In the elder justice field, one of the more complex issues to navigate is around balancing autonomy and safety in individuals with dementia. The NCALL team recently discussed an episode of The Daily podcast called “The Mother Who Changed: A Story of Dementia.” This episode, framed initially as a story of elder abuse, is based on an article that first appeared in the New York Times magazine in 2023. It tells the story of Diane, who has experienced some dementia-related personality changes around the same time she enters a new relationship, and her daughters, who are trying to help manage her care and well-being. While this family’s story illustrates many of the thorny issues that commonly face older adults and the people who love them, at its core are fundamental questions about identity, agency, and how we best support the people we love.
One of the most pressing dilemmas faced by family members, caregivers, and service providers is navigating the line between safeguarding vulnerable older adults and respecting their right to self-determination. People living with dementia can experience a gradual erosion of their ability to make informed decisions, leading to concerns about safety in the realms of personal relationships, finances, and self-care. In some circumstances, loved ones may be compelled to intervene to prevent harm, even if it means overriding the individual’s preferences or desires.
However, this intervention raises ethical concerns, especially when the desires expressed by individuals with dementia conflict with their previously stated wishes or values, as in Diane’s case. For instance, an older adult who was once comfortable with institutional care as part of their long term care plan may now insist on remaining at home despite the increasing risks to their safety and well-being. And, in Diane’s case, we saw the added complexity of potential coercion by a new intimate partner – someone she at one time intensely disliked. In such cases, caregivers and service providers must grapple with the challenge of honoring the individual’s autonomy while ensuring their protection—an emotional balancing act fraught with moral and practical considerations.
Dementia is a term that encompasses many types of disease, and there can be tremendous variation in the disease’s progression from person to person. And, as we saw in Diane’s situation, people with dementia may experience different levels of symptoms from one day to the next. Unfortunately, ageism and stereotypes about older adults often complicate society’s response to people with dementia. Ageist beliefs may lead to trivialization of the expressed desires of older adults with dementia, undermining their agency and right to self-determination. Service providers may inadvertently overlook signs of mistreatment or neglect, attributing behavioral changes to the natural progression of dementia rather than potential abuse or exploitation. Older adults with dementia who report being harmed may not be believed, despite research showing that they can accurately report traumatic experiences (Wiglesworth, A., et al., 2010).
Addressing these challenges requires a collaborative mindset that prioritizes both the safety and autonomy of older adults with dementia. Caregivers and service providers must adopt a person-centered approach that acknowledges the individual’s preferences, values, strengths, and unique life history while also safeguarding their well-being. This entails engaging in open and empathetic communication, actively involving older adults in decision-making to the fullest extent possible and respecting their right to take risks and make choices, even if they appear unwise to others.
Furthermore, combating ageism within healthcare and social service systems is essential to ensure that older adults with dementia receive the support and protection they need. This involves providing education about the unique needs of this population, training professionals to recognize and respond to signs of elder abuse in a survivor-centered way, and promoting policies and practices that uphold the dignity and autonomy of older adults.
In conclusion, the intersection of elder abuse, dementia, and caregiving presents an emotional and challenging landscape for families, service providers, and society. For the NCALL team, Diane’s case offers more questions than answers, and underscores the necessity of grappling with the nuanced and gray areas in our work.
We invite you to listen to Diane’s story, and consider the following questions:
- Have you encountered situations where individuals with dementia express desires that conflict with their pre-illness preferences?
- Are there systems or organizations that could have intervened in Diane’s life to mitigate familial discord?
- How should we navigate scenarios where individuals with dementia express wishes that are contrary to pre-illness directives, potentially resulting in the person’s suffering?
- What measures could have been implemented to enhance Diane’s safety and well-being?
- What insights does Diane’s experience offer regarding the challenge of balancing autonomy and safety for individuals with dementia?
Written by Ann Laatsch, J.D., NCALL Justice System Coordinator
Wiglesworth, A., Mosqueda, L., Mulnard, R., Liao, S., Gibbs, L., & Fitzgerald, W. (2010). Screening for abuse and neglect of people with dementia. The Journal of the American Geriatrics Society, 58(3):493-500).