Advanced Dementia: State of the Art and Priorities for the Next Decade

Susan L. Mitchell; Betty S. Black; Mary Ersek; Laura C. Hanson; Susan C. Miller; Greg A. Sachs; Joan M. Teno; R. Sean Morrison

doi:10.7326/0003-4819-156-1-201201030-00008

Medicine and Public Policy |3 January 2012

Advanced Dementia: State of the Art and Priorities for the Next Decade Free

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

Article, Author, and Disclosure Information

Abstract

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.

More than 5 million Americans have Alzheimer disease, and this number is expected to reach 13 million by 2050 ⁸ (⁸). In 2009, Alzheimer disease was the sixth-leading cause of death in the United States, a ranking that has steadily risen during the past decade ⁸. Aggregate health care expenditures for dementia are projected to exceed $183 billion in 2011 and reach $1.1 trillion by 2050 ⁸. Expenditures are highest in late-stage disease, largely because of Medicaid spending for care at nursing homes ⁸, where approximately 70% of these patients die ⁸. Altogether, the societal burden of advanced dementia is substantial and increasing.

Figure.

A patient with dementia.

Published with permission of Lorraine O'Rourke.

Advanced dementia has been relatively underrecognized as a terminal illness ⁸^,8^,8. Initiatives aimed at improving the experience of patients dying of this disease have lagged behind those of more commonly recognized life-threatening conditions, such as cancer. Advanced dementia emerged as a topic in the scientific literature approximately 25 years ago ⁸. Since then, research devoted to this field has increased ⁸. The objectives of this article are to outline our current understanding of advanced dementia and, with that foundation, identify the most pressing research priorities for the next decade.

Current Understanding of Advanced Dementia

Clinical Course

The last year of life in persons with advanced dementia differs from that of persons with other common causes of death, in that it is characterized by a prolonged trajectory of severe disability ⁸. The Global Deterioration Scale ⁸ is a validated and reliable instrument that describes the clinical progression of dementia (⁸). The scale ranges from stages 1 to 7, with higher scores indicating more severe dementia.

Table 1.

Stages of Dementia Described by the Global Deterioration Scale

Table 1.

Stage 7 of the Global Deterioration Scale provides a useful description of the features of advanced dementia for clinical and research purposes: profound memory deficits (inability to recognize family members), speech limited to fewer than 5 words, total functional dependence, incontinence, and inability to ambulate. The CASCADE (Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life) study used this definition to describe the clinical course of 323 nursing home residents with advanced dementia ⁸. Over 18 months, 55% of the cohort died, 41% had pneumonia, 51% had a febrile episode, and 86% developed an eating problem. Other major acute illnesses (for example, hip fracture and myocardial infarction) were rare.

The CASCADE study thus confirmed that advanced dementia is characterized by a high mortality rate and the onset of infectious episodes and eating problems. Moreover, it demonstrated that most patients with advanced dementia die of this disease and its expected complications, not other acute illnesses.

Prognosis

Prognostication has important implications for clinical decision making and for accessing Medicare hospice benefits, which requires an estimated survival time of less than 6 months ⁸^,8^,8. The development of risk models for mortality that accurately estimate survival in advanced dementia has unfortunately proved elusive ⁸^,8^,8^,8^,8^,8. In a prospective validation study ⁸, the 12-item Advanced Dementia Prognostic Tool predicted 6-month survival with only modest accuracy (area under the receiver-operating characteristic curve, 0.67); however, these findings were better than those of current Medicare hospice eligibility guidelines (area under the receiver-operating characteristic curve, 0.55) ⁸. The difficulty of estimating 6-month survival in advanced dementia suggests that access to palliative care for these patients should be guided not by their prognosis but rather by their preference to focus care on maximizing comfort and quality of life.

Sources of Distress

Patients with advanced dementia commonly experience distressing symptoms that are amenable to treatment ⁸^,8^,8^,8^,8^,8^,8^,8^,8^,8. In the CASCADE study, the proportion of nursing home residents with advanced dementia who experienced pain and dyspnea increased as death approached, in a pattern similar to that of patients with cancer who are dying ⁸. Assessing patients' symptom distress is difficult because of their loss of language skills, but advanced dementia-specific instruments have been developed that quantify symptoms on the basis of the observations of caregivers. Several measures have gained greater endorsement because of their favorable psychometric properties and increasing collective experience among investigators ⁸^,8^,8^,8.

