Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), The Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and The Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in The Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in The Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in The Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.

3rd Faculty of Medicine Charles University 100 00 Prague Czech Republic

Department of Medicine Duke University Durham NC 27710 USA

Department of Primary and Community Care Radboud university medical center P O Box 9101 6500 HB Nijmegen The Netherlands

Department of Public Health and Primary Care Leiden University Medical Center P O Box 9600 2300 RC Leiden The Netherlands

Maccabi Healthcare Services Modiin 7177806 Israel

School of Aging Studies University of South Florida Tampa FL 33620 USA

The Louis and Gabi Weisfeld School of Social Work Faculty of Social Sciences Bar Ilan University Ramat Gan 5290002 Israel

Zobrazit více v PubMed

Alzheimer’s Disease International World Alzheimer Report 2019: Attitudes to Dementia. [(accessed on 17 March 2021)]; Available online: https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf.

Brodaty H., Seeher K., Gibson L. Dementia time to death: A systematic literature review on survival time and years of life lost in people with dementia. Int. Psychogeriatr. 2012;24:1034–1045. doi: 10.1017/S1041610211002924. PubMed DOI

Wolters F.J., Tinga L.M., Dhana K., Koudstaal P.J., Hofman A., Bos D., Franco O.H., Ikram M.A. Life expectancy with and without dementia: A population-based study of dementia burden and preventive potential. Am. J. Epidemiol. 2019;188:372–381. doi: 10.1093/aje/kwy234. PubMed DOI

Beernaert K., Deliens L., Pardon K., Van den Block L., Devroey D., Chambaere K., Cohen J. What Are physicians’ reasons for not referring people with life-limiting illnesses to specialist palliative care services? A nationwide survey. PLoS ONE. 2015;10:e0137251. doi: 10.1371/journal.pone.0137251. PubMed DOI PMC

van der Steen J.T., Radbruch L., Hertogh C.M., De Boer M.E., Hughes J.C., Larkin P., Francke A.L., Jünger S., Gove D., Firth 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. doi: 10.1177/0269216313493685. PubMed DOI

OECD Health Statistics. [(accessed on 17 March 2021)]; Available online: https://www.oecd-ilibrary.org//sites/4dd50c09-en/1/2/11/7/index.html?itemId=/content/publication/4dd50c09-en&mimeType=text/html&_csp_=82587932df7c06a6a3f9dab95304095d&itemIGO=oecd&itemContentType=book.

van der Steen J.T., Sternberg S., Volicer L. Palliative care in dementia 1986–2016: Progress and remaining challenges. J. Am. Med. Dir. Assoc. 2017;18:190–191. doi: 10.1016/j.jamda.2016.11.009. PubMed DOI

Bentur N., Emanuel L.L., Cherney N. Progress in palliative care in Israel: Comparative mapping and next steps. Isr. J. Health Policy Res. 2012;1:9. doi: 10.1186/2045-4015-1-9. PubMed DOI PMC

World Health Organization Strengthening of palliative care as a component of integrated treatment throughout the life course. J. Pain Palliat. Care Pharmacother. 2014;28:130–134. doi: 10.3109/15360288.2014.911801. PubMed DOI

European Dementia Monitor 2020: Comparing and Benchmarking National Dementia Strategies and Policies. [(accessed on 9 April 2021)]; Available online: https://www.alzheimer-europe.org/Media/Files/9.-Publications/AE-Reports/European-Dementia-Monitor-2020-Comparing-and-benchmarking-national-dementiastrategies-and-policies.

Fleming J., Calloway R., Perrels A., Farquhar M., Barclay S., Brayne C. Cambridge City over-75s Cohort (CC75C) study. Dying comfortably in very old age with or without dementia in different care settings—A representative “older old” population study. BMC Geriatr. 2017;17:222. doi: 10.1186/s12877-017-0605-2. PubMed DOI PMC

Volicer L., Hurley A.C., Blasi Z.V. Characteristics of dementia end-of-life care across care settings. Am. J. Hosp. Palliat. Med. 2003;20:191–200. doi: 10.1177/104990910302000307. PubMed DOI

