Assisted living (AL), one of the fastest growing long-term care option in the US, has a resident profile that increasingly resembles that of the nursing home population. Most AL residents are advanced in age and need assistance with multiple activities of daily living and dementia rates are high, raising concerns about residents? vulnerabilities. Administrators, care workers, residents, family members, and external workers in these largely non-medical care setting routinely encounter ethical dilemmas surrounding care, including in the context of dementia and at end-of-life, often without recognizing them as value conflicts and without awareness of resolution options. Although value-laden issues associated with daily life and care have potentially critical implications for both resident and care partners? quality of life and care experiences, little if any research has systematically studied ethics in the AL context.
The aims of this bioethical issues supplement are to: 1) identify the nature, types, frequency, and context of ethical issues arising in the course of daily life and care interactions between residents and their care partners; and 2) develop a typology of ethical issues arising in AL that categorizes issues on the basis of the conflicting values or uncertainty for stakeholders. We address our aims using data from the parent project, ?Meaningful Engagement and Quality of Life among AL Residents with Dementia.? The five-year study seeks to learn from residents and their care partners and involves studying daily life and care routines. Using an ethics lens, we analyze the Wave 1 data set comprised of interview data, fieldnotes documenting over 1,500 observation hours, and resident record review collected in 4 diverse AL sites. Findings will elucidate the ethical context in this highly popular and complex care setting, form the basis for a future intervention study, and inform policy and practice recommendations aimed at improving AL resident quality of life and overall quality of care and reducing the moral distress of their formal and informal care partners, ultimately enhancing the overall impact of the parent project.
Value-laden issues associated with daily life and care in assisted living have critical implications for residents and care partners, yet little is known about ethics in this setting. The study seeks to understand ethical issues in AL and identify best practices to recognize, classify, and manage ethical issues and lead to positive outcomes.
