Communication of Dementia Diagnoses: Investigating Patient, Family, and Physician Experiences and Developing Best Practices

  • End date
    Apr 30, 2023
Updated on 13 October 2021
Noheli Gamez
Primary Contact
University of Florida (online study) Contact
Online studies
Accepts healthy volunteers


This study involves a single interview of patients, caregivers, and health care professionals across Florida regarding their experiences in receiving and giving dementia diagnoses. The individual must live in Florida and have been diagnosed with dementia within the last 2 years to participate. Similarly, caregivers must live in Florida and care for someone who was diagnosed in the last 2 years. Patient and caregiver participants are interviewed separately and do not enroll as a pair (meaning we can interview just the patient or just the caregiver). Interviews will be conducted by phone in English or Spanish and will last up to one hour. Compensation is provided after completion of the interview.


Study Schedule:
The study consists of a single telephone call. The interview will last no longer than 1 hour.
Study activities may include:
Answering questions over the phone (telephone session will be recorded)

Many individuals with cognitive impairment and their families place high value on having a specific dementia diagnosis, but clinicians may be reluctant to give such diagnoses. In published research, clinicians’ approaches to communicating dementia diagnoses were based more on their own beliefs and confidence than patient & care partner desires. Current best practices suggestions for communicating dementia diagnoses are based on expert consensus with minimal patient or care partner input. We aim to investigate the experiences of individuals with cognitive impairment and care partners when receiving dementia diagnoses and elicit their suggestions for optimal communication. We also aim to investigate the experiences of clinicians communicating dementia diagnoses, barriers and facilitators, and clinician suggestions for optimal communication. Finally, we aim to develop best practice statements regarding communication of dementia diagnoses with multi-stakeholder input. Investigation of patient, care partner, and clinician experiences will occur through telephone interviews using semi-structured guides. Participants will be diverse stakeholders including patients and care partners of both genders, with AD and ADRDs, from different racial-ethnic backgrounds and Florida locations. Clinician participants will represent different genders, years in practice, and specialties. Qualitative thematic analyses will identify common themes and differing experiences. Subsequently, diverse stakeholders including individuals with dementia, care partners, dementia advocates, clinicians, and other healthcare professionals will meet in-person to review results and existing literature. The recommendation development approach will follow the methodology used by the American Academy of Neurology for guideline development. Using multiple rounds of modified Delphi voting and revisions, the panel will develop best practice statements for the communication of a dementia diagnosis representing a range of needs and views. The ultimate goal is to optimize communication of dementia diagnoses in Florida.

Condition Caregiver, *Healthy Volunteers, Dementia
Clinical Study IdentifierTX251280
Last Modified on13 October 2021


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What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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