Aldridge MD, Hunt LJ, Harrison KL, McKendrick K, Li L, Morrison RS. (2023). Health Care Costs Associated with Hospice Use for People with Dementia in the US. Health Aff (Millwood). 2023 Sep;42(9):1250-1259. Retrieved December 23, 2025 from doi:10.1377/hlthaff.2023.00036.

Alzheimer’s.gov. (2026). Tips for Caregivers and Families of People With Dementia. Retrieved March 18, 2026 from https://www.alzheimers.gov/life-with-dementia/tips-caregivers.

Alzheimer’s Association. (2025). 2025 Alzheimer’s Disease Facts and Figures. Retrieved September 16, 2025 from https://www.alz.org/getmedia/ef8f48f9-ad36-48ea-87f9-b74034635c1e/alzheimers-facts-and-figures.pdf.

Alzheimer’s Disease International (ADI). (2022). Life after diagnosis: Navigating treatment, care, and support. Retrieved August 15, 2025 from https://www.alzint.org/u/World-Alzheimer-Report-2022.pdf.

American Geriatrics Society (AGS). (2023). American Geriatrics Society 2023 updated AGS Beers Criteria® for potentially inappropriate medication use in older adults. Journal of the American Geriatrics Society. Retrieved August 15, 2025 from https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.18372.

Anu K N, Radhakrishna VC, Sojan A, et al. (2024). Association between severity of dementia, wandering behavior, and caregiver burden among caregivers of persons living with dementia. Journal of Geriatric Mental Health 11(1):p 22-26, Jan–Jun 2024. Retrieved March 19, 2026 from doi:10.4103/jgmh.jgmh_17_23.

Avis KA, Stroebe M, and Schut H. (2021). Stages of Grief Portrayed on the Internet: A Systematic Analysis and Critical Appraisal. Front. Psychol. 12:772696. Retrieved March 18, 2026 doi:10.3389/fpsyg.2021.772696.

Baber W, Chang CYM, Yates J, Dening T. (2021). The Experience of Apathy in Dementia: A Qualitative Study. Int J Environ Res Public Health. 2021 Mar 23;18(6):3325. Retrieved December 8, 2025 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005167/.

Barlund AS, André B, Sand K, et al. (2021). A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer. BMC Palliat Care 20, 7. Retrieved December 24, 2025 from https://doi.org/10.1186/s12904-020-00705-y.

Bosco A, Di Lorito C, Yang Y, et al. (2024). Caregiver experiences of hospice dementia care: a systematic review and meta-ethnography. Aging & Mental Health, 28(2), 197–206. Retrieved December 16, 2025 from https://doi.org/10.1080/13607863.2023.2241027.

Bucko P, Novack MA, Ho EH, Ece B, et al. (2025). Identification and synthesis of end-of-life decision-making measures: a scoping review. Front. Med. 12:1540486. Retrieved March 22, 2026 from doi:10.3389/fmed.2025.1540486.

Buuren L, Derks D, Mohammadi M and Colenbrander B. (2025). Wayfinding behavioral patterns of seniors with dementia: two exploratory case studies. Front. Dement. 4:1524425. Retrieved March 24, 2026 fom doi:10.3389/frdem.2025.1524425.

Cain P, Chejor P, Porock D. (2023). Chemical restraint as behavioural euthanasia: case studies from the Royal Commission into Aged Care Quality and Safety. BMC Geriatr. 2023 Jul 19;23(1):444. Retrieved August 18, 2025 from https://pmc.ncbi.nlm.nih.gov/articles/PMC10357622/.

California Advocates for Nursing Home Reform (CANHR). (2025). Restraint-Free Care. Retrieved October 10, 2025 from https://canhr.org/restraint-free-care/.

Center for Medicare and Medicaid Services (CMS). (2024). Center for Clinical Standards and Quality/Quality, Safety & Oversight Group. Retrieved March 12, 2026 from https://www.cms.gov/files/document/revised-long-term-care-ltc-surveyor-guidance-significant-revisions-enhance-quality-and-oversight-ltc.pdf.

