Burden among Family Caregivers of Dementia in the Oldest-Old: An Exploratory Study

There is no agreed single measure of physical disability for use either clinically or in research. It is argued that acceptance of a single standard measure of activities of daily living (ADL) might increase awareness of disability, improve clinical management of disabled patients, and might even increase acceptance of published research. The Barthel ADL Index is proposed as the standard index for clinical and research purposes. Its validity, reliability, sensitivity, and utility are discussed. The Barthel Index is as good as any other single simple index, and should be adopted as the standard against which future indices are compared. The temptation to use variations on the standard Barthel Index should be resisted.

To develop an adjunct scale to the Neuropsychiatric Inventory (NPI) for assessing the impact of neuropsychiatric symptoms in Alzheimer's disease (AD) patients on caregiver distress. Cross-sectional descriptive and correlational study. University out-patient memory disorders clinics. Eighty-five AD subjects and their caregivers (54 spouses, 31 children). The NPI and NPI Caregiver Distress Scale (NPI-D) were used to assess neuropsychiatric symptoms in AD patients and related caregiver distress, respectively. Criterion validity of the NPI-D was examined (N = 69) by comparison with an abridged version of the Relatives' Stress Scale (RSS'), a general measure of caregiver stress, using item clusters that had previously been correlated to behavioral disturbances in demented patients. Test-retest (n = 20) and inter-rater reliability (n = 16) of the NPI-D were also assessed. Test-retest and interrater reliability of the NPI-D were both adequate. Overall, caregiver NPI-D distress ratings were correlated significantly with the RSS' (r = .60, P < .001). RSS' ratings correlated strongly with NPI scores (r = .64, P < .001), even after controlling for degree of cognitive impairment based on the Mini-Mental State Exam (MMSE) score (r = .61). MMSE scores showed a moderate correlation to RSS' ratings (-.30, P = .02), but this association was markedly attenuated when controlling for the degree of neuropsychiatric disturbance based on the NPI score (r = -. 14). NPI-D ratings for 9 of 10 NPI symptom domains correlated most strongly with either NPI symptom severity or total (frequency x severity) scores. Agitation, dysphoria, irritability, delusions, and apathy were the symptoms most often reported to be severely distressing to caregivers. The NPI-D provides a reliable and valid measure of subjective caregiver distress in relation to neuropsychiatric symptoms measured by the NPI. Neuropsychiatric alterations are more strongly associated than cognitive symptoms to caregiver distress. The NPI-D may be useful in both clinical and research settings for assessing the contribution to caregiver distress of neuropsychiatric symptoms in AD patients.

Caregivers of disabled older people were studied in terms of their appraisal of the caregiving process. A conceptual approach based on stress theory suggested that such appraisal was broader than the traditional term, "caregiving burden." An item pool was constructed using traditional and new items to represent dimensions of subjective caregiving burden, caregiving satisfaction, caregiving impact, caregiving mastery, and traditional caregiving ideology. Component analysis of responses of 632 caregivers in a respite research project yielded factors that corresponded with those hypothesized; the content of similar factored responses from 239 caregivers in another study was quite similar. A series of exploratory and confirmatory factor analyses resulted in acceptance of the subjective burden, caregiving satisfaction, and caregiving impact factors. Used as composite item scores, evidence of their psychometric quality is presented.