Maintaining patient autonomy in dementia care

Maintaining patient autonomy in dementia care

Over the past century, the practice of medicine has gradually shifted away from a paternalistic approach where patients place “blind faith and trust in the doctor’s ability”.1 There is now an increasing emphasis on patient autonomy in dementia patients to offer flexibility and control in deciding their treatment paths under the guidance of medical professionals. It is projected that in the next 15 years, nearly 1 million Canadians will be living with dementia.2 These patients will be faced with the challenge of increased responsibility to make rational and informed decisions about their healthcare while fighting cognitive impairment, including memory loss, impaired judgement, and loss of communication skills. How will increased autonomy impact the care of patients with dementia?


“...in the next 15 years, nearly 1 million Canadians will be living with dementia.”

To grasp the importance of patient autonomy to dementia patients, it is important to understand that patient autonomy is the “determining factor of perceived dignity” and personhood by giving patients control and self-determination.3 In working with dementia patients, the Alzheimer Society of Canada emphasizes dignity and personhood as their top two guiding principles for fostering an environment of respect, trust and authenticity where patients can live without shame and ridicule.4 Dignity and personhood balances both the sense of self-respect a person develops based on self-perception and what she believes others perceive. In the patient autonomy approach, these two parts translate to healthcare professionals trying to balance the patient’s authority in directing the course of their care with protecting the patient from the harmful effects of their decisions. In this sense, patient control over their treatment interventions and palliative care is a way to preserve their dignity and their autonomy.

This balance can be difficult to maintain in dementia patients because their condition involves both progressive neurodegeneration as well as day-to-day fluctuations in cognition. These variations, including verbal recognition, attention, reaction time, and spatial memory, have been found to be directly responsible for the patients’ level of impairment of daily activities.5 Because the cognitive tools that patients use to interpret advice, problem-solve and communicate ideas are changing, the decisions the patients make and their ability to make those decisions is also fluctuating. How should healthcare professionals address pre-dementia wishes of the patient compared to the patients’ decisions in more advanced stages of care?

Dementia is caused by permanent neurodegeneration from plaques, tangles, protein clumps, and damaged blood vessels. From a biological perspective, it can be argued that the irreparable neurological damage, common to all types of dementias, progressively separates patients from parts of their previous identities. Thus, earlier decisions made by patients about their care should supersede their current decisions. The common practice for carrying out a patient’s pre-dementia wishes is through substitute decisions made by a family member, medical profession or legal representative. There are two types of judgements that substitute decision makers can make: transmitted judgements and hypothetical judgements. Transmitted judgements happen when a family member recalls a clearly communicated wish specific to the healthcare decision in question. For instance, this would apply to a patient who clearly communicated their wish to be taken off of life support. On the other hand, hypothetical judgements would be one formed by a substitute decision-maker when the incapable person has never explicitly expressed a wish or preference about the situation at hand. In this case, the decision-maker has to use their knowledge of the patient to form an assessment according to what fits with their understanding of the patient.6 Both types of judgements would allow the pre-dementia patients to guide the direction of their care with the most intact brain structures. This follows the argument that decision made under minimal neurodegeneration best reflects the patient’s complete identity and reasoning skills.

However, some people believe that any disease, especially a chronic degenerative condition like Alzheimer’s, shapes a patient’s identity and value system. Consequently, the medical choices made by the patient over the course of their illness will also change to reflect their most current values and reasoning skills. In this sociological view, dementia is described as a journey through which a patient’s identity is challenged by the circumstances of her condition as in adopting the sick role. From a number of personal stories told on the Alzheimer’s Association Website, there is a consistent theme of role conflict between the patient’s previous professional roles, caretaking roles or parenting roles and their current illness role. This often leads to extensive strain on relationships, inability to hold jobs, and loss of driving privileges. The patient has to navigate these social losses in addition to mental deterioration and dependence brought on by their own disease. This challenging and traumatic process will affect the energy and will of the patient to fight the condition and redefine the priorities guide their care. Consequently, some would argue for using the latest informed decisions of dementia patients. Under this argument, this ensures that the patient feels secure, happy and independent at the moment to guide their care.