Management of Common Complications

Treatment decisions in advanced dementia should be guided by patients' care preferences as specified in advance directives or as perceived by their proxies. Goals of care must be used to guide initiation of new treatments, as well as the withdrawal of ongoing treatments. Most proxies state that comfort is the primary goal of care ⁸^,8, although patients with advanced dementia commonly receive treatments that are inconsistent with this goal ⁸^,8^,8^,8^,8^,8^,8^,8. Possible reasons underlying this disconnect include such factors as inadequate advance care planning ⁸^,8^,8, the challenges of prognostication ⁸^,8^,8^,8^,8^,8, providers giving misinformed and inconsistent counseling to proxies ⁸^,8, cultural influences ⁸^,8^,8^,8, limited access to high-quality palliative care that is tailored to the unique needs of patients with dementia ⁸^,8, and misaligned fiscal incentives in a fee-for-service health care system ⁸^,8.

Treatment choices regarding eating problems and infections are the most common decisions that proxies confront ⁸. A substantial body of research exists on managing feeding problems in advanced dementia (⁸^,8⁸^,8^,8^,8^,8^,8^,8^,8^,8). This topic has served as the paradigm for approaching dementia as a terminal illness with respect to examination of outcomes, decision making, and health care utilization.

Treatment options for feeding problems include continued assisted oral feeding (when possible) or tube feeding. In the United States, approximately one third of nursing home residents with advanced dementia who develop feeding problems are tube-fed ⁸. However, observational studies have consistently failed to demonstrate any clinical benefits of this intervention in this population ⁸^,8^,8. This evidence, together with an appreciation of eating problems as part of the natural history of advanced dementia, has led experts to advocate against the use of tube feeding in this condition ⁸^,8^,8.

Decision making for infections involves whether to administer antimicrobials or to use supportive measures only. Antimicrobial use is extensive in advanced dementia ⁸^,8^,8^,8^,8 and increases as death approaches ⁸. Up to 40% of patients with advanced dementia receive antimicrobials in the last 2 weeks of life ⁸. The extent to which antimicrobials meaningfully extend life or improve comfort in these patients, for whom infections are often a terminal event, remains unclear ⁸^,8^,8^,8^,8. Nursing home residents with advanced dementia are 3 times more likely than other residents to be colonized with antimicrobial-resistant bacteria ⁸. Altogether, the widespread use of antimicrobials in advanced dementia raises concerns not only from the perspective of individual benefits and burdens near the end of life but also from a public health standpoint with respect to the emergence of antimicrobial-resistant bacteria.

Health Care Utilization

Approximately 16% of persons in the United States who die of dementia do so in hospitals ⁸. Nursing home residents with advanced dementia experience an average of 1.6 hospital transfers in the last 90 days of life ⁸, and residents living in regions with higher transfer rates experience worse end-of-life outcomes ⁸. Hospitalizations can be traumatic for these frail patients ⁸, as they receive care from unfamiliar providers and undergo uncomfortable tests and interventions ⁸^,8^,8.

In the CASCADE study, hospitalizations accounted for 30% of Medicare expenditures; care at skilled nursing facilities after hospitalization accounted for an additional 10% ⁸. Research suggests that most conditions precipitating hospitalization in advanced dementia (for example, pneumonia) can be treated with the same efficacy in the community or nursing home setting ⁸^,8^,8^,8. For most patients for whom comfort is the priority ⁸^,8, hospitalization is seldom consistent with this goal, albeit with rare exceptions (for example, a hip fracture).

Hospice care is a beneficial ⁸^,8^,8^,8 yet underutilized service in advanced dementia ⁸. Patients dying with dementia who received hospice care have better symptom management ⁸^,8, fewer terminal hospitalizations ⁸, and greater family satisfaction with care than those not receiving hospice care ⁸^,8. Trends indicate that hospice enrollment of patients with dementia is increasing; however, only 11% of hospice recipients in 2009 were reported to have a primary diagnosis of dementia, whereas 40% had cancer ⁸. Hospice professionals cite prognostication as the main hindrance to enrolling patients with dementia ⁸.