Chang CYM, Baber W, Dening T, Yates J. (2021). "He Just Doesn't Want to Get Out of the Chair and Do It": The Impact of Apathy in People with Dementia on Their Carers. Int J Environ Res Public Health. 2021 Jun 11;18(12):6317. Retrieved December 22, 2025 from doi:10.3390/ijerph18126317.

Chavez-Mendoza LF, Vázquez-Alvarez AO, et al. (2025). Dementia and Sleep Disorders: The Effects of Drug Therapy in a Systematic Review. International Journal of Molecular Sciences. 2025; 26(12):5654. Retrieved March 10, 2026 from https://doi.org/10.3390/ijms26125654

Dementia Friends USA. (2022). Join the Movement! Become a Dementia Friend. Retrieved December 8, 2025 from https://dementiafriendsusa.org/.

Dolphin H, Dyer AH, McHale C, O'Dowd S, Kennelly SP. (2023). An Update on Apathy in Alzheimer's Disease. Geriatrics (Basel). 2023 Jul 14;8(4):75. Retrieved December 8, 2025 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10366907/.

Florida Statutes, The. (2025). Nursing Homes and Related Healthcare Facilities. Residents’ Rights. Retrieved December 5, 2025 from https://www.leg.state.fl.us/statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=0400-0499/0400/Sections/0400.022.html.

Frank J, Huessard K, Broyles I, et al. (2025). Medicare hospice use patterns among patients with Alzheimer’s disease or related dementias compared to those with other terminal diagnoses (Issue Brief). U.S. Department of Health and Human Services. Retrieved March 9, 2026 from https://aspe.hhs.gov/sites/default/files/documents/006d9e86b489c019015d7fa708a07024/HospiceAlz.pdf.

Galof K. (2025) Living with dementia in a care home: facilitating participation in activities. Front. Sports Act. Living 7:1563025. Retrieved March 12, 2026 doi:10.3389/fspor.2025.1563025.

García-Martín V, de Hoyos-Alonso MC, Delgado-Puebla R, et al. (2023). Burden in caregivers of primary care patients with dementia: influence of neuropsychiatric symptoms according to disease stage (NeDEM project). BMC Geriatr 23, 525. Retrieved September 18, 2025 from https://doi.org/10.1186/s12877-023-04234-0.

Giebel C. (2024). A new model to understand the complexity of inequalities in dementia. Int J Equity Health 23, 160 (2024). Retrieved March 11, 2026 from https://doi.org/10.1186/s12939-024-02245-w

Goswami R, Dalton H, Khalaf McStay C, et al. (2025). Promoting health equity in palliative care: strategies for hospital and health system leaders. J Hosp Manag Health Policy 2025;9:22. Retrieved March 21, 2026 from doi:10.21037/jhmhp-24-125.

GovTrack.us. (2020, latest available). H.R. 3545—100th Congress: Omnibus Budget Reconciliation Act of 1987. Retrieved August 18, 2025 from https://www.govtrack.us/congress/bills/100/hr3545. 

Guzzon A, Rebba V, Paccagnella O, et al. (2023). The value of supportive care: A systematic review of cost-effectiveness of non-pharmacological interventions for dementia. PLoS ONE 18(5): e0285305. Retrieved March 10, 2026 from https://doi.org/10.1371/journal.pone.0285305.

Healy D, Flynn A, Conlan O, McSharry J, Walsh J. (2022). Older Adults’ Experiences and Perceptions of Immersive Virtual Reality: Systematic Review and Thematic Synthesis. JMIR Serious Games. 2022;10(4):e35802 Retrieved March 16, 2026 from doi:10.2196/35802.

Hu M, Han S, Ghorbany S, Zhang K. (2024). Healthy Aging in Place with the Aid of Smart Technologies: A Systematic Review. Encyclopedia. 2024; 4(4):1918-1932. Retrieved December 17, 2025 from https://doi.org/10.3390/encyclopedia4040125.

Hui D, Cheng S-Y, Paiva CE. (2024). Pharmacologic Management of End-of-Life Delirium: Translating Evidence into Practice. Cancers. 2024, 16(11), 2045. Retrieved January 2, 2026 from https://doi.org/10.3390/cancers16112045.