To uphold the equitable provision of patient autonomy for patients in various stages of dementia, there is a medical test for evaluating decision-making capacity. This test optimizes patient participation while weighing medical advice in directing care. To accommodate fluctuating cognition, frequent assessments are administered to test capacity on a spectrum, where the presence of capacity is unique to a specific time under a specific set of circumstances. While there is no ideal standard for capacity testing, a Folestein Mini-Mental Status Examination score is often used, which tests orientation, registration, attention, and calculation, recall and language.7,8 These five cognitive indicators are used to predict whether a patient can demonstrate key decisional capacity traits.


  • Ability to appreciate a decision
  • Understand that she is being asked to make a specific decision
  • Apply a set of personal values to the decision
  • Communicate the decision and reasoning for the decision
  • Stability and consistency of the decision over time

In this approach, the patient can continue to make healthcare decisions until a medical assessment proves otherwise. Then, and only then, would decisions be left for a substitute decision maker who will stay consistent with what they believe the patient would want to say, were they able to join the discussion. During this process, the patient will be encouraged to participate to maintain involvement. Capacity testing ensures that the patient can participate to the best of their ability throughout the progression of their condition, given that understanding the repercussion of their decisions.

This prevalence of this issue is set to expand rapidly as the prevalence of dementia rises with the aging Canadian population, emphasis on patient autonomy, and more comprehensive biopsychosocial views of illness. Balancing the degree patient autonomy and welfare in dementia patients will challenge our traditional notion of patient involvement and present an opportunity for the medical community to develop more inclusive practices. On a case-by-case basis, it may be more beneficial to prioritize decisions made by the patient prior to their memory and judgement being impaired by neurodegeneration. However, depending on the etiology of the condition, the patient may feel more fulfilled if they were given the opportunity to participate to their maximum capacity throughout the dementia journey to ensure that her medical decisions reflect their most recent priorities and viewpoints based on the newest technologies. In either case, the goal of giving patients decision-making authority is to provide more personalized care that respects the dignity and personhood of patients.


Works Cited:

1. The End of Paternalism. Medical Protection. http://www.medicalprotection.org/uk/advice-booklets/mps-guide-to-ethics---a-map-for-the-moral-maze/chapter-1---ethics-values-and-the-law/the-end-of-paternalism.

2. Chambers LW, Bancej C, McDowell I. Prevalence and Monetary Costs of Dementia in Canada. Toronto, Ontario: The Alzheimer Society of Canada ; 2016:23. http://www.alzheimer.ca/en/about-dementia/what-is-dementia/dementia-numbers.

3. Rodríguez-Prat A, Monforte-Royo C, Porta-Sales J, Escribano X, Balaguer A. Patient Perspectives of Dignity, Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography. Moretti C, ed. PLoS ONE. 2016;11(3):e0151435. doi:10.1371/journal.pone.0151435.

4. Vision, Mission and Values. Alzheimer Society Canada. http://www.alzheimer.ca/en/about-us/vision-and-mission. Published April 26, 2016.

5. Ballard C, Walker M, O'Brien J, Rowan E, McKeith I. The characterisation and impact of "fluctuating" cognition in dementia with Lewy bodies and Alzheimer's Disease. International Journal of Geriatric Psychiatry. 2001;16(5):494-498. doi:10.1002/gps.368.

6. Royal College of Physicians and Surgeons of Canada. Royal College of Physicians and Surgeons of Canada. http://www.royalcollege.ca/rcsite/bioethics/cases/section-1/substitute-decision-making-e.

7. Mitty EL. Decision-Making and Dementia. Alzheimer's Association. https://www.alz.org/stl/documents/decision_making_capacity.pdf. Published 2012.

8. Kurlowicz L. The Mini Mental State Examination. Alzheimer's Association. https://www.mountsinai.on.ca/care/psych/on-call-resources/on-call.../mmse.pdf. Published January 1999.


Cite This Article:

Zhang B., Zheng K., Chan G., Ho J. Maintaining patient autonomy in dementia care. Illustrated by P. Taarea. Rare Disease Review. July 2017. DOI:10.13140/RG.2.2.36214.80967.

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