There are profound disparities in advanced dementia care. Nonwhite race is the most consistent risk factor associated with outcomes considered markers of poor-quality end-of-life care, including increased use of tube feeding ⁸, terminal hospitalizations ⁸, and lack of advance directives ⁸^,8. However, even after patient characteristics are controlled for, these outcomes vary dramatically across the United States in a strikingly consistent pattern, with a general propensity for worse quality of care in the southeast ⁸^,8^,8^,8^,8^,8^,8. The reasons for these disparities remain unclear, but they underscore that care of advanced dementia care is driven by a complex interplay of individual preferences, cultural influences, regional market factors, facility characteristics, local practice patterns, and health care policies.

Strategies to Improve Care

Our understanding of successful strategies to improve care in advanced dementia is largely based on observational data. Modifiable factors most consistently shown to be associated with better palliative care outcomes for patients with advanced dementia in cohort studies include the presence of advance directives (for example, do-not-hospitalize orders) ⁸^,8^,8^,8^,8, better counseling of patients' health care proxies ⁸^,8, residence in a special care dementia unit ⁸^,8, use of hospice ⁸^,8^,8^,8^,8, and the presence of nurse practitioners on-site in a nursing home ⁸^,8.

There are few randomized, controlled trials (RCTs) of interventions in advanced dementia, of which only 2 had adequate methodological rigor to warrant comment ⁸^,8. Both studies evaluated decision support tools. In one study, healthy elderly persons who were randomly assigned to watch a video showing a patient with advanced dementia were more likely to prefer comfort care (vs. life prolongation) than were persons who were randomly assigned to listen to a verbal description of advanced dementia ⁸. The second study was a cluster RCT in 24 nursing homes of a decision aid to help proxies of residents with advanced dementia make treatment decisions for feeding problems ⁸. Proxies in the intervention facilities (vs. the control facilities) had reduced decisional conflict, increased knowledge, and better communication with providers about feeding decisions.

Research Priorities

To date, research has largely focused on describing the experience of patients with advanced dementia and the care they receive. This work has delineated abundant opportunities for improvement. Addressing those opportunities must be the overarching objective for advanced dementia research in the coming decade. ⁸ shows the research priorities needed to achieve that objective, categorized by discipline; lists specific goals within each discipline; and provides examples of research initiatives for each goal.

Table 2.

Priorities for Advanced Dementia Research Over the Next Decade

Table 2.

Designing and testing interventions that promote high-quality, goal-directed care across health care settings will be a cornerstone for future research in advanced dementia. An example of such a study would be an RCT of an intervention to avoid unwanted hospitalizations of nursing home residents with advanced dementia whose goals of care are primarily comfort. Interventions that reduce disparities in the quality of care provided to patients with advanced dementia who are of various ethnic and racial backgrounds are also needed. Clinical trials in advanced dementia, while essential, will not be straightforward to conduct; interventions are often complex, settings are not well-suited to research (for example, nursing homes), and outcomes are challenging to define and measure. Nonetheless, the success of prior RCTs that faced similar challenges demonstrates that these hurdles can be overcome ⁸^,8^,8^,8.

Health policy research is essential to move advanced dementia care forward. A primary goal of this research should be to identify policies that incentivize cost-effective and evidence-based care without comprising the quality of palliative care provided to these vulnerable patients ⁸. Expanding access to the Medicare hospice benefit and broad-based palliative care programs is a key part of the equation. For example, prior work clearly shows that the 6-month hospice eligibility guidelines are problematic ⁸. Thus, research that explores novel approaches to enroll dementia patients into hospice is warranted. Comparative effectiveness research that evaluates different strategies to treat common complications (such as pneumonia) would also inform policy.

