Caring for Patients with TerminalAlzheimer’s DiseasePatients with terminal Alzheimer’s disease (AD) are characterized by their inability tocommunicate verbally and ambulate even with assistance, and by their complete dependencein activities of daily living. Due to a mean survival of one year, interventions that only havea long-term effect and the use of invasive procedures leading to the patient’s discomfort maynot be appropriate. The goal of care may be overall comfort instead of survival at all costsand maintenance of function. The risks and benefits of any procedure should be consideredwith this goal of care in mind.

By Ladislav Volicer, MD, PhD, FAAN, FGSA

The progression of Alzheimer’sdisease (AD) can be divided

into several stages, most commonlydescribed as mild, moderate andsevere. Two more stages (profoundand terminal)2 were added as thesevere stage did not have a general-ly accepted definition, and accord-ing to the Clinical Dementia Rating(CDR) scale,1 patients retained cer-tain functions at this stage.

Patients are defined as havingterminal AD when they have nocomprehension or recognition, mustbe fed or require tube feeding, aretotally incontinent and bedridden(i.e., not able to ambulate, even withassistance), and are not able to com-municate verbally. The median sur-vival of patients in this stage is one

year.3 Other progressive dementias(e.g., vascular dementia, dementiawith Lewy bodies and frontotempo-ral dementia) may have differentsymptoms and course than AD.However, once the patient’s demen-tia progresses to the severe stage,the symptoms and clinical problemspresented are the same regardless ofthe initial diagnosis.

It should also be noted that autop-sy examinations have revealed morethan one pathological process thatmay cause dementia, including ADand vascular changes, and AD withmultiple cortical Lewy bodies. Thus,management of terminal dementia issimilar in all progressive dementias.Also, the medical issues of patientswith dementia may be divided intothree broad categories: chronic con-ditions, comfort and end-of-lifeissues, listed in Table 1.

Chronic ConditionsMany patients with terminal demen-

tia suffer from comorbid conditions,such as congestive heart failure,chronic obstructive pulmonary dis-ease (COPD) and diabetes. Theprevalence of these conditions ishigher in patients with dementiathan in cognitively intact elderlypatients.4 Thus, management ofthese conditions should be modifiedin terminal dementia. Most impor-tant, since these patients are unableto report symptoms of their diseaseor side effects of treatment, comor-bid conditions should be treatedconservatively to avoid conse-quences of overtreatment, such ashypoglycemia.

Due to the fact that individualswith terminal dementia have shortlife expectancy, interventions thathave only a long-term effect,including treatment with choles-terol-lowering agents or restrictivediets, are not appropriate. Any med-ical intervention causing discom-fort, even a routine examination,

The Canadian Review of Alzheimer’s Disease and Other Dementias • 9

Ladislav Volicer, MD, PhD, FAAN, FGSASchool of Aging StudiesUniversity of South Florida,Tampa, Florida

10 • The Canadian Review of Alzheimer’s Disease and Other Dementias

such as measuring blood pressure,may cause behavioral problems inpersons who do not understand theneed for this intervention. Beforeany treatment is initiated or contin-ued, the risks and benefits should beconsidered and physicians shouldask, “Are the intended results of thistreatment promoting the goal ofcare for this patient?”

Comfort IssuesSince patients diagnosed with ter-minal dementia are patients with aterminal disease, comfort may bethe most appropriate goal of care.Two alternative goals, survival at allcosts and maintenance of function,5

may no longer apply. In an effort to ensure the patient’s

comfort, it should be taken into con-sideration that even individuals withterminal dementia most often do notprogress to a vegetative state wherethey would not feel discomfort orpain.6 Physical and psychologicalcomfort should therefore be moni-tored and maintained until death.These comfort issues include pain,behavioral symptoms, environmen-tal factors, constipation, pressureulcers and symptoms which mani-

fest during the dying process, suchas shortness of breath.

Pain. The most common physi-cal symptom that causes discomfortis unrecognized or undertreatedpain.8 It is difficult to identify andmeasure pain, as well as distinguishsomatic pain and general discom-fort in an aphasic individual. Whenany behavioral changes are observedin a patient with terminal dementia,an evaluation for possible painshould be initiated. These behaviorchanges may include oral vocaliza-tion, increased resistiveness to care,restless body move ments, crying,changes in appetite, withdrawal,rubbing/holding a body area, facialgrimacing, increased confusion or achange in sleep patterns. The listedchanges could be due to unmetphysical needs (i.e., being hungry,thirsty or cold), unmet affectiveneeds (i.e., environmental stressand/or lack of meaningful humaninteraction) or somatic pain.