Fleming R., Kelly F., Stillfried G. ‘I want to feel at home’: Establishing what aspects of environmental design are important to people with dementia nearing the end of life. BMC Palliat. Care. 2015;14:1–14. doi: 10.1186/s12904-015-0026-y. PubMed DOI PMC

Murphy E., Froggatt K., Connolly S., O’Shea E., Sampson E.L., Casey D., Devane D. Palliative care interventions in advanced dementia. Cochrane Database Syst. Rev. 2016;12:CD011513. doi: 10.1002/14651858.CD011513.pub2. PubMed DOI PMC

Gaertner J., Siemens W., Meerpohl J.J., Antes G., Meffert C., Xander C., Stock S., Mueller D., Schwarzer G., Becker G. Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: Systematic review and meta-analysis. BMJ. 2017;357:j2925. doi: 10.1136/bmj.j2925. PubMed DOI PMC

Watson J., Giebel C., Green M., Darlington-Pollock F., Akpan A. Use of routine and cohort data globally in exploring dementia care pathways and inequalities: A systematic review. Int. J. Geriatr. Psychiatry. 2021;36:252–270. doi: 10.1002/gps.5419. DOI

Mitchell S.L., Teno J.M., Kiely D.K., Shaffer M.L., Jones R.N., Prigerson H.G., Volicer L., Givens J.L., Hamel M.B. The clinical course of advanced dementia. N. Engl. J. Med. 2009;361:1529–1538. doi: 10.1056/NEJMoa0902234. PubMed DOI PMC

Hendriks S.A., Smalbrugge M., van Gageldonk-Lafeber A.B., Galindo-Garre F., Schipper M., Hertogh C.M.P.M., van der Steen J.T. Pneumonia, intake problems, and survival among nursing home residents with variable stages of dementia in The Netherlands: Results from a prospective observational study. Alzheimer Dis. Assoc. Disord. 2017;31:200–208. doi: 10.1097/WAD.0000000000000171. PubMed DOI

van der Steen J.T., Di Giulio P., Giunco F., Monti M., Gentile S., Villani D., Finetti S., Pettenati F., Charrier L., Toscani F. End of Life Observatory–Prospective Study on DEmentia Patients Care (EoLO-PSODEC) Research Group. Pneumonia in nursing home patients with advanced dementia: Decisions, intravenous rehydration therapy, and discomfort. Am. J. Hosp. Palliat. Care. 2018;35:423–430. doi: 10.1177/1049909117709002. PubMed DOI PMC

Brown M.A., Sampson E.L., Jones L., Barron A.M. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: A systematic review. Palliat. Med. 2013;27:389–400. doi: 10.1177/0269216312465649. PubMed DOI PMC

Halevi Hochwald I., Radomyslsky Z., Danon Y., Nissanholtz-Gannot R. Challenges in home care at the end stage of dementia: Hospice units vs. home care units. A qualitative study. Death Stud. 2020;10:1–11. doi: 10.1080/07481187.2020.1829748. PubMed DOI

Harris-Kojetin L., Sengupta M., Park-Lee E., Valverde R. Long-term care services in the United States: 2013 overview. Vital Health Stat. 2013;37:1–107. PubMed

Koopmans R.T., Pellegrom M., Van Der Geer E.R. The Dutch Move beyond the concept of nursing home physician specialists. J. Am. Med. Dir. Assoc. 2017;18:746–749. doi: 10.1016/j.jamda.2017.05.013. PubMed DOI

Wertman E., Brodsky J., King Y., Bentur N., Chekhmir S. An estimate of the prevalence of dementia among community-dwelling elderly in Israel. Dement. Geriatr. Cogn. Disord. 2007;24:294–299. doi: 10.1159/000107593. PubMed DOI

Tenand M., Bakx P., Van Doorslaer E. Equal long-term care for equal needs with universal and comprehensive coverage? An assessment using Dutch administrative data. Health Econ. 2020;29:435–451. doi: 10.1002/hec.3994. PubMed DOI PMC

Rosen B., Waitzberg R., Merkur S. Israel: Health system review. Health Syst. Transit. 2015;17:138–142. PubMed

The National Hospice and Palliative Care Organization. [(accessed on 17 March 2021)]; Available online: https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf.