The anticipated complexity of clinical interventions and policies to improve advanced dementia care necessitate the inclusion of implementation science as a key priority to ensure that they can be effectively translated into practice. The Patient Protection and Affordable Care Act presents a timely opportunity for demonstration projects that evaluate alternative financial structures to reduce unwarranted and unwanted hospitalizations for nursing home residents with advanced dementia, such as bundled payments or capitated programs, similar to the Program of All Inclusive Care for the Elderly (which integrates Medicare and Medicaid financing for frail elderly patients) ⁸.

Although progress has been made in outcomes measurement, many gaps remain. For example, there is no measure to quantify the stress that families of nursing home residents with advanced dementia experience. A disease-specific utility-based measure that takes into account health-related quality of life must be developed to conduct comparative and cost effectiveness research. Finally, greater delineation of meaningful effect sizes of existing measures is necessary to plan trials that will use these instruments as outcomes ⁸^,8^,8^,8.

The research priorities set forth in this report align with those of the National Alzheimer's Project Act, which was signed into law in January 2011. This projects calls for the expansion and coordination of research and health services delivery across federal agencies for Alzheimer disease and related dementias in order to achieve 2 top priorities: improve the health outcomes of patients with dementia and reduce the financial burden of the disease at an individual and societal level. The act further prioritizes the need to reduce disparities and improve the coordination of dementia care, and it stresses the need for initiatives aimed at prevention and early detection of dementia. However, if the top priorities of the act are to be met, significant focus must be placed on the millions of persons in the United States in the advanced stage of the disease, for whom there is great need and opportunity to improve patient outcomes, contain health care expenditures, reduce disparities, and better coordinate care.

Accomplishing these priorities will depend on several factors, including research funding. To date, roughly 63% of advanced dementia research has been supported by grants from the National Institutes of Health. However, with the National Institutes of Health budget at unprecedented lows, greater support from other federal agencies and philanthropic sources will be critical. In addition, the number of senior researchers dedicated to this field is small. Ongoing work will require close collaboration and intellectual and financial investment into the training of young investigators. Dissemination of key research findings through the education of policy-makers, health care providers, and the public will be an essential step in translating this work into better advanced dementia care. Finally, the millions of Americans with dementia and their families are perhaps the most important stakeholders in this research. Ultimately, their advocacy and enfranchisement may play the greatest role in driving advanced dementia research forward through the next decade.

