Purpose of Review
Palliative care is likely to be of benefit to patients with dementia as it is with other progressive, life-limiting conditions. The purpose of this review is to provide an overview of recent updates into the research around palliative care for patients with dementia and to highlight gaps for further research.
There are disparities in hospice referrals and end of life care for patients with dementia compared to patients with other life-limiting conditions. Advance care planning interventions are being designed and tested as patients and their caregivers indicate a desire for more information from their healthcare providers, although significant challenges remain with regard to physician skills and time. Additional attention is being paid to non-cognitive symptoms of dementia, such as neuropsychiatric symptoms, with a new atypical antipsychotic medication recently submitted to the FDA for approval. Pain management, accurate prognostication, timing of palliative care interventions, and the effects of caregiving on caregiver health remain understudied areas.
There have been many recent advances in palliative care research as it pertains to patients with dementia. However, several gaps remain. Future research will be important to close these gaps in order to further optimize the care of patients with dementia.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Tax calculation will be finalised during checkout.
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
Tax calculation will be finalised during checkout.
Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
WHO. Palliative Care Fact Sheet 2018 [Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care. Accessed 05/07/2020.
Oliver DJ. Palliative care in motor neurone disease: where are we now? Palliat Care. 2019;12:1178224218813914.
Buecken R, Galushko M, Golla H, Strupp J, Hahn M, Ernstmann N, et al. Patients feeling severely affected by multiple sclerosis: how do patients want to communicate about end-of-life issues? Patient Educ Couns. 2012;88(2):318–24.
• Kluger BM, Miyasaki J, Katz M, Galifianakis N, Hall K, Pantilat S, et al. Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related disorders: a randomized clinical trial. JAMA Neurol. JAMA Neurol. 2020;77(5):551-560. First Pragmatic RCT of Integrated Palliative Care in Parkinson Disease.
WHO. Dementia Fact Sheet 2019 [Available from: https://www.who.int/news-room/fact-sheets/detail/dementia. Accessed 08/10/2020.
Freeland DG, Wu DS. Disease-specific advance care planning interventions for older adults. Current Geriatrics Reports. 2019;8:12–20.
Pieper MJC, van der Steen JT, Francke AL, Scherder EJA, Twisk JWR, Achterberg WP. Effects on pain of a stepwise multidisciplinary intervention (STA OP!) that targets pain and behavior in advanced dementia: a cluster randomized controlled trial. Palliat Med. 2018;32(3):682–92.
• Hanson LC, Kistler CE, Lavin K, Gabriel SL, Ernecoff NC, Lin FC, et al. Triggered palliative care for late-stage dementia: a pilot randomized trial. J Pain Symptom Manage. 2019;57(1):10–9. Pilot RCT of triggered palliative care consultation for patients with advanced dementia hospitalized for any acute reason.
Agar M, Luckett T, Luscombe G, Phillips J, Beattie E, Pond D, et al. Effects of facilitated family case conferencing for advanced dementia: a cluster randomised clinical trial. PLoS One. 2017;12(8):e0181020.
• Hanson LC, Zimmerman S, Song MK, Lin FC, Rosemond C, Carey TS, et al. Effect of the goals of care intervention for advanced dementia: a randomized clinical trial. JAMA Intern Med. 2017;177(1):24–31 RCT of GOC decision aid intervention for nursing home residents with advanced dementia.
• Song MK, Ward SE, Hepburn K, Paul S, Kim H, Shah RC, et al. Can persons with dementia meaningfully participate in advance care planning discussions? A mixed-methods study of SPIRIT. J Palliat Med. 2019;22(11):1410–6 Mixed methods pilot RCT of advance care planning intervention study in mild dementia.
• Huang HL, Lu WR, Liu CL, Chang HJ. Advance care planning information intervention for persons with mild dementia and their family caregivers: impact on end-of-life care decision conflicts. PLoS One. 2020;15(10):e0240684 Advance care planning intervention study in mild dementia in Taiwan.
Garand L, Dew MA, Lingler JH, DeKosky ST. Incidence and predictors of advance care planning among persons with cognitive impairment. Am J Geriatr Psychiatry. 2011;19(8):712–20.
• Pettigrew C, Brichko R, Black B, O’Connor MK, Austrom MG, Robinson MT, et al. Attitudes toward advance care planning among persons with dementia and their caregivers. Int Psychogeriatr. 2019 Jul 16;1-15. Large study of attitudes towards ACP among PWD and their caregivers.
Armstrong MJ, Alliance S, Corsentino P, DeKosky ST, Taylor A. Cause of death and end-of-life experiences in individuals with dementia with Lewy bodies. J Am Geriatr Soc. 2019;67(1):67–73.
