Frailty, Resilience, and Palliative Care Considerations for those Living with Dementia
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.
KeywordsDementia Palliative care Frailty Resilience Goals of care Advanced directives Advanced dementia Life-limiting disease Neurocognitive Disorder
- 2.The National Cancer Institute, Mission Statement. https://www.nih.gov/about-nih/what-we-do/nih-almanac/national-cancer-institute-nci. Last Accessed 25 Nov 2018.
- 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
- 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.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.Thomas WH. The Eden alternative: nature, hope and nursing homes. Columbia: University of Missouri Press; 1994.Google Scholar
- 10.The Eden Alternative: Mission, Vision and values. http://www.edenalt.org/about-the-eden-alternative/mission-vision-values/.
- 11.Power GA. Dementia beyond disease: enhancing wellbeing. Baltimore: Health Professions Press; 2014.Google Scholar
- 21.CaringKind, The Heart of Alzheimer’s Caregiving (2016). Palliative care for people with dementia: why comfort matters in long-term care. https://www.caringkindnyc.org/palliativecare/. Accessed 2/4/2019.
- 22.Institute of Medicine. Improving quality and honoring individual preferences near the end of life. Washington, DC: National Academy Press; 2015.Google Scholar
- 26.Alzheimer’s Association. 2018. 2018 Facts and figures. https://www.alz.org/alzheimers-dementia/facts-figures.
- 32.Aminoff BZ. Mini suffering state examination. Gerontologie und Geriatrie. 1999;32(2):238.Google Scholar
- 34.Aminoff BZ, Adunsky A. Their last 6 months: suffering & survival of end stage dementia pts. Age Aging. 2006:597–601.Google Scholar