Grant: Planning and Dissemination Grant - Institute Community Support

People living with dementia often experience changes in mood and behavior. One of the most misunderstood and overlooked symptoms is apathy-a lack of initiative, interest, and emotional expression. Apathy can appear as if someone is "giving up" or "not trying," but it's a medical symptom caused by changes in the brain. It is distinct from depression or memory loss and may respond to specific treatments. Through research and clinical experience, we've found that care partners (those who provide ongoing support) often notice the signs of apathy but don't realize there's a clinical term for what they're seeing. As a result, apathy is rarely reported or treated, even though it significantly increases care partner stress and reduces the quality of life for the person with dementia. It is frequently mistaken as cognitive impairment and/or depressed mood which is problematic because treatments for depression do not improve apathy. This project brings together researchers, care partners, and knowledge mobilization experts to co-create free, online and printed educational tools that help care partners recognize and respond to apathy. These tools will be designed in collaboration with people with lived experience of dementia to ensure the content is relevant, practical, and accessible. Through this co-design process, we aim to empower care partners to recognize apathy as a distinct syndrome that co-occurs with cognitive impairment, understand how it differs from other conditions, and feel confident in discussing neuropsychiatric symptoms with healthcare providers. Ultimately, we hope that better understanding of apathy will lead to more informed care, reduced care partner challenges, and improved quality of life for people living with dementia. By working directly with those who have lived experience, this project ensures that real-world needs shape both the content and how it is shared-making vital knowledge easier to access and act upon.