De Vleminck A., Morrison R.S., Meier D.E., Aldridge M.D. Hospice care for patients with dementia in the United States: A longitudinal cohort study. J. Am. Med. Dir. Assoc. 2018;19:633–638. doi: 10.1016/j.jamda.2017.10.003. PubMed DOI PMC

Rogers M., Meier D., Morrison R.S., Moreno J., Heitner R., Aldridge M. Unequal access to hospital palliative care in the United States: A state-by-state report card (RP518) J. Pain Symptom Manag. 2020;60:239. doi: 10.1016/j.jpainsymman.2020.04.110. DOI

van der Steen J.T., Lemos Dekker N., Gijsberts M.H.E., Vermeulen L.H., Mahler M.M. Palliative care for people with dementia in the terminal phase: A mixed-methods qualitative study to inform service development. BMC Palliat. Care. 2017;16:28. doi: 10.1186/s12904-017-0201-4. PubMed DOI PMC

Sternberg S.A., Sabar R., Katz G., Segal R., Fux-Zach L., Grofman V., Roth G., Cohen N., Radomyslaski Z., Bentur N. Home hospice for older people with advanced dementia: A pilot project. Isr. J. Health Policy Res. 2019;8:42. doi: 10.1186/s13584-019-0304-x. PubMed DOI PMC

van der Steen J.T., Deliens L., Koopmans R.T., Onwuteaka-Philipsen B.D. Physicians’ perceptions of suffering in people with dementia at the end of life. Palliat. Support. Care. 2017;15:587–599. doi: 10.1017/S1478951516000985. PubMed DOI

Matarasso Greenfeld S., Gil E., Agmon M. A bridge to cross: Tube feeding and the barriers to implementation of palliative care for the advanced dementia patient. J. Clin. Nurs. 2020 doi: 10.1111/jocn.15437. PubMed DOI

Bentur N., Bentur N., Sternberg S. Implementation of advance care planning in Israel: A convergence of top-down and bot-tom-up processes. Gerontologist. 2019;59:420–425. doi: 10.1093/geront/gnx157. PubMed DOI

Brazil K., Galway K., Carter G., van der Steen J.T. Providing optimal palliative care for persons living with dementia: A comparison of physician perceptions in The Netherlands and the United Kingdom. J. Palliat. Med. 2017;20:473–477. doi: 10.1089/jpm.2015.0274. PubMed DOI

Carr D., Luth E.A. Advance care planning: Contemporary issues and future directions. Innov. Aging. 2017;1:igx012. doi: 10.1093/geroni/igx012. PubMed DOI PMC

Wright J.L., Jaggard P.M., Holahan T. Ethics subcommittee of AMDA–The society for post-acute and long-term care. Stopping eating and drinking by advance directives (SED by AD) in assisted living and nursing homes. J. Am. Med. Dir. Assoc. 2019;20:1362–1366. doi: 10.1016/j.jamda.2019.07.026. PubMed DOI

Volicer L., Pope T.M., Steinberg K.E. Assistance with eating and drinking only when requested can prevent living with advanced dementia. J. Am. Med. Dir. Assoc. 2019;20:1353–1355. doi: 10.1016/j.jamda.2019.08.035. PubMed DOI

Mitchell S.L., Mor V., Gozalo P.L., Servadio J.L., Teno J. Tube feeding in US nursing home residents with advanced dementia 2000–2004. JAMA. 2016;316:769–770. doi: 10.1001/jama.2016.9374. PubMed DOI PMC

Mitchell S.L., Shaffer M.L., Loeb M.B., Givens H.D., Kiely D.K., D’Agata E. Infection treatment and multi-drug-resistant organisms in nursing home residents with advanced dementia. JAMA Int. Med. 2014;174:1660–1667. doi: 10.1001/jamainternmed.2014.3918. PubMed DOI PMC

Callahan C.M., Tu W., Unroe K.T., LaMantia M.A., Stump T.E., Clark D.O. Transitions in care in a nationally representa-tive sample of older Americans with dementia. J. Am. Geriatr. Soc. 2015;63:1495–1502. doi: 10.1111/jgs.13540. PubMed DOI PMC

