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 can include questions related to autonomy (independence) 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.
Prioritizing a person’s needs while avoiding harm is a key issue. Respecting what a person wants while acting in their best interest can be a potential conflict (Lauridsen et al., 2023).
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 person.
There are many challenges related to autonomy. A diagnosis of dementia does not necessarily mean a person 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.
End-of-life decisions made by a proxy 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).
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 client 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.
Many caregivers are concerned 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 a person’s 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 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
By integrating ethical principles such as autonomy, beneficence, and justice, caregivers and healthcare professionals ensure that individuals living with dementia receive the respectful and dignified care they deserve.
For healthcare workers and family caregivers, encouraging person-centered care, tailoring support to individual needs and preferences, and promoting advanced care planning provides the structure and support needed when an ethical conflict arises. Reviewing a client’s advanced care directive before making decisions about medical treatment ensures their previously stated preferences are honored.
8.3 Ethical Issues Related to the Use of Assistive Technology
Assistive technologies include 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, and smart home devices.
Intelligent assistive technologies are being used to support individuals living with dementia. “Intelligent” means that these technologies analyze their environment using sensors and different forms of artificial intelligence. They operate somewhat independently. Examples of such devices include smart GPS tracking systems that can learn the usual routes of their users and report deviations, smart home systems that use sensors to detect falls and call for help, and (humanoid) care robots that interact with their users (Welsch and Schicktanz, 2025).
Intelligent assistive devices can increase the safety and independence of a person living with dementia (autonomy), prevent harm, and promote overall good (beneficence). Intelligent assistive devices can also relieve the physical and psychological burden of family and professional caregivers and increase the overall quality of dementia care (Welsch and Schicktanz, 2025).
Though smart cameras, motion detectors, and digital aides may sense trouble sooner than human helpers, their presence can transform an older adult's home into a surveillance zone. Many older adults either have no idea what data is being harvested, have not consented to the use of these devices, and 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).
Ongoing monitoring—even aimed at person’s 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
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).
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).
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? 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 Mrs. Gould
Case Example 1
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 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.
8.4.2 Maria Enrolls in Hospice
Case Example 2
Background: Maria is 96 years old and lives at home with help from her daughter Alma and paid caregivers. She has severe dementia, muscle and joint stiffness, and back pain. She needs help with medications, shopping, bathing, transfers, and cooking.
Maria is in the clinic for her annual evaluation. She does not know her address, what city she lives in, the president’s name, the season, day, or time. When asked what she would do if her house caught on fire, she replied, “I would call 911” even though she can no longer use a phone.
After several years of taking care of her mother, Alma is exhausted and worried about her mother’s recent decline in function. She told the doctor that Maria didn’t want to get out of bed in the morning, wasn’t eating very much, and was sleeping a lot more than she used to. She asked the doctor about hospice, but the doctor seemed uninterested and refused to place an order. Alma returned 2 months later with another request for hospice and the doctor finally agreed.
Discussion: When the hospice nurse arrived, he brought a large bag filled with all sorts of medications that Maria didn’t need, including morphine, and nausea, antianxiety, and antiseizure medications. This confused Alma but she didn’t get any information from the nurse about why he brought so many medications.
Alma was also confused about whether or not she should take her mother to the hospital for a urinary tract infection or signs of dehydration. Maria’s doctor didn’t provide any information and although Maria received treatment for these things, the hospital personnel discouraged her from coming back for this type of care because they said she was on hospice.
Because advanced dementia can last an average of two years, healthcare providers do not always recognize when a person needs hospice care. And a person may need end-of-life support before reaching a more advanced stage of dementia. The lack of hospice services can lead to increased hospitalizations and ineffective care practices as a person nears the end of their life (Bosco et al., 2024).
Questions
- Why did Maria receive so many medications when she enrolled in hospice?
- Should hospice differentiate dementia from cancer or other complex medical conditions?
- Could the doctor and hospice nurse have provided Alma and Maria with more information about medications and services?
- What ethical issues may have been created in this situation?
Alma feels it would have been helpful if she had been told what to expect. Some kind of a very short, one page outlining the services, medications, and equipment her mother would be receiving from hospice would have helped Alma in her role as a family caregiver (Bosco et al., 2024).
From an ethical perspective, the doctor’s initial refusal to order hospice failed to consider the well-being of the caregiver and the client. She failed to act with kindness (beneficence), placing a great deal of additional and unnecessary stress on Alma delayed needed services.
When the hospice nurse arrived with several potentially dangerous and unnecessary medications and failed to explain what they were for, he violated the concept of “beneficence”, particularly “do no harm”.
8.4.3 Fear of Discharge from Hospice
Case Example 2
Background: Alycia is a 98-year-old woman with moderate to severe dementia receiving hospice services at her home in Palm Beach. She has congestive heart failure and arthritis and is experiencing increasing difficulty with her balance. She has fallen several times in the last year and broke her shoulder in a recent fall.
Alycia has a son and daughter who share caregiving responsibilities. Several weeks ago, Alycia got pneumonia and spent 2 weeks in the hospital. She returned home in a very weakened condition and was not expected to live much longer. Her doctor encouraged the family to enroll Alycia in hospice.
Due to the care Alycia received, she began to get stronger and was discharged from hospice after 3 months. This came as a shock to the family because they had come to rely on the services provided by hospice.
Discussion: For her daughter and son, it felt like a Catch-22 situation in which hospice came in and provided excellent care for Alycia. This provided relief and support for the family. Little by little, Alycia got stronger and was discharged from hospice. Her daughter said, “somebody’s feeding her, talking with her while she’s eating, and she starts to do well and then hospice leaves” (Bosco et al., 2024).
The discharge was abrupt and left the family struggling to understand what to do. “Certainly, I would have wanted a family meeting well in advance of when she was going to be discharged”, said her daughter. “I would have wanted hospice to spell out their transition strategy. I happened very quickly, and I thought this should not happen this way.”
Questions
- Could hospice have communicated better with Alycia’s family?
- Would regular care meetings help?
- Does discharge from hospice mean the caregivers become solely responsible for the care of the person with dementia?
- What ethical issues do you think were involved?
Alycia’s situation points out the difficulties associated with hospice care for older adults living with dementia. As mentioned earlier, a person living with dementia can live for a longer time that someone diagnosed with cancer. Losing hospice services means caregivers are responsible for all caregiving duties once again. Some caregivers report that it feels as if they are “going back to square one”.
Alycia’s family felt that her mother’s discharge from hospice was unjust and unfair. Although Alycia was doing better since her discharge from the hospital, her daughter was convinced that ending hospice care was not in her mother’s best interest. The lack of support caused a great deal of additional stress for the family. Within a month, Alycia fell again, broke her hip, and was re-admitted to the hospital. Alycia returned home after several weeks in a rehab facility with hospice services.