People living with dementia and their caregivers face ethical issues every day, ranging from questions such as how to engage with a person living with dementia who is unwilling to accept that she or he has the disease or how to decide whether manipulating a person with dementia is ethically permissible if it promotes their best interest (Lauridsen et al., 2023).
Ethical issues in the care of a person living with dementia often include questions related to autonomy and consent, managing behavioral symptoms, preventing exploitation, and making decisions regarding resuscitation and end-of-life care. Navigating these issues can be challenging, often causing moral distress* for caregivers and providers (Schou-Juul et al., 2024).
*Moral distress: emotional discomfort that occurs when you know the ethically correct action to take but are powerless to on it.
8.1 Key Ethical Principles
In biomedical ethics, several basic ethical principles are commonly accepted. These are (1) autonomy and well-being, (2) beneficence (kindness), and (3) justice. In addition, veracity (truthfulness) is an ethical principle that must be observed in all situations.
8.1.1 Autonomy and Well-Being
Autonomy is the right of an individual to make decisions about their own healthcare and their own life. Residents should be told the truth about their condition and informed about the risks and benefits of treatment. A person can refuse treatment even if the best and most reliable information indicates that treatment would be beneficial, unless this decision has a negative impact on the well-being of another individual. This sort of conflict can create an ethical dilemma.
Decisions made for a person living with dementia (a proxy decision-maker)* must consider a person’s autonomy and allow healthcare providers and family members to respect and uphold a person’s wishes. Decisions must be culturally relevant, respect a person’s autonomy, and include the person living with dementia to engage in end-of-life planning as much as they can (Bucko et al., 2025).
*Proxy decision-maker: a person legally designated to make decisions for someone unable, or no longer able to make decision for themselves.
8.1.2 Beneficence (Kindness): Doing Good
Beneficence (beh-NEF-uh-suhns) is the act of doing good. A decision is beneficent or kind when the same decision is made regardless of who was making it. Beneficence is closely related to the concept of “Do No Harm.” Actions or practices are beneficent if they are in the best interest of the resident and avoid negative consequences.
8.1.3 Justice: Equity and Fairness
Justice is the fair distribution of benefits, goods, and risks (Lauridsen et al., 2023). Distributive justice is the degree to which healthcare services are distributed equitably throughout society. The uneven distribution of care and assistance is an example of distributive justice. When supply is low or costly, many are unable to pay for help. Comparative justice refers to the way healthcare is delivered at the individual level.
Equity means clients receive fair and just treatment, without discrimination. Health inequalities are unjust barriers to receiving equitable access to care. Many factors can influence a person’s health outcomes, including where they live, how they grow up, and their educational and socio-economic background (Giebel, 2024). Health equity means the absence of unfair, avoidable or remediable differences among groups of people (Goswami et al., 2025).
Equitable dementia care should consider the impact of receiving a diagnosis of dementia and information about how to live well and independently for as long as possible. There has been an increasing amount of evidence pointing to many factors leading to unequal outcomes in terms of both diagnosis and care (Giebel, 2024).
Promoting and achieving equity is a matter of fairness. Everyone should be treated with equal respect and should be able to exercise equal influence on decisions made in their name. Unfair health outcomes are nearly always caused by unfair access to opportunities and unfair inequalities in society (Fairness Foundation, 2021).
8.1.4 Veracity (Truthfulness)
Telling the truth is an important part of all human interactions. But consistently telling the truth to a person living with dementia can be complicated, especially when telling the truth causes distress, confusion, or agitation. Nevertheless, telling the truth should always be a caregiver’s starting point.
The difficulty is that telling the truth to clients living with dementia can cause anxiety or do harm. For example, when a person with dementia asks again and again about a deceased relative, reliving the pain of learning about the death of a loved one can cause pain and distress. Because of this, many caregivers admit to telling lies when delivering care, even if it creates an ethical dilemma for the caregiver (Murray et al., 2025).
8.2 Incorporating Ethical Principles into Care
Healthcare workers and caregivers are often faced with difficult ethical decisions. This is particularly true in the care of people living with dementia. Caring for a person living with dementia often presents ethical challenges that require a thoughtful and compassionate approach. By integrating ethical principles such as autonomy, beneficence, and justice, caregivers and healthcare professionals can ensure that individuals living with dementia receive respectful and dignified care.
For healthcare workers and family caregivers, encouraging person-centered care, tailoring support to individual needs and preferences, and promoting advanced care planning can provide the structure and support needed when an ethical conflict arises. This can be accomplished by reviewing a resident’s advance directive before making decisions about medical treatment, ensuring their previously stated preferences are honored.
To promote equity and fairness, a facility can offer free dementia screenings and caregiver support resources. This ensures that all individuals, regardless of financial status, have access to information about dementia resources.
8.3 Ethical Issues Related to the Use of Assistive Technology and Artificial Intelligence
Increasingly, smart devices are being used in long-term care environments. These “smart living” devices collect, retain, and analyze large volumes of personal data, making privacy and security major considerations. Ownership of data, technologies used to ensure encryption and regulations, and policies in place are key themes that emerge when analyzing privacy and security (Lam et al., 2022).
Assistive technologies, some using artificial intelligence (AI) involve aids that support memory, sensors to detect vitals and falls, environmental sensors to detect movement, and advanced security systems. Newer technologies include automatic pill dispensers, emotional support robots, smart home devices (smart lights, voice assistance), and GPS tracking devices.
Distributive justice (ensuring fair access to technology) and preserving the privacy of end-users and their data is often overlooked.