References

Hebert
LE
,
Scherr
PA
,
Bienias
JL
,
Bennett
DA
,
Evans
DA
.
Alzheimer disease in the US population: prevalence estimates using the 2000 census.
Arch Neurol
2003
60
1119
22
PubMed
CrossRef
National Center for Health Statistics. National Vital Statistics Reports. 2011. Accessed at www.cdc.gov/nchs/data/nvsr/nvsr59/nvsr59_04.pdf on 6 July 2011.
Alzheimer's Association. 2011 Alzheimer's disease facts and figures. Accessed at www.alz.org/alzheimers_disease_facts_and_figures.asp on 2 August 2011.
Zhu
CW
,
Scarmeas
N
,
Torgan
R
,
Albert
M
,
Brandt
J
,
Blacker
D
. et al.
Clinical features associated with costs in early AD: baseline data from the Predictors Study.
Neurology
2006
66
1021
8
PubMed
Mitchell
SL
,
Teno
JM
,
Miller
SC
,
Mor
V
.
A national study of the location of death for older persons with dementia.
J Am Geriatr Soc
2005
53
299
305
PubMed
Mitchell
SL
,
Kiely
DK
,
Hamel
MB
.
Dying with advanced dementia in the nursing home.
Arch Intern Med
2004
164
321
6
PubMed
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
63
PubMed
Di Giulio
P
,
Toscani
F
,
Villani
D
,
Brunelli
C
,
Gentile
S
,
Spadin
P
.
Dying with advanced dementia in long-term care geriatric institutions: a retrospective study.
J Palliat Med
2008
11
1023
8
PubMed
Volicer
L
,
Rheaume
Y
,
Brown
J
,
Fabiszewski
K
,
Brady
R
.
Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type.
JAMA
1986
256
2210
3
PubMed
van der Steen
JT
.
Dying with dementia: what we know after more than a decade of research.
J Alzheimers Dis
2010
22
37
55
PubMed
Gill
TM
,
Gahbauer
EA
,
Han
L
,
Allore
HG
.
Trajectories of disability in the last year of life.
N Engl J Med
2010
362
1173
80
PubMed
Reisberg
B
,
Ferris
SH
,
de Leon
MJ
,
Crook
T
.
The Global Deterioration Scale for assessment of primary degenerative dementia.
Am J Psychiatry
1982
139
1136
9
PubMed
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
1529
38
PubMed
.
Medical guidelines for determining prognosis in selected non-cancer diseases. The National Hospice Organization.
Hosp J
1996
11
47
63
PubMed
Weeks
JC
,
Cook
EF
,
O'Day
SJ
,
Peterson
LM
,
Wenger
N
,
Reding
D
. et al.
Relationship between cancer patients' predictions of prognosis and their treatment preferences.
JAMA
1998
279
1709
14
PubMed
Mitchell
SL
,
Miller
SC
,
Teno
JM
,
Kiely
DK
,
Davis
RB
,
Shaffer
ML
.
Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines.
JAMA
2010
304
1929
35
PubMed
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
PubMed
Schonwetter
RS
,
Han
B
,
Small
BJ
,
Martin
B
,
Tope
K
,
Haley
WE
.
Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines.
Am J Hosp Palliat Care
2003
20
105
13
PubMed
Volicer
BJ
,
Hurley
A
,
Fabiszewski
KJ
,
Montgomery
P
,
Volicer
L
.
Predicting short-term survival for patients with advanced Alzheimer's disease.
J Am Geriatr Soc
1993
41
535
40
PubMed
Marsh
GW
,
Prochoda
KP
,
Pritchett
E
,
Vojir
CP
.
Predicting hospice appropriateness for patients with dementia of the Alzheimer's type.
Appl Nurs Res
2000
13
187
96
PubMed
van der Steen
JT
,
Mitchell
SL
,
Frijters
DH
,
Kruse
RL
,
Ribbe
MW
.
Prediction of 6-month mortality in nursing home residents with advanced dementia: validity of a risk score.
J Am Med Dir Assoc
2007
8
464
8
PubMed
McCarthy
M
,
Addington-Hall
J
,
Altmann
D
.
The experience of dying with dementia: a retrospective study.
Int J Geriatr Psychiatry
1997
12
404
9
PubMed
Black
BS
,
Finucane
T
,
Baker
A
,
Loreck
D
,
Blass
D
,
Fogarty
L
. et al.
Health problems and correlates of pain in nursing home residents with advanced dementia.
Alzheimer Dis Assoc Disord
2006
20
283
90
PubMed
