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Finding Better Ways to Support Family Caregivers

Family caregivers are estimated to reach 37 million by 2050, an 85 percent increase from 2000. Of these, about 20 percent provide care to individuals with dementia. The number of individuals needing dementia care will rise from 4.5 million to 13.2 million by 2050. Of the 500,000 veterans with dementia, 155,000 sought care in 2006; this figure is expected to increase to 218,000 by 2017.

Caregiving is characterized by diverse challenges. Caregivers are at moderate risk for adverse outcomes in multiple domains, but not extreme risk in any one outcome. However, these multiple risks erode health and quality of life. Caregivers suffer more from depression and mental health problems than non-caregivers. Caregivers to individuals with dementia report more emotional, physical, social, and financial problems than other caregivers, and have increased risk of mortality.¹

Dementia Caregiving

Dementia caregiving has been the focus of recent federally funded studies and initiatives. The National Institute on Aging (NIA) and National Institute of Nursing Research (NINR) project, Resources for Enhancing Alzheimer's Caregiver Health (REACH II), was the first multi-site, randomized controlled trial to test the efficacy of a multi-component intervention for diverse racial/ethnic caregivers. The sixmonth REACH II intervention of 12 individual in-home and telephone sessions and five telephone support group sessions targeted areas linked to caregiver risk and quality of life: burden, emotional well-being, self-care/healthy behaviors, social support, and patient problem behaviors. Control caregivers received two brief phone calls.

Compared to controls, Latino/Hispanic and White/Caucasian intervention caregivers experienced significantly greater improvement in quality of life, as did Black/African- American intervention spouse caregivers. Clinical depression prevalence was also significantly lower for intervention caregivers.2

An underlying assumption was that the intervention would reduce caregivers' stress and improve their ability to manage behavior problems, leading to decreased time spent in caregiving activities. At six months there was a significant difference for intervention, compared to control, caregivers in reported hours providing care. The incremental cost effectiveness ratio showed that intervention caregivers had one extra hour per day not spent in caregiving at a cost of $5 per day.³

This time finding was borne out in the HSR&D-funded Memphis VAMC CONNECT study, a randomized clinical trial of telephone support groups vs. usual care for African-American/Black and Caucasian/ White dementia caregivers, who were either providing care to a veteran or were themselves a veteran. As in REACH II, the study focus was on caregiver burden, emotional well-being, self-care/healthy behaviors, social support, and patient problem behaviors. However, the intervention was delivered through a low staffing, low technology telephone support group model, with each group including a group leader and 5 to 6 caregivers. The 14 one-hour sessions over one year were semi-structured with education, coping skills, cognitive restructuring, and support components. On average, from baseline, intervention caregivers reported 0.46 fewer hours of caregiving time per day compared to usual care caregivers who reported 1.3 hours more.

In addition to caregiver outcomes, telephone support also improves patient cost outcomes. The HSR&D-funded, Telehealth Education Program (TEP) dementia caregiver telephone support/education intervention in VISN 2 has shown a significant health care cost savings of $2,768 per patient at six months. TEP was composed of 10 weekly telephone support groups covering topics similar to the REACH II trial but focused on spousal caregivers living with veterans with moderate to severe dementia.

Growing Federal Commitment

Results from studies like these have encouraged increased commitment by Congress and the VA to support caregivers. The Office of Geriatrics and Extended Care has convened recent workgroups to develop best practice recommendations for VHA concerning dementia training materials, clinical care, care coordination, and administrative practices. In FY08, Congress and the VA awarded nearly $4.7 million to eight caregiver assistance pilot programs to expand and improve health care education and provide needed training and resources for caregivers who assist disabled and aging veterans in their homes. One of these projects, REACH VA, is a clinical translation of the REACH II study that will provide services to 350 caregivers at 20 sites.

Finding better ways to support family caregivers, who are the largest source of longterm care services in the United States, is a major public health challenge. These projects highlight the VA's commitment to caregivers and VHA's leadership in research implementation, the translation of research findings into clinical practice and personal behavior.

References

1. Schulz R and L Martire. Family Caregiving of Persons with Dementia: Prevalence, Health Effects, and Support Strategies. American Journal of Geriatric Psychiatry 2004; 12:240-9.
2. Belle S, et al. for the REACH II Investigators. Enhancing the Quality of Life of Hispanic/Latino, Black/African-American, andWhite/Caucasian Dementia Caregivers: The REACH II Randomized Controlled
Trial. Annals of InternalMedicine 2006; 145:727-38.
3. Nichols L, et al. The Cost Effectiveness of a Behavior Intervention with Caregivers of Alzheimer's Patients. Journal of the American Geriatrics Society 2007; Dec 27 [Epub ahead of print].