____ Alzheimer’s Disease and Other Dementias: Symptoms, Stages, and Communication Strategies Expanded
CASE STUDY #2: ETHICAL ISSUES 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.
problem, but then she broke down in tears, stating that she didn’t know what was happening. She then admitted that she didn’t know where her car was. Angela’s distress concerned her children, as she had always been active and independent, and she took great pride in her appearance. She’d never trusted doctors, but she had a PCP assigned by her Medicare Advantage plan. Angela’s children knew she needed help to get organized, see a doctor, and make a plan. Kayla decided to stay for two weeks to assist, but she knew her mother might not be able to continue living alone. While organizing Angela’s papers, her children found that she had long-term care insurance. With the support of her daughter, Angela saw a doctor, started various therapies, began taking medication, and was approved for a caregiver through the long-term care insurance. Her children found her car in another parking lot in the community. Since many people don’t live near their children, Angela’s situation is common. As caregivers, the following should be addressed. • Establish a relationship with the primary care physician, who will make recommendations for specialists. • Identify appropriate specialists and make appointments. • Arrange and manage scheduling for appointments. • Gain insight into Angela’s financial situation and plan accordingly. • Ensure that long-term care planning documents are complete, including: ‒ Will ‒ Durable power of attorney ‒ Trust documents ‒ Healthcare surrogate ‒ Do Not Resuscitate ‒ Insurance policies ‒ Financial documents • Professional caregivers in this situation should establish a trusting relationship with Angela to ensure that she feels safe and comfortable. ‒ Establish a communication flow with her children. ‒ Create a structure around activities for Angela. ‒ Prepare a large visible calendar detailing activities and schedule. ‒ Engage in physical activity and mental stimulation. ‒ Engage Angela in menu planning and meal preparation. ‒ Continue to establish trust and a sense of safety.
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