Advertisement

Dementia Care at the End of Life: A Clinically Focused Review

  • Dax Volle
    Correspondence
    Send correspondence and reprint requests to Dax C. Volle, M.D., Geisel School of Medicine at Dartmouth, 1 Medical Center Drive, Lebanon, NH 03756.
    Affiliations
    Department of Psychiatry (DV), Dartmouth-Hitchcock Medical Center, Lebanon, NH
    Search for articles by this author
Published:November 11, 2022DOI:https://doi.org/10.1016/j.jagp.2022.11.006

      Highlights

      • What is the primary questions addressed by this study?
        • This review focuses on the care of those with dementia at the end of life, what barriers exist to receiving high quality care, how to address prognostication in advanced dementia, and how to approach symptomatic management in dementia at the end of life.
      • What is the main finding of this study?
        • Data is available to guide our understanding of how to counsel patents and families about the natural illness course of dementia, the prognosis after a dementia diagnosis or near the end of life, and how to ameliorate symptoms and suffering in patients with dementia at the end of life.
      • What is the meaning of the finding?
        • The adoption of a palliative approach to dementia care, especially at the end of life, has the potential to address historical disparities in the quality of dementia care and to reduce distress in suffering for patients and caregivers.

      ABSTRACT

      With the geriatric population in the United States growing rapidly, the prevalence of dementia is expected to rise concomitantly. As dementia is an invariably progressive and terminal illness, planning for and managing end of life care in dementia is an important part of the overall process of dementia care. Unfortunately, this is often neglected outside of formal palliative and hospice medicine training programs and geriatric psychiatrists are left without preparation on how to manage, as well as counsel patients and families on, this important phase of dementia care. This review aims to explore the potential contributors to this historic disparity in geriatric education and care delivery, as well as its impact, while also attempting to shift the field's focus toward a palliative approach to dementia care. To begin to accomplish this, this review explores the natural illness history/disease trajectory of the various dementing illnesses, as well as the topic of prognostication as it pertains to the end of life for patients with dementia and how this information can be used in advanced care planning and symptom management.

      Key Words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to The American Journal of Geriatric Psychiatry
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • National Center for Health Statistics (US)
        Health, United States, 2016: With Chartbook on Long-term Trends in Health.
        National Center for Health Statistics (US), Hyattsville (MD)2017
        • Alzheimer's Association
        2018 Alzheimer's disease facts and figures.
        Alzheimer's Dementia. 2018; 14: 367-429
        • Matthews KA
        • Xu W
        • Gaglioti AH
        • et al.
        Racial and ethnic estimates of Alzheimer's disease and related dementias in the United States (2015–2060) in adults aged ≥65 years.
        Alzheimer's & Dementia. Advance online publication, 2018
      1. National Institute on Aging. (2017). What causes Alzheimer's disease? Retrieved from https://www.nia.nih.gov/health/what-causes-alzheimers-disease

        • Tejada-Vera B
        Mortality from Alzheimer's disease in the United States: Data for 2000 to 2010.
        NCHS Data Brief. National Center for Health Statistics, Hyattsville, MD2013
        • Weuve J
        • Hebert LE
        • Scherr PA
        • et al.
        Deaths in the United States among persons with Alzheimer's disease (2010-2050).
        Alzheimer's Dementia. 2014; 10: e40-e46https://doi.org/10.1016/j.jalz.2014.01.004
        • Sampson EL
        • Gould V
        • Lee D
        • et al.
        Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study.
        Age Ageing. 2006; 35: 187-189https://doi.org/10.1093/ageing/afj025
        • Sampson EL
        • Ritchie CW
        • Lai R
        • et al.
        A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia.
        Int Psychogeriatr. 2005; 17: 31-40https://doi.org/10.1017/s1041610205001018
        • Murphy E
        • Froggatt K
        • Connolly S
        • et al.
        Palliative care interventions in advanced dementia.
        Cochrane Database Syst Rev. 2016; 12CD011513https://doi.org/10.1002/14651858.CD011513.pub2
        • Shen MJ
        • Wellman JD
        Evidence of palliative care stigma: The role of negative stereotypes in preventing willingness to use palliative care.
        Palliative Supp Care. 2019; 17: 374-380https://doi.org/10.1017/S1478951518000834
        • Fields L
        • Shalev D
        • Nathanson M
        • et al.
        Palliative care training for geriatric psychiatry fellows: a national survey project.
        Am J Geriatr Psychiatry. 2022; 30: 504-510https://doi.org/10.1016/j.jagp.2021.08.008
        • Erel M
        • Marcus E-L
        • Dekeyser-Ganz F
        Barriers to palliative care for advanced dementia: a scoping review.
        Ann Palliat Med. 2017; 6: 365-379
        • Crowther J
        • Costello J
        Palliative care for people with advanced major neuro-cognitive disorders.
        Int J Palliat Nurs. 2017; 23: 502-510
      2. Epidemiology And Patterns Of Care At The End Of Life: Rising Complexity, Shifts In Care Patterns And Sites Of Death | Health Affairs. (2020). Health Affairs. Retrieved from https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2017.0182

