Weight Loss, Dysphagia, and Outcome in Advanced Dementia

Jean Chouinard, MD, Erika Lavigne, MHsc, and Carole Villeneuve, BSc, RDSisters of Charity at Ottawa Hospital, Ottawa, Ontario, Canada

Abstract. There has been much debate on the value andrisks of long-term enteral feeding in patients with ad-vanced dementia. A retrospective study was carried outon 47 patients with a primary diagnosis of dementia whodied over a two-year period. All were inpatients in anursing home or skilled nursing facility. Marked weightloss and dysphagia occurring in a specific pattern werefound to be associated with death from pneumonia.These clinical features probably imply failure of basichomeostatic mechanisms. Patients showing this clinicalpattern may be less likely to show benefits from long-term enteral feeding.

Key words: Dementia — Tube feeding — Pneumonia— Dysphagia — Weight loss — Deglutition — Deglu-tition disorders.

The Sisters of Charity at Ottawa Health Service(SCOHS) is a nonprofit Health Care corporation offeringmultilevel geriatric and long-term care. All deaths occur-ring in the Hospital and Nursing Home sections of theMember Institutions are reviewed in accordance withProvincial regulations.

There were a number of findings from this study.First, weight change is prevalent in our inpatient popu-lation, with an average annual weight loss of 4%. Sec-ond, pneumonia is a major health problem. It was theimmediate cause of death in 33% of our patients overall,and in 53% of patients with a principal diagnosis ofdementia over a 31⁄2 year period (data not shown). Thesefigures are comparable with data from other similar in-stitutions [1,2].

Other studies [3–10] have examined causes ofweight change and its impact on morbidity and mortality

in community dwelling as well as institutionalized olderpersons. No studies, however, have attempted to linkpatterns of weight change and feeding dysfunction withcause of death in a demented population. This is some-what surprising as dysphagia is indeed associated withweight loss in inpatients [11,12]. Furthermore, undernu-trition, as measured by body mass, appears to be preva-lent in patients with Alzheimer’s disease [10,13]. Finally,aspiration is the initiating event in most episodes ofpneumonia [14].

This led us to wonder whether we could identifya pattern of clinical features in patients with advanceddementia associated with death from pneumonia. Suchdata would be useful in the planning of care for thesepatients, and, more specifically, help us counsel familiesin the decision-making process regarding not only gen-eral goals of treatment but also in the initiation or with-holding of long-term enteral feeding.

Materials and Methods

Study Population

The health records of 47 patients with a primary diagnosis of dementiawho died over a 21⁄2 year period starting in October 1990 were ana-lyzed. The following information was abstracted from the record: de-mographic data (age, gender, duration of stay, main and associateddiagnoses, cause of death); degree of the patient’s functional impair-ment graded according to the scale developed by Katz et al. [15]; heightand weight on admission and at death; the last hemoglobin and serumalbumin determination available before death and the prevalence, pat-tern, and severity of swallowing disorders. The latter are routinelyassessed at admission and monitored over time in our inpatients. Nopatients were receiving enteral or parenteral feedings. Patients were fedorally ad lib with liquid dietary supplements where these were felt to beindicated by the attending physician.

Calculations

Changes in body mass were evaluated using generally accepted indices,body mass index (BMI) and percentage, or fractional weight change(FWC). These were calculated as follows:

Correspondence to:J. Chouinard, M.D., 43 Bruyere Street, Ottawa,Ontario, Canada K1N 5C8

Dysphagia 13:151–155 (1998)

© Springer-Verlag New York Inc. 1998

BMI 4 body mass (kg)/[height (m)]2

FWC 4 [(final weight in kg) − (initial weight in kg)]× 100/(initial weight in kg)

For the purpose of analysis, patients were divided into three groups:those who died of pneumonia (PN) (n4 20); those who died of otherinfectious causes (OI) (n4 4); and those who died of noninfectiouscauses (NI) (n4 23).

Results

Patient characteristics are summarized in Table 1. De-mentia types were evenly distributed among the threegroups (x2 4 3.25, p 4 n.s.). All patients had severedementia on admission (clinical stage VII). Etiology of

dementia was not stated in the health record in 7/47 cases(15%); other causes of dementia included one case eachof Huntington’s disease, corticospinal degeneration, pro-gressive supranuclear palsy, posttraumatic encephalopa-thy, and dementia of multiple etiologies. Men tended tohave shorter stays but this did not achieve statistical sig-nificance.

