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 dementia caregivers face as they support their loved one.
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.
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:
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:
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. Dementia caregivers need to be aware of these behaviors. 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:
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.
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.
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:
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 a dementia caregiver 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:
If the conversation doesn’t go well, you should be prepared for the person to become angry with you:
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.
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