Innovative Methods to Preserve Autonomy in Patients With Cognitive Decline
Cognitive decline resulting from age-related neurocognitive disorders such as dementia can lead to the loss of individual rights. Providers must advocate on behalf of older adults with dementia to preserve their autonomy.
Autonomy over oneself is a core value in Western society. We should be able to decide how we run our own lives without outside interference. Our laws allow each of us to live at great risk and make unsafe decisions so long as we maintain the capacity to understand those choices. The concept of autonomy as a basic right, however, is challenged in the case of neurocognitive disorders such as dementia.
Early dementia symptoms can result in decreased ability to perform instrumental activities of daily living, such as cooking, banking, and driving. As dementia progresses, ability to perform basic activities of daily living, such as dressing, eating, and grooming, may also decline. This functional decline is followed by a gradual removal of independence—the loss of a driver's license, moving out of the family home, and surrendering power of attorney over financial matters. The person with dementia must now ask family members for rides, abide by the rules of a landlord or nursing home, and obtain permission to access his or her own money. Even before a formal declaration of incapacity, a large amount of autonomy has often already been surrendered.
A determination of capacity is meant to reflect an understanding of decisions without judgment as to what those decisions may be. However, a person with lifestyle choices that may be viewed as unhealthy or unsafe, such as poor hygiene, substance use, gambling, or hoarding, may find these longstanding behaviors influencing a current determination of capacity. For individuals with moderate levels of dementia, it can be difficult to apply concepts of harm reduction and choosing to live at risk, particularly in a system that is often guided by medical paternalism. Health care providers may value protecting an incapacitated individual from harm over the individual's right to engage in a chosen lifestyle. One theory states that individuals with dementia retain the right for decisions to be made in their best interest, but lose the right to make decisions contrary to those interests.1
Incapacitated adults may be removed from perceived harm regardless of their expressed wishes. Health care providers can advocate for the autonomy of their patients with dementia by providing assistance in navigating through the complicated legal and ethical situations unique to each case.
Promoting Advance Directives
Throughout advance care planning conversations, health providers should present information addressing ways in which additional factors, such as financial resources or health prognosis, could influence the reality and attainability of particular decisions. Although there remain legal and ethical issues to address for an adult with dementia living at risk, an advance directive allows him or her to be included in conversations about personal well-being, where he or she might otherwise have been absent. The advance directive provides some guidance to care providers and legal decision makers, which can be used to preserve a patient's autonomy and allow self-determination. Rather than health providers advocating for what they believe a person with dementia would want, the advance directive allows the person to advocate for him- or herself.
Addressing Communication Barriers
Guidelines are lacking around dementia-specific audiology services and hearing aid testing. One study found that while nearly all audiologist respondents had treated patients with dementia, most did not feel supported in doing so.3 There is a progression of systematic invisibility in older adults with both cognitive and hearing impairment that may result in their being excluded from conversations about their own health.
Health providers should consistently advocate for autonomy of those with dementia, regardless of their level of capacity. One way this can be done is by actively including these patients in conversations focusing on their place of residence and health care decisions. If the concepts being discussed are outside their level of comprehension, the language should be presented in a way that is less complex. Even with advanced dementia, encouraging involvement in simple decision making, such as what to wear and eat, can preserve some autonomy.
Including a person with dementia in the decision-making process involves assessing the ability to adequately process sensory information. In community and hospital settings, families and staff can be encouraged to schedule residents for regular hearing and vision tests. In nursing homes, frontline staff should be trained on applying hearing aids and changing hearing aid batteries in order to adequately support those residents.
Throughout the capacity assessment process, consideration should be given to issues that may influence outcomes, such as language and cultural barriers. Immigrant populations experience delays in dementia diagnosis and treatment that can be attributed to language barriers, unequal treatment on the basis of ethnicity, stigma, and concerns around deportation based on health status.4 Older adults who identify as minorities can experience diagnostic delays and demonstrate less accurate knowledge about dementia, while perceiving increased stigma and more barriers within the health system.5
Health care providers should utilize tools such as the Rowland Universal Dementia Assessment Scale for multicultural screening, which demonstrates high specificity and is less influenced by culture and language than the standard exam when screening for cognitive impairment among multicultural populations.6 Minimizing the influence of language and cultural barriers in the outcomes of cognitive and capacity assessments can help to preserve patients' autonomy.
