Committee advances dementia-specific advance-directive bill after emotional testimony

The Health Committee voted to release A1352, the Dementia Dignity Advanced Care Planning Act, with committee amendments after more than an hour of testimony and discussion.

Committee amendments specify that a dementia‑specific advance directive would be considered a valid form of an instruction directive under current statute, would govern only decisions arising from dementia or related neurodegenerative conditions unless the declarant expressly states otherwise, and would not automatically invalidate previously executed advance directives. The amendments also direct hospitals, nursing homes, assisted‑living facilities and hospices to incorporate dementia‑specific advance‑directive education into patient intake and care‑planning processes; training programs developed by the Department of Health would be optional and eligible for continuing medical education credits for certain clinicians.

Bruce Sisler, Northeast territory government relations director for the Alzheimer’s Association, told the committee the organization appreciates the bill but urged careful drafting. “If we have a specific advance directive for dementia or Alzheimer’s… down the road we could have another advance directive for cancer, another for Parkinson’s,” Sisler said, warning that multiple condition‑specific directives can conflict and create legal uncertainty.

Nurse Julia Goodkind, who said she was recently diagnosed with early‑onset Alzheimer’s, described preparing a dementia‑specific directive while she still has decisional capacity. “This act will provide the opportunity for any competent adult diagnosed with Alzheimer’s or any other neurodegenerative disease to prepare an advance directive specific to dementia that can be executed by an individual who still has decisional capacity,” Goodkind said. She told the committee she hopes the directive will preserve her dignity and make her wishes clear when she can no longer communicate.

Members asked staff and witnesses whether the specific directive would add benefits beyond general advance directives and whether a registry created for dementia directives could also accept general directives. Sisler said existing general advance directives in New Jersey are sufficient in many cases and urged ongoing work with sponsors to avoid contradictions. Chairwoman Murphy said she and the sponsor would continue discussions after the hearing.

The committee released the bill with amendments to the floor. The committee did not specify an implementation date beyond the amendments’ revised effective provisions; sponsors said they will continue to work with stakeholders on technical language before floor consideration.