        • Treasure J
        Review: exploration of psychological and physical health differences between caregivers and non-caregivers.
        Evid Based Ment Health. 2004; 7:28https://doi.org/10.1136/ebmh.7.1.28
        • Harrad R
        • Sulla F
        Factors associated with and impact of burnout in nursing and residential home care workers for the elderly.
        Acta Biomed. 2018; 89: 60-69https://doi.org/10.23750/abm.v89i7-S.7830
        • Kim SK
        • Park M
        Effectiveness of person-centered care on people with dementia: a systematic review and meta-analysis.
        Clin Interventions Aging. 2017; 12: 381-397https://doi.org/10.2147/CIA.S117637
        • Eisenmann Y
        • Golla H
        • Schmidt H
        • et al.
        Palliative care in advanced Dementia.
        Front Psychiatr. 2020; 11: 699https://doi.org/10.3389/fpsyt.2020.00699
        • Dening KH
        • Jones L
        • Sampson EL
        Advance care planning for people with dementia: a review.
        Int Psychogeriatr. 2011; 23: 1535-1551https://doi.org/10.1017/S1041610211001608
        • Piers R
        • Albers G
        • Gilissen J
        • et al.
        Advance care planning in dementia: recommendations for healthcare professionals.
        BMC Palliat care. 2018; 17: 88https://doi.org/10.1186/s12904-018-0332-2
        • Kelly AJ
        • Luckett T
        • Clayton JM
        • et al.
        Advance care planning in different settings for people with dementia: a systematic review and narrative synthesis.
        Palliat Support care. 2019; 17: 707-719https://doi.org/10.1017/S1478951519000257
        • Givens JL
        • Sudore RL
        • Marshall GA
        • et al.
        Advance care planning in community-dwelling patients with dementia.
        J Pain Symptom Manage. 2018; 55: 1105-1112https://doi.org/10.1016/j.jpainsymman.2017.12.473
        • Triplett P
        • et al.
        Content of advance directives for individuals with advanced dementia.
        J Aging Health. 2008; 20: 583-597
        • Ryan T
        • Amen KM
        • McKeown J
        The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature.
        Ann Palliat Med. 2017; 6: 380-389https://doi.org/10.21037/apm.2017.06.15
        • deLima T
        • Sanchez-Reilly J
        • Bernacki S
        • et al.
        Advance care planning in cognitively impaired older adults.
        J Am Geriatr Soc. 2018; 66: 1469-1474https://doi.org/10.1111/jgs.15471
        • Kollisch DO
        • Santulli RB
        • Bernat JL
        The limits of advance directives in maintaining autonomy in patients with advanced Dementia.
        Am J Med. 2021; 134: 963-967https://doi.org/10.1016/j.amjmed.2021.02.032
        • Roheger M
        • Xu H
        • Hoang M
        • et al.
        Conversion between the mini-mental state examination and the montreal cognitive assessment for patients with different forms of Dementia.
        J Am Med Dir Assoc. 2022; xxx: 1-4https://doi.org/10.1016/j.jamda.2022.03.018
        • Moye J
        • Karel MJ
        • Edelstein B
        • et al.
        Assessment of capacity to consent to treatment: challenges, the "ACCT" approach, future directions.
        Clin Gerontol. 2007; 31: 37-66https://doi.org/10.1080/07317110802072140
        • Colenda CC
        • Blazer DG
        Review of religious variables in advance care planning for end-of-life care: consideration of faith as a new construct.
        Am J Geriatr Psychiatry. 2022; 30: 747-758https://doi.org/10.1016/j.jagp.2021.11.014
        • Pereira-Salgado A
        • Mader P
        • O'Callaghan C
        • et al.
        Religious leaders’ perceptions of advance care planning: a secondary analysis of interviews with Buddhist, Christian, Hindu, Islamic, Jewish, Sikh and Bahá’í leaders.
        BMC Palliative Care. 2017; 16https://doi.org/10.1186/s12904-017-0239-3
        • Mendez MF
        Early-onset Alzheimer disease and its variants.
        Continuum (N Y). 2019; 25: 34-51https://doi.org/10.1212/CON.0000000000000687
        • Rabinovici GD
        Late-onset Alzheimer Disease.