Strategies to Preserve Autonomy in Advanced Dementia
Affirmative response method (ARM) is another strategy care partners can utilize with individuals with advanced dementia.8 ARM focuses largely on nonverbal communication and matching the reality of the person with dementia. In this method, care providers try to learn the history of the individual with dementia and the reasons behind current behaviors. Rather than forcing these individuals to adhere to a certain schedule and meet task demands, the care partner pursues an understanding of the purpose behind a behavior and then uses creative strategies to meet care needs within the current perception of reality. In these ways habilitation therapy and ARM preserve independence in individuals with advanced dementia when possible, and deter their sense of truth from being challenged or denied in the remainder of situations.
Person-Centered Patient Care
For a person with dementia who wants to live in a way that may seem unsafe or unhealthy, extra attention should be given to understanding the aspects of his or her life and who that person was prior to the cognitive impairment. Creative solutions may be developed to minimize the harm without eliminating a person's rights. If an individual with mild dementia enjoys going for walks, he or she could continue to do so if he or she agrees to bring a cell phone, wear a GPS monitoring device, or go with a companion if it's unsafe to go alone. An individual with moderate dementia, who wants to continue smoking cigarettes but is unsafe in doing so, may be able to use electronic cigarettes instead. Health care providers should be resourceful and able to accommodate situations to maintain autonomy while not putting at risk an individual with dementia or others.
A culturally competent and informed health care provider should acknowledge the ways lifestyle, culture, and language can influence decisions being made by and for an older adult with dementia. In any assessment or health conversation, providers should acknowledge and bring to the forefront potential barriers to communication and offer methods of resolution. In accepting the multifaceted nature of issues around autonomy in older adults with dementia, a health care provider will need to rely on introspection to continuously set aside biases and focus on each person in his or her own environment. Autonomy does not need to be dependent on a condition of capacity if we strive to preserve this basic individual right.
— Brittany Faux, MSc, DCA, RSW, a healthy aging social worker at the Edmonton Southside Primary Care Network, has worked with medically complicated older adults since 2010. She serves as a designated capacity assessor in the province of Alberta, Canada. She is cochair of the Northern Alberta Gerontological Social Work Interest Group. In 2009, she completed an MSc in psychology from Memorial University of Newfoundland, with a research focus on age-related memory loss.
2. Cohen-Mansfield J, Taylor JW. Hearing aid use in nursing homes. Part 1: prevalence rates of hearing impairment and hearing aid use. J Am Med Dir Assoc. 2004;5(5):283-288.
3. Wright N, Stickley T, Mulla I, Bradshaw E, Buckley L, Archbold S. Hearing loss and dementia: an exploratory study of the views of audiologists. Qual Ageing Older Adults. 2014;15(4):220-231.
4. Bradford A, Kunik ME, Schulz P, Williams SP, Singh H. Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors. Alzheimer Dis Assoc Disord. 2009;23(4):306-314.
5. Sayegh P, Knight BG. Cross-cultural differences in dementia: the Sociocultural Health Belief Model. Int Psychogeriatr. 2013;25(4):517-530.
6. Nielsen TR, Andersen BB, Gottrup H, Lützhøft JH, Høgh P, Waldemar G. Validation of the Rowland Universal Dementia Assessment Scale for multicultural screening in Danish memory clinics. Dement Geriatr Cogn Disord. 2013;36(5-6):354-362.
7. Raia P. Habilitation therapy in dementia care. Age Action. 2011;26(4):1-5.
8. Wayman L. A Loving Approach to Dementia Care: Making Meaningful Connections with the Person Who Has Alzheimer's Disease or Other Dementia or Memory Loss. Baltimore, MD: The Johns Hopkins University Press; 2011.
9. Prince M, Albanese E, Guerchet M, Prina M; Alzheimer's Disease International. World Alzheimer Report 2014: dementia and risk reduction: an analysis of protective and modifiable risk factors. https://www.alz.co.uk/research/WorldAlzheimerReport2014.pdf. Published September 2014.