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Ethics and Dilemmas in Dementia Caregiving

Inspīr Senior Living Team

Some memory-loss, such as forgetting an occasional appointment or misplacing car keys is to be expected with age. However, many older adults experience abnormal memory-loss that can interfere with daily life. In fact, nearly 50 million people worldwide are diagnosed with dementia, with Alzheimer’s disease being the most common form of dementia. Dementia is a chronic disease that affects one’s memory, thinking, comprehension, judgement and learning capacity. As the disease progresses, many individuals may become unable to care for themselves and require additional support from a caregiver to assist with basic daily tasks. In fact, according to the Centers for Disease Control and Prevention, nearly 80% of people with Alzheimer’s disease and other forms of dementia receive care in their homes. Because dementia makes it difficult for individuals to make decisions and remember information, there are often ethical dilemmas that arise as a result. Here are some of the most common dilemmas caregivers face as they support their loved one.


Common Ethical Dilemmas in Dementia Caregiving

As individuals progress throughout the stages of Alzheimer’s disease and other forms of dementia, ethical dilemmas can arise for family members and caregivers, especially spousal caregivers.  While navigating these ethical issues depends on the person’s situation, we’ve complied a guide to consult when dilemmas arise. This guide is compiled from evidence-based research and authorized best-practices from leaders in Alzheimer’s disease and dementia research.


Respect for Autonomy

In its simplest form, autonomy is a person’s ability to act on their own values and interests. A person exercises autonomy when they make decisions for themselves based on their own desires. Dementia can affect a person’s ability to understand the consequences of a decision, impair judgement and comprehension, all of which can affect their ability to practice autonomy. However, taking away a person’s autonomy by not involving them in their own care plans can negatively impact their sense of independence and confidence. It’s important for family members to discuss their loved one’s wishes as it relates to their care and treatment, before they are unable to make decisions for themselves.

While it can be tempting to make decisions for your loved one when they are unable, it’s crucial that autonomy is protected. As the disease progresses, autonomy can be preserved by making decisions that honor the loved one’s values and wishes. According to the Alzheimer’s Association, family members should consider the following tips to help honor their loved one’s autonomy when they become unable to make decisions for themselves:


  • Seek the least restrictive alternative when a person is incapable in a specific area. For example, if your loved one is no longer able to feed themselves, hand-feeding should be considered before a feeding tube. 
  • Individuals with decision-making capacity have a moral and legal right to reject or accept any medical treatment, including those with mild or moderate dementia.
  • Reasonable indecision about medical decisions does not indicate incapacity if it aligns the person’s prior statements and beliefs.
  • The wishes of a person with dementia should be considered whenever possible and until safety becomes an issue.


Consent for Treatment and Clinical Trials

Research trials help scientists and clinicians develop a deeper understanding of diseases, which ultimately allows them to enhance treatment options for patients with Alzheimer’s disease and other forms of dementia. While trials aren’t designed to provide individualized care, they do help produce generalized knowledge. There are many different reasons why people with dementia decide to enroll in clinical trials. For some, clinical trials may provide direct medical benefit, while others are looking to cultivate a sense of altruism in helping others. Informed consent is required for medical interventions to ensure that the person participating in the trial understands the potential risks, benefits and alternatives to participating. Alzheimer’s disease can alter a person’s ability to make sound judgements, which presents some ethical challenges when it comes to enrolling individuals with dementia into clinical trials. However, it’s become common practice for surrogate decision makers, such as a trusted family member or friend, to provide consent for their loved one to participate in trials. It’s important for surrogate decision-makers to understand how to properly make decisions on their loved one’s behalf. The Alzheimer’s Association suggests that surrogate decision makers follow these guidelines:

  • Abide by a loved one’s wishes as expressed in legal documents such as advanced directives.
  • Only make decisions that are aligned with your loved one’s values, beliefs, and past decisions.
  • Make decision that maximize the benefit for the person with dementia.


Sexual Activity

As dementia progresses, abnormal changes in the brain can cause individuals to behave differently, especially when it comes to sex. Dementia can cause a person to behave in a sexual way that they and other people around them find challenging. These behaviors may include changes in the way they respond to sex, inappropriate or aggressive sexual behaviors, mistaking a person for someone else or behave sexually in public. Here are a few ways you might expect your loved one’s sexual behaviors to change as they progress through the stages of Alzheimer’s disease or other forms of dementia:

  • Responses to sex: Some individuals may respond as they always have during sexual encounters while others may appear cold and detached. Some partners may forget that they have had sex immediately afterwards or no longer recognize their partner as a sexual partner.
  • Inappropriate behavior: Individuals with dementia may behave inappropriately towards other people, especially to those who are providing personal care such as bathing or toileting. It’s important that these concerns are shared with family members, care workers, and social workers to help prevent this from happening again. Distraction techniques can be implemented if this behavior is ongoing. This may include changing activities, giving simple tasks or gently but firmly redirecting behaviors.
  • Aggressive behavior. In some cases, individuals with dementia may go through phases of being sexually aggressive, either with their partner or other people. In these situations, it’s best to remove yourself and use distraction methods.
  • Sexual behavior in public. Dementia can directly affect a person’s inhibitions, causing them to do things they would not normally do in public. These behaviors could include touching themselves or other people inappropriately or using language they do not normally use.


