Healthcare workers and caregivers are often faced with difficult ethical decisions. This is particularly true in the care of people living with dementia.
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 act 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. Clients 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.
A diagnosis of dementia does not necessarily mean a person lacks autonomy or is unable to make decisions. For a person living with dementia there can be a great deal of day-to-day variation in their ability to make decisions.
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. 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. 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.
There is concern among many caregivers that ,in some situations, telling the truth may cause distress, confusion, or agitation; this leads to the temptation to lie or "bend the truth" to maintain calm and well-being. It is a controversial practice when lies are told in the best interests of a person living with dementia in order to avoid distress or harm.
The difficulty is that telling the truth to clients living with dementia can cause distress or do harm. For example, when a person living with dementia asks again and again about a deceased spouse, reliving the pain of learning about the death of a loved one can cause a great deal of 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
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.
Many caregivers lack confidence in managing the challenging behaviors of people living with dementia (Schou-Juul et al., 2024). This can be overcome by training caregivers in ethical decision-making and dementia-specific challenges. Unfortunately for direct care providers, a high turnover rate, lack of support, and low pay contribute to a lack of training.
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 prevent harm, healthcare providers must regularly review a resident’s healthcare plan (including medications) to ensure that a resident living with dementia receives appropriate pain management to alleviate discomfort without over-reliance on sedative medications that could increase fall risk.
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
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 usually 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.
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 Examples of 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, individuals have 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.
8.4.1 Maintaining Independence
Case: Mr. Sienna
Mr. Sienna is 90 years old and lives in an apartment near his daughters. He was a pilot during the Viet Nam war and has been fiercely independent his entire life. He is in the moderate-to-severe stage of dementia and is unable to independently perform many of his instrumental ADLs such as medication management, shopping, and cooking.
Mr. Sienna is in the clinic for his annual evaluation. He does not know his address, the current date, the president’s name, the season, day, or time. His Mini Mental State Exam score is 11/30. When asked what he would do if his apartment caught on fire, he replied, “I would get some water and put it out.”
His three daughters discussed the situation with a social worker and a nurse practitioner in the neurology clinic. Although Mr. Sienna’s safety awareness is questionable, his daughters state that he has always been independent and does not like people taking care of him. They decide that for now they will support him in his current living situation.
Discussion: In making decisions on Mr. Sienna’s behalf, his daughters are using the principles of autonomy and beneficence. Mr. Sienna’s lifelong desire to be independent guided their decision to allow him to continue to live alone. They are balancing his need for autonomy with his need for safety and protection.
Mr. Sienna agrees to attend an adult day center 3x/week, and his daughters decide to take turns sleeping at his apartment overnight and to stop in during the day. They accept that he is at some risk living alone but believe that his quality of life will be better in his own apartment and that living alone is consistent with their father’s life philosophy.
8.4.2 Justice, Fairness, and Equity
Case: Alycia
Alycia is a 68-year-old woman with mild dementia living independently at her home in Palm Beach. Over the past year, she has experienced increasing difficulty with her balance and has fallen several times. She is afraid to tell anyone, so she has reduced her physical activity, and stays at home most of the time.
Alycia worked her entire life as a waitress and was never able to save much money. She spent the last ten years caring for her husband. She was unable to hire a caregiver and had to cut back on her hours at work. After her husband died, Alycia became increasingly isolated and depressed.
After breaking her arm in a fall, Alycia realized she needed to do something. One of her neighbors told her she attended an adult day center during the week. Alycia was interested but learned that it would cost $50 per day. She knew she couldn’t afford that, so she decided not to go.
Questions
- Is it fair or equitable that some people can afford to pay for services while others cannot?
- Do you think Alycia could have had a better outcome if she had enrolled in an adult day program before she dislocated her shoulder?
- How will Alycia afford the cost of adult day services?
Discussion: 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. In Florida, the average out-of-pocket cost for adult day services is more than $2,000 per month.
Alycia may be eligible for financial assistance through Medicaid, the Veterans Administration, one of the Florida PACE centers located throughout the state or from the State of Florida through the Optional State Supplements program. (FLDCA, 2025).