Improving Outcome for Family Caregivers of Older Adults With Complex Conditions: The Adult Day Plus (ADS Plus) Program

Family caregivers (CGs) provide 85% or more of the long-term care needs of older adults including coordination, care transitions, hands-on assistance with daily care, health-related services (e.g., wound care, medication management), financial support, monitoring on-site or long-distance, managing challenging behaviors, and preserving quality of life. As conditions worsen, CGs assume more extensive care responsibilities that can be time consuming, physically demanding, and emotionally depleting. Although positive aspects of caregiving are documented, on-going caregiving can be a source of chronic stress resulting in poor health, lost income, psychological distress, and for those most distressed, increased risk of mortality.

CGs typically provide care without formal support, have significant unmet needs, and limited access to the knowledge and skills needed to care for older adults with complex conditions. To date, most tested CG interventions have: a) focused on one disease state (e.g., dementia); b) delivered interventions outside existing service settings/payment structures; c) required extensive training of interventionists, d) had less reach to a mix of CGs/older persons; e) required retooling of the intervention to enhance its implementation potential in real world settings; and f) not been translated for delivery in community-settings nor sustained. The study potentially overcomes these shortcomings by embedding an evidence-based approach in a service and payment structure (adult day services [ADS]), addressing core needs of diverse CGs of older adults with a mix of conditions, and evaluating outcomes of high relevance to CGs (well-being, depression), older adults (behavioral symptoms), ADS (more days spent in ADS) and society (reduction of nursing home placement).

Adult day services are a growing and important long-term care option. ADS is an important community-based long-term care option for CGs and older adults with complex conditions requiring daily assistance. ADS provides out-of-home, supervised, group services with the goals of improving mood, well-being, and quality of life and enabling clients to remain at home for as long as possible. ADS also aims to provide CGs "respite" from day-to-day care responsibilities and is available during "normal business hours," although some offer flexible hours to meet the needs of working CGs. While some provide support groups and educational opportunities, these activities are not consistently provided, systematically integrated into routine practice, or evidence-based. Similarly, while some care planning may occur at the time of client enrollment or annually, structured, consistent contacts with CGs using standardized assessments and evidence-based approaches are not typically offered. The intervention being evaluated, ADS Plus, is evidence-driven, embedded in ADS work flow, and systematically addresses unmet CG needs that may boost ADS benefits for both CGs and older adult clients.

The primary study aims are to: 1) evaluate the effectiveness of ADS Plus to improve CG well-being and reduce depressive symptoms compared to routine ADS use at 6 months; and 2) evaluate long-term maintenance effects of ADS Plus at 12 months on CG well-being and depressive symptoms.

Additional study aims will: 3) evaluate whether CGs using ADS Plus are more likely to maintain relatives in ADS and less likely to place them in residential settings compared to those in routine ADS over 12 months; 4) estimate ADS Plus costs and assess whether it results in net financial benefits when compared to usual ADS at 6 and 12 months; 5) evaluate the effects of ADS Plus on client behaviors and CG efficacy and upset managing symptoms; and 6) evaluate theoretically-derived ( Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework, Stress Process Model) mediational pathways of treatment change including CG acceptance and staff adoption of ADS Plus over 12 months.