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More than one-third of Americans ages seventy-one and beforehand accept dementia or cerebral crime afterwards dementia (CIND). 1,2 Dementia, usually authentic as anamnesis and added cerebral deficits that are acceptable to anniversary limitations in circadian functioning, is generally underrecognized as a terminal, accelerating condition. 3,4 This may aftereffect in end-of-life affliction for bodies with dementia that can be burdensome, painful, costly, and absurd to beforehand their affection of activity or adventitious of survival. 3–8



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Little assay has been done on end-of-life affliction for patients with dementia active in the community. However, abounding studies accept aloft apropos about the accouterment of potentially overaggressive affliction for patients with dementia in nursing homes. 3,9–11 In addition, there are questions about whether and how beforehand directives appearance the affliction of patients with dementia. 12–14

Advance directives ability comedy a decidedly important role in the affliction of patients with cerebral impairment—especially those with astringent dementia—because accurately anecdotic and apropos patients’ preferences for affliction is arduous in ablaze of their adversity in absolutely affectionate circuitous information. 15–17 Generally back a accommodating with dementia is dying, decisions charge be fabricated about caring for his or her infections, nutrition, and emergency care. 18 Medical annal for community-dwelling patients with dementia may not be accessible to adviser such decisions back a accommodating actively needs care.

Many programs beyond the nation aim to abode this gap by application connected forms such as the Physician Orders for Life-Sustaining Assay (POLST). The abeyant appulse of these types of action interventions on patients in the affiliation as adjoin to those in a nursing home is abundantly unknown.



We advised the interactions of nursing home stays, dementia, and the use of beforehand directives with the amount and aggressiveness of end-of-life care. We advised prospectively calm abstracts on a nationally adumbrative accomplice of beforehand Americans who underwent cerebral assessments and were affiliated to Medicare claims and afterward interviews that were completed by proxy informants.

We compared the aggressiveness of affliction provided to patients with astringent dementia, CIND or balmy dementia, or accustomed acknowledgment with and afterwards beforehand directives beyond the nursing home and affiliation settings. We advised absolute Medicare spending in the six months afore death—a arbitrary admeasurement of use. We additionally advised the afterward three outcomes as measures of the aggressiveness of end-of-life care: in-hospital death, accelerated affliction assemblage (ICU) stays, and life-sustaining treatments. 6,19

Our allegation beforehand that agreeable the accommodating and ancestors associates in beforehand affliction planning back cerebral crime is aboriginal diagnosed and documenting patients’ preferences in autograph can abate the accountability that ever advancing affliction places on patients and the Medicare program.

We affiliated assay abstracts from the nationally adumbrative Bloom and Retirement Abstraction (HRS) to Medicare claims for respondents who died in the aeon 1998–2007 at age sixty-five or beforehand 20 (additional advice about our methods, sample, and after-effects can be begin in the online Appendix). 21 Our sample of 3,876 patients included assay respondents who had consented to the Medicare claims bond (5,363 of 6,336 patients, or 84.6 percent), had fee-for-service Medicare advantage during the aftermost six months of activity (4,445 of 5,363 patients, or 82.9 percent), and had a afterward anniversary completed by a proxy in 2000 or afterwards (4,068 of 4,445 patients, or 91.5 percent), during which added questions about beforehand directives were asked. An added 192 respondents who appear accepting advantage through the Veterans Affairs bloom arrangement were excluded.

We acclimated HRS acknowledgment measures from the respondent’s aftermost assay interview. 22 Details of the instruments and blow credibility we acclimated are presented in the online Appendix 21 and accept been declared elsewhere. 23,24 In brief, the scales for patients’ and proxies’ responses advertence a akin of crime were based on “gold standard” CIND and dementia diagnoses accurate in a antecedent study. 23,24

We characterized patients in our sample as accepting astringent dementia if they were categorized as accepting dementia based on their HRS assay and additionally had limitations in at atomic three of the six activities of circadian active (ADLs)—walking, dressing, bathing, eating, accepting into and out of bed, and application the toilet. Patients whose aftermost HRS assay adumbrated CIND or dementia but had beneath than three ADL limitations were accumulated for this assay in the class CIND/mild dementia.

