Informed consent is a fundamental right that ensures individuals understand and voluntarily agree to decisions about their care. For people living with dementia, navigating consent can become more complex as cognitive changes progress. This page includes external resources to help caregivers, families, and professionals support ethical, person-centered decision-making.

Resources

A Practical Guide to Informed Consent. Temple Health Informed Consent Toolkit. Available at https://ictoolkit.templehealth.org/html/ictoolkitdownloads.html.

  • This guide presents a toolkit designed to improve the informed consent process in clinical care. It emphasizes that consent is a communication process – not just a signed form – and addresses legal, ethical, and practical challenges such as health literacy and language barriers. The guide offers tools for staff training, assessing current practices, improving written materials, and enhancing patient understanding across healthcare roles.

Informed Consent. AMA Code of Medical Ethics. American Medical Association. Available at https://code-medical-ethics.ama-assn.org/ethics-opinions/informed-consent.

  • This resource from the American Medical Association outlines the ethical and legal importance of informed consent in medical treatment. It emphasizes that physicians must ensure patients (or their surrogates) understand their medical options, risks, and benefits in order to make voluntary, informed decisions, and must document this process clearly in the medical record.

Informed Consent. Health in Aging. Available at https://www.healthinaging.org/age-friendly-healthcare-you/care-what-matters-most/informed-consent.

  • This webpage from Health in Aging discusses how all adults have the legal right to make informed medical decisions, including the right to refuse care. It highlights the importance of shared decision-making, informed consent, and assessing decision-making capacity, especially in adults with cognitive impairments, while emphasizing respect for individual values, cultural beliefs, and autonomy.

Shared Decision-making in Persons Living With Dementia: A Scoping Review. (2023). Mattos, M. K., Gibson, J. S., Wilson, D., Jepson, L., Ahn, S., & Williams, I. C. Dementia (London, England), 22(4), 875–909. Available at https://doi.org/10.1177/14713012231156976.

  • This scoping review synthesizes research on shared decision-making in individuals living with dementia, highlighting that patients, their families, and healthcare providers value this approach for health promotion, end-of-life planning, and other decisions. Findings emphasize the need for further research on decision-making tools, considering cognitive status and cultural differences in healthcare systems.