End-of-life and Palliative Care in Dementia: An Overview for Clinicians

GBD 2023 Causes of Death Collaborators. Global burden of 292 causes of death in 204 countries and territories and 660 subnational locations, 1990–2023: a systematic analysis for the Global Burden of Disease Study 2023. Lancet. 2025;406:1811–72. https://doi.org/10.1016/S0140-6736(25)01917-8.

Article  Google Scholar 

Liang C-S, Li D-J, Yang F-C, Tseng P-T, Carvalho AF, Stubbs B, et al. Mortality rates in Alzheimer’s disease and non-Alzheimer’s dementias: a systematic review and meta-analysis. Lancet Healthy Longev. 2021;2:e479–88. https://doi.org/10.1016/S2666-7568(21)00140-9.

Article  PubMed  Google Scholar 

WHO. WHO definition of palliative care [Internet]. WHO. [cited 2018 Jan 27]. http://www.who.int/cancer/palliative/definition/en/. Accessed 27 Jan 2018.

van der Steen JT, Radbruch L, Hertogh CMPM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28:197–209. https://doi.org/10.1177/0269216313493685.

Article  PubMed  Google Scholar 

Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982;139:1136–9. https://doi.org/10.1176/ajp.139.9.1136.

Article  CAS  PubMed  Google Scholar 

Mitchell SL. CLINICAL PRACTICE. Advanced Dementia. N Engl J Med. 2015;372:2533–40. https://doi.org/10.1056/NEJMcp1412652.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Sclan SG, Reisberg B. Functional assessment staging (FAST) in Alzheimer’s disease: reliability, validity, and ordinality. Int Psychogeriatr. 1992;4(Suppl 1):55–69. https://doi.org/10.1017/s1041610292001157.

Article  PubMed  Google Scholar 

Gupta E, Patel P. Palliative care in dementia. Ann Palliat Med. 2024;13:791–807. https://doi.org/10.21037/apm-23-503.

Article  PubMed  Google Scholar 

Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330:1007–11. https://doi.org/10.1136/bmj.330.7498.1007.

Article  PubMed  PubMed Central  Google Scholar 

Orlovic M, Droney J, Vickerstaff V, Rosling J, Bearne A, Powell M, et al. Accuracy of clinical predictions of prognosis at the end-of-life: evidence from routinely collected data in urgent care records. BMC Palliat Care. 2023;22:51. https://doi.org/10.1186/s12904-023-01155-y.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Mitchell SL, Miller SC, Teno JM, Davis RB, Shaffer ML. The Advanced Dementia Prognostic Tool: a risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manage. 2010;40:639–51. https://doi.org/10.1016/j.jpainsymman.2010.02.014.

Article  PubMed  PubMed Central  Google Scholar 

Deardorff WJ, Barnes DE, Jeon SY, Boscardin WJ, Langa KM, Covinsky KE, et al. Development and external validation of a mortality prediction model for community-dwelling older adults with dementia. JAMA Intern Med. 2022;182:1161–70. https://doi.org/10.1001/jamainternmed.2022.4326.

Article  PubMed  PubMed Central  Google Scholar 

McCoy TH, Perlis RH. Predicting hospice eligibility among dementia patients using language models. Alzheimers Dement. 2025;21:e70878. https://doi.org/10.1002/alz.70878.

Article  PubMed  PubMed Central  Google Scholar 

Wang L, Sha L, Lakin JR, Bynum J, Bates DW, Hong P, et al. Development and validation of a deep learning algorithm for mortality prediction in selecting patients with dementia for earlier palliative care interventions. JAMA Netw Open. 2019;2:e196972. https://doi.org/10.1001/jamanetworkopen.2019.6972.

Article  PubMed  PubMed Central  Google Scholar 

Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361:1529–38. https://doi.org/10.1056/NEJMoa0902234.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Mitchell SL, Mor V, Gozalo PL, Servadio JL, Teno JM. Tube feeding in US nursing home residents with advanced dementia, 2000–2014. JAMA. 2016;316:769–70. https://doi.org/10.1001/jama.2016.9374.

Article  PubMed  PubMed Central  Google Scholar 

Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med. 2000;342:206–10. https://doi.org/10.1056/NEJM200001203420312.

