Skip to main content Skip to main navigation menu Skip to site footer
International Journal of College of Palliative Medicine of Sri Lanka
Review
DOI: 10.54448/jcpmsl23105
Submitted: 06-08-2023
Published: 15-08-2023

End-of-life care in dementia: a literature review on the global context

MBBS, MSc in Community Medicine, MD in Community Medicine, Consultant Community Physician, Ministry of Health, Colombo, Sri Lanka
MBBS, MSc in Community Medicine, MD in Community Medicine, Specialist in Public Health, Ministry of Health, Colombo, Sri Lanka
Dementia End-of-life care

Abstract

Introduction: Management of dementia has become a major public health problem. For patients with advanced, progressive and incurable illnesses, End-of-life care (EOLC) helps living well as much as possible until death. In dementia, EOLC has important implications for the patient, family and society. Objective: It was realize a literature review attempted to explore the EOLC in dementia in the global context. Methods: The literature review was carried out in mid-2022. Google Scholar was searched for relevant articles. ‘End-of-life care’ and ‘dementia’ were used as the keywords. Forty-six articles identified as relevant, were reviewed. Findings were compiled under identified broad headings. Results: Importance of EOLC in dementia, planning EOLC, scales used in evaluating EOLC, perceptions of patients and family including preferences, priorities, quality and satisfaction on EOLC, enablers for good EOLC, barriers & challenges in EOLC and improving EOLC for dementia patients were the broad headings identified. Often family members had limited knowledge about the disease and were unprepared for decision-making. Preferences of the patients and their family carers or healthcare providers sometimes differed. Communicative, relational and organizational challenges were present during care. Communication on advance care planning improved satisfaction with care. Psycho-social aspects of care is an important aspect. Knowledge on dementia has to be improved among all parties involved. Early decisions on palliative and EOLC options should be taken. Conclusion: Care providers and family should consider patient preferences when deciding and planning EOLC. Patient views need to be obtained early in the course of the disease.

Metrics

Metrics Loading ...

