"Anything that Benefits the Workers Should Benefit the Client": Opportunities and Constraints in Self-Directed Care During the COVID-19 Pandemic.

Self-directed care (SDC) models allow Home and Community Based Services (HCBS) consumers to direct their own care, thus supporting flexible, person-centered care. There are many benefits to the SDC model but access to resources is essential to successful outcomes. Considering the autonomy and flexibility associated with SDC, it is important to understand how SDC responded to the COVID-19 pandemic and the resources available to help manage this situation. We conducted 54 in-depth interviews with HCBS consumers, direct support workers, family caregivers, and providers to examine the impact of COVID-19 on HCBS services in Kansas. Findings illuminate how self-directed consumers carried a lot of employer responsibility, with limited resources and systemic barriers constraining self-determination and contributing to unmet care needs, stress, and burden. Policy flexibilities expanding the hiring of family members were beneficial but insufficient to address under-resourced working conditions and labor shortages that were exacerbated by the pandemic.

Treatment outcomes of a crisis intervention program for dementia with severe psychiatric complications: the Kansas bridge project.

PURPOSE: Although declines in memory and attention are hallmark symptoms of Alzheimer's disease (AD), noncognitive symptoms are prevalent. Over 80% of individuals will experience neuropsychiatric symptoms, which complicates symptom profiles. Research indicates a community-integrated response to dementia crisis can reduce negative consequences attributed to crisis including increased caregiver burden, increased health care costs, and premature institutionalizations. DESIGN AND METHODS: The Kansas Dementia Crisis Bridge Project is a multidisciplinary collaboration to provide direct support in critical situations to reduce psychiatric rehospitalizations. Coordinators provided counsel and dementia education to families throughout critical period of acute neuropsychiatric symptoms, facilitated professional involvement, and provided crisis prevention planning through crisis review. The Neuropsychiatric Inventory Questionnaire and Geriatric Depression Scale were used to measure the impact of neuropsychiatric symptoms and Bridge interventions on patient and caregivers. RESULTS: The Bridge project significantly reduced patient anxiety, depression, resistance to care, impulsive behavior, verbal outbursts, and wandering. Caregivers reported significantly reduced anxiety, apathy, resistance to care, and less distress over patient neuropsychiatric symptoms. Caregivers also reported increased confidence in managing difficult behaviors, and the project effectively reduced or resolved neuropsychiatric crisis. The project delayed nursing home placement for community-dwelling patients. IMPLICATIONS: Crisis support models like the Bridge project reduce strain on care-delivery systems by incorporating nonpharmacological interventions, assisting families with communication, and reducing family distress during symptom crises. Although much of AD research focuses on disease-modifying medical interventions, aging and care systems in the state must simultaneously move towards dependency-modifying care interventions.