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
Key Words
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-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 PsychiatryReferences
- Health, United States, 2016: With Chartbook on Long-term Trends in Health.National Center for Health Statistics (US), Hyattsville (MD)2017
- 2018 Alzheimer's disease facts and figures.Alzheimer's Dementia. 2018; 14: 367-429
- 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
National Institute on Aging. (2017). What causes Alzheimer's disease? Retrieved from https://www.nia.nih.gov/health/what-causes-alzheimers-disease
- Mortality from Alzheimer's disease in the United States: Data for 2000 to 2010.NCHS Data Brief. National Center for Health Statistics, Hyattsville, MD2013
- 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
- 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
- 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
- Palliative care interventions in advanced dementia.Cochrane Database Syst Rev. 2016; 12CD011513https://doi.org/10.1002/14651858.CD011513.pub2
- 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
- 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
- Barriers to palliative care for advanced dementia: a scoping review.Ann Palliat Med. 2017; 6: 365-379
- Palliative care for people with advanced major neuro-cognitive disorders.Int J Palliat Nurs. 2017; 23: 502-510
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
- 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
- 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
- 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
- Palliative care in advanced Dementia.Front Psychiatr. 2020; 11: 699https://doi.org/10.3389/fpsyt.2020.00699
- Advance care planning for people with dementia: a review.Int Psychogeriatr. 2011; 23: 1535-1551https://doi.org/10.1017/S1041610211001608
- Advance care planning in dementia: recommendations for healthcare professionals.BMC Palliat care. 2018; 17: 88https://doi.org/10.1186/s12904-018-0332-2
- 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
- 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
- Content of advance directives for individuals with advanced dementia.J Aging Health. 2008; 20: 583-597
- 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
- Advance care planning in cognitively impaired older adults.J Am Geriatr Soc. 2018; 66: 1469-1474https://doi.org/10.1111/jgs.15471
- 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
- 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
- Assessment of capacity to consent to treatment: challenges, the "ACCT" approach, future directions.Clin Gerontol. 2007; 31: 37-66https://doi.org/10.1080/07317110802072140
- 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
- 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
- Early-onset Alzheimer disease and its variants.Continuum (N Y). 2019; 25: 34-51https://doi.org/10.1212/CON.0000000000000687
- Late-onset Alzheimer Disease.Continuum (N Y). 2019; 25: 14-33https://doi.org/10.1212/CON.0000000000000700
- 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
- 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
- Predictors of progression in patients with AD and Lewy bodies.Neurology. 2000; 54: 1774-1779https://doi.org/10.1212/wnl.54.9.1774
- Survival in frontotemporal dementia.Neurology. 2003; 61: 349-354https://doi.org/10.1212/01.wnl.0000078928.20107.52
- The association of incident dementia with mortality in PD.Neurology. 2002; 59: 1708-1713https://doi.org/10.1212/01.wnl.0000036610.36834.e0
- Progressive supranuclear palsy, corticobasal degeneration, and multiple system atrophy.Continuum (N Y). 2019; 25: 919-935https://doi.org/10.1212/CON.0000000000000751
- 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
- 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
- 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
- The clinical course of advanced dementia.N Engl J Med. 2009; 361: 1529-1538https://doi.org/10.1056/NEJMoa0902234
- 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
- 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
- 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
- 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
- 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
- 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
Centers for Medicare & Medicaid Services. Local Coverage Determination (LCD) for Hospice Determining Terminal Status (L32015) http://www.cms.gov (Accessed on July 12, 2022).
- 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
- Enteral tube feeding for older people with advanced dementia.Cochrane Database Syst Rev. 2009; 2009CD007209https://doi.org/10.1002/14651858.CD007209.pub2
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- Coordinated care management for dementia in a large academic health system.Health Aff. 2014; 33: 619-625https://doi.org/10.1377/hlthaff.2013.1294
- 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
- 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
- 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
- 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
- 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
- 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
- Dementia grief: a theoretical model of a unique grief experience.Dementia. 2017; 16: 67-78https://doi.org/10.1177/1471301215581081
- Predictors of anticipatory grief in dementia caregivers.Clin Gerontol. 2010; 33: 223-236https://doi.org/10.1080/07317111003793443
- Dementia caregiver grief and bereavement: an integrative review.West J Nurs Res. 2017; 39: 825-851https://doi.org/10.1177/0193945916658881
- 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
Article info
Publication history
Footnotes
Previous Presentation: None.
Article Summary: Geriatric psychiatrists are experts in the care of patients with dementia but often have little training in end of life issues and how to approach them. This clinically focused review focuses on this important phase of dementia, how it uniquely impacts patients, caregivers, healthcare providers, and health systems, and how geriatric psychiatrists and other providers can utilize their expertise in improving the quality of life for patients and caregivers during this stage of dementia.
Identification
Copyright
ScienceDirect
Access this article on ScienceDirectLinked Article
- Commentary on “Dementia Care at the End of Life: It's Time to Embrace Palliative Care”The American Journal of Geriatric PsychiatryVol. 31Issue 4