MIND YOUR
BRAIN HEALTH

This Toolkit was created by a team of experts at the University of California, San Francisco (USCF) and the University of Southern California (USC). Deborah Barnes, Ph.D., M.P.H. of UCSF is directing the development and evaluation of the Toolkit. Her collaborators include Elisabeth Askin, M.D., Leah Karliner, M.D., Sunita Mutha, M.D, Francesca Nicosia, Ph.D., Alissa Bernstein Sideman, Ph.D. of UCSF and Soo Borson, M.D. of USC. The design of the Toolkit was supported by a team of professional product designers and user experience researchers, including Talya Brettler, M.D., M.P.H., Lucy King, Ph.D., and Amie Zukowski, M.F.A.

The Brain Health Toolkit is supported by the California Department of Public Health, Alzheimer’s Disease Program. © 2024, funded under contract #23-10608.

Contact the Brain Health Toolkit at brainhealthtoolkit@ucsf.edu.

The Brain Health Toolkit is part of a public health initiative to increase awareness of brain health among older people and their care partners. Its goal is to support earlier detection of Alzheimer’s disease and related dementias (ADRD). Earlier detection of ADRD is important for several reasons. It empowers patients to make decisions about their care; allows them to establish a care plan that optimizes their health and wellbeing and that of their families; helps to prevent avoidable medical complications; improves patient safety; and opens doors to potential treatments. 

The Brain Health Toolkit helps older people better understand their brain health. It reassures those experiencing cognitive changes associated with typical aging, and encourages people with early symptoms and signs of dementia to raise questions about brain health with their primary care clinicians. This enables clinicians to respond to concerns more effectively, use resources more efficiently, and identify patients with dementia earlier in the disease course. 

Primary care clinicians are the main source of clinical care for most patients, thus they and their staff are well-positioned to detect cognitive impairment and dementia early. It can be challenging to prioritize dementia detection when there are many competing demands on a clinician’s time and limited treatment options. However, when dementia detection is delayed, patients may miss the opportunity to participate in their care planning, and caregivers may not get the support they need. In some cases, dementia may be detected when there is a crisis such as a fall or medical emergency. Earlier recognition of dementia may help avoid these crises. In most cases, patients or families raise questions about brain health or cognitive changes. The patient-facing Brain Health Toolkit educates the public about when they should seek help from their primary care clinicians for brain health concerns. 

The Toolkit is designed for people ages 55 years and older who may or may not have symptoms of mild cognitive impairment (MCI) or early dementia. It is intended to be distributed broadly to this demographic in order to increase awareness of brain health, reassure people about changes related to typical aging, encourage people to talk to their doctor about signs and symptoms of dementia, and stimulate behaviors that may reduce dementia risk. Friends and family members of older people may also find the Toolkit helpful. 

The Toolkit is free and available in both English and Spanish, with content at a 5th-grade reading level to be accessible to as many people as possible. The Toolkit can also be translated into other languages using the integrated Google Translate tool, but the Toolkit developers do not guarantee it will be error-free.

*The Toolkit can be distributed broadly but was not designed for people with moderate or severe dementia. For new dementia diagnoses or help with care navigation, refer to the FAQ, How do I support a patient with a new dementia diagnosis?

The following are specific opportunities for sharing the Brain Health Toolkit with older patients and/or their care partners:

• Before or after an annual wellness exam or other primary care visits 
• Before an appointment scheduled with the chief complaint of memory problems 
• After a patient or care partner expresses concerns about memory problems during an appointment, as a way to help patients prepare for a follow-up appointment to investigate the problem

The Brain Health Toolkit was developed using a human-centered design approach, by centering the experiences, needs, and desires of real people to solve problems. The design was informed through continuous, in-depth feedback from primary care clinicians and people ages 55+ across California, and guided by experts at UCSF and USC.

The design of the Brain Health Toolkit is based on qualitative research (e.g., 1:1 interviews and prototype evaluation sessions) with primary care clinicians and older people across California. The content is informed by experts at UCSF and USC.