Though smart cameras, motion detectors, and digital aides may sense trouble sooner than human helpers, their presence transforms an older adult's sense of home into a surveillance zone. Many older adults either have no idea what data is being harvested or lack the ability to adjust their settings. This generates an ethical conflict in which security is valued over a person’s dignity and autonomy (Joseph, 2025).
Surveillance can be psychologically harmful. Ongoing monitoring—even aimed at protection—can produce feelings of stigma, anxiety, helplessness, or withdrawal from ordinary activities. When assistive technologies and AI tools override human judgment or fail to account for a person’s comfort and consent, they risk turning care into control (Joseph, 2025).
8.4 Ethical Conflicts and Dilemmas
Ethical dementia care covers a wide range of issues and potential conflicts. Conflicts between respecting self-determination (what a person wants) while acting in their best interest are common. It is important to prioritize a person’s needs while avoiding harm (Lauridsen et al., 2023).
When considering justice, equity, and fairness, conflicts arise because resources are limited. In the United States, equal access to healthcare does not exist, creating an ongoing concern about the distribution of resources, particularly as the population ages and the demand for services increases (Saccaro et al., 2025).
When considering the principle of autonomy, an individual has the right to make their own healthcare decisions. Making decisions for a person living with dementia can create significant ethical challenges and potential adverse effects. Ethically, caregivers must work to balance a client’s autonomy with their duty of care (Saccaro et al., 2025).
When a person is unable to make decisions, it may be necessary to act in the person’s presumed best interest. Acting for the client’s well-being (beneficence) is intended to prevent harm. Striking a balance between autonomy, avoiding harm, and doing good requires careful case-by-case consideration, guided by ethical and legal frameworks designed to protect a client’s well-being (Saccaro et al., 2025).
Another common dilemma in end-of-life care is how much treatment to provide and when to stop treatment for any medical issues that may occur. For example, once a person is enrolled in hospice, is it ethical to continue to go to the emergency department for IV fluids or to treat a urinary tract infection? Although this may have helped in the past, at what point should this treatment be stopped?
Ethical conflicts can arise related to a client’s preferred place of death. Many people want to die at home but may end up in a hospital due to a medical emergency.
An Ethical Conflict: Ceasing to Eat
Mrs. Gould is 92 years old and has severe Alzheimer’s disease. She has lived in a skilled nursing facility for the past four years. She has needed help with her meals for several years, but over the last month has intermittently refused food. As a result, she has lost 15% of her body weight in the past 6 weeks.
The Physician Orders for Life-Sustaining Treatment (POLST) form that she completed when she was able to make her own decisions did not specifically indicate if she wanted a feeding tube if she was no longer able to eat on her own. If she had specified no feeding tube, the doctor and the healthcare surrogate would be legally and ethically bound to honor her wishes.
Her son has medical durable power of attorney to make decisions for her when she is no longer able to do so. He says his mother told him she did not want a feeding tube and he wants to honor her wish. However, his sister is insisting that a feeding tube be inserted to keep her alive as long as possible.
Discussion: Mrs. Gould’s son is acting from what he believes is the best course of action for her; considering what he believes his mother would say if she were able. He is respecting his mother’s autonomy and is demonstrating loyalty and support for his mother’s wishes. His sister is refusing to consider her mother’s wishes and is not considering a course of action that is in her mother’s best interest.
While one might think that the daughter is acting in concert with the principle of beneficence by feeding her, studies show that feeding tubes do not prolong life or improve quality of life in people in the later stages of Alzheimer’s disease. At the very latest stages of Alzheimer’s, the natural course of the disease is that people stop eating and drinking.
Because the brother had power of attorney, he decided to follow his mother’s wishes and act in her best interest (beneficence), honoring a decision she made in the past (autonomy). No feeding tube was inserted.
An Ethical Conflict: Mrs. Yu is Being Harassed by Mr. James
Mrs. Yu is a resident in a large skilled nursing facility in Miami. She is a small woman with mild dementia who uses a wheelchair to move around the facility.
For the last several months, Mrs. Yu has been harassed sexually by Mr. James. He rolls up next to her in his wheelchair and tries to stroke her breasts and reach between her legs. He tries to grab her purse, which is tucked in by her side. She has complained to the nurses, but nobody has done anything. Mr. James has severe dementia and doesn’t understand or listen when told to stop. Some of the employees even think it’s kind of funny and tell Mrs. Yu to avoid Mr. James.
Mrs. Yu has a good relationship with Jennie, the rehab director, and tells her what’s going on. Jennie brings this up with the director of nursing but nothing changes. She brings it up at the next care meeting and nobody knows what to do. Meanwhile, Mrs. Yu is scared to leave her room and has severely restricted activities.
Jennie suggests to Mrs. Yu that she can protect herself by removing a small piece of PVC pipe that has been added to the brakes on her wheelchair to make it easier for Mrs. Yu to lock the wheels. She suggests that when Mr. James tries to grope her, she can use the PVC pipe to push him away. Mrs. Yu agrees not to share this “secret” with anyone. The next time Mr. James tries to fondle her she pulls off the PVC pipe and pokes his hand away. He never bothers her again.
Discussion: Jennie feels she is acting in Mrs. Yu’s best interest (doing good) and supporting Mrs. Yu’s autonomy and independence. Mrs. Yu and feels empowered by her ability to defend herself and is thrilled with the outcome. A few of Mrs. Yu’s friends had experienced the same harassment from Mr. James and were happy to see Mrs. Yu successfully stop these behaviors.
Questions
Do you think the rehab director acted in an ethical manner?
Is the facility management supporting Mrs. Yu’s autonomy and independence by failing to come up with a solution to this problem?
Do you think the solution was fair to Mr. James?