Patients who died of other infectious causes in-cluded the following: decubitus ulcer progressing to sep-ticemia, urinary tract infection, diverticulitis with perfo-ration, and septicemia of unknown origin. In patientswho died of noninfectious causes, vascular complica-tions were most prominent: ischemic heart disease (n410), cerebrovascular disease (n4 3), acute mesentericartery thrombosis (n4 1), acute vascular insufficiencyof a leg (n4 2). Cancer was the cause of death in 2patients and the remainder died of various other causes.All patients showed severe functional impairment atdeath; all but 2 patients who died of noninfectious causeswere dependent on help for all their self-care (score of Gon the Katz scale).

Serum albumin were measured far too long, onaverage, before death (19 months) for the data to beuseful. Hemoglobin was obtained on an average of 5months before death (range 0–21 months); 44 determi-nations were available. Hemoglobin determinationstended to be lower in patients who died of pneumonia,particularly in males, though this trend was not statisti-cally significant. However, a large number of male pa-tients who died of pneumonia (8/9) had hemoglobin lev-els below normal before death.

BMI changes by subgroup are shown in Table 2and summarized in Table 3. As can be seen, patients whodied of pneumonia were admitted with higher BMIs onadmission but tended to lose significantly more bodymass. Patients who died of noninfectious causes did notexhibit a significant change in BMI. The number of pa-tients who died of other infectious causes was too smallto draw firm conclusions. There did not seem to be atrend towards a common value before death; Analysis ofvariance (ANOVA) of initial and final BMI by subgroup

Table 1. General demographic characteristics of study population

Groupa

PN OI NI Total

Number of patientsMale 9 1 5 15Female 11 3 18 32

Total 20 4 23 47Cause of dementia

Alzheimer’s 8 2 11 21Multi-infarct 6 0 8 14Other/nonspecified 6 2 4 12

Mean age male 82.4 77 78.2 80.6Mean age female 78.6 88 88.2 84.9Mean age overall 80.2 85.3 85.4 83.5Mean stay (days) 856.6 664.25 895.7 859.36Range (days) 19–3896 24–2089 3–3196 3–3896

aPN: deaths from pneumonia; OI: deaths from other infectious causes;NI: deaths from noninfectious causes.

Table 2. BMI changes by subgroup and gender

Groupa

PN OI NI Total

BMI on admissionMale average 25.14 18 21 23.17Male range 16–31 — 16–30 16–31Female average 22.7 18.67 20.21 20.57Female range 21–26 16–24 12–31 12–31Total average 24.13 18.5 20.39 21.48Total range 16–31 16–24 12–31 12–31

BMI at deathMale average 20.5 19 17.25 19.18Male range 14–24 — 15–19 14–24Female average 18 17 19.4 18.72Female range 15–22 10–24 13–30 10–30Total average 19.25 17.5 18.92 18.87Total range 14–24 10–24 13–30 10–30

aSee Table 1 and text for explanation of group codes.

Table 3. Summary of BMI changes by subgroup

Groupc

Mean BMI Paired ta

Initial Final p

PN 24.1 19.3 <0.001OI 18.5 17.5 —NI 20.4 18.9 n.s.F-testb >350 p 4 0 >350p 4 0

aStudent’s pairedt-test.bF-value by ANOVA.cFor explanation of group codes see Table 1.

152 J. Chouinard et al.: Outcome in Advanced Dementia

showed significant differences. These trends are alsoshown in Tables 4 and 5 and Figure 1 where the differ-ences between the final and initial BMI and the fractionalweight change (FWC), respectively, are given by sub-groups. Remember that a BMI within the range of 24–27is considered optimal in community-dwelling elderly.

Weight loss correlated with stay in patients whodied of pneumonia (r4 −0.55, p < 0.05) but not inpatients who died of noninfectious causes (r4 −0.4, p4 n.s.).

Significant swallowing abnormalities werethought to be present in 21 of the 47 patients (45%). Thepresence of a swallowing disorder tended to correlatewith death from pneumonia [Table 6 (x2 4 6.59, p <0.05)]. Abnormalities of swallowing tended to cluster ina specific pattern (Table 7 and Fig. 2). Abnormalities ofthe voice alone were not associated with death frompneumonia.

Discussion

This small cross-sectional analysis demonstrated an as-sociation between high rates of weight loss, of a specific

pattern of dysphagia, and death from pneumonia in agroup of institutionalized patients with advanced demen-tia. This raises several issues. First, does the weight lossassociated with swallowing abnormalities simply resultfrom an insufficient intake of calories and nutrients? Wecould not derive calorie counts in our patient population.However, this interpretation may be overly simplistic.There are a number of other correlates of advanced de-mentia with severe functional impairment including dis-ordered thermoregulation [16] and loss of cardiovascularreflexes [17–19] that may imply generalized breakdownof homeostatic mechanisms.