Iacob E, Hollingshaus M, Utz RL, et al. (2025). Caregiving at end-of-life: How do family structure and dementia status impact antidepressant and anxiolytic prescriptions among families? Alzheimers Dement. 2025 Jun;21(6):e14590. Retrieved March 22, 2026 from doi:10.1002/alz.14590.

Joseph, J. (2025). Designing for dignity: ethics of AI surveillance in older adult care. Front. Digit. Health. Retrieved March 12, 2026 from doi.org/10.3389/fdgth.2025.1643238.

Kokorelias KM, Stall NM, Wasilewski M, et al. (2025). Navigating the dementia caregiving journey: A scoping review protocol of interventions and their responsiveness to caregivers' evolving needs across the illness trajectory. PLoS One 20(9):e0333475. Retrieved December 15, 2025 from https://doi.org/10.1371/journal.

Lam L, Fadrique L, Bin Noon G, et al. (2022). Evaluating Challenges and Adoption Factors for Active Assisted Living Smart Environments. Front. Digit. Health. Retrieved March 12, 2026 from https://www.frontiersin.org/journals/digital-health/articles/10.3389/fdgth.2022.891634/full.

Laranjeira C, Dixe MA, Martinho R, et al. (2022). Building Bridges for “Palliative Care-in-Place”: Development of a mHealth Intervention for Informal Home Care. Front. Psychol. 13:862347. Retrieved January 1, 2026 from doi:10.3389/fpsyg.2022.862347.

Lassell RKF, Moreines LT, Luebke MR, et al. (2022). Hospice interventions for persons living with dementia, family members and clinicians: A systematic review. J Am Geriatr Soc. 2022 Jul;70(7):2134-2145. Retrieved September 19, 2025 from doi:10.1111/jgs.17802.

Lauridsen S, Schou-Juul F, Folke AP, et al. (2023). Developing the CARE intervention to enhance ethical self-efficacy in dementia care through the use of literary texts. BMC Med Ethics 24, 45. Retrieved August 18, 2025 from https://doi.org/10.1186/s12910-023-00926-9.

Li B, Jin H, Yan G, et al. (2024). Mental states in caregivers toward people with Alzheimer’s disease at different stages. Front. Neurol. 14:1327487. Retrieved March 15, 2026 from doi:10.3389/fneur.2023.1327487.

Lichwala K, Szukalska S, Karczewska M, et al. (2026). Multimodal Management of Aggression in Dementia Among Geriatric Patients: A Comprehensive Overview with Particular Emphasis on Pharmacotherapy and Behavioral Interventions. Cureus 18(1): e101807. Retrieved March 19, 2026 from doi:10.7759/cureus.101807.

Lygum VL, Mathiasen N, and Frandsen AK. (2025). The Nature Support Model for Dementia: a conceptual idea for green nursing home environments designed to support well-being throughout the last stages of dementia. Front. Psychol. 16:1567619. Retrieved March 9, 2026 from doi:10.3389/fpsyg.2025.1567619.

MedPAC.gov. (2025). Hospices Services: Report to Congress, Chapter 9. Retrieved December 23, 2025 from https://www.medpac.gov/wp-content/uploads/2025/03/Mar25_Ch9_MedPAC_Report_To_Congress_SEC.pdf.

Moran S, Bailey ME, Doody O. (2024). Role and contribution of the nurse in caring for patients with palliative care needs: A scoping review. PLoS ONE 19(8): e0307188. Retrieved March 18, 2026 from https://doi.org/10.1371/journal.pone.0307188.

Mukherjee U, Sehar U, Brownell M, Reddy PH. (2024). Sleep deprivation in dementia comorbidities: focus on cardiovascular disease, diabetes, anxiety/depression and thyroid disorders. Aging. 2024 Nov 20;16(21):13409-13429. Retrieved March 10, 2026 from doi:10.18632/aging.206157.

Murray J, Thompson J, Hill M, James I. (2025). An ethnographic study to develop a taxonomy of lies for communicating with people with moderate to severe dementia. Nurs Ethics. 2025 Feb;32(1):272-287. Retrieved March 20, 2026 from doi:10.1177/09697330241246087.