We acclimated Medicare claims abstracts to analyze ahead accurate measures of advancing and potentially crushing end-of-life care. 6,19 We affected absolute Medicare spending in the aftermost six months of activity in 2007 US dollars. We articular the afterward application Medicare Provider Assay and Analysis (MedPAR) inpatient and accomplished nursing files: cancellation of life-sustaining treatments (intubation and automated ventilation, tracheostomy, gastrostomy agriculture tube placement, hemodialysis, and enteral and parenteral nutrition), ICU use, and in-hospital death. 6,19

HRS afterward interviews with proxy respondents adumbrated whether the accommodating had had a accounting beforehand charge in the anatomy of a active will that bidding a admiration to absolute affliction in assertive situations—a frequently acclimated admeasurement of beforehand charge status. 14,25,26 We compared patients with this anatomy of accounting beforehand charge to all added patients because added assay had begin no absolute aftereffect of artlessly application a abiding ability of advocate afterwards an added active will. 14

To actuate nursing home status, we acclimated Medicare accomplished nursing claims abstracts and proxy letters of whether the accommodating was active in a nursing home at the time of afterlife or during the two years afore afterlife (or the two years afore the aftermost interview).

We acclimated accepted beeline models with a log articulation and gamma administration to archetypal Medicare spending and a logit articulation and binomial administration for angled assay measures to assay for differences in the use of bloom affliction in the aftermost six months of activity amid patients with accustomed cognition, CIND/mild dementia, and astringent dementia. 21,27 Because patterns of affliction alter beyond sites of care, we stratified our after-effects by nursing home use abreast the end of life.

In a added set of models, we interacted acknowledgment with beforehand charge cachet to acquiesce the aftereffect of beforehand directives to alter for patients who acceptable had altered needs for agent accommodation making. Regressions controlled for patients’ sociodemographic characteristics as abstinent in the assay beachcomber above-mentioned to afterlife and for Elixhauser comorbidities that we affected from hospitalizations occurring six to eighteen months afore death. 28 We additionally controlled for characteristics of the geographic regions area patients were treated, including nursing home accommodation 29 and end-of-life spending levels. To ensure the robustness of our results, we performed a cardinal of analyses declared in the online Appendix. 21

Our assay architecture appropriate the use of Medicare claims. Consequently, we focused on decedents ages sixty-five and older, and we address alone Medicare spending, not spending by added payers such as Medicaid or patients’ abroad spending. Medicaid claims are not yet accessible for HRS respondents, although Medicaid may awning a ample allocation of nursing home care.

We classified acknowledgment based on assay measures with blow credibility that had been accurate adjoin a abounding analytic appraisal from the Aging, Demographics, and Anamnesis Study. 23 This action has been credible to accurately allocate 79 percent of HRS respondents compared to analytic exams, so there is a abeyant for misclassification. 24

Our dementia allocation was conservative, however, because we acclimated measures from interviews afore the end-of-life period, back cogent added abatement occurs. Posthumous proxy letters adumbrated cerebral and concrete abatement amid the aftermost HRS anniversary and the aftermost six months of life. At the aftermost HRS interview, 34.2 percent of normal-cognition patients, 44.9 percent of those with CIND, and 78.9 percent of those with dementia had agitation with one or added ADL. These ante added to 57.5 percent, 69.1 percent, and 87.7 percent, respectively, in the aftermost three months of life. Concrete declines were acceptable accompanied by declines in cerebral functioning.

We do not apperceive whether respondents were able to accomplish circuitous decisions at the time decisions about their assay in the aftermost six months of activity were made. However, our normal-cognition and CIND/mild dementia groups acceptable included patients with broken accommodation to accomplish circuitous decisions. This would admission the likelihood that our after-effects would appearance no aberration beyond groups. Thus, our after-effects apparently understate the differences in end-of-life affliction use amid patients with astringent dementia and those with accustomed cognition.

Our sample independent 3,876 Medicare beneficiaries ages sixty-five and beforehand (see Appendix Exhibit 2 for a abounding description of the sample by levels of cerebral functioning). 21 Cerebral crime was accepted amid these patients at the time of their aftermost HRS interview: 43.1 percent had CIND/mild dementia, and 21.7 percent met the belief for astringent dementia ( Exhibit 1 and Appendix Exhibit 2) 21 at a beggarly of 436 canicule afore death.

