A dementia directive — sometimes called an advance directive or living will — is a document in which a person, while still mentally capable, writes down their wishes for medical care if they can no longer communicate them. Think of it as a letter to the future: this is who I am, this is what matters to me, this is the care I want if I can no longer ask for it myself.
Planning ahead is essential. But here is the problem, most conversations about dementia directives overlook: a directive is only as effective as the system into which it enters — the interlocking world of nursing homes, hospitals, Medicare Advantage plans, Medicaid agencies, hospice providers, and AI-powered software tools that increasingly guide clinical decisions. That system operates according to its own logic. It is often indifferent to any single person’s documented wishes. Individual planning, by itself, does not solve that problem. Getting the governance right does.
A Structural Problem Dressed as a Personal Failure
The emphasis on personal planning quietly shifts moral responsibility from society to the individual. If something goes wrong — if a nursing home ignores a resident’s directive, if a hospice pursues aggressive treatment against documented wishes — the first question asked is whether the person completed the right forms. The system escapes scrutiny.
By the time most people develop moderate or severe dementia, they are navigating a maze of institutions, each operating under its own regulations, financial incentives, and staffing constraints. A directive enters this world. It does not replace it. Even affluent families face emergency departments that follow institutional protocols, staffing shortages, and insurance authorization requirements. For everyone else, the gap is far greater. A directive cannot create home care workers where none exist, or nursing homes with sufficient staff to deliver individualized care.
The Governance Dimension
Think of a dementia directive as a governance document — an attempt by a competent person to preserve their authority across a future moment when they can no longer speak for themselves. Whether that works depends not on the quality of the document, but on the integrity, capacity, and accountability of the institutions that receive it.
The governance challenge has three parts. First, institutions must be required to actually know what is in a person’s directive — not merely file it. Second, they must have the workforce to act on it; a staff member caring for fourteen residents cannot implement nuanced care preferences regardless of what the paperwork says. Third, AI-powered decision tools must reinforce rather than displace the person’s documented wishes, with conflicts surfaced and resolved through human judgment accountable to the person being served.
Ethicists have spent decades debating a hard question: when a person with advanced dementia seems content in the present moment, should we honor what they asked for years ago, or respond to what they appear to want now? It is an important debate. But it shares a blind spot — it focuses on what should happen inside an institution while leaving largely unexamined whether that institution has the capacity and accountability to make it happen at all. We have sophisticated frameworks for what the right decision is. We have almost no framework for holding institutions responsible for making it.
The federal repeal of minimum nursing home staffing standards in December 2025 — a rule that would have required 3.48 hours of nursing care per resident per day — is a case study in what governance failure looks like in practice. The CARF 2026 AI Governance Standards point in the right direction, but accreditation guidelines without regulatory enforcement are suggestions, not accountability.
Four Concrete Steps
First, advance directive integration should be a mandatory accreditation standard for all licensed long-term care providers. Staffing adequacy must be linked explicitly to directive implementation — you cannot honor a resident’s preferences without sufficient staff. Transparency requirements for AI tools should mandate disclosure when algorithmic recommendations conflict with documented wishes. And lastly, Medicaid home- and community-based service capacity must be treated as an advance directive issue: a preference for home-based care is meaningless if the workers don’t exist to provide it.
Conclusion
Individual planning remains essential. Every person approaching later life should complete a dementia directive expressing their values and care preferences with specificity. But individual planning should never become the excuse for neglecting the public systems upon which nearly everyone ultimately depends.
Dementia is not simply a private family matter. It is a public test of whether our healthcare and long-term care systems can preserve personhood when memory and independence begin to fade. The goal is not merely to help people write down their wishes. It is to build institutions — adequately staffed, properly financed, genuinely accountable — that can honor those wishes regardless of income or circumstance. Until we do, individual planning — while indispensable — will never be enough.
James A. Lomastro, PhD was healthcare administrator, a national CARF International surveyor, and co-author of CARF’s 2026 AI Governance Standards
Conflict of Interest: The author is a co-author of the CARF International AI Governance Standards cited in this essay and serves as a national CARF surveyor. He has no financial interest in CARF International.
AI Disclosure: The author used Claude (Anthropic) as an augmented intelligence tool to revise this draft. All analysis, argument, and editorial judgments are the author’s own.