Shared Decision Making in advanced dementia care – from a patient representative’s perspective

Every year, about 10 million people worldwide develop dementia – one person in every three seconds.1 Dementia is a progressive brain-disease for which no curative treatment is available. Patients with dementia endure cognitive decline and will eventually not be able to take care of themselves anymore. In the early stages of dementia, patients may still be able to participate in shared decision-making (SDM),2 but as the disease progresses, this may become increasingly challenging. To ensure that we provide patients with the best personalized healthcare also in these final phases of life, we need to know what is most important to them. A patient representative like a close family member or a caregiver can in such cases be asked to participate in the SDM process to design a care plan that fits the patient as best as possible.

As part of my medical training, I participated in a minor ‘Patient Centred Care’3 of the Leiden University Medical Center, (the Netherlands), focussing on self-management and SDM. For this 10-week course, I delved into the topic of SDM with patients with dementia. Here, I report on the interviews I had with two patient representatives, Richard* (63 years old, works as a nurse in a nursing home for people with dementia) and Helena* (48 years old). I wanted to explore the role of the doctor, the patient, the patient’s caregivers, and Advanced Care Plans (ACP’s) in SDM about decisions at the end of life for patients with dementia who are unable to participate in such conversations. An ACP is a document made by the patient and his family, possibly also together with his clinicians, in the early stages of dementia. It contains directions for clinicians and caregivers about a patient’s preferences regarding future healthcare when the person is no longer able to express his or her own preferences anymore. Of note, the clinical value of ACP’s is still questionable for practical and ethical reasons, such as how long it is valid and how to interpret a patient’s preferences when described situations lack details.

In Richard’s views, doctors should always take the patient’s values and preferences into account when deciding about care, even though this is challenging in advanced dementia. However, even in developed stages of dementia, patients can often express preferences in some way. Richard also stated that the family and caregivers have an important role as well: their involvement is crucial in ensuring that the opinion and preferences of the patient drive making decisions about care. They know the patient better than the doctor, and therefore they should advocate for what they think would be in the patient’s best interest. Although we must always aim to care for the patient in ways compatible to the patient’s ACP, Richard believes doctors are entitled to overrule the ACP if they believe it is better for the patient.

Helena, on the contrary, would prefer the clinician to take the lead in making decisions about care for patients with advanced dementia, not necessarily engaging family members and caregivers in a SDM process. Although they could act on behalf of the patient, the clinician should always follow the ACP. In other words, the ACP is superior to everyone’s opinion, even to the doctor’s opinion. The ACP has to be carried out at all times, since it is the most direct source of the patient’s opinion, according to Helena.

The patient representatives I talked to agreed that SDM in the setting of advanced dementia is complex and requires more effort from the doctor. More than in most other care settings, clear communication with the patient’s family members and caregivers, and considering with them what would be in the patient’s best interest, requires effort. As the relation with the patient may become increasingly difficult to maintain, developing a relation with the family members and caregivers becomes ever more important for clinicians in caring for the patient.

During the half minor, I realized that patient representatives may differ in their views on the value and implementation of SDM in advanced dementia. Just as for frail older patients without dementia,4 we need to find ways to ensure that all patients receive care that fits them as best as possible, even when they are unable to voice their preferences and participate in a SDM process. As patients with dementia might forget who they truly are, we must not forget them.

* To protect their privacy, I altered the names.

Submitted by: Hannah Leegwater, medical student at Leiden University Medical Center, the Netherlands.

I would like to acknowledge Marleen Kunneman, PhD and Arwen Pieterse, PhD for reviewing and editing this blog post.


  1. Prince MJ, Wimo A, Guerchet MM, Ali GC, Wu Y-T, Prina M. World Alzheimer report 2015 – the global impact of dementia: an analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International, 2015. 84 p.
  2. Van der Flier WM, Kunneman M, Bouwman FH, Petersen RC, Smets EMA. Diagnostic dilemmas in Alzheimer’s disease: room for shared decision making. Alzheimers Dement (N Y). 2017 May 9;3(3):301-304. DOI: 10.1016/j/trci.2017.08.008. eCollection 2017 Sep.
  3. Pieterse AH, Numans ME. Folder half minor Patient centred care. [Accessed 23-01-2018]
  4. Van de Pol MH, Fluit CR, Lagro J, Slaats YH, Olde Rikkert MG, Lagro-JanssenAL. Expert and patiënt consesnus on a dynamic model for shared decision-making in frail older patients. Patient Educ Couns. 2016 Jun;99(6):1069-1077. DOI: 10.1016/j.pec.2015.12.014. Epub 2015 Dec 28.

How patient-clinician communication can promote minimally disruptive medicine via shared decision-making

by Zackary Berger, MD, PhD

How can we get more clinicians to help the patient receive minimally disruptive medicine? The answer might lie in the improvement of patient-clinician communication. For many conditions, the doctor is encouraged to look into the book – or, more likely, UpToDate – and read out the recommendations of the latest guideline.

But there are two limitations to guidelines. The first, of course, is that all guidelines, whether from the United States Preventive Services Task Force or the International Association of Quackery, are only as good as the methodology and evidence that go into them. The second is that even the best guideline is not a magic recipe for appropriate care for the individual person in question.

If you are discussing screening for prostate cancer via the PSA test, whether you are a patient or provider, you will surely realize that the guidelines of the urologists and internists are now in rare agreement: universal screening is not recommended. What is now recommended is shared decision making, a series of tasks that patients and clinicians do together to communicate about the options and to deliberate to identify the one that fits best with the patient preference and context.

Whether it’s prostate cancer, diabetes, or depression, how can we bridge the gap from guidelines to individually sensitive care? I think there are two steps. The first, as I outline in my book, is to build a relationship between PCP and patient that can handle the intellectual and emotional stresses of decision making with unclear information. This requires mindfulness; emotional readiness; and specificity and clarity of options.

The second step is to contextualize clinical recommendations in a way that only good communication makes possible. Such contextualization is now being addressed by some fascinating new research. We have already known, through the work of communication researchers (chief among them Debra Roter), how to characterize a true dialogue between patient and clinician.

Unfortunately, the evidence is mixed as to the extent to which such dialogue leads to improved outcomes. In their recent work, Saul Weiner and colleagues at the University of Illinois at Chicago, and at Duke University, try to determine how often physicians take the next step after good communication: using an appreciation for the patient’s individual concerns and customizing their recommendation on that basis. It’s not enough to empathize, in other words, about someone’s job loss, poverty, broken family, or inability to navigate our health system: the doctor’s care must respond to those individualities. They find that physicians who manage that customization offer care which is more appropriate to an individual’s given situation (here is a video that demonstrates “red flags” about contextual issues designed to prompt clinician response, which rarely took place).

We know that maximally invasive care is often a shortcut taken by physicians (and patients) overwhelmed by the complexities of possible options, and daunted by the challenge of modifying medicine to a person’s unique needs. Contextualizing care through good communication can give us permission to be minimally invasive when appropriate, hopefully for the benefit of person and system alike.

Zackary Berger, MD, PhD, is an internist and researcher in doctor-patient communication at Johns Hopkins General Internal Medicine in Baltimore. He is particularly interested in the role of the primary care provider in cancer control. His book, Talking To Your Doctor, is out on July 16th, 2013.