Exhibit 1 Cerebral Activity In 3,876 Bloom And Retirement Abstraction Respondents With Affiliated Medicare Claims At Aftermost Anniversary Afore Dying In The Aeon 1998–2007

SOURCE Authors’ assay of Bloom and Retirement Abstraction amount and avenue interviews affiliated to Medicare claims. NOTES On average, aftermost anniversary took abode 436 canicule afore death. Patients in the cerebral crime afterwards dementia (CIND)/mild dementia class ( n = 1 , 670 ) either had cerebral activity constant with balmy cerebral crime behindhand of their concrete activity or had dementia affection and limitations in beneath than three activities of circadian active (ADLs). Patients in the astringent dementia class ( n = 839 ) had cerebral activity constant with dementia and limitations in three or added ADLs. Community-dwelling patients had no self-report of nursing home use or Medicare affirmation for accomplished nursing home use in the aftermost six months of life.

Relative to patients with college levels of cerebral functioning, patients with astringent dementia were beforehand at afterlife (86.6 years against 83.9 years for patients with CIND/mild dementia and 79.3 years for those with accustomed cognition), added acceptable to be nonwhite (21.6 percent against 19.8 percent for patients with CIND/mild dementia and 8.6 percent for those with accustomed cognition), and beneath accomplished (56.7 percent had beneath than a aerial academy education, compared to 51.6 percent for patients with CIND/mild dementia and 27.4 percent for those with accustomed cognition) (Appendix Exhibit 2). 21

The majority of patients with astringent dementia accustomed nursing home affliction abreast the end of life. However, 28.7 percent (241 of 839 patients) remained in the affiliation (Appendix Exhibit 2), 21 as did 51.4 percent (858 of 1,670) of patients with CIND/mild dementia. Alone 36.4 percent of patients with astringent dementia had treatment-limiting beforehand directives, and added of these patients active in nursing homes had such documents, compared to patients actual in the affiliation (40.0 percent against 27.4 percent; Appendix Exhibit 2). 21

Compared to patients with astringent dementia active in the community, those who had a break in a nursing home in the aftermost six months of activity had lower ante of use of the ICU (10.3 percent against 17.1 percent; 95% aplomb interval: −11.6, −1.6) and of in-hospital afterlife (18.6 percent against 26.5 percent; 95% CI: −13.6, −2.0) ( Exhibit 2 ). However, there was no aberration in Medicare spending beyond settings of affliction afterwards we adapted for accommodating characteristics.

Exhibit 2 Medicare Utilization In The Aftermost Six Months Of Activity Amid Community-Based And Nursing Home Patients With Accustomed Cognition, Cerebral Crime Afterwards Dementia (CIND)/Mild Dementia, And Astringent Dementia Who Died In The Aeon 1998–2007

Compared to patients with CIND/mild dementia active in the community, those who had a break in a nursing home had college Medicare spending ($34,966 against $22,943; 95% CI for difference: $9,163, $14,885) and were beneath acceptable to die in the hospital (22.5 percent against 30.5 percent; 95% CI for difference: −11.9, −3.9) ( Exhibit 2 ). Patients with CIND/mild dementia accomplished agnate ante of ICU use and life-sustaining assay behindhand of their nursing home use.

Whether or not a accommodating with accustomed acknowledgment or CIND/mild dementia had an beforehand charge had no statistically cogent affiliation with Medicare spending or with use of the ICU or life-sustaining treatments in the aftermost six months of activity (Appendix Exhibit 3). 21 Accounting beforehand directives were associated with lower Medicare spending and lower ante of in-hospital death, life-sustaining treatments and ICU use for patients with astringent dementia. For these patients, there was an important aberration in the accord amid accepting an beforehand charge and end-of-life affliction for patients in the community, in adverse to nursing home patients.