• Sudore RL, Heyland DK, Lum HD, Rietjens JAC, Korfage IJ, Ritchie CS, et al. Outcomes that define successful advance care planning: a Delphi panel consensus. J Pain Symptom Manage. 2018;55(2):245-55 e8 Delphi panel defining ACP outcomes.
Morrison R. Advance directives/care planning: clear, simple, and wrong. J Palliat Med. 2020;23(7):878–9.
Quill TE, Abernethy AP. Generalist plus specialist palliative care — creating a more sustainable model. New England J Med. 2013;368(13):1173–5.
Lupu D. American Academy of H, Palliative Medicine Workforce Task F. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage. 2010;40(6):899–911.
• Spiker M, Paulsen K, Mehta AK. Primary palliative care education in U.S. residencies and fellowships: a systematic review of program leadership perspectives. J Palliat Med. 2020;23(10):1392–9 Systematic review of attitudes towards primary palliative care training among post-graduate training directors across specialties.
Back AL, Fromme EK, Meier DE. Training clinicians with communication skills needed to match medical treatments to patient values. J Am Geriatr Soc. 2019;67(S2):S435–S41.
Walter HAW, Seeber AA, Willems DL, de Visser M. The role of palliative care in chronic progressive neurological diseases-a survey amongst neurologists in the Netherlands. Front Neurol. 2018;9:1157.
Mehta AK, Najjar S, May N, Shah B, Blackhall L. A needs assessment of palliative care education among the United States adult neurology residency programs. J Palliat Med. 2018;21(10):1448–57.
Paladino J, Kilpatrick L, O'Connor N, Prabhakar R, Kennedy A, Neal BJ, et al. Training clinicians in serious illness communication using a structured guide: evaluation of a training program in three health systems. J Palliat Med. 2020;23(3):337–45.
Chung EH, Truong T, Jooste KR, Fischer JE, Davidson BA. The Implementation of communication didactics for OB/GYN residents on the disclosure of adverse perioperative events. J Surg Educ. 2020. https://doi.org/10.1016/j.jsurg.2020.09.001.
Nakagawa S, Fischkoff K, Berlin A, Arnell TD, Blinderman CD. Communication skills training for general surgery residents. J Surg Educ. 2019;76(5):1223–30.
National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care, 4th Ed. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018 [Available from: https://www.nationalcoalitionhpc.org/wp-content/uploads/2020/07/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf. Accessed 12/01/2020.
Black W, Almeida OP. A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. Int Psychogeriatr. 2004;16(3):295–315.
Ballard C, Banister C, Khan Z, Cummings J, Demos G, Coate B, et al. Evaluation of the safety, tolerability, and efficacy of pimavanserin versus placebo in patients with Alzheimer’s disease psychosis: a phase 2, randomised, placebo-controlled, double-blind study. Lancet Neurol. 2018;17(3):213–22.
• Yunusa I, El Helou ML, Alsahali S. Pimavanserin: a novel antipsychotic with potentials to address an unmet need of older adults with dementia-related psychosis. Front Pharmacol. 2020;11:87 Overview of the pharmacology and potential utility of pimavanserin.
Acadia Pharmaceuticals. ACADIA pharmaceuticals announces U.S. FDA accepted for filing the supplemental new drug application for NUPLAZID® (pimavanserin) for the treatment of hallucinations and delusions associated with dementia-related psychosis 2020 [Available from: https://ir.acadia-pharm.com/news-releases/news-release-details/acadia-pharmaceuticals-announces-us-fda-accepted-filing?field_nir_news_date_value%5Bmin%5D=. Accessed 11/19/2020.
Kales HC, Lyketsos CG, Miller EM, Ballard C. Management of behavioral and psychological symptoms in people with Alzheimer’s disease: an international Delphi consensus. Int Psychogeriatr. 2019;31(1):83–90.
Frederiksen KS, Cooper C, Frisoni GB, Frolich L, Georges J, Kramberger MG, et al. A European Academy of Neurology guideline on medical management issues in dementia. Eur J Neurol, 27:1805-1820.
Epstein-Lubow G, Fulton AT, Marino LJ, Teno J. Hospice referral after inpatient psychiatric treatment of individuals with advanced dementia from a nursing home. Am J Hosp Palliat Care. 2015;32(4):437–9.
Wilkins JM, Goldstein EK, Forester BP. Characteristics of hospice referrals from an inpatient geriatric psychiatry unit. Am J Geriatr Psychiatry. 2019;27(2):162–6.
Brody AA, Ciemins E, Newman J, Harrington C. The effects of an inpatient palliative care team on discharge disposition. J Palliat Med. 2010;13(5):541–8.
De Vleminck A, Morrison RS, Meier DE, Aldridge MD. Hospice care for patients with dementia in the United States: a longitudinal cohort study. J Am Med Dir Assoc. 2018;19(7):633–8.