        Continuum (N Y). 2019; 25: 14-33https://doi.org/10.1212/CON.0000000000000700
        • Mölsä P
        • Marttila R
        • Rinne U
        Long-term survival and predictors of mortality in Alzheimer's disease and multi-infarct dementia.
        Acta Neurol Scand. 2009; 91: 159-164https://doi.org/10.1111/j.1600-0404.1995.tb00426.x
        • Williams MM
        • Xiong C
        • Morris JC
        • et al.
        Survival and mortality differences between dementia with Lewy bodies vs Alzheimer disease.
        Neurology. 2006; 67: 1935-1941https://doi.org/10.1212/01.wnl.0000247041.63081.98
        • Lopez OL
        • Wisniewski S
        • Hamilton RL
        • et al.
        Predictors of progression in patients with AD and Lewy bodies.
        Neurology. 2000; 54: 1774-1779https://doi.org/10.1212/wnl.54.9.1774
        • Hodges JR
        • Davies R
        • Xuereb J
        • et al.
        Survival in frontotemporal dementia.
        Neurology. 2003; 61: 349-354https://doi.org/10.1212/01.wnl.0000078928.20107.52
        • Levy G
        • Tang MX
        • Louis ED
        • et al.
        The association of incident dementia with mortality in PD.
        Neurology. 2002; 59: 1708-1713https://doi.org/10.1212/01.wnl.0000036610.36834.e0
        • Greene P
        Progressive supranuclear palsy, corticobasal degeneration, and multiple system atrophy.
        Continuum (N Y). 2019; 25: 919-935https://doi.org/10.1212/CON.0000000000000751
        • 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: 1034-1045https://doi.org/10.1017/S1041610211002924
        • Strand BH
        • Knapskog AB
        • Persson K
        • et al.
        Survival and years of life lost in various aetiologies of dementia, mild cognitive impairment (MCI) and subjective cognitive decline (SCD) in Norway.
        PLoS One. 2018; 13e0204436https://doi.org/10.1371/journal.pone.0204436
        • Reisberg B
        • Ferris SH
        • de Leon MJ
        • et al.
        The Global Deterioration Scale for assessment of primary degenerative dementia.
        Am J Psychiatry. 1982; 139: 1136-1139https://doi.org/10.1176/ajp.139.9.1136
        • Mitchell SL
        • Teno JM
        • Kiely DK
        • et al.
        The clinical course of advanced dementia.
        N Engl J Med. 2009; 361: 1529-1538https://doi.org/10.1056/NEJMoa0902234
        • Mitchell SL
        • Miller SC
        • Teno JM
        • et al.
        The advanced dementia prognostic tool: a risk score to estimate survival in nursing home residents with advanced dementia.
        J Pain Symptom Manage. 2010; 40: 639-651https://doi.org/10.1016/j.jpainsymman.2010.02.014
        • Loizeau AJ
        • Shaffer ML
        • Habtemariam DA
        • et al.
        Association of prognostic estimates with burdensome interventions in nursing home residents with advanced dementia.
        JAMA Intern. Med. 2018; 178: 922-929https://doi.org/10.1001/jamainternmed.2018.1413
        • Miller SC
        • Gozalo P
        • Mor V
        Hospice enrollment and hospitalization of dying nursing home patients.
        Am J Med. 2001; 111: 38-44https://doi.org/10.1016/s0002-9343(01)00747-1
        • Miller SC
        • Mor V
        • Wu N
        • et al.
        Does receipt of hospice care in nursing homes improve the management of pain at the end of life?.
        J Am Geriatr Soc. 2002; 50: 507-515https://doi.org/10.1046/j.1532-5415.2002.50118.x
        • Kiely DK
        • Givens JL
        • Shaffer ML
        • et al.
        Hospice use and outcomes in nursing home residents with advanced dementia.
        J Am Geriatr Soc. 2010; 58: 2284-2291https://doi.org/10.1111/j.1532-5415.2010.03185.x
        • Shega JW
        • Hougham GW
        • Stocking CB
        • et al.
        Patients dying with dementia: experience at the end of life and impact of hospice care.
        J Pain Symptom Manage. 2008; 35: 499-507https://doi.org/10.1016/j.jpainsymman.2007.06.011
      3. Centers for Medicare & Medicaid Services. Local Coverage Determination (LCD) for Hospice Determining Terminal Status (L32015) http://www.cms.gov (Accessed on July 12, 2022).

