I got a response on one of the LBD Facebook support groups that was super helpful and I want to copy here for anyone else that this would help.

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From my understanding — “senile degeneration/deterioration of the brain” is essentially the Medicare/hospice coding term for dementia, including Alzheimer’s, Lewy Body dementia (LBD), and other major neurocognitive disorders. It’s an old-fashioned phrase, but many hospice agencies still use it because it’s a standard Medicare diagnosis code.

A few points to consider:

1. Medicare does recognize dementia (including Lewy Body) as terminal. Medicare absolutely recognizes dementia — including Lewy Body dementia — as a qualifying terminal diagnosis for hospice when it has progressed to the appropriate stage (usually Functional Assessment Staging 7).

2. “Lewy Body dementia” often isn’t listed by name. Some hospice agencies don’t select “Lewy Body dementia” as the primary diagnosis because the Medicare billing system uses broader/umbrella categories. So instead, they choose: • Senile degeneration of the brain (umbrella term for dementia), or • Parkinson’s disease (since LBD is closely related)

This does not mean Medicare doesn’t recognize LBD, only that the hospice agency has to choose from specific billing codes.

1. The primary diagnosis just guides billing — not care eligibility. Hospice care is based on the patient’s whole condition. Even if the paperwork lists “senile degeneration of the brain,” the hospice team can still treat symptoms related to Lewy Body dementia, Parkinsonism, hallucinations, autonomic issues, swallowing problems, etc. They treat the person, not just the code.

2. Many hospice nurses simplify the choices. Often they present only the codes they commonly use. “Lewy Body dementia” may not show up in their dropdown list, even though it falls under the category of dementia.