Abstract

The population of persons living with dementia (PLWDs) is increasing, although mainstream dementia care quality is suboptimal. To identify characteristics associated with: (1) PLWDs' neuropsychiatric symptoms and quality of life; and (2) distress from neuropsychiatric symptoms and well-being among their family caregivers (N = 49). Cross-sectional single-group examination of PLWD and caregivers when they enrolled into a nurse-led dementia-centered primary care clinic. Pearson correlations were run between characteristics of PLWD and caregiver and variables representing PLWD's neuropsychiatric symptoms and quality of life and their caregivers' well-being. Statistically significant correlations were reported via Cohen d statistics. Caregivers' characteristics associated with higher distress from neuropsychiatric symptoms and diminished well-being included Black race, female gender, younger age, caring for a parent with dementia, and being employed. Characteristics of PLWD associated with caregivers' higher distress and diminished well-being included longer time since dementia onset, higher Charlson Comorbidity Index, and non-Alzheimer dementia. Caregivers' characteristics associated with higher neuropsychiatric symptom burden included Black race, female gender, younger age, caring for parent PLWD, and being employed. Characteristics of PLWDs associated with higher neuropsychiatric symptom burden included non-Alzheimer dementia, longer time since dementia onset, more comorbidities, and higher Charlson Comorbidity Index. Finally, a longer time since dementia onset was associated with PLWDs' lower quality of life. Black race, caring for caring for a parent with dementia, younger age, and being employed were characteristics linked to PLWDs' higher neuropsychiatric symptom burden and caregivers' diminished well-being. Clinicians must assess and intervene with unpaid caregivers who may not appear obviously distressed.

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