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We just got a dementia diagnosis

What to do in the first month, and what can wait longer than you think.

Quick answer

What to do in the first month, and what can wait longer than you think.

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The first month after a diagnosis is mostly about slowing down. Very little has to be decided immediately.

Short answer

What to do in the first month, and what can wait longer than you think.

What to do, in order

  1. Slow down. Very little has to be decided this month.
  2. Get the specific diagnosis. Alzheimer's, vascular dementia, Lewy body and frontotemporal dementia progress differently and respond differently to medication.
  3. Do the legal work now, while capacity is clear. Power of attorney, medical power of attorney, directives.
  4. Call the Area Agency on Aging serving your county. Nassau County Office for the Aging (516-227-8900) or Suffolk County Office for the Aging (631-853-8200) -- both are also NY Connects access points.
  5. Understand what memory care will require later. New York requires SNALR certification, an add-on to an ALR license, specifically for dementia care -- not a separate license category.

Questions families ask

Do I have to enroll in an MLTC plan for home care in Nassau or Suffolk County?

Yes - Managed Long Term Care (MLTC) enrollment is mandatory in both Nassau and Suffolk counties for dual-eligible Medicaid recipients age 21 and older who need community-based long-term care services for more than 120 days. NYSDOH extended mandatory MLTC enrollment to Nassau, Suffolk, and Westchester counties beginning in the 2013 transition period, and that mandatory enrollment structure remains in effect. MLTC plans coordinate home care, adult day care, nursing home care, and related services through a single managed care plan rather than fee-for-service Medicaid.

What is the NHTD Medicaid waiver and could it help my parent stay out of a nursing home?

The Nursing Home Transition and Diversion (NHTD) Medicaid Waiver is a federal 1915(c) Home and Community-Based Services waiver administered by NYSDOH through Regional Resource Development Centers. It helps Medicaid-eligible people age 65 and older, and younger people with physical disabilities, who have been assessed as needing nursing-home-level care receive services in the community instead, either transitioning out of a nursing facility or diverting from being admitted to one in the first place.

What is New York's Assisted Living Program (ALP) and how is it different from private-pay assisted living?

The Assisted Living Program (ALP) is New York's Medicaid-funded alternative to nursing home placement, operating inside licensed Adult Homes or Enriched Housing Programs rather than as a separate building type. It serves people who are medically eligible for nursing home care but can safely be served in a less medically intensive, lower-cost setting, covering personal care, room and board, housekeeping, home health aides, nursing, therapy, medical equipment, adult day health care, and RN case management. ALP is regulated under 18 NYCRR Part 494.

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