Gozalo P., Teno J.M., Mitchell S.L., Skinner J., Bynum J., Tyler D., Mor V. End-of-life transitions among nursing home residents with cognitive issues. NEJM. 2011;365:1212–1221. doi: 10.1056/NEJMsa1100347. PubMed DOI PMC

Teno J.M., Gozalo P., Khandelwal N., Curtis J.R., Meltzer D., Engelberg R., Mor V. Association of increasing use of mechanical ventilation among nursing home residents with advanced dementia and intensive care unit beds. JAMA Int. Med. 2016;176:1809–1816. doi: 10.1001/jamainternmed.2016.5964. PubMed DOI PMC

Pasman R., Onwuteaka-Philipsen B., Ribbe M., Van Der Wal G. Withholding the artificial administration of fluids and food from elderly patients with dementia: Ethnographic study. Br. Med. J. 2002;325:1326. doi: 10.1136/bmj.325.7376.1326. PubMed DOI PMC

Helton M.R., van der Steen J.T., Daaleman T.P., Gamble G.R., Ribbe M.W. A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia. Ann. Fam. Med. 2006;4:221–227. doi: 10.1370/afm.536. PubMed DOI PMC

van der Steen J.T., Kruse R.L., Ooms M.E., Ribbe M.W., van der Wal G., Heintz L.L., Mehr D.R. Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and The Netherlands: An Ocean Apart. J. Am. Geriatr. Soc. 2004;52:691–699. doi: 10.1111/j.1532-5415.2004.52204.x. PubMed DOI

Hendriks S.A., Smalbrugge M., Deliens L., Koopmans R.T., Onwuteaka-Philipsen B.D., Hertogh C.M., van der Steen J.T. End-of-life treatment decisions in nursing home residents dying with dementia in The Netherlands. Int. J. Geriatr. Psychiatry. 2016;32:e43–e49. doi: 10.1002/gps.4650. PubMed DOI

Koopmans R.T., Lavrijsen J.C., Hoek J.F., Went P.B., Schols J.M. Dutch elderly care physician: A new generation of nursing home physician specialists. J. Am. Geriatr. Soc. 2010;58:1807–1809. doi: 10.1111/j.1532-5415.2010.03043.x. PubMed DOI

van der Steen J.T., Meuleman-Peperkamp I., Ribbe M.W. Trends in treatment of pneumonia among Dutch nursing home patients with dementia. J. Palliat. Med. 2009;12:789–795. doi: 10.1089/jpm.2009.0049. PubMed DOI

van der Maaden T., van der Steen J.T., de Vet H.C., Hertogh C.M., Koopmans R.T. Prospective observations of discomfort, pain, and dyspnea in nursing home residents with dementia and pneumonia. J. Am. Med. Dir. Assoc. 2016;17:128–135. doi: 10.1016/j.jamda.2015.08.010. PubMed DOI

Aminoff B.Z. Overprotection phenomenon with dying dementia patients. Am. J. Hosp. Palliat. Med. 2005;22:247–248. doi: 10.1177/104990910502200401. PubMed DOI

Gil E., Agmon M., Hirsch A., Ziv M., Zisberg A. Dilemmas for guardians of advanced dementia patients regarding tube feeding. Age Ageing. 2018;47:138–143. doi: 10.1093/ageing/afx161. PubMed DOI

Fedorowsky R., Bachner Y.G., Borer A., Ciobotaro P., Kushnir T. Use of antibiotics among end-of-life hospitalized patients with advanced directives: Status examination and association with infectious disease consultation and physician burnout. Infect. Control. Hosp. Epidemiol. 2019;40:1222–1228. doi: 10.1017/ice.2019.203. PubMed DOI

