Frailty, Resilience, and Palliative Care Considerations for those Living with Dementia

  • Maureen C. Nash


Dementia is a chronic life-limiting illness. It has become one of the most dreaded diagnoses in the western world and has even been referred to as the “D word.” Care for those living with dementia has evolved to become more person-centered and person-directed. Frailty is a concept used to describe older adults at risk of multisystem decline. At times frailty has even been conceptualized as the loss of resilience. Resilience is not the opposite of frailty though, and older adults with dementia can be supported to become more resilient even as their illness advances. Support of resilience through care planning represents true person-centered care. Person-centered care is extremely challenging if conversations regarding the goals of care have not occurred. Palliative care focused on alleviating suffering should be considered and implemented in the care plan at the diagnosis of all life-limiting disease. Advanced dementia is a terminal illness and is a time to consider shifting the focus of care to decreasing suffering. This allows support for the person living with dementia and those who care for them.


Dementia Palliative care Frailty Resilience Goals of care Advanced directives Advanced dementia Life-limiting disease Neurocognitive Disorder 


  1. 1.
    DeVita VT, Chu E. A history of cancer chmeotherapy. Cancer Res. 2008;68(21):8643–53.CrossRefGoogle Scholar
  2. 2.
    The National Cancer Institute, Mission Statement. Last Accessed 25 Nov 2018.
  3. 3.
    Toon E. “Cancer as the general population knows it”: knowledge, fear, and lay education in 1950s Britain. Bull Hist Med. 2007;81(1):116–38.CrossRefGoogle Scholar
  4. 4.
    “Cancer as the general population knows it”: knowledge, fear, and lay education in 1950s Britain. Bull Hist Med. 2007;81(1):116–38.Google Scholar
  5. 5.
    Gilbertsen VA, Wangensteen OH. Should the doctor tell the patient that the disease is cancer? CA Cancer J Clin. 1962;12:82–6.CrossRefGoogle Scholar
  6. 6.
    Alzheimer’s Association. 2015 Alzheimer’s disease facts and figures. Alzheimers Dement. 2015;11(3):332–84.CrossRefGoogle Scholar
  7. 7.
    Nash MC, Foidel S, Shindler M. Practical assessment and management of behavior disturbance in patients with moderate to severe dementia. Course at the annual meeting of the American Psychiatric Association, Atlanta, 2016.Google Scholar
  8. 8.
    Troxel D, Bell V. The best friends staff: building a culture of care in Alzheimer’s programs. Baltimore: Heath Professionals Press; 2001.Google Scholar
  9. 9.
    Thomas WH. The Eden alternative: nature, hope and nursing homes. Columbia: University of Missouri Press; 1994.Google Scholar
  10. 10.
    The Eden Alternative: Mission, Vision and values.
  11. 11.
    Power GA. Dementia beyond disease: enhancing wellbeing. Baltimore: Health Professions Press; 2014.Google Scholar
  12. 12.
    Hyden L, Lindemann H, Brockmeier J. Beyond loss: dementia, identity and personhood. Oxford: Oxford University Press; 2014.CrossRefGoogle Scholar
  13. 13.
    Collard R, Boter H, Schoevers R, Oude Voshaar R. Prevalence of frailty in community-dwelling older persons: a systematic review. J Am Geriatr Soc. 2012;60:1487–92.CrossRefGoogle Scholar
  14. 14.
    Clegg A, Young J, Iliffe S, Rikkert MO, Rockwood K. Frailty in elderly people. Lancet. 2013;381(9868):752–62.CrossRefGoogle Scholar
  15. 15.
    Ishii K. PET approaches for diagnosis of dementia. Am J Neuroradiol. 2014;35(11):2030–8. Scholar
  16. 16.