Aminoff
BZ
,
Adunsky
A
.
Dying dementia patients: too much suffering, too little palliation.
Am J Hosp Palliat Care
2005
22
344
8
PubMed
Aminoff
BZ
,
Adunsky
A
.
Their last 6 months: suffering and survival of end-stage dementia patients.
Age Ageing
2006
35
597
601
PubMed
Miller
SC
,
Mor
V
,
Wu
N
,
Gozalo
P
,
Lapane
K
.
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
15
PubMed
Shega
JW
,
Hougham
GW
,
Stocking
CB
,
Cox-Hayley
D
,
Sachs
GA
.
Pain in community-dwelling persons with dementia: frequency, intensity, and congruence between patient and caregiver report.
J Pain Symptom Manage
2004
28
585
92
PubMed
Shega
JW
,
Hougham
GW
,
Stocking
CB
,
Cox-Hayley
D
,
Sachs
GA
.
Patients dying with dementia: experience at the end of life and impact of hospice care.
J Pain Symptom Manage
2008
35
499
507
PubMed
Shega
JW
,
Hougham
GW
,
Stocking
CB
,
Cox-Hayley
D
,
Sachs
GA
.
Management of noncancer pain in community-dwelling persons with dementia.
J Am Geriatr Soc
2006
54
1892
7
PubMed
McCarthy
EP
,
Phillips
RS
,
Zhong
Z
,
Drews
RE
,
Lynn
J
.
Dying with cancer: patients' function, symptoms, and care preferences as death approaches.
J Am Geriatr Soc
2000
48
S110
21
PubMed
Volicer
L
,
Hurley
AC
,
Blasi
ZV
.
Scales for evaluation of End-of-Life Care in Dementia.
Alzheimer Dis Assoc Disord
2001
15
194
200
PubMed
Volicer
L
,
Hurley
AC
,
Lathi
DC
,
Kowall
NW
.
Measurement of severity in advanced Alzheimer's disease.
J Gerontol
1994
49
M223
6
PubMed
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
176
81
PubMed
Warden
V
,
Hurley
AC
,
Volicer
L
.
Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale.
J Am Med Dir Assoc
2003
4
9
15
PubMed
Luchins
DJ
,
Hanrahan
P
.
What is appropriate health care for end-stage dementia?
J Am Geriatr Soc
1993
41
25
30
PubMed
Ahronheim
JC
,
Morrison
RS
,
Baskin
SA
,
Morris
J
,
Meier
DE
.
Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer.
Arch Intern Med
1996
156
2094
100
PubMed
Morrison
RS
,
Ahronheim
JC
,
Morrison
GR
,
Darling
E
,
Baskin
SA
,
Morris
J
. et al.
Pain and discomfort associated with common hospital procedures and experiences.
J Pain Symptom Manage
1998
15
91
101
PubMed
Morrison
RS
,
Siu
AL
.
Survival in end-stage dementia following acute illness.
JAMA
2000
284
47
52
PubMed
Mitchell
SL
,
Morris
JN
,
Park
PS
,
Fries
BE
.
Terminal care for persons with advanced dementia in the nursing home and home care settings.
J Palliat Med
2004
7
808
16
PubMed
Mitchell
SL
,
Teno
JM
,
Roy
J
,
Kabumoto
G
,
Mor
V
.
Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment.
JAMA
2003
290
73
80
PubMed
Meier
DE
,
Ahronheim
JC
,
Morris
J
,
Baskin-Lyons
S
,
Morrison
RS
.
High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding.
Arch Intern Med
2001
161
594
9
PubMed
Teno
JM
,
Mitchell
SL
,
Skinner
J
,
Kuo
S
,
Fisher
E
,
Intrator
O
. et al.
Churning: the association between health care transitions and feeding tube insertion for nursing home residents with advanced cognitive impairment.
J Palliat Med
2009
12
359
62
PubMed
Gozalo
P
,
Teno
JM
,
Mitchell
SL
,
Skinner
J
,
Bynum
J
,
Tyler
D
. et al.
End-of-life transitions among nursing home residents with cognitive issues.
N Engl J Med
2011
365
1212
21
PubMed
Mitchell
SL
,
Kiely
DK
,
Lipsitz
LA
.
The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment.
Arch Intern Med
1997
157
327
32
PubMed
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
1567
72
PubMed
Kiely
DK
,
Mitchell
SL
,
Marlow
A
,
Murphy
KM
,
Morris
JN
.
Racial and state differences in the designation of advance directives in nursing home residents.
J Am Geriatr Soc
2001
49
1346
52
PubMed