Several observational scales formeasuring pain in individuals withadvanced dementia have beendeveloped and evaluated,7 and mayhelp in pain assessment and com-munication between different care

providers, including nursing assis-tants, nurses and physicians.

Treating pain in persons withterminal dementia should includenon-pharmacologic strategies, suchas application of heat or cold com-presses, massage, positioning, sen-sory stimulation and mild exercise.

Pharmacologic managementshould start with the administrationof acetaminophen. If the treatmentis not effective, it is best to proceedto oral morphine and to avoid use ofnon-steroidal anti-inflammatoryagents. These agents often causegastrointestinal side effects that theindividual with advanced dementiacannot report. A concentrated solu-tion of morphine can be used evenin individuals who have difficultyswallowing as it is absorbed in theoral mucosa. Another option in anindividual with chronic pain is theadministration of fentanyl skinpatches. However, pain manage-ment should strive for pain preven-tion rather than initiation of treat-ment after pain has already present-ed. Thus, chronic pain should betreated with regular doses of anal-gesics with an option of additionaldoses if needed.

New Ethics of Dementia Management

Table 1

Medical Issues in Terminal Dementia

Chronic Conditions Comfort Issues End-of-life Issues

• Diabetes

• Arthritis

• Hypertension

• Congestive heart failure

• COPD

• Malignancy

• Pain

• Behavioral symptoms

• Environmental factors

• Constipation

• Pressure ulcers

• Shortness of breath

• Cardiopulmonary resuscitation

• Transfer to an acute care setting

• Treatment of generalized infections

• Eating difficulties (tube feeding)

Caring for Patients with Terminal AD

The Canadian Review of Alzheimer’s Disease and Other Dementias • 11

Behavioral changes. The mana -gement of psychiatric symptoms inpatients with dementia is as impor-tant for quality of life (QoL) as man-agement of pain in individuals withterminal cancer. Some behaviors arecaused by environmental or physi-cal factors, by interaction betweenpatients with dementia and theircaregivers, or by the dementingprocess itself. It is important to firsteliminate the possibility that behav-iors are due to environmental orphysical causes including cold orhot temperatures, noise, and hungeror thirst.

Resistiveness to care. The twomost common and important behav-ioral syndromes are resistiveness tocare and agitation/apathy. It must benoted that behavioral problems thatoccur during interactions betweenan individual with severe dementiaand a caregiver are often erroneous-ly labeled as aggression. These out-bursts are actually caused by a lackof effective communication betweenthe patient with dementia and theircaregiver. The patient does notunderstand the need for the caregiv-er’s actions and may resist in certainsituations, including un dressing,bathing, dressing and being put tobed. The behavior presented is infact resistiveness to care9 and canescalate into combative behavior.

Furthermore, the patient withdementia may defend him/herselfby striking out because they believethe caregiver to be an aggressor. It istherefore important to prevent esca-lation of resistiveness to care intocombative behavior that may resultin injury of the caregiver or patient.

The appropriate non-pharmaco-logic intervention for such a behav-ior is improvement in communica-tion, delaying the caregiving activ-ity or modifying the caregivingstrategy. Another approach is dis-traction during care, provided byinformal discussion or by a plannedreminiscence that utilizes remain-ing long-term memories. The mosteffective strategy for managementof resistiveness to care is modifica-tion of the caregiver approaches.This may include changes in anenvironment, such as making bath-rooms more homelike and comfort-

able, or changes in caregivingstrategies. The substitution of a bed(or towel) bath for shower or tubbath greatly decreases resistivenessto bathing without adverse hygien-ic consequences.

Resis tiveness to care shouldalso be considered as one of theimportant indicators of possiblepresence of depression in thepatient with dementia. If other non-pharmacologic interventions arenot effective in preventing the esca-lation to abusive behavior, anti-depressants are the first medicationclass physicians should prescribe.It should be noted that depressionis very common in patient’s withdementia and is a factor that may

affect the patients behavior.10

However, it is difficult to diagnosein the terminal dementia stage asthe diagnosis must rely on vegeta-tive symptoms.

Agitation and apathy. When apatient with dementia is solitary,they often exhibit agitation and apa-thy. Agitation is a term that is some-times used to label all behavioralsymptoms in dementia, but is betterreserved to define behaviors thatcommunicate to others that thepatient is experiencing unpleasantstate of excitement which remainsafter interventions to reduce inter-

nal or external stimuli have beencarried out.11 Apathy is a conditiondifferent from depression resultingfrom a different pattern of bloodflow in the brain. These symptomsoften occur in the same individualand are difficult to treat pharmaco-logically because sedatives used todecrease agitation often increaseapathy, whereas stimulants used todecrease apathy often increase agi-tation. The best treatment approachfor agitation and apathy is a provi-sion of meaningful activities.