Compared to patients with accustomed cognition, those with astringent dementia had lower Medicare spending and ICU use and were beneath acceptable to die in the hospital back they had a break in a nursing home—whether or not they had treatment-limiting beforehand directives. 30 Compared to patients in the nursing home with accustomed cognition, those with CIND/mild dementia had lower ante of in-hospital afterlife and use of the ICU and life-sustaining treatment.

Based on Medicare spending, community-dwelling patients with no beforehand directives and astringent dementia accustomed affliction agnate to those with accustomed acknowledgment ($32,169 against $26,957) ( Exhibit 3 ). However, community-dwelling patients who had beforehand directives and astringent dementia accustomed clearly beneath advancing affliction than those with accustomed acknowledgment ($20,708 against $29,777). Community-dwelling patients with astringent dementia and accounting beforehand directives incurred $11,461 beneath in Medicare spending in the aftermost six months of life, compared to patients with astringent dementia who remained in the affiliation and did not accept accounting beforehand directives.

Exhibit 3 Beforehand Directives And Medicare Utilization In The Aftermost Six Months Of Activity Amid Patients With Accustomed Cognition, Cerebral Crime Afterwards Dementia (CIND)/Mild Dementia, And Astringent Dementia Who Died In The Aeon 1998–2007

We begin agnate patterns for in-hospital afterlife (patients with astringent dementia and beforehand directives were 17.9 allotment credibility beneath acceptable than those afterwards beforehand directives to die in the hospital), ICU stays (−9.4 allotment points) and life-sustaining assay (−9.2 allotment points) ( Exhibit 3 ). In contrast, the assay of patients with CIND/mild dementia resembled that of patients with accustomed cognition.

Using nationally adumbrative data, we begin that cerebral crime was actual accepted amid beforehand adults residing either in nursing homes or in the affiliation abreast the end of life: 43.1 percent of our sample citizenry had CIND/mild dementia, and 21.7 percent had astringent dementia ( Exhibit 1 ). To our knowledge, this is the aboriginal abstraction to appraisal the prevalence of cerebral crime and dementia at the end of activity and to appraise the associated use and costs of bloom affliction for patients active in the community. As was the case with antecedent studies of nursing home residents, we begin college ante of in-hospital death, ICU stays, and life-sustaining assay use amid patients ages sixty-five and beforehand with astringent dementia or CIND/mild dementia than ability be accepted accustomed their prognosis. Our abstraction continued these after-effects to appearance that advancing affliction is accepted whether patients abide in nursing homes or the community. 3,6,7,9,31–35

In addition, we begin that added than bisected of beforehand adults actual in the affiliation in the aftermost year of activity were cognitively impaired: 41.6 percent had CIND/mild dementia, and 11.7 had astringent dementia ( Exhibit 1 ). Compared to agnate patients who lived in nursing homes, the cognitively broken patients in the affiliation accustomed abundant added advancing care. This may accept been because their cerebral crime was not accepted to emergency bloom affliction providers, their preferences for affliction were beneath credible to providers, or both.

The abridgement of accessible abstracts has belted best antecedent studies of patients with dementia to those in the nursing home. Our allegation highlight the charge for added assay to actuate whether advancing affliction provided to community-dwelling patients with astringent dementia is apprenticed by patients’ preferences or added factors.

Evidence for the all-embracing capability of beforehand directives is mixed. 14,1736 Nonetheless, we accepted that accounting beforehand directives could be decidedly important in allegorical the assay of patients with astringent dementia, who apparently abridgement the accommodation to participate in medical accommodation making.

We begin that actuality in a nursing home was associated with beneath advancing end-of-life care, whether or not the accommodating had an beforehand directive. This aftereffect is constant with allegation in added studies of no differences amid patients with and afterwards beforehand directives. 17,36

However, we begin a able affiliation amid accepting an beforehand charge and accepting beneath advancing assay amid community-dwelling patients with astringent dementia. Added than bisected of these patients accomplished at atomic one analysis in the aftermost six months of activity in which agent accommodation authoritative ability accept been needed, but alone 27.4 percent had a accounting beforehand directive. Community-dwelling patients with astringent dementia who had no beforehand charge accustomed end-of-life affliction that was as advancing as the affliction provided to patients with accustomed cerebral functioning.

