DOI: 10.1002/alz.073411 ISSN: 1552-5260

Beyond Diagnosis: Compassionate Counseling, Effective Referrals

Jaqueline G. Raetz
  • Psychiatry and Mental health
  • Cellular and Molecular Neuroscience
  • Geriatrics and Gerontology
  • Neurology (clinical)
  • Developmental Neuroscience
  • Health Policy
  • Epidemiology


Patients with Alzheimer’s disease and related dementias (ADRD) who receive an earlier diagnosis receive better care. To achieve system change to facilitate more timely and accurate diagnoses, primary care providers (PCPs) will need knowledge and confidence to compassionately counsel patients and families once a new diagnosis is made. Simply providing PCPs tools to make a diagnosis, without also giving them a clear path forward once they identify a new case, leads to resistance to practice change and poor care.

This presentation will outline an intervention built around training and tools for PCPs which meets that need. This intervention was pilot tested with 89 PCPs across the University of Washington’s Primary Care Network of clinics who found the intervention to be highly likely to change their practice (4.4 on 5‐point scale, SD 0.9). They particularly appreciated the guidance for how to provide compassionate counseling to newly diagnosed patients and their care partners.

Components of the training were 1) a set of validated serious‐illness communication principles which were adapted for use in ADRD, 2) concise information on how and when to make referrals to community resources and clinical dementia specialists, and 3) a structured checklist for giving guidance on key principles to cover in counseling a newly diagnosed patient.

This checklist was embedded in the electronic health record (EHR) and is concise enough to be easily implemented in the EHR of other healthcare systems. Highlights of the checklist include flags which indicate when a more urgent referral to a specialist is needed, a set of activating interventions which PCPs can implement to help patients with ADRD maintain brain health, and high‐quality referrals that PCPs can make to enable more supportive care. Such referrals include those with a national scope, such as Powerful Tools for Caregivers and the Alzheimer’s Association 24‐hour Help Line, and those with a more local focus as well.

This innovative, pragmatic intervention provides PCPs with effective knowledge and confidence for counseling newly diagnosed patients, with the understanding that such counseling is an essential component of quality improvement initiatives to facilitate the identification of ADRD in the primary care setting.

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