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Mobile Guide - Insurance and Financial Planning

Deborah Kan

Created on March 19, 2026

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Transcript

Insurance & Financial Planning

Understanding coverage and benefits

Planning for the cost of care

Navigating insurance decisions over time

Why planning early matters

A dementia diagnosis can reshape finances, insurance needs, and long-term planning. From diagnostic tests and medications to home care, respite services, and long-term care facilities, costs can add up quickly. Planning early gives families more options — and more control. Learn what insurance can cover, and what it doesn’t.

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What does insurance actually cover?

Insurance coverage for dementia care depends on the type of care — and the type of insurance.

Medicare

Medicaid

Private

Coverage often changes as needs evolve — from diagnosis to advanced care.

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Understanding Medicare

Medicare generally starts for people at 65, and people sometimes buy additional insurance on top of Medicare.

People who are employed in the US pay into Medicare during their working lives, and then pay an additional premium during retirement years.

It does not cover long-term care and anything considered non-medical, even though this can be necessary for some people living with dementia.

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Understanding Medicaid

What is Medicaid?

“Medicaid is one of the only significant public sources of money that will help you with the long-term care costs associated with dementia. Medicaid benefits start when you can show you’re financially absolutely in need. It’s really intended to be a last resort for families who are paying for long-term care but there are some significant differences from Medicare.

Michael Guerrero

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Elder Care Resource Planning

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Paying for diagnosis and treatment

Getting an accurate diagnosis can be expensive — and coverage isn’t guaranteed.

Amyloid PET scans may or may not be covered, depending on insurance and state policies.

New Alzheimer’s drugs are covered by Medicare and Medicaid under specific conditions because the drug is FDA-approved.

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Planning for long-term care

Long-term care is one of the biggest financial challenges families face. Otions include:

Home care

Assisted living

Nursing homes

Planning ahead can help families avoid financial challenges later.

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Should you consider long-term care insurance?

Long-term care insurance can help cover services Medicare doesn’t — but it’s not right for everyone. Consider:

For some families, options beyond insurance may be a better fit—consulting an elder law attorney can help with long-term care planning.

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An expert’s perspective

Hear from Kim Natovitz, a financial planner at TriBridge Partners, about long-term care insurance.

"We all have priorities in terms of looking at our overall financial plan, but don’t let perfection be the enemy of good. Certainly having some long-term care insurance would be better than not having anything at all. Most people begin looking at long-term care insurance about a decade before they retire… There are some short-term care policies, which will provide benefits that will be for a year or less, that can be less expensive.”

Kim Natovitz

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Associate at TriBridge Partners

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When one man’s insurance denied his Leqembi

Dan Jaworski was diagnosed with early-onset Alzheimer’s disease at age 54. Since he is under 65, he doesn’t qualify for Medicare, which covers Kisunla as well as the associated amyloid PET brain scans. His private insurer, Florida Blue, denied him coverage. Jaworski qualified for a Kisunla trial at the K2 Research Center where he has access to the drug as part of the study. “It was very disappointing,” Jaworski said of his battle with his insurer. “I got lucky that I found the trial. You’ve got to be your own advocate.”

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Insurance gaps and discrimination

Insurance systems don’t affect everyone equally.

  • Some insurers can legally discriminate based on biomarkers, even before symptoms appear.
  • Access to diagnostic testing and care often depends on ZIP code, income, and state policy.
  • These gaps disproportionately affect underrepresented and marginalized communities.

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Insurance gaps and discrimination

The US Genetic Information Non-Discrimination Act helps but fails to protect against blood-based biomarkers, cerebral spinal fluid biomarkers, or neuroimaging, according to Stanford University Law professor Hank Greely.

“The act only deals with employment and health insurance, but it doesn’t deal with life insurance and probably most significantly for the Alzheimer’s community, it doesn’t deal with disability insurance or long-term care insurance.”

Hank Greely

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Stanford University Professor

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End-of-life care and hospice decisions

Financial planning includes preparing for end-of-life care. Hospice services can provide comfort-focused care, but dementia patients are unlikely to meet Medicare’s stringent criteria for hospice, which is designed to limit hospice to patients who are expected to die within six months. On top of this, Medicare’s criteria require that people with dementia require help with basic things like toileting and walking, and have a terminal complication of dementia such as aspiration pneumonia, recurrent UTIs, or bed sores.

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Learn More

Understanding insurance coverage options and their financial implications won’t eliminate uncertainty — but it can help families face dementia with more clarity and fewer surprises.

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Want to keep learning?

Visit

beingpatient.com

for the latest news and information on brain health and Alzheimer's disease

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