Disclosing the diagnosis to the person with dementia is crucial. However, according to several national surveys and studies, fewer than half of individuals diagnosed with dementia and their family members have a diagnosis disclosed to them (Alzheimer’s Association, 2020; Bradford et al., 2011; U.S. Office of Disease Prevention and Health Promotion, 2016). 

If the individual does not have capacity to understand the information and/or share it, then the health care provider should seek the person’s permission to involve a family member or trusted friend in the disclosure process as well. During the process, it is important to ask questions about what the individual knows and understands.

A variety of online and print resources can assist the primary care team in delivering a diagnosis of dementia including: 

Delivering the Diagnosis is an 8-minute video featuring a person-centered approach to disclosure.

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Disclosure of Diagnosis is a page on the Alzheimer’s Association website that provides resources, including a 10-minute video demonstrating best practices for disclosing a diagnosis of Alzheimer’s disease.

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Newly Diagnosed Patient—Setting a Plan is a Cognition in Primary Care resource that reviews how to disclose a diagnosis along with other steps for moving forward.  

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Disclosing a Diagnosis of Dementia: Recommendations for a Person-Centered Approach is a peer-reviewed article that explores elements of the disclosure process.

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The Alzheimer’s Disease Biomarker Disclosure Toolkit provides disclosure guides for amyloid testing for individuals who are cognitively healthy, those who have mild cognitive impairment, and those who have dementia.

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The Generation Program from the Alzheimer’s Prevention Initiative provides disclosure handouts and summary sheets for apolipoprotein E (APOE) and amyloid testing.  

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Let’s Talk: Navigating Family Conversations About Dementia Through Shared Decision Making is a podcast from the Alzheimer’s Disease Research Center about communicating about a diagnosis.

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As the care team adapts one or several of these resources for use in practice, the choice of words becomes critical to empowering patients and their family members.
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The language used by the care team should be simple, without jargon, nonjudgmental, and aim to avoid stigmatization.


Evaluate | Approaches to Implement

Diagnostic Overview | Explain the Importance of a Diagnostic Evaluation | Components of a Diagnostic Evaluation | Culturally Competent Approaches to Evaluations | Identify Conditions Underlying Dementia | Document the Diagnosis | Disclose the Diagnosis | Evaluate References