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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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Home›By Situation›We just got a dementia diagnosis

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

How much money can my spouse keep if I go on Medicaid for nursing home care in New York in 2026?

For 2026, the community spouse may generally keep the greater of the state minimum Community Spouse Resource Allowance ($74,820) or half of the couple's countable resources, up to the federal maximum of $162,660. The community spouse is also entitled to a Minimum Monthly Maintenance Needs Allowance of $4,066.50 per month from the institutionalized spouse's income. These figures come from NYSDOH's GIS 26 MA/03 guidance, effective January 1, 2026.

How much spending money is a Medicaid nursing home resident allowed to keep each month in New York?

New York's Nursing Home Resident Personal Needs Allowance is $50 per month - the amount a Medicaid-funded nursing home resident is permitted to keep from their own income for personal expenses, with the rest going toward the cost of their care. According to the NY State Office for the Aging (NYSOFA), this figure has been unchanged since the 1980s, and NYSOFA notes that 33 other states currently pay a higher PNA, ranging from $52 to $200.

What is the MLTC special income standard for Long Island and why does it matter for Medicaid home care?

The special income standard for housing expenses, available to certain individuals enrolled in a Managed Long Term Care plan, varies by NYSDOH region - for the Long Island region specifically, it is $1,701.00. This regional figure is higher than most upstate regions (for comparison, the Central New York region's is $426 and the Western region's is $341), reflecting Long Island's higher housing costs, and remains in effect until updated federal poverty levels are published.

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