The Conundrum of Hospice Care for Alzheimer’s Disease

When is hospice appropriate for someone with Alzheimer’s Disease? There is an overarching feeling that because of the 6-month terminal prognosis required for eligibility, that Alzheimer’s patients are rarely eligible until near the end. A recent research brief from the Assistant Secretary for Planning and Evaluation (ASPE) within the Department of Health and Human Services shows a different reality. Find the forty-six page document and source references here.

Hospice care among individuals with Alzheimer’s disease and related dementias (ADRD)* grew from less than 5% of Medicare hospice patients in 2000 (Aldridge, Hunt, Husain et al 2022) to 23% of Medicare hospice patients in 2023 (Medicare Payment Advisory Commission 2025). The Aldridge study published in 2022 revealed 45% of hospice patients had a primary or comorbid dementia diagnosis at death. Surprise. Hospice organizations are taking care of lots of dementia patients toward the end, but when they start hospice is, well, kind of all over the place.

The 6-month hospice eligibility criteria were modeled on the rate of decline in cancer patients at the inception of the Medicare Hospice program in 1983. Yes. Forty-three years ago. Without question modern day cancer patients have a completely different disease trajectory since the advent of revolutionary new effective treatments for. And, that rate of decline is drastically different from patients with Alzheimer’s and related dementias.

This research brief indicates “these findings suggest a distinct care trajectory that may necessitate tailored approaches to meet the needs of ADRD patients.” No kidding!

So how exactly does that translate into bedside care by hospice teams? The ASPE report drew from Medicare hospice claims data on over four and a half million patients, approximately one and a half million of those patients had either a primary or secondary diagnosis of ADRD. Patients with a primary diagnosis of ADRD had an average length of stay of 92.5 days with a standard error of 149.2 versus an average length of stay for cancer at less than half that at 40.6 days with a standard error of 74.3.

If you’re like me and your statistics class was 40 years ago, I’ll attempt to translate. A high standard error in a very large sample size means there is almost no average. Unpredictable.

There were also significant differences in how often nursing staff and home health aide staff (HHA) made visits when comparing patients with ADRD and cancer patients. ADRD patients had more visits by HHA staff and fewer visits by RN staff than cancer patients. The report goes on to point out that that difference was particularly significant in the middle part of their stay which makes perfect sense to me. Dementia patients have a myriad of functional losses that involve complex personal care. Having a home health aide come in to provide personal care, change the sheets, apply barrier cream to prevent skin breakdown and let the primary caregiver rest in the other room is critical care for the patient and the primary caregiver.

The research brief ends with a shout out to the Guiding an Improved Dementia Experience (GUIDE) pilot program under traditional Medicare as a model for navigating this most unpredictable of end of life trajectories. I’ve written about this program here, here and here. It proposes an alternate payment system for dementia patients under hospice which makes SO much sense.

I hope to see this project become permanent. We need it.

*The National Institute of Aging groups Lewy Body Dementia, Frontotemporal Dementia, Vascular Dementia and Mixed Dementia as Alzheimer’s related dementias.

Share