Shaping Policy: Systemic Gaps In Dementia Care

Authored by: Asha Gandreti

Art by: Sophia Liu

Dementia serves as one of the most pressing public health challenges of the twenty-first century [1]. Currently, over 7 million individuals are living with Alzheimer’s disease and related dementias in the United States, a figure projected to rise to nearly 13 million by 2050 as the population ages [2]. Unfortunately, despite advances in research and awareness, dementia care systems remain disconnected, often lacking coordination across medical, social, and community services [3]. Systemic gaps in dementia care include fragmented infrastructure, insufficient assistance with activities of daily living, caregiver burden, limited integration of social prescribing, and, more broadly, disparities in access to care. Each of these shortcomings calls for policy reform focused on strengthening current care models with an end goal of enhancing both coordination and accessibility. 

Disconnected infrastructure in patient care often results in inefficient communication and sharing of patient data. Dementia requires coordinated management across multiple specialties, including neurology, primary care, occupational therapy, speech and language therapy, and cognitive therapy, while simultaneously requiring access to long-term care services and social support systems [4]. However, these abundant and differentiated sectors often operate independently rather than collaboratively. 

As a result of this poor communication, patients often receive duplicated services and diagnostic tests, along with delayed interventions. Studies indicate that up to 35% of primary care physicians report either “sometimes” or “seldom or never” receiving information from a specialist following a consultation with a shared patient [5]. Without strengthening the coordination between medical providers and support services for patients with dementia, treatment quality and long-term patient care are at significant risk. 

With the progression of dementia, individuals experience a decline in memory, problem-solving capabilities, and language, significantly hindering their ability to perform everyday tasks and social functions [6]. A lack of adequate assistance with daily activities such as bathing, managing/administering medications, dressing, and preparing meals serves as another major systemic gap in dementia care. It is imperative to understand the mechanisms behind these often neglected necessities (particularly wander-risk management and nutrition/hydration) and how early intervention can address such issues before they lead to hospitalizations and other costly healthcare outcomes [7]. 

Additionally, studies indicate that approximately half of dementia care is provided informally by means of unpaid caregiving. This finding can have detrimental effects, leading to increased risk for caregiver burden, financial strain, and anxiety and depression [8]. According to the Alzheimer’s Association, nearly 12 million Americans provide unpaid care for a family member or friend with dementia, totaling over $400 billion in unpaid care [2], leaving caregivers experiencing negative psychological effects [9]. As a result, stronger policy support is necessary to counteract this unsustainable nature of informal care.

It is also imperative to understand that dementia care systems often fail to integrate social prescribing and other non-medical forms of intervention. Social prescribing addresses patients’ social needs by implementing community-based interventions and encouraging social connection [10]. Examples include supporting patients with exercise and fitness routines, hobbies such as art classes, advice on financial stressors, and friend groups to maintain social networks. The absence of these programs in patients’ care puts their cognitive health and emotional well-being at risk.

The aforementioned gaps are further exacerbated by geographic and socioeconomic disparities that determine whether patients can access specialized care or supportive services. Rural populations experience reduced access to specialty care providers, pre-hospital emergency services, and local hospital services due to frequent closures [11] in comparison to urban residents. Simultaneously, minority populations also experience disparities in diagnosis, access to treatment, and caregiving resources due to linguistic barriers and a lack of culturally competent healthcare providers [12]. Structural barriers continue to exist and widely shape dementia outcomes and patient well-being as a whole. 

Addressing these systemic gaps not only requires elaborate policy reform but also an intentional focus on social support and healthcare infrastructure. It is necessary to develop an inclusive national data infrastructure that tracks dementia care access and patient outcomes. Additionally, to reduce caregiver burnout while improving patient outcomes, caregiver support necessitates expanded investment. These policies offer the opportunity to build a more equitable and effective dementia care system in a world where dementia continues to grow as a global health crisis.

Works Cited

1. Shah, R., Salek, M. S., Ali, F. M., Nixon, S. J., Otwombe, K., Ingram, J. R., & Finlay, A. Y. (2024). Dementia and its profound impact on family members and partners. Alzheimer Disease and Associated Disorders, 38(4), 338–343. https://doi.org/10.1097/WAD.0000000000000647

2. Alzheimer’s disease facts and figures. (n.d.). Alzheimer’s Association. Retrieved March 12, 2026, from https://www.alz.org/alzheimers-dementia/facts-figures

3. Kern, L. M., Riffin, C., Phongtankuel, V., Aucapina, J. E., Banerjee, S., Ringel, J. B., Tobin, J. N., Fisseha, S., Meiri, H., Bell, S. K., & Casale, P. N. (2024). Gaps in the coordination of care for people living with dementia. Journal of the American Geriatrics Society, 72(10), 3119–3128. https://doi.org/10.1111/jgs.19105

4. 10 types of dementia care specialists(+ memory care options). (2024, September 19). https://sunflowercommunities.org/types-of-dementia-care-specialists/

5. Timmins, L., Kern, L. M., O’Malley, A. S., Urato, C., Ghosh, A., & Rich, E. (2022). Communication gaps persist between primary care and specialist physicians. The Annals of Family Medicine, 20(4), 343–347. https://doi.org/10.1370/afm.2781

6. Cipriani, G., Danti, S., Picchi, L., Nuti, A., & Fiorino, M. D. (2020). Daily functioning and dementia. Dementia & Neuropsychologia, 14(2), 93–102. https://doi.org/10.1590/1980-57642020dn14-020001

7. Black, B. S., Johnston, D., Leoutsakos, J., Reuland, M., Kelly, J., Amjad, H., Davis, K., Willink, A., Sloan, D., Lyketsos, C., & Samus, Q. M. (2019). Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics. International Psychogeriatrics, 31(11), 1643–1654. https://doi.org/10.1017/S1041610218002296

8. Hellis, E., & Mukaetova-Ladinska, E. B. (2022). Informal caregiving and alzheimer’s disease: The psychological effect. Medicina, 59(1), 48. https://doi.org/10.3390/medicina59010048

9. Schulz, R., Eden, J., Adults, C. on F. C. for O., Services, B. on H. C., Division, H. and M., & National Academies of Sciences, E. (2016). Family caregiving roles and impacts. In Families Caring for an Aging America. National Academies Press (US). https://www.ncbi.nlm.nih.gov/books/NBK396398/

10. What are “social prescriptions” and how should they be integrated into care plans? (2023). AMA Journal of Ethics, 25(11), E795-801. https://doi.org/10.1001/amajethics.2023.795

11. Rethinking rural health. (n.d.). AAMC. https://doi.org/10.15766/rai_xmxk6320

12. Eken, H. N., Dee, E. C., Powers, A. R., & Jordan, A. (2021). Racial and ethnic differences in patients’ perception of providers’ cultural competence amongst patients with depression and anxiety symptoms. The Lancet. Psychiatry, 8(11), 957–968. https://doi.org/10.1016/S2215-0366(21)00285-6