When faced with the uncertainty and fear that often accompany an Alzheimer’s diagnosis, it becomes more important than ever to show ourselves, our loved ones, and our support networks grace and compassion. Symptoms may seem obvious when written on paper, but when they appear in our own lives or in the life of someone we love, recognizing them is not always simple.
As we observe Alzheimer’s Awareness Month this June, the Alliance believes it is important to not only discuss Alzheimer’s symptoms but to also make space in the conversation for the many emotions that come with understanding and adapting to neuropsychiatric symptoms (NPS). These symptoms, which can include agitation, anxiety, depression, apathy, sleep disturbances, wandering, and personality changes, are common manifestations of Alzheimer’s disease and related dementias.
Earlier this year, we at the Alliance, together with the National Alliance for Caregiving, explored this topic in a webinar, titled “Caring Together: Empowering Families and Health Professionals with Tools for Better Neuropsychiatric Symptom Care.” Convening caregivers, clinicians, and researchers, the discussion focused on practical strategies for recognizing symptoms, improving communication, and supporting families through the challenges of care.
Yet, beyond clinical guidance and caregiving tools, lies another reality that many families face: the emotional weight of symptom progression itself. Among the most common and complex emotions caregivers experience is guilt. The physical changes, mood shifts, or subtle behavioral differences often feel, in hindsight, like warning signs that should have been impossible to miss — and make us wonder why we did not recognize what was happening sooner.
The reality is that many of these changes overlap with everyday aging and life’s normal stresses. Memory lapses happen. Sleep patterns change. People become more withdrawn during difficult periods. It is often only after symptoms progress that these behaviors begin to align with a diagnosis. In fact, experts note that neuropsychiatric symptoms can sometimes appear before significant cognitive impairment, making them even more difficult to identify as signs of Alzheimer’s disease.
Especially as they develop, certain neuropsychiatric symptoms can especially affect relationships. Personality changes and other emotional or behavioral symptoms can alter how a loved one interacts with the world and with those closest to them. For caregivers and family members, this can create a unique kind of grief. There may be moments when a familiar personality feels less recognizable, conversations may change, shared routines may disappear, and the relationship itself begins to feel very different. It is natural to mourn during those changes for the person they once were.
While the early stages may be marked by uncertainty, stress, sadness, frustration, and even fear, there comes a moment when those emotions begin to transform into something else: resolve.
Resolve is not about pretending the challenges do not exist. Rather, it is about choosing to move forward despite them. Brent Forester, MD, MSc, Psychiatrist-in-Chief and Chairman of Psychiatry at Tufts Medical Center and geriatric psychologist specialist, underscores this mindset shift in his work: encouraging families to focus less on what has been lost and more on what remains possible. Instead of measuring every change against what once was — identifying strengths, continuing meaningful activities, and building care strategies around moments of success and connection can help forge a new pathway forward.
In practice, this means caring in a way that is smarter rather than harder, as Dr. Forester notes in his book, The Complete Family Guide to Dementia. Focusing on what works instead of what is missing, which includes asking for help, utilizing caregiver resources, and recognizing that support is not a sign of failure, but an essential part of sustainable care.
Research and lived experience alike continue to show that caregivers are not alone in these feelings. Overwhelming numbers of caregivers report feeling emotionally drained while supporting someone experiencing Alzheimer’s-related neuropsychiatric symptoms. Yet, they also consistently share that education, support networks, practical tools, and honest conversations make a big difference.
The Alzheimer’s journey often presents guilt, grief, frustration, and uncertainty, yet it also reveals remarkable resilience, compassion, and hope. Most of all, it serves as an important reminder that whether you are a patient, a caregiver, a family member, or anyone connected to the Alzheimer’s community: you are not alone.
Lauren Belsky is Development Coordinator at the Alliance for Aging Research.