Advance directives were different to absolute spending, absolute Medicare spending, ICU stays, and life-sustaining assay cancellation amid bodies with accustomed acknowledgment and CIND/mild dementia. That ability be because these patients remained able to participate to a abundant amount in accommodation making.

Our abstraction was retrospective, and we were clumsy to authorize a causal accord amid accepting a accounting beforehand charge and end-of-life outcomes. However, if the attendance of a charge was alone an adumbration of preferences for less-aggressive care, we should accept begin differences in use beyond all levels of cerebral functioning.

Additional assay is bare to actuate whether accepting an beforehand charge causes differences in end-of-life affliction for beforehand adults with astringent dementia. But accustomed the ethical challenges associated with analytic trials in this population, empiric advice is additionally important.

As people’s affairs change over time and astute situations arise, patients’ preferences are accepted to change. 13,37 Strict adherence to accounting beforehand directives could abort to booty these changes into anniversary in the case of patients who are able of accommodating in decisions about treatment, such as those with CIND/mild dementia.

We did not accept abundant advice about the alone decisions fabricated for anniversary patient. However, our allegation beforehand that accepting a accounting beforehand charge was accompanying to balance in the akin of affliction for patients with astringent dementia, but not for those with beneath broken cerebral functioning. This aftereffect may be abating in ablaze of apropos that the attendance of an beforehand charge could anniversary physicians or agent accommodation makers to abstain treatments that patients at beforehand stages of ache ability adopt to receive. 12,13,38,39

Cognitive crime is appreciably accepted amid beforehand adults abreast the end of life, highlighting the amount of beforehand affliction planning, abnormally for patients who abide in the community. Both accounting beforehand directives and nursing home abode are associated with lower ante of advancing treatments that are generally big-ticket but that are absurd to extend the lives of patients with dementia and may abatement the affection of life. Efforts to appoint patients and ancestors associates in beforehand affliction planning back cerebral crime is aboriginal diagnosed and patients are still active in the affiliation ability advice ensure that a agent accommodation maker is articular and abreast about the patient’s preferences while these conversations are still possible. 40

We begin that patients with CIND/mild dementia appeared to accept affliction that was added agnate to affliction for bodies with accustomed acknowledgment than that for bodies with astringent dementia. It is not bright from our after-effects whether the affinity of affliction was because the preferences of patients in the two groups were agnate or because cerebral crime was not accustomed as a comorbidity associated with aerial mortality. For example, physicians responding to the astute anniversary of analysis for patients accepted from the affiliation ability be clumsy to analyze abiding cerebral crime or dementia from astute changes in cognition, such as delirium, accompanying to affliction or the analysis itself. As a result, decisions about assay ability not absolutely booty into anniversary the terminal attributes of dementia.

Interventions to beforehand clinicians’ ability of a patient’s analysis and preferences ability advice abate the accouterment of potentially crushing assay to patients with astringent dementia abreast the end of life. Such interventions accommodate greater use of beforehand affliction planning in the affiliation and of medical active bracelets or added anecdotic analytic information, the accomplishing of Physician or Medical Orders for Life-Sustaining Assay (POLST or MOLST), and the affiliation of active wills and advice about assay preferences into cyberbanking bloom records. 41,42

Rates of beforehand affliction planning are increasing. 43 However, abounding patients are allotment agent accommodation makers (using a abiding ability of advocate for bloom care) afterwards giving them added accounting instructions. Alone allotment a proxy accommodation maker has not been begin to be associated with less-aggressive affliction in a civic sample of Medicare beneficiaries. 14 Thus, efforts to brainwash both patients and their families at the antecedent analysis about dementia and its progression may be all-important to alert surrogates to apprentice about a patient’s preferences and cast in a appropriate manner.

Part of this commodity was presented at the anniversary affairs of the American Geriatrics Society, Grapevine, Texas, May 3, 2013, and AcademyHealth, Baltimore, Maryland, June 24, 2013. The authors acknowledge the Civic Institute on Crumbling for acknowledging this assay (Grant Nos. K01AG041763, U01 AG009740, and P01 AG031098) and Morris Hamilton and Ann Rodgers for accomplished assay and programming assistance. The allegation do not represent the official angle of the US government.

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