Electronic Tracking

As dementia progresses, confusion, wandering, and becoming lost can become increasingly common behavioral disturbances for those with dementia. According to the Alzheimer’s Association, up to 60% of individuals with Alzheimer’s disease will wander during the course of their disease, and of these individuals, 50% will suffer serious injury or even death. More recently, devices that use global positioning and electronic tracking have been specifically designed for those with Alzheimer’s and dementia. These devices are used for those who present wander risks and can be used by family members and caregivers to track the locations of their loved one. However, this raises ethical issues of limiting personal liberty. Currently there are no clear-cut answers, evidence, or research that has caught up with these existing technologies. Additionally, laws on surrogate decision-making do not address electronic tracking.

Electronic tracking gives the ability for the person with dementia to travel within their community, maintain a sense of independence, and stay independent for longer. These technologies also give peace of mind to family members and caregivers knowing they can locate their loved ones when they become lost.

The Alzheimer’s Association's statement on electronic tracking recommends considering the electronic tracking system as a part of an overall safety plan, rather than a replacement for supervision. Individuals with dementia should be included in the discussion of their own safety plan and should be aware of the electronic tracking device if it’s going to be included in the plan. If the individual does not have the capacity to consent to the use of an electronic tracking system, the person’s surrogate, such as an adult child or family member, should weigh the costs and benefits. It can also be helpful to discuss in what situations the device should be used.


Therapeutic Lying

Dementia damages the brain and can cause those with dementia to have difficulty processing information and communicating emotions. This can cause people with dementia to experience reality differently than those without the disease. That’s why accepting difficult news, such as the death of a loved one, can cause confusion, pain, anxiety, fear, and anger. Instead, experts suggest using a tool called therapeutic lying in situations that can result in severe behavioral changes.

Therapeutic lying is the practice of deliberately deceiving those with dementia for reasons considered in their best interest. For example, if your loved one is looking for their mother who is deceased, you could say, “she’s at the store,” instead of causing emotional havoc in telling the truth. Other experts suggest trying to get to the root cause of the situation. When a person asks for their deceased parent, it could suggest a need to feel loved, safe, and secure. Instead of using therapeutic lying, another option is to look for ways of addressing the root cause.


Diagnosis Disclosure

Telling your loved one about their own dementia diagnosis should be the usual practice. The Alzheimer’s Association recommends sharing the diagnosis as early as possible given that the person has the capacity to understand the diagnosis and other pertinent information. This even includes individuals who have been diagnosed at a later stage. If your loved one lacks the ability to remember diagnosis-related information, family or other trusted individuals should be involved in the conversation. A full disclosure of the diagnosis provides time to plan for the future, such as preparing legal and financial documents, building a supportive care team and enrolling in clinical trials.


When disclosing the diagnosis to an individual, the Alzheimer’s Association Early Stage Advisory Group recommends using the following tips:

  • Talk directly to the person with dementia before including other family members in the conversation.
  • Be honest about what you do and don’t know about the disease.
  • Speak with compassion and use sensitive language when discussing the diagnosis.
  • Prioritize creating a plan for healthy living, including medication management, diet, exercise, and social engagement.


Driving and Dementia

As dementia progresses, cognitive impairment and declining motor function will worsen, and ultimately require the individual with the disease to stop driving. However, it’s difficult to know exactly when this will happen as so little is known about how the various stages of dementia relate to driving behavior. Most often, family members become aware of driving performance errors after witnessing them or being notified of an incident.

Driving represents a sense of freedom and autonomy for many individuals; so, taking away the keys can be a difficult experience. However, the Alzheimer’s Association makes it clear that a dementia diagnosis does not mean an individual needs to stop driving. However, it’s important to plan head for the time when driving is no longer possible. Those with dementia should also be involved in decision-making and planning regarding the cessation of driving.


The most important thing you can do is to start the conversation with your loved one. The Alzheimer’s Association compiled a list of tips to consider when preparing for the conversation:

  • Stress the positives and offer alternatives
  • Address resistance while reaffirming your unconditional love and support
  • Appeal to the person’s sense of responsibility


If the conversation doesn’t go well, you should be prepared for the person to become angry with you:

  • Be patient and firm. Demonstrate understanding.
  • Acknowledge the pain of this change and appeal to the person’s desire to act responsibly.
  • As a last resort, take away the car keys or consider selling the car.


Managing Ethical Dilemmas at Inspīr Senior Living

Ethical dilemmas will present themselves at various stages of the disease. Our Oceana Memory Care includes personalized, wellness-focused lifestyle programming, customized care plans, and a highly trained staff—all in a therapeutic and secure setting. Our evidence-based approach to senior memory care is integrative, intentional, interdisciplinary, intimate, and individualized, enabling our residents to get the most out of every moment, every day.

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