Dementia Caregiving and Ethical Dilemmas

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, judgment 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. 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 compiled 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 judgment 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. 

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 Maplewood Senior Living 

Ethical dilemmas will present themselves at various stages of the disease. Our healthcare professionals are trained in supporting family caregivers who provide care to their loved ones with dementia. At Maplewood Senior Living, we have the tools and training to manage these ethical dilemmas while prioritizing patient-centered care in an ethical and compassionate way. If you are interested in our offerings or have questions about caring for a loved one with dementia, please contact us today.