    Kulmala J, Nykanen I, Manty M, Hartikainen S. Association between frailty and dementia: a population-based study. Gerontology. 2014;60(1):16–21.CrossRefGoogle Scholar
  17. 17.
    Tazkarji B, Lam R, Lee S, Meiyappan S. Approach to preventive care in the elderly. Can Fam Physician. 2016;62(9):717–21.PubMedPubMedCentralGoogle Scholar
  18. 18.
    Jeste DV, Savla GN, Thompson WK, Vahia IV, Glorioso DK, Martin AS, Palmer BW, Rock D, Golshan S, Kraemer HC, Depp CA. Association between older age and more successful aging: critical role of resilience and depression. Am J Psychiatry. 2013;170:188–96.CrossRefGoogle Scholar
  19. 19.
    Mortimer PM, Ward L, Winefield H. Successful ageing by whose definition? Views of older, spiritually affiliated women. Australas J Ageing. 2008;27(4):200–4. Scholar
  20. 20.
    Murray SA, Kendall M, Boyd B, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–11.CrossRefGoogle Scholar
  21. 21.
    CaringKind, The Heart of Alzheimer’s Caregiving (2016). Palliative care for people with dementia: why comfort matters in long-term care. Accessed 2/4/2019.
  22. 22.
    Institute of Medicine. Improving quality and honoring individual preferences near the end of life. Washington, DC: National Academy Press; 2015.Google Scholar
  23. 23.
    Covinsky KE, Palmer RM, Fortinsky RH, et al. Loss of independence in activities of daily living in older adults hospitalized with medical illnesses: increased vulnerability with age. JAGS. 2003;51:451–8.CrossRefGoogle Scholar
  24. 24.
    Pedone C, Ercolani S, Catani M, Maggio D, Ruggiero C, Quartesan R, Senin U, Mecocci P, Cherubini A. Elderly patients with cognitive impairment have a high risk for functional decline during hospitalization: the GIFA Study. J Gerontol. 2005;60:1576–80.CrossRefGoogle Scholar
  25. 25.
    Stewart JT, Schultz SK. Palliative care for dementia. Psychiatr Clin North Am. 2018;41:141–51.CrossRefGoogle Scholar
  26. 26.
    Alzheimer’s Association. 2018. 2018 Facts and figures.
  27. 27.
    Sachs GA, Shega JW, Cox-Hayley D. Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med. 2004;19(10):1057–63.CrossRefGoogle Scholar
  28. 28.
    Peisah C, et al. Silent and suffering: a pilot study exploring gaps between theory and practice in pain management for people with severe dementia in residential aged care facilities. Clin Interv Aging. 2014;9:1767–74.CrossRefGoogle Scholar
  29. 29.
    Mitchell SL, Kiely DK, Jones RN, Prigerson H, Volicer L, Teno JM. Advanced dementia research in the nursing home: the CASCADE study. Alzheimer Dis Assoc Disord. 2006;20(3):166–75.CrossRefGoogle Scholar
  30. 30.
    Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529–38. Scholar
  31. 31.
    Mitchell SL, Kiely DK, Hamel MB, Park PS, Morris JN, Fries BE. Estimating prognosis for nursing home residents with advanced dementia. JAMA. 2004;291:2734–40.CrossRefGoogle Scholar
  32. 32.
    Aminoff BZ. Mini suffering state examination. Gerontologie und Geriatrie. 1999;32(2):238.Google Scholar
  33. 33.
    Aminoff, et al. Arch Gerontol Geriatr. 2004;38:123–30.CrossRefGoogle Scholar
  34. 34.
    Aminoff BZ, Adunsky A. Their last 6 months: suffering & survival of end stage dementia pts. Age Aging. 2006:597–601.Google Scholar
  35. 35.
    van Soest-Poortvliet MC, et al. Selecting the best instruments to measure quality of end-of-life care and quality of dying in long term care. J Am Med Dir Assoc. 2013;14(3):179–86.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Maureen C. Nash
    • 1
    • 2
  1. 1.School of MedicineOregon Health and Sciences UniversityPortlandUSA
  2. 2.Providence ElderPlace OregonPortlandUSA

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