Dementia is a growing issue at the end of life that presents unique challenges for advance care planning. Advance directives are a useful and important component of end-of-life planning, but standard advance directives have less utility in cases of loss of capacity due to dementia. An advance directive designed to specifically address end-of-life issues in the setting of dementia can provide patients with increased autonomy and caregivers with improved information about the desires of the individual in question. The Dartmouth Dementia (...) Directive is a dementia-specific advance directive, available online, that seeks to address common concerns of individuals who are planning for dementia-related end-of-life care. This directive was piloted in a community-based workshop, which provided important details and perspective on the best use of dementia-specific advance directives in the greater population. (shrink)

Research represents an avenue through which patients can contribute to the knowledge base surrounding their condition. However, persons with dementia cannot legally consent to participation in most scientific research. One possible avenue to preserve patient autonomy in the sphere of research is through an advance planning document. Scholars of medicine, ethics, and law have largely approached this topic from a theoretical angle, compelling the authors to develop and implement a tangible research-specific advance planning tool. In order to inform the creation (...) of this novel legal instrument, the present study leveraged semistructured telephone interviews with cognitively intact older adults in the Upper Connecticut River Valley region of New Hampshire. Participants were prompted to reflect on their attitudes toward participation in scientific research, should they develop dementia. They were also asked to consider the possibility of incorporating research into their advance planning regime, their preferred format for a research-specific advance planning tool, and the potential relationship between an advance planning tool and their surrogate decision maker in the context of research participation. Qualitative analysis was employed to extract themes from interview responses, revealing a pervasive desire for an advance planning tool that embraces specificity, flexibility, practicality, and the integral role of the surrogate decision maker. Ultimately, through collaboration with physicians and an elder law attorney in the region, these findings were translated into a research-specific advance planning component within the Dartmouth Dementia Directive. (shrink)

Advance directives (ADs) offer the opportunity for patients to express their desires regarding medical care in advance of any form of incapacitation. However, the efficacy of ADs in achieving care that aligns with patients’ preferences is the subject of intense ethical debate. Current instructional AD formats may not allow for expression of the reasoning or values behind a patient’s care preferences, limiting their utility and efficacy. Here, we review written AD formats and their limitations, and discuss video messages, as a (...) supplement to written ADs, as a potential improvement. While video messages have limitations of their own, their potential use as a tool for better understanding patients’ wishes and values suggests a need for further research and consideration of their application and integration into standard clinical practice. (shrink)