References

  1. World Health Organization. Global Health Estimates: Life expectancy and healthy life expectancy. Retrieved on 25th July 2023 from https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates/ghe-lifeexpectancy-and-healthy-life-expectancy.
  2. World Health Organization. Dementia. Retrieved on 26 July 2023 from https://www.who.int /news-room/fact-sheets/detail/dementia.
  3. World Health Organization. (2017). Global action plan on the public health response to dementia 2017 – 2025. Geneva: World Health Organization.
  4. National Institute on Ageing. What Is Dementia? Symptoms, Types, and Diagnosis. Retrieved on 26 July 2023 from https://www.nia.nih.gov/health/what-is-dementia.
  5. World Health Organization and Alzeimer’s Disease International. (2012). Dementia: A Public Health Priority. Geneva: World Health Organization.
  6. World health Organization. (2022). A blueprint for dementia research. Geneva: World Health Organization.
  7. World Health Organization. (2021). Global status report on the public health response to dementia. Geneva: World Health Organization.
  8. National Institute on Ageing. End-of-Life Care for People with Dementia. Retrieved on 27 July 2023 from https://www.nia.nih.gov/health/end-life-care-people-dementia.
  9. Treloar A, Crugel M, Adamis D. Palliative and end of life care of dementia at home is feasible and rewarding - Results from the ‘Hope for Home’ study. Dementia, 2009, 8(3), 335–347.
  10. Downs M, Small N, Froggatt K. Explanatory models of dementia: links to end-of-life care. International Journal of Palliative Nursing, 2006, 12 (5), 209-213.
  11. Bartley MM, Suarez L, Shafi RMA, Baruth JM, Benarroch AJM, Lapid MI. Dementia Care at End of Life: Current Approaches. Current Psychiatry Reports, 2018, 20 (50).
  12. Volicer L. End-of-life Care for People with Dementia in Residential Care Settings. Alzheimer’s Association. 2005.
  13. Luk JkH, Chan FHW. End-of-life care for advanced dementia patients in residential care home—a Hong Kong perspective. Annals of Palliative Medicine, 2018, 7(3), 359-364.
  14. Volicer L, Hurley AC, Blasi ZV. Characteristics of dementia end-of-life care across care settings. American Journal of Hospice & Palliative Care, 2003, 20 (3), 191-200.
  15. Luth EA, Manful A, Prigerson HG, Xiang L, Reich A, Semco R, et al. Associations between dementia diagnosis and end-of-life care utilization. Journal of the American Geriatrics Society, 2022, 1-13.
  16. Raymond M, Warner A, Davies N, Nicholas N, Manthorpe J, Iliffe S. Palliative and end of life care for people with dementia: lessons for clinical commissioners. Primary Health Care Research & Development, 2014, 15, 406–417. doi:10.1017/S146342361300039X
  17. Elliot V, Morgan D, Kosteniuk J, Bayly M, Chow AF, Cammer A., et al. Palliative and end-oflife care for people living with dementia in rural areas: A scoping review. PLoS ONE, 2021, 16(1), e0244976.
  18. Michel J, Pautex S, Zekry D, Zulian G, Gold G. End-of-Life Care of Persons With Dementia. Journal of Gerontology:Medical Sciences, 2002, 57A (10), M640–M644.
  19. Goodman C, Froggatt K, Amador S, Mathie E, Mayrhofer A. End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation. BMC Palliative Care. 2015 Sep 17;14(1).
  20. Gessert CE, Forbes S, Bern-Klug M. Planning End-of-life Care for Patients with Dementia: Roles of Families and Health Professionals. Omega, 2001, 42(4), 273–291.
  21. Ashton SE, Roe B, Jack B, McClelland B. End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia – A qualitative study. Dementia, 2014, 0 (0), 1-18.
  22. Volicer L, Hurley AC, Blasi ZV. Scales for Evaluation of End-of-Life Care in Dementia. Alzheimer Disease and Associated Disorders, 2001, 15(4), 194–200.
  23. Kiely DK, Volicer L, Teno J, Jones RN, Prigerson HG, Mitchell SL. The Validity and Reliability of Scales for the Evaluation of End-of-Life Care in Advanced Dementia. Alzheimer Dis Assoc Disord, 2006, 20(3), 176–181.
  24. Kiely DK, Shaffer ML, Mitchell SL. Scales for the Evaluation of End-of-Life Care in Advanced Dementia: Sensitivity to Change. Alzheimer Dis Assoc Disord., 2012, 26(4), 358–363. doi:10.1097/WAD.0b013e318247c41b.
  25. Soest-Poortvliet MCV, Steen JYV, Zimmerman S, Cohen LW, Klapwijk MS, Bezemer M, et al. Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia. Qual Life Res. 2012, 21, 671–684.
  26. Dening KH, Jones L, Sampson EL. Preferences for end-of-life care: A nominal group study of people with dementia and their family carers. Palliative Medicine, 2012, 27(5), 409–417.
  27. Goodman C, Amador S, Elmore N, Machen I, Mathie E. Preferences and priorities for ongoing and end-of-life care: a qualitative study of older people with dementia resident in care homes. Int J Nurs Stud., 2013, 50(12),1639-47. doi: 10.1016/j.ijnurstu.2013.06.008.
  28. Poole M, Bamford C, McLellan C, Lee RP, Exley C, Hughes JC., et al. End-of-life care: A qualitative study comparing the views of people with dementia and family carers. Palliative Medicine, 2018, 32(3), 631–642.
  29. Mulqueen K, Coffey A. Preferences of residents with dementia for end of life care. Nursing Older People, 2017, 29(2), 26-30.
  30. Davies N, Rait G, Maio L, Iliffe S. Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study. Palliative Medicine. 2017, 31(8), 726-733. doi:10.1177/0269216316673552
