Francisco R. Velázquez and Patricia Kienholz: The far-reaching impact of Alzheimer’s disease

November is Alzheimer’s Awareness Month, a time to heighten awareness about Alzheimer’s disease and show support for the many people and families living with it.

First discovered in a 50-year-old woman, Alois Alzheimer, in 1906, Alzheimer’s disease is the progression of cognitive and functional decline caused by the death of neurons. Alzheimer’s primarily targets the brain during the initial stages of the disease, including the inability to encode and store new memories. Changes in the patient’s cognition and behavior signify that the disease has progressed into the later stages. Alzheimer’s has become a growing health concern with an estimated seven million Americans over the age of 65 having Alzheimer’s. This number is projected to reach over 13 million by 2060.

As patients’ symptoms of dementia continue to worsen, they gradually grow more limited in their independence, causing family members and close relations to become more involved in supporting their daily needs. Cognitive impairment needs to be diagnosed as early as possible in the disease process. The value of knowing, especially in the early stages of the disease, is that the patient and family can plan for the future. The patient has more opportunities to be involved in decisions about current and future living arrangements, personal care, and financial and legal matters while still having the ability and the cognition to make such decisions. Early detection also assists with providing health and life balance for both the patient and the caregiver, ultimately lending stability to what is an otherwise very challenging time.

The disclosure of an Alzheimer’s diagnosis could be a complex and stressful moment for both the person with dementia and their caregivers. For many patients the prospect of a cognitive decline, and a limited understanding of what to expect, often shaped by stereotypes of late-stage Alzheimer’s, could evoke psychological distress.

Caregivers also experience a disproportionate psychological burden which can lead to post-traumatic stress symptoms (PTSSs) from the diagnosis or the patient’s behavioral response. Despite growing awareness of caregiver burden, no studies have systematically examined the potential traumatic impact of Alzheimer’s diagnosis disclosure on caregivers. PTSSs can undermine emotional resilience, reduce perceived caregiving competence, and contribute to burnout – ultimately compromising both caregiver well-being and patient care. Early identification of PTSSs following diagnosis disclosure could enable tailored psychological interventions that address trauma-related distress more effectively than generic caregiver support.

In addition to the psychological and emotional toll of Alzheimer’s and related dementias (ADRDs), there are significant financial implications for this disease. The University of Southern California Leonard D. Schaeffer Institute for Public Policy & Government Service recently released estimated cost data based on their United States Cost of Dementia Model for dementia in the U.S. The estimated cost is approximately $781 billion dollars. This includes $302 billion quality of life loss for the patient, $233 billion defined as informal care, $233 billion for medical and long-term care, $88 billion forgone earnings of care partners, and $6 billion for quality-of-life loss for care partners. ADRDs are some of the costliest diseases in the U.S., substantially higher than for cancer ($21.1 billion), stroke ($56.5 billion), heart disease ($239.9 billion), or even diabetes ($412.9 billion).

In the U.S., parents of dependent minors are older than in the past, and the population is aging. We now have what we call sandwich-generation caregivers. These are middle-aged people who simultaneously care for dependent minor children and aging parents. A recent report published in the Journal of Alzheimer’s Association (May 2025) found that 30% of Alzheimer’s and dementia caregivers had children under the age of 18 living with them and that 8% to 13% of households in the U.S. had sandwich-generation caregivers. These caregivers may experience additional challenges such as limited time, energy, and financial resources, when balancing the care of both aging parents and dependent children, potentially leading to increased anxiety and depression and a decreased quality of life.

Despite the challenges, caregiving can be very rewarding. There are benefits from caring for a loved one with Alzheimer’s or ADRDs for everyone involved. These include increased longevity with better symptom management, emotional security and independence, improved quality of life, and strengthened relationships.

There is no question that Alzheimer’s and ADRDs present unique challenges to the patient, their families and society as a whole. Significant improvements in diagnostic tools, therapeutic modalities and a better understanding of the significant effects of the disease have come a long way. Continued research and enhanced awareness and education are needed to increase our understanding of the emotional and psychological support needed for all involved. While we have a long way to go, we have made significant advances in care and treatment and are rapidly moving towards a system that better serves those with AD, ADRDs and their caregivers.

Deciding to be a caregiver is a decision that should be informed by available resources, clear communication, and serious consideration. Resources are available by calling the Alzheimer’s Association’s 24/7 Helpline at (800) 272-3900.

Francisco R. Velázquez, M.D., S.M., FCAP, is the health officer for the Spokane Regional Health District. Patricia Kienholz is a member of the Alzheimer’s Association Washington State Chapter Board of Directors and the Spokane Regional Health District Board.