Banner by Amy Zhang

Informing Informal Caregivers: Local and Global Efforts Change How We Treat Neurodegenerative Disease 

by Owen Bearman

Nearly 60 million people suffer from Alzheimer’s globally, and the number is expected to rise, according to the Alzheimer's Disease International (ADI). Additionally, a USC research study shows that monetary costs relating to the treatment and caregiving for Alzheimer's in America totaled over $230 billion last year, with over $50 billion coming out of patients’ pockets. Without access to affordable treatment, many families are faced with handling the financial, emotional, and physical burden of caregiving without access to affordable treatment. While these roadblocks encourage a reliance on informal caregiving, varied efforts are being made to combat this taxing fallback, and improve the quality of provided care for patients. Hailing locally and globally, researchers are initiating a fundamental change in the way we care for those with neurodegenerative conditions and the elderly. 

In late 2022, the Hillman Foundation awarded $500,000 to the University of Pittsburgh Medical Center to support a dementia caregiver training program. The initiative aims to address the shortage of professional caregivers that has increased reliance on and strain experienced from informal family care. The program provides training for professional caregivers, family members, and young adults seeking to support people living with dementia. UPMC hopes to make an effort to promote collaboration and to address this “critical shortage” of qualified caregivers. 

While improving the training and education of informal caregivers is critical, it’s duly necessary to address the shortage of caregivers in general, in order to increase overall access. Regionally, addressing this access disparity is particularly crucial because of the increasingly aged population and the rural isolation of health care access. Although western Pennsylvania has many hospitals, professional caregiving remains significantly underfunded and undervalued, leading to a lack of providers, demand pressure, and disorganization within the care field. 

In more recent response to these trends, UPMC and the Allegheny Health Network (AHN) were selected to be part of the Centers for Medicare and Medicaid Services (CMS) Initiative program to further portray their commitment to battling the burden of dementia by scaling “comprehensive dementia-related care to reach more patients and alleviate provider and caregiver burden”. This program operates using the GUIDE individualized model through Medicare/Medicaid, which helps providers construct and maintain a more personalized approach to the patient’s treatment affordably via health insurance. This ideally could relieve strain from lack of access in both receiving and providing dementia-related care. 

AHN aims to complement the increase of access with a program of their own called the “Aging Brain Care” program, which hopes to “arm caregivers with the education, resources and support needed to manage the many complexities of this devastating disease”. Programs similar to those of UPMC and AHN, which approach the various interdisciplinary issues of dementia-related caregiving in different manners, could be an effective way to address these issues. Therefore, Western Pennsylvania continues to be a large player in the field of medical advancements and even prospectively could become a flagship of clinical practice, as well as research, setting the standard for the nation to follow. 

On the opposite side of the Atlantic Ocean, scientists are conducting clinical research on the efficacy of programs like the ones mentioned previously under similar circumstances as in western Pennsylvania. 

The “Curae de Mim” program, which translates to “care for me” in Portuguese, was a psychoeducational caregiver training program in Portugal by Dr. Catarina Afonso and her lab earlier this summer of 2025. They conducted quantitative and qualitative research on the efficacy of the training program, which emphasized mitigating psychosocial strain along with practical training and communication strategies. The program was led under the watch of a psychiatric nurse specialist, who was a key figure in analyzing and assisting with the psychoeducational curriculum as they led “recovery-oriented group sessions[, which] enabled the caregivers not only to acquire coping tools but also to develop greater awareness of their emotional responses and relational patterns” 

Throughout, the program emphasized consideration of the emotional needs of the caregivers via collaboration, which they later highlight as a key factor in the increase of not just the quality of life but the quality of care provided by the informal caregivers. In fact, they had direct qualitative data supporting the claim that the program results showed “increased patience and relational sensitivity: The caregivers reported being more tolerant and better equipped to manage caregiving dynamics compassionately” . 

Additionally, the curriculum involved affording caregivers the opportunity for self-reflection to address psychological needs, when they “articulated their experiences, reconstructed meaning, and gained insight into their caregiving identity,” which evidently showed “improved emotional management, and increased relational patience” . 

A key aspect of the study was that it was personalized to the individual caregivers in order to account for differences in mental health profiles. In searching for solutions about what most helps caregivers provide care, the providers received individual attention from a specialist, which allowed it to offer a “replicable and scalable model of holistic, evidence-based nursing intervention tailored to the complex psychosocial realities of dementia caregiving” . 

The prospect of a scalable and replicable intervention system like this makes it easily implementable and applicable to other places, or at least researchable in alternative environments. While the results of this study were incredibly promising, the researcher notes limitations generally consisting of experiment scale. The sample size and diversity were not large, and while the results were positive on the short timeframe they examined, less can be said about long-term outcomes. The researcher uses this to encourage more research into the efficacy of programs like these, as broader experiments under different conditions must be conducted to further support the positive results from this study. 

Furthermore, studies akin to this should be conducted in other locations examining slightly different variables to continue producing results. Many places around the world are faced with a similar problem that Pennsylvania is, which is that as we improve our medicine, we will naturally see higher rates of neurodegenerative conditions and diseases. As Portugal has an extensive medical system that allows its median life expectancy to increase, they face a growing need for geriatric care professionals in the same way our region does. Additionally, although Portugal is small, it also has regions with sparser rural sprawl similar to western Pennsylvania, so considerations of access inequities are equally important. This results in a reliance on informal caregiving in some areas, which they are trying to address with programs like these. 

Overall, the end goal is to find what best helps everyone involved in this stressful, often uncontrollable life event feel more at peace. There exists some undeniable strain experienced by the informal caregivers of those with dementia-related conditions, but if we work to address that through examination of the proposed solutions’ efficacy, it can increase the aptness of the provided care and, in turn, the quality of life for everyone involved. This research tells us that there are methods of mitigating the strain and increasing the efficacy of the work, which in turn lowers the pressure on professional caregivers, reducing the cost burden of dementia-related care. This greatly aids the geriatric care sector of our medical system, as it frees up resources and time which can be used for physician relationship building, preventative care plans, and other important considerations of aging. Although the results from examinations of and programs like these are very promising, more research conducted at a larger scale is still needed to verify the long-term effectiveness of training programs, in order for them to be applied to broader medical systems. I hope in the future that western Pennsylvania and possibly the University of Pittsburgh can play a role in further verifying the efficacy and implementation of scalable personalized interventional training programs.