  31. Lundin E, Godskesen T. End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes. BMC Nursing, 2021, 20(48).
  32. Toles M, Song M, Lin F, Hanson LC. Perceptions of family decision-makers of nursing home residents with advanced dementia regarding the quality of communication around end-of-life care. J Am Med Dir Assoc, 2018, 19(10), 879–883.
  33. Lee RP, Bamford C, Poole M, McLellan E, Exley C, Robinson L. End of life care for people with dementia: The views of health professionals, social care service managers and frontline staff on key requirements for good practice. PLoS ONE, 2017, 12(6), e0179355.
  34. Davies N, Maio L, Rait G, Iliffe S. Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis. Palliative Medicine, 2014, 28(7), 919–930.
  35. Engel SE, Kiely DK, Mitchell SL. Satisfaction with End-of-Life Care for Nursing Home Residents with Advanced Dementia. J Am Geriatr Soc, 2006, 54(10), 1567–1572.
  36. McCarron M, McCallion P, Fahey-McCarthy E, Connaire, K. Staff Perceptions of Essential Prerequisites Underpinning End-of-Life Care for Persons With Intellectual Disability and Advanced Dementia. Journal of Policy and Practice in Intellectual Disabilities, 2010, 7(2), 143– 152.
  37. Lawrence V, Samsi, Murray J, Harari D, Banerjee S. Dying well with dementia: qualitative examination of end-of-life care. The British Journal of Psychiatry, 2011, 199, 417–422.
  38. Lee RP, Bamford C, Exley C, Robinson L. Expert views on the factors enabling good end of life care for people with dementia: a qualitative study. BMC Palliative Care, 2015, 14(32).
  39. Bamford C, Lee R, McLellan E, Poole M, Harrison-Dening K, Hughes J, 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(302).
  40. Stewart-Archer LA, Afghani A, Toye CM, Gomez FA. Dialogue on Ideal End-of-Life Care for Those With Dementia. American Journal of Hospice & Palliative Medicine, 2015, 32(6), 620630.
  41. Gusmano M. End-of-life care for patients with dementia in the United States: institutional realities. Health Economics, Policy and Law, 2012, 7, 485–498. doi:10.1017/S1744133112000266.
  42. Lamahewa K, Mathew R, Iliffe S, Wilcock J, Manthorpe J, Sampson EL, et al. A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expectations, 2018, 21, 118–127.
  43. Sachs GA, Shega JW, Cox-Hayley D. Barriers to Excellent End-of-life Care for Patients with Dementia. J Gen Intern Med, 2004, 19, 1057–1063.
  44. Kumar S, Kuriakose JR. End-of-life care issues in advanced dementia. Mental Health in Family Medicine, 2013, 10, 129–32.
  45. Dening KH, Greenish W, Jones L, Mandal U, Sampson EL. Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study. BMJ Supportive & Palliative Care. 2012. doi:10.1136/bmjspcare-2011-000178.
  46. Armstrong MJ, Alliance S. Corsentino P, Maixner SM, Paulson HL, Taylor A. CaregiverReported Barriers to Quality End-of-Life Care in Dementia with Lewy Bodies: A Qualitative Analysis. Am J Hosp Palliat Care, 2020, 37(9), 728–737. doi:10.1177/1049909119897241.
  47. Thuné-Boyle ICV, Sampson EL, Jones L, King M, Lee DR, Blanchard MR. Challenges to improving end of life care of people with advanced dementia in the UK. Dementia, 2020, 9(2), 259-284. doi:10.1177/1471301209354026.
  48. Lundin E, Godskesen TE. End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes. BMC Nursing, 2021, 20 (48). https://doi.org/10.1186/s12912-021-00566-7
  49. Blasi ZV, Hurley AC, Volicer L. End-of-Life Care in Dementia: A Review of Problems, Prospects, and Solutions in Practice. Journal of the American Medical Directors Association. 2002, DOI: 10.1016/S1525-8610(04)70414-4
  50. Kupeli N, Sampson EL, Leavey G, Harrington J, Davis S, Candy B, et al. Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: family carers perspective. BMC Palliative Care, 2019, 18 (87). https://doi.org/10.1186/s12904-019-0467-9
  51. Sampson EL, Burns A, Richards M. Improving end-of-life care for people with dementia. The British Journal of Psychiatry, 2011, 199, 357–359.
  52. Saini G, Sampson EL, Davis S, Kupeli N, Harrington J, Leavey G, et al. An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes. BMC Palliative Care, 2016, 15 (55). DOI 10.1186/s12904-016-0127-2
  53. Elliot V, Morgan D, Kosteniuk J, Bayly M, Chow AF, Cammer A, et al. Palliative and end-oflife care for people living with dementia in rural areas: A scoping review. PLoS ONE, 2021, 16(1), e0244976. https://doi.org/10.1371/ journal.pone.0244976
  54. Kaasalainen S, Mccleary L, Vellani S, Pereira J. Improving End-of-Life Care for People with Dementia in LTC Homes During the COVID-19 Pandemic and Beyond. Canadian Geriatrics Journal, 2021, 24 (3), 164-169.
  55. Gove D, Sparr S, Dos Santos Bernardo AMC, Cosgrave MP, Jansen S, Martensson B., et al. Recommendations on end-of-life care for people with dementia. J Nutr Health Aging, 2010, 14, 136–139. https://doi.org/10.1007/s12603-009-0229-0
  56. Jennings LA, Turner M, Keebler C, Burton CH, Romero T, Wenger NS, et al. The Effect of a Comprehensive Dementia Care Management Program on End-of-Life Care. Journal of the American Geriatrics Society, 2019, 67(3), 443-448.

How to Cite

Wijegoonewardene, N., & Vidanapathirana, J. (2023). End-of-life care in dementia: a literature review on the global context. International Journal of College of Palliative Medicine of Sri Lanka, 1(1). https://doi.org/10.54448/jcpmsl23105