Using Lawton's (1983) model of quality of life (QoL) in older adults as a guiding framework, the central purpose of this ongoing longitudinal, prospective study is to examine predictors of QoL outcomes in persons with irreversible dementia as they move through the disease stages. From an initial sample of 96 caregiver/care recipient pairs, 73 (N = 146) pairs remain at the 18-month data collection point. Changes in care recipient outcomes from baseline to the 18-month assessment include significant declines in mental status, productive behaviors, and functional ability, with a statistically significant improvement in depression. Controlling for 12-month mental ability, caregiver factors at 12 months predicting care recipient QoL outcomes at 18 months include psychologic well being predicted by the quality of the relationship with the caregiver and activity participation. Depression was predicted by activity participation as well. Care recipient functional ability was predicted by activity participation and caregiver role stress (disruption to routines and social functioning). Two of the three aspects of care recipient productive behaviors were predicted by caregiver factors, with quality of the relationship predicting problem solving and caregiver role stress (negative attitudes toward care recipient) and total social contacts predicting care recipient social behaviors in the expected direction. Lawton's QoL model was supported by this analysis, with a total explained variance of 32% for three (psychologic well being, productive behaviors, functional ability) of the five (physical impairment and perceived personal control not included) components of care recipient QoL outcomes.

This descriptive study examined the health care decision-making (HCDM) process of 20 community-dwelling care receivers (CR) with mild to moderate dementia and their family caregivers (CG). We conducted semi-structured interviews with the CR, focusing on their HCDM experiences. Additional data were obtained from the quantitative portion of the larger study. Major factors in the HCDM of the CRs were: symptoms, resources, function, trust in the health care system, and reliance on family. Poor congruence between CR and CG choices on treatment was analyzed in light of the qualitative findings. We found that older adults with mild to moderate dementia can participate in the HCDM process, make choices, and provide reasonable explanations for their choices. We concluded that disagreement on treatment choices in family dyads may be more fully explained by using a human needs-based model, as opposed to attributing care receivers' choices to cognitive status alone. de men tia d e m e n t i a

An objective measure of psychological well-being (a previously understudied outcome for persons with dementia) was developed and tested as part of a longitudinal study ( n= 96 participant pairs; n= 73 pairs remaining at 18 months). The reliability and validity of the Psychological Well-being in Cognitively Impaired Persons (PWB-CIP) scale was examined as a measure of one dimension of quality of life (QoL) as persons progress in the disease. The original 16-item PWB-CIP Likert-type scale required only five to 10 minutes to complete and was reduced to 11 items following factor analysis. Cronbach's alpha for the total scale was .79 at baseline and .82 at 18 months. Two subscales were identified: positive affect/interaction and negative affect/interaction. One item ('involved in a single activity for > five minutes') loaded on a different subscale at baseline (early disease stages) compared to 18 months (reflecting disease progression). The internal consistency of the two subscales remained acceptable across the two measurement intervals. Controlling for mental status, the PWB-CIP's construct validity was supported through significant relationships with depression, personal characteristics (personality), and the behavioral competence QoL dimensions at baseline and at 18 months. Because both rural (55%) and urban populations were sampled and the PWB-CIP was used across care settings, the findings support the PWB-CIP as a psychometrically sound measure of psychological well-being for diverse populations of persons with dementia.

This chapter provides an overview and critique of the theoretical and research literature by nurse researchers and researchers in other disciplines regarding interventions for persons with dementia (PWD). Reports were included if published in English between 1990 and 2000 and if a descriptive, correlational, longitudinal, or intervention design was used. Case studies and narrative descriptions were not included. No specific age criteria for study participants were applied; however, PWD are generally over age 55. The theoretical literature and various disease stages were reviewed, including clinical and behavioral indicators for disease progression. Using a variety of approaches to survey the extant literature (review of computer databases, contacts with experts in the field, ancestry method, and manual searches of key gerontology journals), over 1,200 citations were initially reviewed, allowing for approximately 375 publications undergoing thorough analysis with 157 research publications being included in this synthesis. Key findings include the identification of well-supported cognitive-behavioral interventions to enhance cognitive functioning and memory, and to relieve depression in the early disease stages; multiple environmental and behavioral approaches for improvement in functioning, maintenance of activities, and alleviation of behavioral symptoms in the middle disease stages; and behavioral, interactive, and staff support and education interventions for adequate nutritional intake, urinary incontinence, and management of problematic vocalizations and other behavioral symptoms in the later disease stages. Recommendations for future studies include the need for development of operational definitions of behavioral symptoms, inclusion of the perspective of PWD, evaluation of long-term outcomes, adequate sample size, community rather than institutional-based studies, and increased intervention testing at various stages of the disease.