Can Dementia Caregivers Define Dementia? (P6.196)

To assess understanding of the meaning of the word “dementia” in caregivers of patients presenting to a dementia clinic.

Health literacy among caregivers is an area of focus for patient safety in dementia care, so caregiver education is a key goal. An obstacle to that goal may begin even with defining what dementia is.

In consecutive outpatient visits, we prospectively queried caregivers bringing a patient to an academic dementia clinic. Each respondent was asked: How would you define the word “dementia”? For comparison, we developed an operational definition to isolate 7 key elements: (1) abnormal (2) decline from baseline (3) in multiple aspects of (4) cognition, (5) not brief, (6) due to brain problems, (7) interfering with function.

Responses were given by 98 unique caregivers in 120 consecutive patient visits, resulting in an average of 2.8 of the operationalized features of a dementia definition. Two people identified 5 features, none more than that. Twenty seven (27) identified 4 features, 36 identified 3, 13 identified 2, 17 identified 1, and 3 identify no features. Most, but not all, said that dementia involves cognition (87), something abnormal (66), or a change from baseline (60), but no one identified all three. A minority (34) specified that more than one cognitive area was involved, and few (9) identified brain dysfunction, interference with function (9), or duration not brief (4). No one offered a simplified operational definition of (1) abnormal (2) cognition (3) over more than a brief time (4) with functional consequences.

No caregiver could give either a full or abbreviated definition of dementia and few could list more elements than they omitted.

Disclosure: Dr. Shenker has nothing to disclose. Dr. Singh has nothing to disclose.