An intervention that targeted modifiable stressors in the home of patients with dementia resulted in better outcomes for the patients and their caregivers at 4 months, but not at 9 months, although the caregivers perceived greater benefits, according to a study in the September 1 issue of JAMA.
Among the more than 5 million persons in the United States with dementia, most live at home, and are cared for by family members. With disease progression, families increasingly provide hands-on physical assistance with activities of daily living (ADL), with this often resulting in heightened caregiver distress. "Trials of antidementia medications show few if any benefits for physical function or caregiver burden and have substantial adverse effects," the authors write. "Optimal treatment to postpone functional decline in patients with dementia is not established."
Laura N. Gitlin, Ph.D., of Thomas Jefferson University, Philadelphia, and colleagues designed the Care of Persons with Dementia in their Environments (COPE) trial to test a nonpharmacologic, biobehavioral approach to support physical function and quality of life for patients with dementia and the well-being of their caregivers. "The COPE program targeted modifiable environmental stressors to decrease sensorial, physical, and cognitive demands and align with patient capabilities and also ruled out underlying medical conditions that could lead to reduced patient functioning. The intervention sought to re-engage patients in daily activities and increase functionality, thereby alleviating caregiver burden," the researchers write.
The trial included patients with dementia and family caregivers (community-living dyads [two individuals regarded as a pair, such as a husband and wife]) who were recruited from March 2006 through June 2008. Of 284 dyads screened, 270 (95 percent) were eligible and 237 (88 percent) randomized. Data were collected from 209 dyads (88 percent) at 4 months and 173 (73 percent) at 9 months. The intervention consisted of up to 12 home or telephone contacts over 4 months by health professionals who assessed patient capabilities and deficits; obtained blood and urine samples; and trained families in home safety, simplifying tasks and stress reduction. Control group caregivers received 3 telephone calls and educational materials.
The researchers found that there were statistically significant improvements in functional dependence for COPE patients at 4 months compared with control group patients. Improvement occurred mostly for instrumental activities of daily living (IADLs), and COPE patients improved slightly more in ADL functioning than controls, but this was not statistically significant. There were also small but statistically significant improvements in engagement for COPE compared with control patients.
COPE caregivers, compared with control group caregivers, reported improvement in well-being and enhanced confidence using activities. Of 112 caregivers (53.8 percent) reporting 1 or more caregiver-identified problems eliminated by 4 months, 64 (62.7 percent) were COPE caregivers and 48 (44.9 percent) were control group caregivers.
The researchers did not find statistically significant differences between the COPE group and the control group participants at 9 months for any outcome measure. "However, COPE compared with control caregivers reported a 'great deal' of improvement in their lives overall, disease understanding, confidence managing behaviors, made life easier, ability to care for patients, patients' quality of life, and ability to keep patients home."
"Because most patients live at home with functional decline, a nonpharmacologic, biopsychosocial-environmental intervention may positively contribute to disease management. Future research needs to examine effects of underlying medical conditions, ways to boost treatment effects, cost-effectiveness, COPE in combination with pharmacologic treatments, and translational potential," the authors conclude.
Explore further: Funding for pulmonary rehabilitation study in East Africa
More information: JAMA. 2010;304:983-991.