The position statement considers the diagnosis of dementia, problems in decision making, symptoms and behavioral management, and the relationship between dementia care and society.
In the wake of the FDA’s controversial decision to approve aducanumab (Aduhelm; Biogen), the first disease-modifying therapy to treat patients with Alzheimer disease (AD) since 2003, the American Academy of Neurology (AAN) has revised its 1996 position statement, summarizing ethical considerations that arise in caring for patients with dementia and how they may influence patient management.
Lead author Winston Chiong, MD, PhD, associate professor, University of California–San Francisco Memory and Aging Center, and colleagues addressed a number of ethical issues within the space, including complexities in communicating the diagnosis, decision-making in dementia, symptom and behavioral management, and contextual issues.
Complexities in Communicating the Diagnosis
The statement noted that terms such as “dementia” and “Alzheimer disease” can be difficult to grasp for patients and family members. Due to its lay connotations of insanity and mental deficiency, clinicians are advised to approach the term “dementia” with sensitivity, as well as actively acknowledge widespread miscommunications.
Dementia presents symptoms that can differ significantly across individual patients and is not exclusively a disease of advanced age. Chiong et al noted, “expectations based on observing other patients or on cognitive test scores may not predict the most consequential features of the patient’s clinical course.”
Before communicating a diagnosis, it is important to ascertain how much information patients wish to receive and how they prefer to receive their diagnosis. For example, the statement highlights that some patients would rather defer the diagnosis to a parent or family member in an event that it is too devastating. The manner and setting of disclosure is important to consider minimizing the risk of emotional harm to the patient.
A rapidly evolving menu of tests are now available that in symptomatic individuals may be used to confirm the existence and cause of dementia, or in asymptomatic/presymptomatic persons may suggest future risk for cognitive decline. Genetic testing should be offered to symptomatic patients who have phenotypes associated with autosomal dominant inheritance and supportive family histories. Those who do undergoing genetic testing should receive genetic counseling before and after receiving results.
Decision-Making in Dementia
Due to the financial burden from progressive cognitive decline, timely anticipatory planning during the early stages of the disease is crucial to preserve autonomy over future decisions and reduce future strains on caregivers. The AAN proposed that clinicians should remain conversant with principles for assessing decisional capacity and how much a patient can retain. Determining capacity is always relative to a particular case and is not determined simply by diagnosis or scores on cognitive testing.
While patients still have capacity, clinicians are also advised by the AAN statement to encourage advance care planning. This facilitates completion of appropriate documents conferring legal authority to decision-making surrogates. Patients should choose a surrogate that they believe is intellectually and emotionally capable of making decisions aligned with the patient’s own values and communicating with clinicians on their behalf. Patients should also be made aware that failure to plan often results in aggressive care by default, which may not conform to their wishes, and may also require families later undergo burdensome legal proceedings for appropriate authority.
For patients without capacity, decision-makers for those patients should give first priority to known preferences expressed by the patient when he or she had capacity. If no explicit statement of the patient’s wishes exists, surrogates should apply “substituted judgment,” attempting to determine what the patient would have wanted, based on knowledge of the patient’s general values and beliefs when capacity was present, according to the AAN.
Symptom and Behavioral Management
Many ethnical conflicts encountered in mild cognitive impairment and mild dementia concern the extent of patient involvement in instrumental activities of daily living. While these activities are central to many patients’ identities, they may expose them to personal risks, and in some cases could also endanger patients’ families or the public. The authors wrote that “clinicians and family member should remain cognizant that no approach can eliminate risks and remain alert to ways of monitoring patients’ activities to mitigate risks while preserving patients’ independence and dignity where possible.”
Agitated behavior such as wandering, accusations, nighttime awakening, and violence are common in patients with dementia and can contribute to caregiver burnout, interfere with personal care, and endanger patients as well as others in the care setting. Candid reassessments of whether in-home care remains feasible should be encouraged and reiterated by clinicians.
Advanced stages of dementia are subject to underrecognition and undertreatment of pain due to communication difficulties. In these circumstances, validated pain measures based on caregiver assessment may be useful. Hospitalization, which occurs by “default” in perceived crises due to insufficient advance planning and preparation of patients’ family members, can be prevented by anticipatory discussion.
Hospice need, which is associated with reduced hospitalization, greater symptom control for pain and dyspnea, and increased family satisfaction with care, was also encouraged by the statement for patients with advanced dementia but currently has a number of insurance-related barriers which limit eligibility.
The overwhelming majority of costs for patients with dementia are attributable to in-home care, nursing home care, and lost caregiver wages for unpaid care, all of which are generally directed at patient impairments in daily living and thus are not covered by medical insurance but instead are predominantly borne by patients’ families. “Never models of providing and financing long-term care are needed to address the needs of patients and their families,” Chiong et al wrote.
The caregiver role is crucial in the clinical care for patients with dementia. Most in the AD field are acutely aware of the strain and burnout that caregivers can experience as part of their role which can lead to negative health outcomes. Additionally, many caregivers may be unaware of existing programs to provide respite care, financial support and other services, and can often benefit from targeted referrals from social work.
Patients with dementia and other cognitive impairments are at increased risk for abuse, which can take forms including physical and psychological abuse, sexual assault, financial exploitation, and neglect. These forms of abuse can come from close friends and family members. Clinicians should be alert to identify and document potential manifestations of abuse, such as supportive examination findings, direct observations of abusive actions, isolation of the patient from previously trusted family or friends, failure to pay for care needs, and malnutrition. Despite previous misconceptions about the work Adult Protective Services provides, most reported instances will result in a home visit by a worker from Adult Protective Services to investigate the matters.
For patients who are not fluent in English, the statement suggests that clinicians should strive to use professional interpreters, when possible, rather than rely on family members as translators. Additionally, clinicians should be aware that patients and families whose ethnic or cultural background differs from their own may have different perceptions of illness and priorities for care than they do, while not assuming that all members of a given group or family have identical communication and treatment preferences.
To read the full report from the AAN, click here.