The Toolkit is early in its development, and research to evaluate its implementation and efficacy is ongoing. It is being studied in its physical and digital formats by Dr. Deborah Barnes of UCSF.

The Check In tool was designed to help patients distinguish between experiences of typical aging and early “warning signs” of Alzheimer’s disease and related dementias (ADRD). To select the warning signs, we reviewed existing tools and resources focused on self- or informant-report of dementia symptoms. We identified symptoms in 5 major areas relevant to early dementia: recent memory loss, communication difficulty, problems with planning and judgment, difficulty with daily tasks, and apathy. Each warning sign is illustrated with concrete day-to-day examples. The content developers at UCSF and USC guided this process. 

During conversations with future users and clinicians, we received questions about the final warning sign on the Check In, which focuses on apathy. Apathy is sometimes confused with depression by clinicians as well as family members. Despite the potential for confusion, we included this warning sign because apathy is one of the most common symptoms of early dementia. Apathy in dementia can involve lack of initiative or motivation, decreased interest and participation in daily activities, and social withdrawal. Although dementia and depression can co-occur, apathy caused by dementia is not accompanied by the significant negative emotions present in depression. People with dementia still enjoy activities, and care partners can help by setting up activities for them.

In addition to this digital Brain Health Toolkit, we are piloting the distribution of physical Brain Health Toolkits and are evaluating their impact. We have selected pilot distribution sites and cannot add new ones at this time. In the future, we hope to offer wider access so any clinic or community-based organization can stock the Toolkits for distribution. To join the list for future distribution, please contact brainhealthtoolkit@ucsf.edu.

One of the goals of the Brain Health Toolkit is to reduce the stigma and fear that are often attached to dementia. We chose a visual communication approach based on this goal. The older Californians who pre-tested the Toolkit design told us that cartoon imagery felt more inviting, positive, and engaging to them than photographs of real people. Our cast of illustrated bird characters allows for accessible, lighthearted visual communication and encourages people to keep reading.

To learn more about how to screen for, assess, and diagnose dementia, check out these resources:

• The Alzheimer’s Association provides physician guidelines and recommendations that support patient care from assessment and diagnosis to medical management and care planning. The Cognitive Assessment Toolkit is a guide to detecting cognitive impairment during the Medicare Annual Wellness Visit.
• The American Academy of Family Physicians Cognitive Care Kit includes resources to support detection from the initial identification of signs through diagnosis and disclosure. 
• BOLD Center for Early Detection of Dementia develops, implements, and sustains an evidence-informed approach to dementia detection, diagnosis, and care management for diverse communities. The BOLD Early Detection Toolkit includes resources for clinicians interested in promoting early detection of dementia. 
• Dementia Care Aware is a state-wide program in California for primary care clinicians. It provides information and tools to successfully administer cognitive health assessments and determine the appropriate next steps for patients.
• Gerontological Society of America KAER Toolkit for Brain Health supports primary care teams in implementing a comprehensive approach to initiating conversations about brain health, detecting and diagnosing dementia, and providing individuals with community-based support.

The most important thing you can do is let your patient know that you will be there for them. People living with dementia and their family members need to know they can depend on you. This is more important than how much specialized knowledge of dementia you have. 

Sometimes, you might refer a patient to a neurocognitive specialist, especially if they are younger than 55 or their symptoms are unusual. More often, your support will include: making sure you are available along the way as they grapple with the changes that are happening; communicating that it is possible to live well with dementia; pointing them to helpful resources for them and their families, such as the resources available through the Alzheimer’s Association and similar organizations. 

Here are some resources about how to talk with patients and families, and where to get more information about care and treatment: 

• The American Academy of Family Physicians Cognitive Care Kit offers resources to help physicians, families, and caregivers support people with cognitive impairment. 
• BOLD Center for Early Detection of Dementia develops, implements, and sustains an evidence-informed approach to dementia detection, diagnosis, and care management for diverse communities.
• Dementia Care Aware is a state-wide program in California for primary care clinicians. It provides information and tools to successfully administer cognitive health assessments and determine the appropriate next steps for patients.
• Family Caregiver Alliance provides services, education, and resources to family caregivers of adults.