Harrison KL, Bull JH, Garrett SB, Bonsignore L, Bice T, Hanson LC, et al. Community-based palliative care consultations: comparing dementia to nondementia serious illnesses. J Palliat Med 2020;23(8):1021-1029.
Martinsson L, Lundstrom S, Sundelof J. Quality of end-of-life care in patients with dementia compared to patients with cancer: a population-based register study. PLoS One. 2018;13(7):e0201051.
Scarmeas N, Albert M, Brandt J, Blacker D, Hadjigeorgiou G, Papadimitriou A, et al. Motor signs predict poor outcomes in Alzheimer disease. Neurology. 2005;64(10):1696–703.
Scarmeas N, Brandt J, Albert M, et al. Delusions and hallucinations are associated with worse outcome in alzheimer disease. Arch Neurol. 2005;62(10):1601–8.
Santacruz Escudero JM, Beltran J, Palacios A, Chimbi CM, Matallana D, Reyes P, et al. Neuropsychiatric symptoms as predictors of clinical course in neurodegeneration. A longitudinal study. Front Aging Neurosci. 2019;11:176.
Williams MM, Xiong C, Morris JC, Galvin JE. Survival and mortality differences between dementia with Lewy bodies vs Alzheimer disease. Neurology. 2006;67(11):1935–41.
Borda MG, Aarsland D, Tovar-Rios DA, Giil LM, Ballard C, Gonzalez MC, et al. Neuropsychiatric symptoms and functional decline in Alzheimer’s disease and Lewy body dementia. J Am Geriatr Soc. 2020;68(10):2257-2263.
Stallard E, Kinosian B, Stern Y. Personalized predictive modeling for patients with Alzheimer’s disease using an extension of Sullivan’s life table model. Alzheimers Res Ther. 2017;9(1):75.
Hannon B, Swami N, Rodin G, Pope A, Zimmermann C. Experiences of patients and caregivers with early palliative care: a qualitative study. Palliat Med. 2017;31(1):72–81.
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.
Song MK, Ward SE, Hepburn K, Paul S, Shah RC, Morhardt DJ. SPIRIT advance care planning intervention in early stage dementias: an NIH stage I behavioral intervention development trial. Contemp Clin Trials. 2018;71:55–62.
deLima TJ, Sanchez-Reilly S, Bernacki R, O'Neill L, Morrison LJ, Kapo J, et al. Advance care planning in cognitively impaired older adults. J Am Geriatr Soc. 2018;66(8):1469–74.
Lyons KS, Zarit SH, Sayer AG, Whitlatch CJ. Caregiving as a dyadic process: perspectives from caregiver and receiver. J Gerontol B Psychol Sci Soc Sci. 2002;57(3):P195-204.
Dufournet M, Dauphinot V, Moutet C, Verdurand M, Delphin-Combe F, Krolak-Salmon P, et al. Impact of cognitive, functional, behavioral disorders, and caregiver burden on the risk of nursing home placement. J Am Med Dir Assoc. 2019;20(10):1254–62.
Vitaliano PP, Ustundag O, Borson S. Objective and subjective cognitive problems among caregivers and matched non-caregivers. Gerontologist. 2017;57(4):637–47.
Correa MS, Giacobbo BL, Vedovelli K, Lima DB, Ferrari P, Argimon II, et al. Age effects on cognitive and physiological parameters in familial caregivers of Alzheimer’s disease patients. PLoS One. 2016;11(10):e0162619.
Vick JB, Ornstein KA, Szanton SL, Dy SM, Wolff JL. Does caregiving strain increase as patients with and without dementia approach the end of life? J Pain Symptom Manage. 2019;57(2):199–208 e2.
Brown CL, Wells JL, Hua AY, Chen KH, Merrilees J, Miller BL, et al. Emotion recognition and reactivity in persons with neurodegenerative disease are differentially associated with caregiver health. Gerontologist. 2020;60(7):1233–43.
• Terracciano A, Artese A, Yeh J, Edgerton L, Granville L, Aschwanden D, et al. Effectiveness of powerful tools for caregivers on caregiver burden and on care recipient behavioral and psychological symptoms of dementia: a randomized controlled trial. J Am Med Dir Assoc. 2020;21(8):1121-7 e1 RCT targeting caregiver burden and patient symptoms.
Conflict of Interest
The authors declare that they have no conflict of interest.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
This article is part of the Topical Collection on Neurology of Aging
About this article
Cite this article
Gottesman, R.T., Blinderman, C.D. Updated Review of Palliative Care in Dementia. Curr Geri Rep 10, 42–50 (2021). https://doi.org/10.1007/s13670-020-00351-5
- Palliative care