a variety of mechanisms to relieve pain, including: 1) increased local blood circulation; 2) improved muscle tone; 3) increased joint flexibility; 4) heightened relaxation response; and 5) changed neuroendocrine and inflammatory status implicated in pain generation and sensitivity.
Despite its safety and potential benefits, the expense associated with massage therapy makes it inaccessible to most Veterans. The national average cost for a massage is approximately $60/hour, and is primarily an out-of-pocket expense that is rarely covered by health insurance and not affordable to most Veterans. Teaching informal care allies to provide massage (care ally-delivered massage) has been most commonly applied and found effective for patients with cancer. Care ally -delivered (or care ally-assisted) massage also has been tested in the context of pediatric, obstetrical, and long-term care settings for dementia with promising outcomes. While massage therapy is offered at some VA healthcare settings it is not widely available. Thus, this study has three objectives:
Study participants will be randomized to one of three study groups: 1) care ally-assisted massage, 2) therapist-treated massage, or 3) waitlist control group (continue medical care as normal). Outcomes assessments will be completed at baseline, 1, 3, and 6 months.
Implications: This study tests an innovative approach (care ally -delivered massage) to improve access to a high-demand and promising treatment for chronic neck pain and its associated comorbidities (i.e., depression, anxiety, and PTSD). Further, this study tests the capacity of informal caregivers to deliver massage and supports individuals in a novel caregiving role. This study also has strong implementation potential, and innovates by placing caregivers in a treatment delivery role that has the potential to reach a greater number of Veterans with chronic neck pain, while also producing substantial cost-savings.