National Alliance for Care at Home (NACAH). (2024). NHPCO Facts and Figures. 2024 Edition. Retrieved December 8, 2025 from https://allianceforcareathome.org/wp-content/uploads/2024/09/Facts-Figures-2024_FINAL.pdf.

Office of the Inspector General (OIS). (2022). Long-Term Trends of Psychotropic Drug Use in Nursing Homes. Report in Brief, November 2022. Retrieved August 18, 2025 from https://oig.hhs.gov/oei/reports/OEI-07-20-00500.pdf.

Oh O, Ulrich CM, Massimo L, Demiris G. (2025). Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidence. Palliat Med. 2025 Oct;39(9):948-964. Retrieved December 8, 2025 from https://pmc.ncbi.nlm.nih.gov/articles/PMC12476476/#section23-02692163251353013.

Pinkert C and Holle B. (2023). Home-based care for people living with dementia at the end of life: the perspective of experts. BMC Palliative Care. 2023, 22:123. Retrieved December 29, 2025 from https://doi.org/10.1186/s12904-023-01251-z.

Qi H, Ban J, Wang N, Yao T, Li L, Tang S. (2026). Factors influencing the caregiver burden for family caregivers of people with moderate-to-severe dementia: A structural equation modeling analysis. PLoS One 21(2): e0341719. Retrieved March 19, 2026 from https://doi.org/10.1371/journal.pone.0341719.

Rupp L, Seidel K, Penger S, and Haberstroh J. (2023). Reducing Dementia Grief Through Psychosocial Interventions, a Systematic Review. European Psychologist. Volume 28, Issue 2, March 2023. Retrieved August 18, 2025 from https://econtent.hogrefe.com/doi/10.1027/1016-9040/a000501. 

Saccaro LF, Privé B, D’Imperio A, et al. (2025). Ethical dilemmas in the care of patients suffering from psychotic catatonia: a case report. Front. Psychiatry 16:1543563. Retrieved March 19, 2026 from doi:10.3389/fpsyt.2025.1543563.

Sadowska K, Turnwald M, O'Neil T, et al. (2024). Behavioral symptoms and treatment challenges for patients living with dementia: Hospice clinician and caregiver perspectives. J Am Geriatr Soc. 2025 Apr;73(4):1094-1104. Retrieved November 6, 2025 from https://pmc.ncbi.nlm.nih.gov/articles/PMC11970226/.

Scerbe A, O’Connell ME, Astell A, et al. (2023). Digital tools for delivery of dementia education for caregivers of persons with dementia: A systematic review and meta-analysis of impact on caregiver distress and depressive symptoms. PLoS ONE 18(5): e0283600. Retrieved September 18, 2025 from https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0283600.

Scher CJ, Anderson K, Zagorski W, et al. (2025). “We feel like a family here”: person-centered outcomes of adult day services use from the voices of people living with dementia and their caregivers. BMC Health Serv Res 25, 1188. Retrieved March 19, 2026 from https://doi.org/10.1186/s12913-025-13436-8.

Schou-Juul F, Ferm LMT, Kinch S, et al. (2024). Ethical self-efficacy among healthcare professionals caring for people with dementia: a brief pre- and post-report on the CARE intervention. BMC Med Ethics 25, 109. Retrieved December 5, 2025 from https://doi.org/10.1186/s12910-024-01106-z.

Shubair SA. (2025). Caregiving-related strain among informal caregivers of older adults with dementia: findings from a nationally representative study. Front. Public Health 13:1618379. Retrieved March 17, 2026 from doi:10.3389/fpubh.2025.1618379.

Siegelaar A, Mobach MP, Janus S, Zuidema SU. (2025). The Physical Environment and the Quality of Life and Behavior in People with Dementia: A Systematic Meta-Review. Sage Open Aging. 2025 Jun 13;11:30495334251345092. Retrieved March 18, 2026 from doi:10.1177/30495334251345092.

Stasolla F, Di Gioia M, Messina I, et al. (2024). Assessing and recovering Alzheimer's disease: a comparative analysis of standard neuropsychological approaches and virtual reality interventions with the use of digital storytelling. Front Psychol. Retrieved September 11, 2025 from https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2024.1406167/full.

