Fixing a Fragmented System
Libby Hastings • December 29, 2025
Fixing a Fragmented System: Dementia Care and Support in Kansas
While services exist for older adults with dementia or cognitive impairments and their caregivers, access is fractured, spread across agencies, and contracted to various partners. Funding streams and eligibility rules are not aligned. Families are forced to self-navigate a complex system without a single professional looking out for the older person’s best interest, especially at a time when they are least able to do so. This is particularly true in rural and frontier counties where provider choice is limited, and family caregivers carry most of the burden.
There are existing policies and structural issues that unintentionally limit access to timely, effective, and person-centered support for individuals with dementia or cognitive impairment. Several structural issues limit access: a) State funding and investment prioritize institutional care over community-based services. b) Kansas’s Medicaid eligibility and service authorization processes are fragmented, slow, and rigid, which makes our system difficult to navigate. c) Workforce policies fail to address shortages, particularly in rural and frontier areas, resulting in approved services that, at times, cannot be delivered. These policies were never designed to restrict access, but the cumulative effect does exactly that.
Effective models for supporting individuals with dementia and their caregivers share some common traits: a) Strong community partnerships between Area Agencies on Aging, local providers, and advocacy organizations. b) Care coordination/case management service models that offer a single, trusted professional or point of contact. c) Flexible use of funds to care coordination, that support respite, and resource education. Programs succeed better when they reduce complexity.
The most urgent gaps in services and support are: a) Timely access to services before a hospital stay & discharge. b) Reliable caregiver support, including respite, education, and training. c) Capable direct care workers, particularly in rural communities. Too often, assistance arrives only after families are overwhelmed or burnt out.
Two steps would make an immediate difference in strengthening dementia-capable systems: a) Implement or re-invest in community care coordination to perhaps span across agencies and various funding sources. b) Strengthen the community-based direct care workforce through targeted reimbursement increases tied to community-based and/or dementia-specific training. Both are achievable within existing structures.
Three state-level priorities or investments that would most improve outcomes for older adults living with dementia or other cognitive impairments in Kansas include: rebalancing long-term care funding or investment to better support community-based services, holding systems accountable for outcomes, especially where public dollars are invested and aligning policy, funding, and accountability around what families actually need to succeed at home along with their older family member.
On March 19, 2026, a Washington Post article highlighted a recent Office of Inspector General for the Department of Health and Human Services investigation that brought renewed national attention to a troubling reality inside America’s nursing homes: powerful antipsychotic drugs are being used not as treatment, but as control. The report found that some facilities are misdiagnosing residents with schizophrenia to justify prescribing antipsychotic medications. These drugs are often not approved for people with dementia and carry serious risks, including falls, strokes, and even death. In many cases, these medications are used to manage behaviors that are not dangerous, such as calling out, resisting care, or expressing distress. The result is what advocates have long warned about: the use of chemical restraints to sedate residents for staff convenience. A National Problem Decades in the Making The misuse of antipsychotic drugs in long-term care has been documented for years. In April 2024, KABC highlighted this issue in our advocacy work, noting that hundreds of thousands of nursing home residents nationwide are given antipsychotic medications, often without appropriate clinical justification. These drugs carry an FDA “black box” warning for use in older adults with dementia due to an increased risk of death. Federal efforts over the past decade have aimed to reduce unnecessary use, yet as of early 2026, approximately 17% of long-stay nursing home residents in the United States are still receiving antipsychotic medications. At the same time, recent federal policy discussions in March 2026 have raised concerns among advocates that loosening reporting requirements could reverse progress made in reducing inappropriate use. Kansas Is Not Immune This issue hits close to home. In 2022, the Kansas Legislature’s Senior Care Task Force released a report to the 2023 Legislature identifying the administration of antipsychotic medications and protections against abuse and neglect as critical areas for reform. The Task Force emphasized that these medications could have serious and even fatal consequences for older adults, particularly when used inappropriately. Advocates in Kansas have reported that up to 26% of nursing home residents, and nearly 40% of those with dementia, have been prescribed antipsychotic medications in recent years, despite well-documented risks. While some facilities have made progress, reductions in use have stalled in recent years, raising concerns that systemic issues remain unresolved. Why It Happens At its core, the misuse of antipsychotic drugs is often a symptom of deeper systemic problems, many of which have been exacerbated since the COVID-19 pandemic. Experts and investigators point to: Chronic understaffing, intensified since 2020 Lack of training in dementia care Pressure to manage behaviors quickly Lack of person-centered practices in care Gaps in oversight and accountability Non-drug approaches, like personalized care, meaningful activities, and addressing unmet needs, are widely recognized as best practice. But they require time, staffing, and resources that many facilities continue to lack in 2026. When those supports are missing, medication restraint becomes the default. What Proper Care Should Look Like Clinical guidance has long been clear, and yet remains unchanged in 2026. Antipsychotic medications should be a last resort, used only when: Non-drug interventions have failed The resident poses a risk to themselves or others The benefits outweigh the serious risks Even then, they should be used cautiously, closely monitored, and regularly reevaluated. The Path Forward for Kansas Kansas has an opportunity, and an obligation, to act. Building on the 2022 Senior Care Task Force recommendations, advocates continue in 2025–2026 to call for: Expanded access to geriatric mental health specialists Stronger oversight and enforcement Improved training in dementia and person-centered care Greater transparency for residents and families Meaningful solutions to the ongoing staffing crisis At its heart, this is about dignity. Older adults in Kansas adult care homes deserve care that respects their humanity, not treatment that silences it.
Kansas Advocates for Better Care testified on FE waiver funding and supported bills on decision-making, dementia training, and memory care standards.