        • Hanson LC
        • Ersek M
        • Lin FC
        • et al.
        Outcomes of feeding problems in advanced dementia in a nursing home population.
        J Am Geriatr Soc. 2013; 61: 1692-1697https://doi.org/10.1111/jgs.12448
        • Sampson EL
        • Candy B
        • Jones L
        Enteral tube feeding for older people with advanced dementia.
        Cochrane Database Syst Rev. 2009; 2009CD007209https://doi.org/10.1002/14651858.CD007209.pub2
        • Cervo FA
        • Bryan L
        • Farber S
        To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision-making process.
        Geriatrics. 2006; 61: 30-35
        • Hanson LC
        • Ersek M
        • Gilliam R
        • et al.
        Oral feeding options for people with dementia: a systematic review.
        J Am Geriatr Soc. 2011; 59: 463-472https://doi.org/10.1111/j.1532-5415.2011.03320.x
        • Baijens LW
        • Clavé P
        • Cras P
        • et al.
        European Society for Swallowing Disorders - European Union Geriatric Medicine Society white paper: oropharyngeal dysphagia as a geriatric syndrome.
        Clin Intervent Aging. 2016; 11: 1403-1428https://doi.org/10.2147/CIA.S107750
        • Lyketsos CG
        • Steinberg M
        • Tschanz JT
        • et al.
        Mental and behavioral disturbances in dementia: findings from the Cache County Study on Memory in Aging.
        Am J Psychiatry. 2000; 157: 708-714https://doi.org/10.1176/appi.ajp.157.5.708
        • Tractenberg RE
        • Weiner MF
        • Thal LJ
        Estimating the prevalence of agitation in community-dwelling persons with Alzheimer's disease.
        J Neuropsychiatry Clin Neurosci. 2002; 14: 11-18https://doi.org/10.1176/jnp.14.1.11
        • Warden V
        • Hurley AC
        • Volicer L
        Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale.
        J Am Med Dir Assoc. 2003; 4: 9-15https://doi.org/10.1097/01.JAM.0000043422.31640.F7
        • Husebo BS
        • Ballard C
        • Fritze F
        • et al.
        Efficacy of pain treatment on mood syndrome in patients with dementia: a randomized clinical trial.
        Int J Geriatr Psychiatry. 2014; 29: 828-836https://doi.org/10.1002/gps.4063
        • Sampson EL
        • Candy B
        • Davis S
        • et al.
        Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life.
        Palliat Med. 2018; 32: 668-681https://doi.org/10.1177/0269216317726443
        • Tan ZS
        • Jennings L
        • Reuben D
        Coordinated care management for dementia in a large academic health system.
        Health Aff. 2014; 33: 619-625https://doi.org/10.1377/hlthaff.2013.1294
        • Bamford C
        • Lee R
        • Mclellan E
        • et al.
        What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders.
        BMC Geriatrics. 2018; 18: 619-625https://doi.org/10.1186/s12877-018-0983-0
        • Jennings LA
        • Turner M
        • Keebler C
        • et al.
        The effect of a comprehensive dementia care management program on end-of-life care.
        J Am Geriatr Soc. 2019; 67: 443-448https://doi.org/10.1111/jgs.15769
        • Samus QM
        • Johnston D
        • Black BS
        • et al.
        A multidimensional home-based care coordination intervention for elders with memory disorders: the maximizing independence at home (MIND) pilot randomized trial.
        Am J Geriatr Psychiatry. 2014; 22: 398-414https://doi.org/10.1016/j.jagp.2013.12.175
        • Crawley S
        • Sampson EL
        • Moore KJ
        • et al.
        Grief in family carers of people living with dementia: a systematic review.
        Int Psychogeriatr. 2022; (Advance online publication 1-32 per the Pubmed citation): 1-32https://doi.org/10.1017/S1041610221002787
        • Lindauer A
        • Harvath TA
        Pre-death grief in the context of dementia caregiving: a concept analysis.
        J Adv Nurs. 2014; 70: 2196-2207https://doi.org/10.1111/jan.12411
        • Givens JL
        • Prigerson HG
        • Kiely DK
        • et al.
        Grief among family members of nursing home residents with advanced dementia.
        Am J Geriatr Psychiatry. 2011; 19: 543-550https://doi.org/10.1097/JGP.0b013e31820dcbe0
        • Blandin K
        • Pepin R
        Dementia grief: a theoretical model of a unique grief experience.
        Dementia. 2017; 16: 67-78https://doi.org/10.1177/1471301215581081
        • Holley CK
        • Mast B
        Predictors of anticipatory grief in dementia caregivers.
        Clin Gerontol. 2010; 33: 223-236https://doi.org/10.1080/07317111003793443
        • Arruda EH
        • Paun O
        Dementia caregiver grief and bereavement: an integrative review.
        West J Nurs Res. 2017; 39: 825-851https://doi.org/10.1177/0193945916658881
        • Paun O
        • Farran CJ
        • Fogg L
        • et al.
        A chronic grief intervention for dementia family caregivers in long-term care.
        West J Nurs Res. 2015; 37: 6-27https://doi.org/10.1177/0193945914521040

      Linked Article