Sussman T and Tétrault B. (2022). “People are more afraid of a dementia diagnosis than of death”: The challenges of supporting advance care planning for persons with dementia in community settings. Front. Dement. 1:1043661. Retrieved December 29, 2025 from doi:10.3389/frdem.2022.1043661.

Tamer E, Hoover DR, McDonald MV, et al. (2025). Feasibility, acceptability, and preliminary efficacy protocol of an intervention for caregivers of hospice patients living with dementia: A pilot randomized control trial. PLoS One 20(11): e0332360. Retrieved December 29, 2025 from https://doi.org/10.1371/journal.pone.0332360.

Tao S, Li H, Huang J and Li J. (2025). Research progress on risk prediction models of physical restraint in the elderly: a narrative review. Front. Aging 6:1650339. Retrieved March 21, 2026 from doi:10.3389/fragi.2025.1650339.

Tasseron-Dries PEM, Smaling HJA, Nakanishi M, et al. (2023). What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review. BMJ Open. 2023 Dec 7;13(12):e071804. Retrieved October 22, 2025 from doi:10.1136/bmjopen-2023-071804.

Telenius EW, Tangen GG, Eriksen S, et al. (2022). Fun and a meaningful routine: the experience of physical activity in people with dementia. BMC Geriatr 22, 500. Retrieved December 5, 2025 from https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-022-03149-6.

Waddington C, Flanagan K, Clements H, et al. (2023). Grief and loss in people living with dementia: a review and metasynthesis of qualitative studies. Aging & Mental Health, 28(3), 408–421. Retrieved December 5, 2025 from https://doi.org/10.1080/13607863.2023.2280925.

Wang S, Gu W, Zhang L, Liu W, et al. (2026). Patient-reported outcome measures for anticipatory grief: a systematic review. Front Psychol. 2026 Feb 11;17:1709822. Retrieved March 18, 2026 from doi:10.3389/fpsyg.2026.1709822.

Welsch J and Schicktanz S. (2025). Empowerment in structures. Practical-ethical considerations of the preconditions for technology-assisted dementia care in Germany based on an expert-interview study. Front. Psychiatry 15:1437967. Retrieved March 19, 2026 from doi:10.3389/fpsyt.2024.1437967.

Wittmann J, Bieber A, Carroll J, et al. (2024) Exploring self-experience practices in dementia care: A scoping review. PLoS ONE 19(5): e0302929. Retrieved March 19, 2026 from https://doi.org/10.1371/journal.pone.0302929.

Wiegelmann H, Speller S, Verhaert LM, et al. (2021). Psychosocial interventions to support the mental health of informal caregivers of persons living with dementia: A systematic literature review. BMC Geriatr 21(94). Retrieved December 5, 2025 from https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-021-02020-4.

Woo OKL and Lee AM. (2023). A perspective on potential psychological risks and solutions of using virtual reality in palliative care. Front. Virtual Real. 4:1256641. Retrieved March 16, 2026 from doi:10.3389/frvir.2023.1256641.

World Health Organization (WHO). (2023). Policy brief on integrating rehabilitation into palliative care services. Retrieved December 15, 2025 from https://www.who.int/europe/publications/i/item/WHO-EURO-2023-5825-45590-68173.

Yuan Q, Zhang Y, Samari E, et al. (2023). Positive aspects of caregiving among informal caregivers of persons with dementia in the Asian context: a qualitative study. BMC Geriatr. 2023 Jan 27;23(1):51. Retrieved March 15, 2026 from doi:10.1186/s12877-023-03767-8.

Yin G, Sivaramakrishnan D, Macaden L. (2024). Bring dying at home: What facilitates and hinders home-based end-of-life care for people living with dementia? A systematic review and meta-ethnography protocol. PLoS ONE 19(12):e0316446. Retrieved December 16, 2025 from https://doi.org/10.1371/journal.

Yous ML, Boamah SA, Hunter PV, et al. (2023). Exploring the factors influencing meaningful engagement of persons living with advanced dementia through the Namaste Care Program: a qualitative descriptive study. Palliat Care Soc Pract. 2023 Apr 1;17:26323524231165319. Retrieved March 12, 2026 from https://pmc.ncbi.nlm.nih.gov/articles/PMC10071147/.