Dementia Diagnosis Unawareness and Caregiver Burden in a Multi-ethnic Cohort

Previous reports suggest patient and caregiver lack of awareness of dementia. Little is known about how this varies by ethnicity and how informal (family) caregiver burden is associated with knowing a dementia diagnosis.

To investigate whether participants with probable dementia were aware of a diagnosis provided by a physician and how this differed among Mexican American and non-Hispanic White participants; whether having a primary care physician was associated with dementia diagnosis unawareness; and the association of dementia diagnosis unawareness with caregiver burden.

This was a population-based cohort study in Nueces County, Texas. Participants who scored less than 20 on the Montreal Cognitive Assessment (MoCA) were classified as having probable dementia. Diagnosis unawareness was defined as participants with probable dementia who had not been told that diagnosis by a healthcare provider. Logistic regression models examined the association of ethnicity and dementia diagnosis unawareness. A negative binomial regression was used to assess the association of dementia diagnosis unawareness and caregiver burden.

Eighty-one percent of eligible participants were not aware of a dementia diagnosis. Mexican American participants (MAP) were more likely to be unaware of a diagnosis (85%, 95% CI 81-89%) than non-Hispanic white participants (NHWP) (68%, 95% CI 58-75%). Only 6.6% of the participants with probable dementia had no primary care provider, with no observed association between diagnosis unawareness and lack of primary care. Diagnosis unawareness was not associated with caregiver burden (IRR = 0.93, 95% CI 0.77-1.14) but was associated with lower MoCA score (IRR = 0.98, 95% CI 0.96-1.00) and greater physical impairment (IRR = 1.06, 95% CI 1.03-1.10).

Dementia diagnosis unawareness was very high in this community. MAPs are more likely to be unaware of a diagnosis than NHWPs. Lack of access to primary care and caregiver burden were not associated with dementia diagnosis unawareness.

Study registered at clinicaltrials.gov NCT03403257.