Discrepancy in the perception of symptoms of cognitive decline between older adults and their family members: results of the Toyama dementia survey

BACKGROUND: Early consultation is important to delay the onset of dementia. The present study aimed to explore the reasons for delaying a consultation of dementia while focusing on the differences in the perception of cognitive decline between older adults and their family members. METHODS: A group of 663 older adults aged ≥65 years and living with family members in Toyama Prefecture was surveyed. The questionnaires included items that measured changes in cognitive function noticed by older adults and their family members, and the Revised Hasegawa Dementia Scale (HDS-R). The degrees of consistency on the perception of mental changes that accompanied cognitive decline were measured using the Kappa statistic. RESULTS: Both older adults and their family members were well aware of “forgetfulness” as a symptom of cognitive decline. Only the perception of “loss of appetite” at the late stage of cognitive decline was consistent between older adults and their family (κ = 0.707). When older adults often noticed their own forgetfulness, their mean HDS-R score was 22.7, whereas that of the family members was 14.7. The combinations of perception of forgetfulness by older adults and their family members, and the mean HDS-R scores were unaware/unaware (mean HDS-R score = 27.0), aware/unaware (mean HDS-R score = 24.9), aware/aware (mean HDS-R score = 15.5), and unaware/aware (mean HDS-R score = 13.0). CONCLUSIONS: There were discrepancies in the perception of cognitive decline between older adults and their family members. Cognitive decline had progressed by the time that family members had noticed the symptom of forgetfulness in their older adult relatives. The perception gap regarding cognitive decline deters consultation of dementia.