External Resources: Care Planning

Caring for someone with dementia begins with understanding their unique needs and having the right supports at hand. Whether you’re caring for someone living in a private home or an assisted living community, the right resources can help ensure their safety, well-being, and quality of life. This page provides practical tools, guides, and supports to help navigate daily challenges, coordinate care, and create meaningful, person-centered experiences for individuals living with dementia.

Case Study: Candid Discussions Illuminate Value of Simple Pleasures in Elderly Woman With Severe Dementia. (2023). Nunez, C. J. Consult QD. Cleveland Clinic. Available at https://consultqd.clevelandclinic.org/case-study-candid-discussions-illuminate-value-of-simple-pleasures-in-elderly-woman-with-severe-dementia.

• This case study from Cleveland Clinic illustrates how candid goals-of-care conversations helped guide end-of-life decisions for an elderly woman with severe dementia, ultimately centering care around what mattered most to her—enjoying her favorite food, French fries. Through a compassionate, person-centered approach, invasive procedures were avoided, and hospice care was embraced to preserve her quality of life.

Discontinuity of social support among US adults with cognitive impairment before and after the confirmed diagnosis of dementia: a matched ambidirectional cohort study. (2025). Zhang, H., Underwood, B.R., London, S., Zhao, H., Yu, J., Feng, D., & Chen, S. BMC Medicine. Available at https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-025-04264-y#xd_co_f=ZGQ3MTkxNTMtNTA5NC00Njk3LWI3ZTktMjZiM2U4YzNjMTBm~.

• This cohort study found that after receiving a dementia diagnosis, adults with cognitive impairment experienced significant increases in unmet needs—particularly with instrumental activities of daily living (IADLs), such as making phone calls. Moreover, disparities emerged: among Hispanic participants, unmet basic activity needs (BADLs) like eating assistance rose markedly; among Black adults, toileting and IADL support needs increased significantly. Gender differences were also observed—women saw reduced unmet BADL support but increased unmet IADL needs, while men experienced substantial increases in both toileting and IADL deficits. In short, this study highlights a troubling gap: the dementia diagnosis itself may not prompt alignment between disability and care provision and may even exacerbate unmet support needs, especially among historically underserved subgroups.

Discovering the 4Ms: A Framework for Creating Age-friendly Health Systems. (2018). John A. Hartford Foundation. John A. Hartford Foundation Blog. Available at https://www.johnahartford.org/blog/view/discovering-the-4ms-a-framework-for-creating-age-friendly-health-systems/.

• This blog post from The John A. Hartford Foundation highlights the development and impact of the 4Ms Framework—What Matters, Medication, Mentation, and Mobility—as a foundation for building Age-Friendly Health Systems that consistently deliver high-quality care to older adults. It emphasizes how the 4Ms help healthcare teams align care with older patients’ goals and needs, fostering system-wide transformation and combating ageism in medical practice.

Emergency Department Care Coordination Program for Assisted Living Residents With Dementia. (2025). Wittenberg, G.F., Serina, P.T., Stetten, N.E., et al. JAMA Network. Available at https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2837374?guestAccessKey=8333453e-283a-4f44-9f6d-7f17dcd8f73b.

• This qualitative study explores a care coordination intervention aimed at improving emergency department (ED) transitions for assisted living residents, especially those living with dementia. The program, run by complex care managers (CCMs), uses electronic alerts and direct communication (fax/phone) to relay critical clinical information with a resident is registered at the ED. Key opportunities for improvement were limited ED staff awareness of the program and lack of 24/7 CCM coverage. Overall, CCMs viewed the program as positively impacting both patient experience and care quality.

How Do We Achieve Person-Centered Care Across Health Care Settings? Expanding Ideological Perspectives into Practice to Advance Person-Centered Care. (2024). Heid, A. R., Talmage, A., Abbott, K. M., Madrigal, C., Behrens, L. L., & Van Haitsma, K. S. Journal of the American Medical Directors Association, 25(8), 105069. Available at https://doi.org/10.1016/j.jamda.2024.105069.

• This article explores the ongoing challenges of implementing true person-centered care (PCC) across health care settings, despite decades of advocacy and research. It reviews key PCC frameworks and argues for a unified, evidence-based approach to move beyond ideological concepts toward consistent, integrated care for older adults.

Identifying Patient, Care Partner, and Clinician Needs for Functional Recovery Following Hospitalization When Dementia is Present. (2025). Gustavson, A., et al. Journal of the American Medical Directors Association, 0(0), 105534. Available at https://www.jamda.com/article/S1525-8610(25)00051-9/fulltext.

• This study identifies the needs of veterans with dementia, care partners, and rehabilitation clinicians regarding home-based care following hospitalization. Key findings emphasize the importance of collaborative decision-making, thorough follow-through in transitions, and the potential of alternative care models, including technology, to improve post-acute outcomes and support independence at home.

My Health Checklist. Institute for Healthcare Improvement. Available at https://www.ihi.org/my-health-checklist.

• My Health Checklist is a free, printable workbook designed to help older adults—and their caregivers—prepare for medical appointments by focusing on what matters most. Available in multiple languages—English, Spanish, Portuguese, and Chinese—this tool empowers older adults and caregivers to lead discussions at appointments, ask clearer questions, and advocate for care that truly reflects their priorities.

The Fundamentals of Person-Centered Care for Individuals with Dementia. (2018). Fazio, S., Pace, D., Flinner, J., & Kallmyer, B. The Gerontologist, 58(suppl_1), S10–S19. Available at https://www.alz.org/getmedia/51c0902c-d7ae-4ddb-8374-129c137bed06/dementia-care-the-fundamentals-of-person-centered-care-for-individuals-with-dementia-2018.pdf.

• This foundational review, published in The Gerontologist and produced by the Alzheimer’s Association, defines person-centered care as a philosophy grounded in knowing and honoring each individual living with dementia through meaningful relationships. It traces the approach’s origins from Carl Rogers and Tom Kitwood, outlines its core dimensions—including comfort, attachment, inclusion, occupation, and identity—and describes tools and real-world interventions that embody the model

What Matters Most: Case Study of Successful Patient-Directed Gabapentin Taper to Improve Mentation, Mobility, and Medications. (2025). Paulsen, M. R., Navalurkar, R., Tunoa, J., Bartlett, B., & Ritchey, K. C. Journal of the American Geriatrics Society. Available at https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.19482?af=R.

• This article presents a real-life case study showing how a patient-centered approach improved a person’s thinking, mobility, and medication use. The case follows John, a 68-year-old man taking gabapentin for neuropathic pain, whose caregivers used the Patient Priorities Care (PPC) model—part of the Age-Friendly Health Systems’ “4Ms” framework—to align treatment with his personal goals. With support and shared decision-making, John gradually tapered off gabapentin over 22 weeks. Throughout this period, his neuropathic pain remained stable, but he experienced noticeable improvements in alertness, reduced sedation, better balance and physical function, and overall medication simplification.