Objective:

Background:

Alzheimer’s disease and related dementias (ADRD) are the most common neurodegenerative disorders worldwide and the sixth leading cause of death in the United States. Although the prevalence of ADRD is rising as the population ages, many individuals living with dementia remain undiagnosed or unaware of their diagnosis. Little is known about end-of-life outcomes, including hospice enrollment, in persons with undiagnosed dementia.

Design/Methods:

This retrospective study used 2011-2020 data from the National Health and Aging Trends Study (NHATS), a nationally representative study of Medicare beneficiaries aged 65 or older. NHATS decedents meeting criteria for possible or probable dementia based on self-reported questionnaires and in-person cognitive testing were linked to Medicare claims to determine whether they had a formal ADRD diagnosis (defined as NHATS + Medicare dementia diagnosis) or undiagnosed ADRD (defined as NHATS-identified dementia only). Weighted, survey-adjusted analyses compared hospice enrollment and duration in the last six months of life between dementia diagnosis groups.

Results:

Of 3,072 decedents meeting criteria for dementia, 2,086 (67.9%) had a formal ADRD diagnosis while 986 (32.1%) were undiagnosed. In the last six months of life, hospice enrollment was significantly greater among individuals with diagnosed vs. undiagnosed dementia [1,257 (60.3%) vs. 485 (49.2%), p<0.001]. Hospice duration was also longer among those with formal ADRD diagnoses compared to those who were undiagnosed [median 19 (IQR 7-103) vs. 7 (IQR 2-40.5) days preceding death, p=0.036].

Conclusions:

Individuals with undiagnosed ADRD are significantly less likely to enroll in hospice care in the last six months of life than those with formal ADRD diagnoses, raising concern for inadequate end-of-life care. More work is needed to improve rates of ADRD diagnosis and hospice referral when appropriate.