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Dementia, Vol. 6, No. 1, 105-120 (2007)
DOI: 10.1177/1471301207075643
© 2007 SAGE Publications

Health care decision-making of persons with dementia

Sara Horton-Deutsch

Indiana University School of Nursing, USA

Prudence Twigg

Indiana University School of Nursing, USA

Rebecca Evans

Indiana University School of Medicine, USA

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.

Key Words: consent • decision-making • dementia • family caregivers • older adults


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