CAREGIVING FOR THOSE WITH DEMENTIA: ETHICS & DILEMMAS
LESSON OUTLINE
INTRODUCTION TO DEMENTIA
• Dementia is a chronic disease characterized by progressive changes in memory, thinking, comprehension, judgement and learning capacity.
• 50 million individuals worldwide have dementia with 10 million new cases each year.
• Caregivers are often faced with ethical dilemmas as individuals with dementia progress through each stage of the disease.
ETHICAL PRINCIPLES AND VALUES IN CAREGIVING
• Autonomy and Well-Being
> Autonomy refers to the ability and practice of being able to make decisions about life, healthcare, and treatment.
> Those with dementia have the right to maintain their autonomy, despite a diagnosis.
• Beneficence
> All healthcare decisions made by providers and caregivers should be rooted in kindness and patient-centered.
• Justice
> Those with dementia should not be seen simply as victims of disease.
> People with dementia may need assistance but should be included as people with their own views and contributions to society.
• Truthfulness
> Healthcare providers and caregivers should honor truth but also consider what is best for dementia patients—long-term needs or day-to-day happiness.
ETHICAL CONFLICTS AND DILEMMAS:
1. Respect for Autonomy
> As cognitive abilities decline, respecting an individual’s autonomy can often conflict with their ability to make sound decisions and pose safety concerns.
> A dementia diagnosis is not enough to restrict the right to autonomy.
> Caregivers should seek to respect an individual’s autonomy by evaluating the patient’s values and consulting with trusted surrogates.
2. Consent for Treatment and Clinical Trials
> Informed consent is required for medical interventions and treatments.
> Those with dementia may find it difficult to provide informed consent as their cognitive abilities decline.
> Mental capacity assessments and discussions with trusted surrogates should be issued when an individual’s capacity to provide consent is in question.
3. Sexual Activity
> As dementia progresses, individuals may be unable to provide sexual consent.
> Caregivers and healthcare providers have the obligation to look out for the wellbeing of patients and should note any concern about a patient’s sexual activity.
> When concern arises, healthcare providers should issue an assessment of the resident’s capacity to consent and discuss these concerns with the appropriate individuals.
4. Therapeutic Lying
> Dementia damages the ability to process emotions, information, and communication skills.
> Revealing sensitive information, such as the sudden death of a relative, can do more harm than good to the individual with dementia.
> Experts suggest therapeutic lying, or the practice of deliberately deceiving patients for their best interest.
5. Diagnosis
Disclosure
> Disclosing a dementia diagnosis to an individual should be the usual practice.
> The diagnosis should be disclosed early and include trusted individuals who will provide support and care as the person with dementia progresses through the disease.
> The four ethical principles should be considered during diagnosis disclosure.
6. Driving and Dementia
> As dementia progresses, cognitive impairments can make driving dangerous.
> Driving often represents a sense of freedom and independence, so discussing the need to stop driving should be done carefully.
> Experts suggest consulting the state’s programs and guidelines around dementia and driving and referring to an occupational therapist, physician or family attorney.
7. Electronic Tracking
> Many individuals with dementia can be at risk of wandering and getting lost, especially in the later stages.
> Electronic tracking devices allow family members to locate loved ones with dementia if they got lost and can also be used to prevent wandering.
> Experts suggest using electronic tracking only as a part of an overall safety plan.
> The individual with dementia should be aware of the tracking devices and be included in discussions about its use.
8. End of Life Care
> Individuals with dementia are considered to be terminally-ill.
> These individuals and family members often have to choose between hospital interventions and palliative care.
> Hospital stays can cause individuals to enter into heightened states of agitation and confusion.
> Palliative care is believed to be the highest quality end-of-life care for individuals with dementia.
> Experts suggest that end-of-life care plans are made early and discussed often.
9. Feeding Issues in Advanced Dementia
> In early to mid-stages of dementia, individuals may require supervision during eating and mealtimes due to forgetfulness.
> In late stages of dementia, individuals may have difficulty with chewing and swallowing.
> Individuals and surrogate decision-makers often choose between utilizing the PEG tube and hand feeding.
> Research suggests feeding by PEG tube presents more risks and harm than careful feeding by hand.
10. Other Ethical Dilemmas
> Those with dementia are more at risk of senior scams, which are designed to trick individuals into giving monetary gifts. Experts suggest family members or caregivers watch closely for any suspicious behavior.
> Individuals with dementia are at an increased risk of falling and fall-related injury. Rather than using physical restraints, caregivers are encouraged to eliminate any fall hazards.
> Robotic technologies allow individuals with dementia to keep their independence for longer. The concern is individuals will be tricked into thinking the robot is a human-being. Discussing the use of the robot with an individual early and implementing this technology in early stages can prevent this concern.