Patients with severe neurological deficits andfunctional impairment do not do well even when pro-vided with adequate calories and nutrients through en-teral feeding [20,21]. In cases of lean body mass andweight decline, these patients develop a number of com-plications including decubiti; an impairment of the abil-ity to synthesize protein [20] may be responsible. Webelieve our study population presents striking similaritieswith the patients in these studies and have termed thisconstellation the ‘‘failure to thrive syndrome of ad-vanced dementia.’’

Table 4. Means and ranges of differences in BMI by subgroupa

Groupb PN OI NI

Number of observations 11 4 18Mean BMI change −4.86 −1 −1.46Range of BMI changes −10 to −1.5 −6 to −1 −11.4 to 4

aDifferences in BMI are calculated as BMI change4 final BMI-initialBMI; observations were not available on all patients.bFor explanation of group codes see Table 1.

Table 5. Mean fractional weight change by subgroupa

Group PN OI NI

Number of observations 16 4 19Mean FWC (%) −14.92 −6.88 −5.28

aObservations were not available on all patients.

Fig. 1. Initial and final mean BMIs in patientswho died of pneumonia (PN), other infectious(OI), and noninfectious (NI) causes.

J. Chouinard et al.: Outcome in Advanced Dementia 153

Preservation of brainstem and neuroendocrinefunction is essential to prolonged survival in patientswho are in the persistent vegetative state (PVS) [22].Although many of our patients did not fulfill the criteriafor PVS, we believe that in a large proportion of patientswith advanced dementia, failure of regulation of basicbody function occurs, not only because of their generaldebility and functional impairment but as a direct resultof the dementing process itself. This is borne out by thefact that patients who died of noninfectious causes sur-vived for long periods with a stable weight and die ofcauses generally prevalent in an ambulatory geriatricpopulation (e.g., ischemic heart disease). Furthermore, inthis study patients who died of pneumonia were in factadmitted with a higher BMI than patients who died ofother causes but lost roughly three times more weightthan the latter. The correlation between weight loss andduration of stay suggests that this was the result of anunrelenting underlying physiological instability. The factthat the three subgroups did not converge towards a‘‘threshold value’’ for final BMI (see ANOVA of BMIs,Table 3) suggests that outcome is not primarily deter-mined by weight alone but more significantly by thepattern of weight change. We have attempted to analyze

patients who died of infectious causes other than pneu-monia separately in order to see whether severe weightloss is associated with death from any infectious cause ormore specifically pneumonia. Unfortunately the numberof patients in this category does not allow for firm con-clusions to be drawn.

Second, can we explain the correlate of deathfrom pneumonia? As noted above, most pneumoniasstart with an episode of aspiration. The pattern of swal-lowing impairment would put these patients at risk foraspiration; the poor outcomes from pneumonia not onlyreflect the virulence of the organisms that colonize theupper airway in institutionalized, bedridden patients butalso a failure of basic homeostasis, as outlined above.

Third, does this help us counsel patients andfamilies on the decision to tube feed a severely dementedand functionally impaired patient? The decision to intu-bate and feed a demented patient has been the subject ofheated debate and even less science [22–24]. Tube feed-ing does not appear to prevent aspiration, and indeedmay increase its frequency [14]. Given the above de-mented patients with the clinical features associated withdeath from pneumonia, they may be less likely to benefitfrom this intervention.

Table 6. Prevalence of swallowing abnormalities by subgroup

Swallowing problem

Group

PN OI NI

Yes 13 2 6No 7 2 17

Table 7. Prevalence (in %) of specific abnormal aspects of swallowingby subgroup

Swallowing abnormality

Group (number)

PN (20) OI and NI (27)

Absence of chewing 15 0Difficulty taking liquids 60 19Poor tongue control 40 33Presence of coughing/choking 60 33Forgetting to swallow 35 11

Fig. 2. Prevalence of specific abnormalities ofswallowing in patients who died of pneumonia (PN) andthose who died of other infectious (OI) or noninfectious(NI) causes. For the purpose of this analysis the lattertwo groups were combined.

154 J. Chouinard et al.: Outcome in Advanced Dementia

We have no explanation for the low hemoglobinvalues seen in males who died of pneumonia. No attemptwas made to further characterize the etiology of the ane-mia, a clinically appropriate decision given the generalcondition of these patients. It is probably reasonable toconclude that a failure to release iron from the reticulo-endothelial system was responsible for the anemia insome cases (anemia ‘‘of chronic disease’’).

Summary and Conclusions

We have found an association between easily identifiedclinical features and death from pneumonia in severelydemented, functionally impaired, institutionalized pa-tients. In our opinion forced enteral feeding in these pa-tients may be more of an added burden than a benefit[26–28].

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