dementiacare.network is building the infrastructure for connected, consent-centered dementia care — because a fragmented system is not a neutral one.
Decisions are made across the network without the patient's knowledge. Providers communicate around the family. Financial and legal arrangements are put in place informally. No one owns the full picture.
These are not aspirational. They are the minimum conditions under which a patient with dementia retains dignity, agency, and legal standing.
Informed consent is documented at every decision point — not once at admission. Capacity assessments are standardized and regularly updated.
Any proxy designation — legal, financial, medical — is disclosed to all relevant care parties. Side arrangements with institutions are not permitted without documentation.
A patient whose legal rights are intact cannot be denied access to their own medical records. Denial requires documented clinical justification.
Inter-party communications about a patient — between facility, insurer, and financial institution — are logged and available to the patient's designated advocate.
Dementia diagnoses meet established clinical criteria. Standardized cognitive testing, differential diagnosis for reversible causes, and neurological assessment are required before diagnosis.
Families are not observers in the care network. Their role, information access, and decision-making authority are defined, documented, and honored.
Adopt and signal adherence to accountability standards. Differentiate on transparency, not marketing.
Diagnose with rigor. Communicate with families. Document consent as a clinical practice, not a formality.
Know what standards exist. Hold facilities to them. Use the tools we're building to identify gaps before admission.
The CMS GUIDE Model is a beginning. This network builds the evidence base for what connected, accountable care actually looks like in practice.
"A man whose legal rights were never formally removed asked for a copy of his own medical records.The founding case — Dementia Deserves Better, 2026
He was denied.
The system does not require a formal process to treat a patient as if they have no standing."
dementiacare.network is in early development. We are seeking facilities, providers, researchers, and advocates committed to building the infrastructure for accountable care.
The Dementia Deserves Better Ecosystem