Environmental factors. Patientswith terminal dementia may not beable to participate in regular activi-ties because of their cognitiveimpairment, but they still require

Many patients with terminal dementia suffer from comorbidconditions, such as congestive heart failure, chronic

obstructive pulmonary disease (COPD) and diabetes. Theprevalence of these conditions is higher in patients with

dementia than in cognitively intact elderly patients.4

12 • The Canadian Review of Alzheimer’s Disease and Other Dementias

stimulation and should not be iso-lated in their rooms or sitting in ahallway. These patients benefit froma comfortable environment andpresence of others.

One strategy for maintainingQoL, even in the terminal-dementiastage, is the development ofNamaste Care.12 Namaste Care is anenhanced nursing program based inthe United States and Sydney,Australia, which provides a roomwithin the care facility where resi-dents with terminal dementia aregathered with the continuous pres-

ence of a caregiver. The room pro-vides a home-like, pleasant atmos-phere with plants, pictures and cur-tains, low lights and relaxing music.

The patients are placed inlounge chairs rather than a wheel-chair to address the comfort issuesoften present in patients with termi-nal dementia. If they are not at riskfor choking, residents are offered asmall lollypop, which helps to keeptheir mouths moist.

The Namaste caregiver alsowashes each person’s face andbrushes their hair while the residentsare spoken to about their lives orabout the day, as if it were a normalconversation. To help maintainhydration, often a difficult task in

these patients, they are offered abeverage (i.e., juice, water, smooth-ies and other high-caloric bever-ages). The Namaste caregiver alsosoaks the residents’ feet and washestheir legs. Range-of-motion exercis-es are accompanied by music.

In the afternoon, the patients areoften visited by their families. TheNamaste caregiver will sometimesoffer suggestions and may encouragefamily members to massage resi-dents’ hands and arms, or feed themice cream if choking is not a concern.Family members may also enjoy

conversing with the Namaste care-giver as many spouses are very iso-lated when their loved ones are in anursing facility. Of note, the Namastecaregiver is a nursing assistant whowould otherwise take care of the res-idents in the unit. By gathering thepatients with dementia in the samelocation, the Namaste caregiver isable to offer better individualizedcare and constant attention.

Constipation is very common inpatients with terminal dementia,and fecal impaction may even causedeath. Constipation may be due to acombination of decreased enteralneurons,13 medication side effects,and decreased ambulation. Theusual treatment for constipation

includes a high-fiber diet andosmotic laxatives. Stimulating laxa-tives should be used only occasion-ally and stool softeners should beavoided because they often are noteffective.14 Enemas are uncomfort-able and require more staff timethan administration of an oral med-ication. As the primary goal of careis comfort and preserving dignity,enemas should be avoided.

Finally, the use of oral laxatives,primarily sorbitol, combined withthe close monitoring of bowel move-ments and subsequent changes indose or frequency as necessary, min-imizes the need for rectally adminis-tered laxatives, which is especiallydifficult in patients with dementiawho become resistive during care.

Pressure ulcers, which are asso-ciated with sepsis, are most com-monly located on the sacrum,trochanters and heels. A higherprevalence of pressure ulcers wasassociated with being chairbound orbedridden, underweight and fecalincontinence. Pressure-ulcer associ-ated death is more common in ADpatients than in matched controlsubjects.18

A recent study of New York nurs-ing homes found that pressure ulcerswere present in 14.7% of nursinghome residents with terminal demen-tia before they died.15 The study alsonoted that, on admission from a hos-pital to a nursing home, 10% of resi-dents already had one or more pres-sure ulcers, while only 4.7% of resi-dents admitted from home presentedwith pressure ulcers.16 It should benoted that several pressure-ulcer-prevention guidelines have been

The management of psychiatric symptoms in patients withdementia is as important for quality of life (QoL) asmanagement of pain in individuals with terminal cancer.Some behaviors are caused by environmental or physicalcauses, by interaction between individuals with dementiaand their caregivers, or by the dementing process itself.

New Ethics of Dementia Management

Caring for Patients with Terminal AD

The Canadian Review of Alzheimer’s Disease and Other Dementias • 13

developed, and adherence to theseguidelines results in decreased inci-dence of pressure ulcers in hospital-ized and/or critically ill patients.17

However, in nursing homes theadherence to these guidelines is rela-tively low and is characterized bylarge variations.

Shortness of breath may be themost disturbing symptom duringthe dying process, not only for thepatient, but also for family andcaregivers. The best way to manageshortness of breath is by adminis-tering morphine that will decreasethe respiratory drive. Low doses ofmorphine administered orally arevery useful during the dyingprocess because they will not onlydecrease dyspnea, but also preventmost pain.

