A recent study in the Gerontologist examined the impact of an intervention for adult child caregivers of persons with dementia on their placement in residential care facilities. This intervention focused primarily on enhancing social support in order to facilitate the well-being of the caregiver, since previous studies have demonstrated a number of adverse effects of dementia on caregivers. These include impaired physical health and immune system response, financial strain, decrease in social well-being, and increased symptoms of depression and anxiety. This intervention was based on the New York University Caregiver Intervention (NYUCI), which was originally developed for spouse caregivers of individuals with Alzheimer’s or related dementia, and had been found to enable caregivers to postpone nursing home admission for their spouses. This original intervention was adapted for adult child caregivers to broaden the potential impact of the intervention and to best meet the unique needs of an adult child caregiver. This adapted intervention, called the New York University Caregiver Intervention for Adult Child Caregivers (NYUCI-AC), addressed some key differences in spousal and adult child caregivers. Spouses have been shown to be more likely to live with the individual with dementia, and to be more emotionally invested and morally obligated to provide care, while adult child caregivers are often juggling multiple life responsibilities like a job and raising their own children in addition to their caregiving duties. Both interventions are premised on the possibility that certain negative aspects of dementia caregiving are modifiable, which could lead to better outcomes in areas such as emotional stress and depressive symptoms for the caregiver.
In this study, 107 adult child caregivers were randomly assigned to the NYUCI-AC intervention or to a control group. In order to be eligible for the study, participants had to identify as a primary caregiver and visit the care recipient at least once a week. Almost all caregiver participants were female, Caucasian, and had at least a high school education (94 percent). The average age of the participants was 51 years, and all of the participants were employed at the start of the study. At the start of the study, all of the participants also reported moderate to high levels of stress and depressive symptoms. While on average one community/psychosocial service was being used at the start of the study, almost half of the participants (48 percent) were not using any service at that time. The parents with dementia being cared for averaged a score of five on the Global Deterioration Scale, which indicates moderately severe cognitive decline.
The NYUCI-AC has three components: individual and family counseling, support group participation, and ad hoc counseling. During the four-month-long intervention, participants were asked to undergo six counseling sessions. Three of these were individual counseling sessions with just the caregiver, and three included at least one family member. These counseling sessions were individualized according to the needs of the caregiver, but their overall focus was aimed at providing education and psychosocial support. Participants were encouraged to take advantage of social support from family and friends, and the researchers reported that support was also enhanced through improving interactions between family members and by helping family members better understand each other’s needs. Counseling was made available in person, by telephone, and via e-mail. After the four-month intervention, follow-ups were regularly conducted with all participants for at least two years.
Overall, once all study follow-ups were completed, 51 percent of individuals with dementia had entered a 24-hour residential care setting, and 36 percent had passed away. Of those deceased individuals, 18 percent did so prior to entering residential care. Comparing the intervention group to the control group, almost twice as many participants in the control group placed their parent in 24-hour residential care compared to the NYUCI-AC group. Participation in NYUCI-AC was also associated with a significantly longer delay in admitting the parent with dementia into 24-hour long-term care. The average time from the start of the study to admission for the NYUCI-AC participants was 972 days, compared to 743 days for those in the control group, an average difference of 228 days.
In addition to the potential emotional costs of admitting a family member to residential care, the delay and lower likelihood of admission for NYUCI-AC participants has significant financial implications for families; the average annual out-of-pocket costs for assisted living services is over $41,000. In light of the much higher use of nursing homes by individuals with dementia and the cost of such care for Medicare and Medicaid programs, this study has a number of policy implications as well. Of every 1,000 Medicare recipients with dementia, there are 349 skilled nursing home stays, compared to only 39 out of every 1,000 Medicare recipients without dementia. Additionally, the number of residents in assisted living facilities covered by Medicaid has more than doubled since 2002. Thus, steps like the NYUCI-AC intervention that can delay the admission to residential care also hold the promise of reducing a considerable financial burden to the taxpaying public.
Gaugler JE, Reese M, and Mittelman MS. Effects of the NYU Caregiver Intervention-Adult Child on residential care placement. The Gerontologist (2013); 53: 985–997.