Although dementia is a highly disabling neurocognitive disorder, and many people with dementia rely on surrogates’ involvement in decision making as the disease progresses, evidence also suggests that many dementia patients can reliably articulate their values, preferences and desires. As a result, clinicians have obligations to ensure that people with dementia can maintain active, central roles in making decisions about their care and well-being.
This month’s AMA Journal of Ethics® considers strategies for humanizing and supporting people with dementia so that they can continue to live lives consistent with their needs and preferences, even as the disease progresses.
Take a moment to consider this question: The husband of a patient with dementia is in the patient’s bed. How should the facility respond?
- Determine her level of interest in sharing her bed.
- Assess her capacity to consent to sexual intimacy.
- Educate the husband about his duty as a surrogate decision maker.
- Tell her husband that the patient’s safety might be at risk.
Give your answer and find responses to this question in the July issue of the AMA Journal of Ethics, which explores quality of life in dementia.
“Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being.” Supporting people living with dementia requires seeing beyond the common negative focus on disability. This article draws upon qualitative research on dementia involving people living with dementia as active participants. Recognizing that many people living with dementia remain capable of making decisions that affect their lives, the authors highlight a research-based approach to support known as “authentic partnerships” that includes people living with dementia as equal partners.
“Strategies for Building Trust with the Caregiver of a Patient with End-Stage Dementia.” This case study describes a patient with advanced dementia and a spouse with unrealistic expectations about nutrition. By eliciting the spouse’s perspective, the physician can gain insight and rebuild trust that protects the interests of both the patient and the spouse. The physician can affirm the immeasurable caregiver contributions from the spouse by, acknowledging her journey, asking for her advice and helping her make meaning in the time available with her husband.
“Ethics and Intimate Sexual Activity in Long-Term Care.” In this case study, the staff of a long-term care facility discovers that the husband of a resident with dementia is in bed with her. The case illustrates the challenge to professionals and organizations who try to create a home-like environment that maximizes residents’ autonomy while also ensuring their safety. The author describes an approach to assessing capacity to consent to intimate sexual activity, followed by guidelines that nursing homes can implement to support residents who wish to engage in sexual activity. He also offers recommendations for supporting long-term care staff and family members of residents interested in intimate sexual activity.
“How Should Clinicians Counsel a Woman with a Strong Family History of Early-Onset Alzheimer’s Disease About Her Pregnancy?” The authors consider a case of a woman with a strong family history of early-onset Alzheimer’s disease. She is early in her pregnancy and unsure about learning her own genetic status. The authors address the ethical and clinical dimensions of each of her options, which include genetic testing, genetic counseling, and termination or continuation of the pregnancy. Clinicians can help ensure autonomous decision-making of patients reflecting on these options in light of their goals and values.
What the Code says
“The AMA Code of Medical Ethics’ Opinions on Patient Decision-Making Capacity and Competence and Surrogate Decision Making.” Although the Code of Medical Ethics does not have much to say about dementia per se, the Code does consider patient decision-making capacity, mental competence, and surrogate decision-making for those who are unable—over the short term or the long term—to make their own health care decisions.
In the journal’s July podcast, social worker Beth Soltzberg—director of the Alzheimer's/Related Disorders Family Support Program at Jewish Family and Children’s Service in Massachusetts—discusses the importance of creating social connections for people with dementia.
Submit manuscripts and artwork
The journal’s editorial focus is on commentaries and articles that offer practical advice and insights for medical students and physicians. Submit a manuscript for publication. The journal also invites original photographs, graphics, cartoons, drawings and paintings that explore the ethical dimensions of health or health care.
The Conley Art of Medicine and Ethics Essay contests for medical students, residents, and fellows is now open through Sept. 25, with $3,000 prizes for winning entries and up to two $1,000 honorable mentions.
A look ahead
Upcoming issues of the AMA Journal of Ethics will focus on iatrogenesis in pediatrics, and incarceration and correctional health care. Sign up to receive email alerts when new issues are published.
- How to respond when medicine’s culture causes moral distress
- In complex cancer cases, tricky mental health issues often arise
- The fierce urgency of addressing language, literacy care barriers
- Manipulating patients’ memories: Not for the unfamiliar
- Code of Medical Ethics modernized for first time in 50 years