Mitchell
SL
,
Teno
JM
,
Intrator
O
,
Feng
Z
,
Mor
V
.
Decisions to forgo hospitalization in advanced dementia: a nationwide study.
J Am Geriatr Soc
2007
55
432
8
PubMed
Lopez
RP
,
Amella
EJ
,
Strumpf
NE
,
Teno
JM
,
Mitchell
SL
.
The influence of nursing home culture on the use of feeding tubes.
Arch Intern Med
2010
170
83
8
PubMed
Ouslander
JG
,
Berenson
RA
.
Reducing unnecessary hospitalizations of nursing home residents.
N Engl J Med
2011
365
1165
7
PubMed
Goldfeld
KS
,
Stevenson
DG
,
Hamel
MB
,
Mitchell
SL
.
Medicare expenditures among nursing home residents with advanced dementia.
Arch Intern Med
2011
171
824
30
PubMed
Givens
JL
,
Kiely
DK
,
Carey
K
,
Mitchell
SL
.
Healthcare proxies of nursing home residents with advanced dementia: decisions they confront and their satisfaction with decision-making.
J Am Geriatr Soc
2009
57
1149
55
PubMed
Ahronheim
JC
,
Mulvihill
M
,
Sieger
C
,
Park
P
,
Fries
BE
.
State practice variations in the use of tube feeding for nursing home residents with severe cognitive impairment.
J Am Geriatr Soc
2001
49
148
52
PubMed
Finucane
TE
,
Christmas
C
,
Travis
K
.
Tube feeding in patients with advanced dementia: a review of the evidence.
JAMA
1999
282
1365
70
PubMed
Gessert
CE
,
Mosier
MC
,
Brown
EF
,
Frey
B
.
Tube feeding in nursing home residents with severe and irreversible cognitive impairment.
J Am Geriatr Soc
2000
48
1593
600
PubMed
Gillick
MR
.
Rethinking the role of tube feeding in patients with advanced dementia.
N Engl J Med
2000
342
206
10
PubMed
Hanson
LC
,
Carey
TS
,
Caprio
AJ
,
Lee
TJ
,
Ersek
M
,
Garrett
J
. et al.
Improving decision making for feeding options in dementia care: a randomized trial.
J Am Geriatr Soc
2011
59
2009
16
Monteleoni
C
,
Clark
E
.
Using rapid-cycle quality improvement methodology to reduce feeding tubes in patients with advanced dementia: before and after study.
BMJ
2004
329
491
4
PubMed
Teno
JM
,
Mor
V
,
DeSilva
D
,
Kabumoto
G
,
Roy
J
,
Wetle
T
.
Use of feeding tubes in nursing home residents with severe cognitive impairment [Letter].
JAMA
2002
287
3211
2
PubMed
Teno
JM
,
Mitchell
SL
,
Kuo
SK
,
Gozalo
PL
,
Rhodes
RL
,
Lima
JC
. et al.
Decision-making and outcomes of feeding tube insertion: a five-state study.
J Am Geriatr Soc
2011
59
881
6
PubMed
Mitchell
SL
,
Buchanan
JL
,
Littlehale
S
,
Hamel
MB
.
Tube-feeding versus hand-feeding nursing home residents with advanced dementia: a cost comparison.
J Am Med Dir Assoc
2003
4
27
33
PubMed
Mitchell
SL
.
A 93-year-old man with advanced dementia and eating problems.
JAMA
2007
298
2527
36
PubMed
Chen
JH
,
Lamberg
JL
,
Chen
YC
,
Kiely
DK
,
Page
JH
,
Person
CJ
. et al.
Occurrence and treatment of suspected pneumonia in long-term care residents dying with advanced dementia.
J Am Geriatr Soc
2006
54
290
5
PubMed
Mehr DR, van der Steen JT, Kruse RL, Ooms ME, Rantz M, Ribbe MW. Lower respiratory infections in nursing home residents with dementia: a tale of two countries. Gerontologist. 2003;43 Spec No 2:85-93. [PMID: 12711728]
van der Steen
JT
,
Kruse
RL
,
Ooms
ME
,
Ribbe
MW
,
van der Wal
G
,
Heintz
LL
. et al.
Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and The Netherlands: an ocean apart.
J Am Geriatr Soc
2004
52
691
9
PubMed
Givens
JL
,
Jones
RN
,
Shaffer
ML
,
Kiely
DK
,
Mitchell
SL
.
Survival and comfort after treatment of pneumonia in advanced dementia.
Arch Intern Med
2010
170
1102
7
PubMed
D'Agata
E
,
Mitchell
SL
.
Patterns of antimicrobial use among nursing home residents with advanced dementia.
Arch Intern Med
2008
168
357
62
PubMed
van der Steen
JT
,
Ooms
ME
,
Adèr
HJ
,
Ribbe
MW
,
van der Wal
G
.
