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. 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.
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 (buh-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 as long as 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 means healthcare services are distributed equitably throughout society while 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).
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).
Historically underserved populations have faced barriers to accessing palliative care services, reflecting broader structural and social inequities. Health equity means the absence of unfair, avoidable or remediable differences among groups of people (Goswami et al., 2025).
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 difficult. 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, leading to the temptation to "lie" or "bend the truth" to maintain calm and well-being. This has led to the concept of “therapeutic lying”. This is a controversial practice in which lies are told in the best interests of a person living with dementia, 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 and Artificial Intelligence
Increasingly, smart devices are being used in assisted living and other 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 emerged 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. 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 also 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).
The principle of autonomy means 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 person’s well-being (beneficence) is intended to prevent harm. Striking a balance between autonomy and beneficence requires careful case-by-case consideration, guided by ethical and legal frameworks designed to protect a client’s well-being (Saccaro et al., 2025).
A 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? Although this may have helped in the past, at what point should this treatment be stopped?
8.4.1 Maintaining Independence
Case: Mr. Sienna
Background: Mr. Sienna is 90 years old and lives in an apartment at an assisted living facility 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 ADLs.
Antecedent: Yesterday, he was heating up some soup and forgot to turn off the burner on the stove. The fire alarm went off when the soup started smoking, burning the bottom of the pan. Mr. Sienna ran into the kitchen, grabbed the pan, and threw it into the garbage. Fortunately, help arrived and the fire was quickly put out.
Consequence: Mr. Sienna was very upset that he wasn’t able to handle this situation by himself. He burned his hand and started a small fire and said he didn’t know what to do. His daughters took him to the clinic to have his hand treated. 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.
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 in his apartment. They are balancing his need for autonomy with his need for safety and protection. The three sisters decide to take turns sleeping at his apartment overnight and have agreed to stop in during the day. They accept that he is at some risk but believe that his quality of life will be better in his own apartment and that living there is consistent with their father’s life philosophy.
8.4.2 Ceasing to Eat
Case: Mrs. Gould
Background: Mrs. Gould is 92 years old and has severe Alzheimer’s disease. She has lived in an assisted living facility for the past four years. She has help with her meals, but over the last month has intermittently refused food. As a result, she has lost 15% of her body weight over the past 6 weeks. She is no longer able to communicate her wishes.
A 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 inserted if she was no longer able to eat on her own. If she had specified no feeding tube, the doctor 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. He says his mother told him she would did not want to be fed through a 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 in what he feels is in his mother’s best interest, considering what he believes his mother would say if she were able. He is adhering to the principle of autonomy and is demonstrating loyalty and support of his mother’s wishes (beneficence). His sister is refusing to consider her mother’s wishes and is advocating for a course of action that is not in her mother’s best interest (non-beneficence).
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 has power of attorney, he decides to act on what his mother told him when she was able. He feels he is acting in his mother’s best interest (beneficence), honoring a decision she made in the past. No feeding tube was inserted.
8.4.3 Justice, Fairness, and Equity
Case: Alycia
Alycia is a 68-year-old woman who has been living independently in an assisted living facility in Florida. She has been able to pay the monthly fee for her room and board but without much left over each month. Over the past year, she experienced increasing difficulty with her balance and fell several times. She was afraid to tell anyone, so she reduced her physical activity, and limited her social participation in facility activities.
Alycia worked her entire life as a waitress and was never able to save much money. Prior to moving into assisted living, she spent more than 10 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 sold her home in a quiet area of West Palm Beach for $185,000. She moved to an assisted living facility, which costs her $3,850 per month. She has calculated she could afford to live in assisted living for about 4 years before her money runs out.
Alycia did okay at first, then, after breaking her arm in a fall, she realized she was going to need help with some of her daily living tasks. She noticed that one of her neighbors had someone come in every day to help with shopping, bathing, and exercises. She was interested in hiring the helper but learned that it would cost $15/hour. She knew she couldn’t afford that, so she went without.
Alycia managed to get by for another year, not sharing her difficulties with anyone. During that time, she experienced some cognitive changes—she couldn’t figure out how to work the TV and had difficulties with the phone. Normally a fastidious woman who prided herself on her appearance, she stopped bathing and stayed in bed or in her recliner most of the day.
One day she was found on the floor next to her bed, incontinent and confused. She was admitted to the hospital with a broken hip, dehydration, and delirium. After surgery and a 3-week stay in rehab, she was admitted to a local nursing home.
Questions
- Is it fair or equitable that some people can afford private-pay help in an assisted living facility while others cannot?
- Do you think Alycia could have had a better outcome if she had been able to afford a regular caregiver?
- Does Florida pay for private caregivers in assisted living facilities?
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 a person living in an assisted living facility is more than $4,700 per month and can be much higher.
Adverse health conditions are disproportionately associated with race, ethnicity, occupation, and socioeconomic status. A higher burden is experienced by Black Americans and other minority groups, which reflects the impacts of systemic racism and socioeconomic factors.
Alycia may be eligible for financial assistance from the State of Florida through the Optional State Supplements program. The State may supplement her income to cover room, board, and other services provided by the assisted living facility or other authorized facility. This supplementation will be combined with Alycia’s SSI or disability benefits—not to exceed an amount set by the State (FLDCA, 2025).