Susan L. Mitchell, MD, MPH; Betty S. Black, PhD; Mary Ersek, RN, PhD; Laura C. Hanson, MD, MPH; Susan C. Miller, PhD; Greg A. Sachs, MD; Joan M. Teno, MD, MS; R. Sean Morrison, MD
Dementia is a leading cause of death in the United States. This article outlines the current understanding of advanced dementia and identifies research priorities for the next decade. Research over the past 25 years has largely focused on describing the experience of patients with advanced dementia. This work has delineated abundant opportunities for improvement, including greater recognition of advanced dementia as a terminal illness, better treatment of distressing symptoms, increased access to hospice and palliative care services, and less use of costly and aggressive treatments that may be of limited clinical benefit. Addressing those opportunities must be the overarching objective for the field in the coming decade. Priority areas include designing and testing interventions that promote high-quality, goal-directed care; health policy research to identify strategies that incentivize cost-effective and evidence-based care; implementation studies of promising interventions and policies; and further development of disease-specific outcome measures. There is great need and opportunity to improve outcomes, contain expenditures, reduce disparities, and better coordinate care for the millions of persons in the United States who have advanced dementia.
Published with permission of Lorraine O'Rourke.
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Carlos, Fernandez-Viadero, MD PhD, Magadalena Jimenez-Sanz, RN; Rosario Verduga, MD, PhD; Damaso Crespo MD, PhD. From Nutrition Unit HUMV, Psycobiology UNED, Anatomy Cell Biology, University of Cantabria. SPAIN
Parayas Psychiatric Hospital. Government of Cantabria. SPAIN
January 23, 2012
ADVANCED DEMENTIA, CARE, COMFORT AND... ANY MORE?
We agree with Mitchell et al.(1) about the need to focus research priorities in advanced dementia. However the view and approach to elders with advanced dementia may differ too much between physicians, health care systems, countries, and cultures. We usually refer these patients as terminal ones, but the natural history of dementia after rising FAST 7 stage (2) differs too much among patients. Furthermore it is not rare that elders under this condition (the only skills remained are walking capacity and some sparse words in their language) the mean survival time may exceed four years with adequate care (3).If so, care becomes the main problem. What is the adequate care? adequate manage of pain?... let that patient die by respiratory infections?... do not feed under any circumstance? We may admit some of these statements. We agree against nasoenteric tube feeding, and prefer oral intake as the better way to feed these patients. But the reality is a different matter, and sometimes other procedures, such as gastrostomy, are not too bad as usually stated and with this procedure physical restrains are unnecessary in those patients (4). The idea that, only care and comfort are the best for these patients would be desirable if these patients have only one or two months of expected life. But surprisingly Mitchell et al.1 expressed "accurately survival in advanced dementia has unfortunately proved elusive". If the survival is poorly prognosticated, why those patients are considered as not susceptible for medical treatment, other than basic care or comfort? Mittchell et al ask for care for comfort in these patients and support this statement upon two randomized controlled trials that had adequate methodology, but both studies only dealt with decision making tools in this type of patients. Advanced dementia is a serious event for health system, professionals, relatives, and above all for the patient. We have to be very cautious about some asseverations on this topic. We strongly agree that patient's comfort has to be the main aim to achieve, but is an untreated patient with pneumonia, fever and eating problems comfortable? To affirm that all patients with advanced dementia have a terminal illness is a tale's question: "Sentence first--verdict afterwards". It was written: "Keep young and beautiful if you want to be loved" (5).
1.- Mitchell SL, Black BS, Ersek M, Hanson LC, Miller SC, Sachs GA, Teno JM, Morrison RS. Advanced Dementia: State of the Art and Priorities for the Next Decade. Ann Intern Med. 2012;156: 45-51.
2.- Reisberg B. Functional assessment staging (FAST). Psychopharmacol Bull.1988; 24:653-9.
3.- Fernandez-Viadero C, Verduga R, Crespo D. Biomarkers of ageing. In "Biogerontology" D?maso Crespo Santiago ed. University Books. Cantabria University. Santander 2006. 233-262 (in spanish).
4.- Fern?ndez-Viadero C, Pe?a Sarabia N, Jim?nez Sainz M, Verduga V?lez R, Crespo Santiago D. Percutaneous endoscopic gastrotomy: better than nasoenteric tube? J Am Geriatr Soc. 2002; 50:199-200.
5.- Ebrahim S. The medicalisation of old age, should be encouraged. BMJ. 2002; 324:861-3.
Mitchell SL, Black BS, Ersek M, et al. Advanced Dementia: State of the Art and Priorities for the Next Decade. Ann Intern Med. 2012;156:45–51. doi: 10.7326/0003-4819-156-1-201201030-00008
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Published: Ann Intern Med. 2012;156(1_Part_1):45-51.
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