Withholding antibiotic treatment in pneumonia patients with dementia: a quantitative observational study.
Arch Intern Med
2002
162
1753
60
PubMed
Fabiszewski
KJ
,
Volicer
B
,
Volicer
L
.
Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer patients.
JAMA
1990
263
3168
72
PubMed
van der Steen
JT
,
Mehr
DR
,
Kruse
RL
,
Sherman
AK
,
Madsen
RW
,
D'Agostino
RB
. et al.
Predictors of mortality for lower respiratory infections in nursing home residents with dementia were validated transnationally.
J Clin Epidemiol
2006
59
970
9
PubMed
Pop-Vicas
A
,
Mitchell
SL
,
Kandel
R
,
Schreiber
R
,
D'Agata
EM
.
Multidrug-resistant gram-negative bacteria in a long-term care facility: prevalence and risk factors.
J Am Geriatr Soc
2008
56
1276
80
PubMed
Loeb
M
,
Carusone
SC
,
Goeree
R
,
Walter
SD
,
Brazil
K
,
Krueger
P
. et al.
Effect of a clinical pathway to reduce hospitalizations in nursing home residents with pneumonia: a randomized controlled trial.
JAMA
2006
295
2503
10
PubMed
Fried
TR
,
Gillick
MR
,
Lipsitz
LA
.
Whether to transfer? Factors associated with hospitalization and outcome of elderly long-term care patients with pneumonia.
J Gen Intern Med
1995
10
246
50
PubMed
Teno
JM
,
Gozalo
PL
,
Lee
IC
,
Kuo
S
,
Spence
C
,
Connor
SR
. et al.
Does hospice improve quality of care for persons dying from dementia?
J Am Geriatr Soc
2011
59
1531
6
PubMed
Kiely
DK
,
Givens
JL
,
Shaffer
ML
,
Teno
JM
,
Mitchell
SL
.
Hospice use and outcomes in nursing home residents with advanced dementia.
J Am Geriatr Soc
2010
58
2284
91
PubMed
Miller
SC
,
Intrator
O
,
Gozalo
P
,
Roy
J
,
Barber
J
,
Mor
V
.
Government expenditures at the end of life for short- and long-stay nursing home residents: differences by hospice enrollment status.
J Am Geriatr Soc
2004
52
1284
92
PubMed
Miller
SC
,
Gozalo
P
,
Mor
V
.
Hospice enrollment and hospitalization of dying nursing home patients.
Am J Med
2001
111
38
44
PubMed
National Hospice and Palliative Care Organization. Facts and Figures. 2010. Accessed at www.nhpco.org/i4a/pages/index.cfm?pageid=5994 on August 2 August 2011.
Hanrahan
P
,
Luchins
DJ
.
Access to hospice programs in end-stage dementia: a national survey of hospice programs.
J Am Geriatr Soc
1995
43
56
9
PubMed
Mitchell
SL
,
Kiely
DK
,
Gillick
MR
.
Nursing home characteristics associated with tube feeding in advanced cognitive impairment.
J Am Geriatr Soc
2003
51
75
9
PubMed
Teno
JM
,
Clarridge
BR
,
Casey
V
,
Welch
LC
,
Wetle
T
,
Shield
R
. et al.
Family perspectives on end-of-life care at the last place of care.
JAMA
2004
291
88
93
PubMed
Volandes
AE
,
Paasche-Orlow
MK
,
Barry
MJ
,
Gillick
MR
,
Minaker
KL
,
Chang
Y
. et al.
Video decision support tool for advance care planning in dementia: randomised controlled trial.
BMJ
2009
338
b2159
PubMed
Loeb
M
,
Brazil
K
,
Lohfeld
L
,
McGeer
A
,
Simor
A
,
Stevenson
K
. et al.
Effect of a multifaceted intervention on number of antimicrobial prescriptions for suspected urinary tract infections in residents of nursing homes: cluster randomised controlled trial.
BMJ
2005
331
669
PubMed

This feature is available only to Registered Users

Subscribe/Learn More

1 Comment

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).

References

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.

Conflict of Interest:

None declared

PDF

Not Available

Related Point of Care

Dementia

Annals of Internal Medicine; 161 (3): ITC1

Dementia

Annals of Internal Medicine; 148 (7): ITC4-1

View MoreView Less

Medicine and Public Policy |3 January 2012

Advanced Dementia: State of the Art and Priorities for the Next Decade Free