Bentur N., Sternberg S., Shuldiner J., Dwolatzky T. Feeding tubes for older people with advanced dementia living in the community in Israel. Am. J. Alzheimer’s Dis. Dement. 2014;30:165–172. doi: 10.1177/1533317514539726. PubMed DOI PMC

van Wijmen M.P., Rurup M.L., Pasman H.R., Kaspers P.J., Onwuteaka-Philipsen B.D. Advance directives in The Netherlands: An empirical contribution to the exploration of a cross-cultural perspective on advance directives. Bioethics. 2010;24:118–126. doi: 10.1111/j.1467-8519.2009.01788.x. PubMed DOI

Hendriks S.A., Smalbrugge M., Hertogh C.M.P.M., van der Steen J.T. Changes in care goals and treatment orders around the occurrence of health problems and hospital transfers in dementia: A prospective study. J. Am. Geriatr. Soc. 2017;65:769–776. doi: 10.1111/jgs.14667. PubMed DOI

O’Sullivan R., Mailo K., Angeles R., Agarwal G. Advance directives: Survey of primary care patients. Can. Fam. Physician. 2015;61:353–356. PubMed PMC

Zive D.M., Jimenez V.M., Fromme E.K., Tolle S.W. Changes over time in the Oregon physician orders for life-sustaining treatment registry: A study of two decedent cohorts. J. Palliat. Med. 2019;22:500–507. doi: 10.1089/jpm.2018.0446. PubMed DOI PMC

van der Steen J.T., Helton M.R., Ribbe M.W. Prognosis is important in decisionmaking in Dutch nursing home patients with dementia and pneumonia. Int. J. Geriatr. Psychiatry. 2009;24:933–936. doi: 10.1002/gps.2198. PubMed DOI

Durepos P., Wickson-Griffiths A., Hazzan A.A., Kaasalainen S., Vastis V., Battistella L., Papaioannou A. Assessing palliative care content in dementia care guidelines: A systematic review. J. Pain Symptom Manag. 2017;53:804–813. doi: 10.1016/j.jpainsymman.2016.10.368. PubMed DOI

Brodsky J., Bentur N., Laron M., Ben-Israel S. Addressing Alzheimer’s and other Types of Dementia: Israeli National Strategy. Myers-JDC-Brookdale Institute; Jerusalem, Israel: 2013.

Nakanishi M., Nakashima T., Shindo Y., Miyamoto Y., Gove D., Radbruch L., van der Steen J.T. An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper. Int. Psychogeriatr. 2015;27:1551–1561. doi: 10.1017/S1041610215000150. PubMed DOI

Nakanishi M., van der Steen J.T. National dementia plans to address escalating global palliative care needs. Palliat. Med. 2020;34:966–967. doi: 10.1177/0269216320913466. PubMed DOI

van Riet Paap J., Mariani E., Chattat R., Koopmans R., Kerhervé H., Leppert W., Forycka M., Radbruch L., Jaspers B., Vissers K., et al. Identification of the palliative phase in people with dementia: A variety of opinions between healthcare professionals. BMC Palliat. Care. 2015;14:131–141. doi: 10.1186/s12904-015-0053-8. PubMed DOI PMC

Bolt S.R., Meijers J.M., van der Steen J.T., Schols J.M., Zwakhalen S.M. Nursing staff needs in providing palliative care for persons with dementia at home or in nursing homes: A survey. J. Nurs. Sch. 2020;52:164–173. doi: 10.1111/jnu.12542. PubMed DOI PMC

McInerney F., Doherty K., Bindoff A., Robinson A., Vickers J. How is palliative care understood in the context of dementia? Results from a massive open online course. Palliat. Med. 2018;32:594–602. doi: 10.1177/0269216317743433. PubMed DOI PMC

van der Steen J.T., Onwuteaka-Philipsen B.D., Knol D.L., Ribbe M.W., Deliens L. Caregivers’ understanding of dementia predicts patients’ comfort at death: A prospective observational study. BMC Med. 2013;11:105. doi: 10.1186/1741-7015-11-105. PubMed DOI PMC

van der Steen J.T., Heck S., Juffermans C.C., Garvelink M.M., Achterberg W.P., Clayton J., Thompson G., Koopmans R.T., van der Linden Y.M. Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: A mixed-methods evaluation study. BMJ Open. 2021;11:e044591. doi: 10.1136/bmjopen-2020-044591. PubMed DOI PMC