Article  CAS  PubMed  Google Scholar 

Lee Y-F, Hsu T-W, Liang C-S, Yeh T-C, Chen T-Y, Chen N-C, et al. The efficacy and safety of tube feeding in advanced dementia patients: a systemic review and meta-analysis study. J Am Med Dir Assoc. 2021;22:357–63. https://doi.org/10.1016/j.jamda.2020.06.035.

Article  PubMed  Google Scholar 

Davies N, Barrado-Martín Y, Vickerstaff V, Rait G, Fukui A, Candy B, et al. Enteral tube feeding for people with severe dementia. Cochrane Database Syst Rev. 2021;8:CD013503. https://doi.org/10.1002/14651858.CD013503.pub2.

Article  PubMed  PubMed Central  Google Scholar 

Volkert D, Beck AM, Faxén-Irving G, Frühwald T, Hooper L, Keller H, et al. ESPEN guideline on nutrition and hydration in dementia - Update 2024. Clin Nutr. 2024;43:1599–626. https://doi.org/10.1016/j.clnu.2024.04.039.

Article  PubMed  Google Scholar 

American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc. 2014;62:1590–3. https://doi.org/10.1111/jgs.12924.

Article  Google Scholar 

Stall NM, Quinn KL, van der Steen JT, Trimble J, Clarfield AM, Mitchell SL. Enteral tube feeding in people with advanced dementia. BMJ. 2025;389:e075326. https://doi.org/10.1136/bmj-2023-075326.

Article  PubMed  Google Scholar 

Malhotra C, Andres EB, Ramakrishnan C. The end of life with dementia in Asian countries: barriers, facilitators and a research agenda for advancing a palliative approach. J Am Geriatr Soc. 2026;74:522–31. https://doi.org/10.1111/jgs.70283.

Article  PubMed  PubMed Central  Google Scholar 

Avnon Sawicki A, Dwolatzky T, Clarfield AM. Medical choices regarding feeding tubes in patients with end-stage dementia in Israel: nasogastric vs. percutaneous endoscopic gastrostomy. Eur Geriatr Med. 2023;14:219–22. https://doi.org/10.1007/s41999-022-00725-2.

Article  PubMed  Google Scholar 

Sternberg SA, Shinan-Altman S, Volicer L, Casarett DJ, van der Steen JT. Palliative care in advanced dementia: comparison of strategies in three countries. Geriatr (Basel). 2021;6:44. https://doi.org/10.3390/geriatrics6020044.

Article  Google Scholar 

Erel M, Marcus E-L, Dekeyser-Ganz F. Barriers to palliative care for advanced dementia: a scoping review. Ann Palliat Med. 2017;6:365–79. https://doi.org/10.21037/apm.2017.06.13.

Article  PubMed  Google Scholar 

Mitchell SL, Shaffer ML, Loeb MB, Givens JL, Habtemariam D, Kiely DK, et al. Infection management and multidrug-resistant organisms in nursing home residents with advanced dementia. JAMA Intern Med. 2014;174:1660–7. https://doi.org/10.1001/jamainternmed.2014.3918.

Article  PubMed  PubMed Central  Google Scholar 

Loeb M, Bentley DW, Bradley S, Crossley K, Garibaldi R, Gantz N, et al. Development of minimum criteria for the initiation of antibiotics in residents of long-term-care facilities: results of a consensus conference. Infect Control Hosp Epidemiol. 2001;22:120–4. https://doi.org/10.1086/501875.

Article  CAS  PubMed  Google Scholar 

Givens JL, Jones RN, Shaffer ML, Kiely DK, Mitchell SL. Survival and comfort after treatment of pneumonia in advanced dementia. Arch Intern Med. 2010;170:1102–7. https://doi.org/10.1001/archinternmed.2010.181.

Article  PubMed  PubMed Central  Google Scholar 

Dufour AB, Shaffer ML, D’Agata EMC, Habtemariam D, Mitchell SL. Survival after suspected urinary tract infection in individuals with advanced dementia. J Am Geriatr Soc. 2015;63:2472–7. https://doi.org/10.1111/jgs.13833.

Article  PubMed 

Comments (0)

No login
gif