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 support. 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 businesses 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 designated family and loved ones. • Driving Since AD and other dementias affect decision making, it is important that these conversations happen early in the diagnosis. This will ensure that a supportive team will be in place with information about the disease and lifestyle options to improve symptoms. Case study #3: Marriage issues Marion and Lou have been married for more than 66 years and recently their children arranged for them to move to a memory unit. They lived in low-income housing for more than 15 years, and Marion’s forgetfulness was problematic and progressive. Ultimately, she forgot she left a boiling tea pot boiling on the stove, which caused a fire that resulted in smoke damage to multiple apartments. The building manager had shared concerns with their children that were ignored. The manager had also received tenant complaints about arguments that the couple would have in the early evenings. When the children heard that, they responded that the couple had been screaming at each other for more than 60 years—why stop them now? After the fire, the couple moved to a memory unit to receive additional care. The new apartment was small but comfortable, and despite their initial confusion they adjusted well. Their children brought some remaining personal items from their former apartment to provide a sense of familiarity. Marion and Lou participated in the structured activities and interacted with residents. At the end of their first week in the new community, Marion and Lou got into an argument in the hallway. They were loud and called each other nasty names. Their behavior was disruptive, and the caregivers redirected, which worked initially, but the arguments continued to occur daily. The staff decided to separate the couple, which initially caused Marion’s anxiety to increase. She began to pace and tear tissues throughout the hallway. The community had a safe space to accommodate her, but it would require the couple to be in separate buildings. The staff decided that total • Finances • Housing • Care • End of life
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 ○ Caregivers need to address their well-being ○ Establish a communication flow with the family and loved ones to avoid overwhelming the patient with multiple people and explanations • Recognize that diseases like AD cannot be addressed alone short-term separation could be helpful to minimize their arguments. Marion moved to the memory unit with increased care, and she thrived. She loved the outdoor garden and spent her days quietly planting seeds. In the evening she would cry for Lou, but the staff was able to provide her with calming reassurance. Lou remained in their apartment, he no longer raised his voice, he participated in daily activities, and his anxiety level diminished. When Marion and Lou’s children came to visit and learned that their parents were separated, the facility asked them to contribute to the increased fees. The children responded that they wanted their parents to be together, and they did not believe that their parents’ behavior was an issue. They felt that their parents had been moved to have the fees increased. Situations with couples can arise—needs change, behavior must be modified to conform to the community, and people may need more safety measures. Issues that may need to be considered include the following. • Adult children may be disengaged, in denial, scared, or selective about information they receive. • Professional caregivers will need to learn the best ways to communicate with difficult children. • Engage the proper professionals, such as the director of nursing or the administrator, in any explanation pertaining to clinical needs, changes, or issues. • Adult children may elect to not be involved in their parents’ lives.
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Book Code: SWUS1525
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