____ Alzheimer’s Disease and Other Dementias: Symptoms, Stages, and Communication Strategies Expanded CASE STUDY #2: ETHICAL ISSUES
• Driving • Finances • Housing • Care • End of life
Michael Smith is a community leader, philanthropist, widower, and business owner. He is 68 years old and recently promoted his son Dave, age 45, to become the CEO of his company. Michael plans to remain president, but he wants to travel and play pickleball while maintaining control over the company—Dave would manage the day-to-day oversight. More than two years ago Michael was diagnosed with Alzheimer’s disease. He shared it with one person—his long-term trusted assistant, Beverly. He had done long-term planning, including a transition of control of business, but he had no intention of implementing it any time soon. Beverly had quietly assumed the role of caregiver, in addi- tion to her professional responsibilities. She managed his medications, made sure he had healthy food while at work, and even arranged for a personal trainer to come twice a week. In recent months Michael’s confusion and memory loss increased. Beverly continued to keep her promise to not share his diagnosis. Michael had been able to keep his condition from his adult children, but that was getting difficult. Beverly’s work life was getting more difficult, as Michael was agitated, unpredictable, and becoming isolated. He lacked focus, was loud, and was demanding of her. She had to do her work duties into the evening hours to meet deadlines. The caregiving duties were overwhelming, and she found herself crossing boundaries as his behavior toward her changed. While the need was rare, she did not feel comfortable helping him with toileting. She had recently decided to have an aide quietly help during the workday. Beverly felt guilty and questioned how much longer she could keep Michael’s secret. Michael’s son had been trying to reach him, and he shared his concern with Beverly. Beverly responded by telling him about Michael’s illness and the progression. Dave was at first horrified that she and his father had kept a secret like this—he wanted to fire Beverly—but he realized that she had information pertaining to his father’s well-being and he needed her input to help with the situation. Many people receive diagnoses of AD or another dementia and keep it to themselves or identify a trusted person as sup- port. This situation can be unfair to the person who knows, as well as to the people who do not. Since AD is a progressive, incurable illness that requires a care team and planning, it is important for the diagnosis to be shared with support people. This can allow for planning and defuse crises. For long-term care, the best way to approach this disease is with the creation of a care team comprised of appropriate people who can lend support over time. Not everyone has family members that they would like to be involved in their care plan. Additionally, people with busi- nesses or other assets may have legal plans in place to address their wishes. Fidelity Financial recommends addressing the following issues by making plans and sharing them with des- ignated family and loved ones.
Since AD and other dementias affect decision making, it is important that these conversations happen early in the diag- nosis. This will ensure that a supportive team will be in place with information about the disease and lifestyle options to improve symptoms. Other ethical concerns include: • Plan while the person has the clarity to express their needs and wishes. • There are situations in which family members learn of a diagnosis before the patient does. Early diagnosis may enable the patient to engage in pharmacological treatment and lifestyle changes, including exercise and nutrition, but there is the risk of additional suffering and despair that can impact well-being. It is important to respect a patient’s need to know what is happening to them. • End-of-life care should be discussed early in the disease process to ensure that the person’s wishes are met. • Caregivers must be sensitive to the mindset of the patient relative to each situation. While it is never appropriate to lie to a patient, redirection is an important skill when working with dementia patients. • Issues of autonomy are serious and can be present throughout the stages of AD. It is incumbent on caregivers (paid or unpaid) to ensure the patient’s safety, both physical and environmental. It may become necessary to move a patient from their home for safety reasons, even when the patient doesn’t agree. • Caregiver influence over choices must protect the person. • AD patient care can be taxing and exhausting for the caregiver. ‒ Ensure caregiver support—community or family ‒ Caregivers need a time out—make sure this is built into the calendar ‒ Prioritize caregiver self-care—take a day off, exercise, eat right, and engage in social activities
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