End-of-life IssuesThere are several conditions thatmay be treated by aggressive or pal-liative medical interventions. Thedecision about their managementshould be made by a proxy beforeany crisis situation. However, tomake an informed decision, theproxy must have informationregarding the burdens and benefitsof these interventions.

Cardiopulmonary resuscitation(CPR). The immediate survival ofresuscitated nursing-home resi-dents is 18.5 %; only 3.4% are dis-charged from the hospital alive.19

The presence of dementia decreas-es the probability of successfulCPR by three times, as only 1% ofdemented residents suffering car-diac arrest can be expected to bedischarged alive from the hospital.

Even this potential benefit may notbe desirable in individuals withsevere dementia because CPR is astressful experience for those whosurvive. These patients may alsoexperience CPR-related injuries,such as broken ribs, and often haveto be on a respirator. Patients whoare discharged alive from the hospi-tal after CPR are much moreimpaired than they were before thecardiac arrest. Finally, the intensivecare unit environment is not con-ducive to appropriate care fordemented individuals who may

experience worsening confusionand often develop delirium.

Transfer to acute care setting.The transfer of demented individualsto an emergency room or hospitalexposes them to serious risks. Evencognitively intact hospitalized elder-ly individuals develop depressedpsychophysiological functioningthat includes confusion, falling, noteating and incontinence. Thesesymptoms are often managed bymedical interventions, such as psy-chotropic medications, restraints,nasogastric tubes, and urinarycatheters, which expose the patientto possible complications, includingthrombophle bitis, pulmonary embo-lus, aspiration pneumonia, urinary

tract infection and septic shock. Ahospital admission may not be nec-essary for treatment of pneumoniaand other infections because six-week mortality is lower in residentstreated in nursing homes than resi-dents treated in hospitals.20 Thus,transfer to an acute care settingshould be used only when it is con-sistent with the overall goals of careand not as a default option.

Treatment of generalized infec-tions. Effectiveness of antibiotic ther-apy is limited by the recurrent natureof infections in advanced dementia.

Antibiotic therapy does not prolongsurvival in cognitively impairedpatients who are unable to ambulateeven with assistance and who aremute.21 Antibiotics are also not nec-essary for maintenance of comfort indemented individuals because theircomfort can be maintained equallywell with analgesics, antipyretics andoxygen, if necessary.22

In addition, antibiotic use is notwithout adverse effects. Patientsmay develop gastrointestinal upset,diarrhea, allergic reactions, hyper-kalemia, agranulocytosis, and Clos -tridium difficile infection. Diag -nostic procedures, inclu ding blooddrawing and sputum suctioningnecessary for rational use of antibi-

It must be noted that behavioral problems that occurduring interactions between an individual with severe

dementia and a caregiver are often erroneously labeled asaggression. These outbursts are actually caused by a lack ofeffective communication between the patient with dementia

and their caregiver.

References:1. Hughes CP, Berg L, Danziger WL, et al. A

new clinical scale for the staging ofdementia. British J Psychiatry 1982;140:566-72.

2. Heyman A, Wilkinson WE, Hurwitz BJ, etal. Early-onset Alzheimer's disease:Clinical predictors of institutiona liza tionand death. Neurology 1987; 37:980-4.

3. Dooneief G, Marder K, Tang MX, et al.The clinical dementia rating scale:Community-based validation of 'profound'and 'terminal' stages. Neurology 1996;46:1746-9.

4. Hill JW, Futterman R, Duttagupta S, et al.Alzheimer's disease and related dementiasincrease costs of comorbidities in man-aged Medicare. Neurology 2002; 58:62-70.

5. Gillick M, Berkman S, Cullen L. A patient-centered approach to advance medicalplanning in the nursing home. JAGS 1999;47:227-30.

6. Volicer L, Berman SA, Cipolloni PB, et al.Persistent vegetative state in Alzheimerdisease-Does it exist? Arch Neurol 1997;54:1382-4.

7. Volicer L. Do we need another dementiapain scale? J Am Med Dir Assoc 2009;10(7):450-2.

8. Cohen-Mansfield J, Creedon M. Nursingstaff members’ perceptions of pain indica-tors in persons with severe dementia. ClinJ Pain 2002; 18:64-73.

9. Mahoney EK, Hurley AC, Volicer L, et al.Development and testing of the resistive-ness to care scale. Res Nurs Health 1999;22:27-38.

10. Volicer L, Van der Steen JT, Frijters D.Modifiable factors related to abusivebehaviors in nursing home residents withdementia. J Am Med Dir Assoc 2009;10(9):617-22.

11. Hurley AC, Volicer L, Camberg L, et al.Measurement of observed agitation inpatients with Alzheimer’s disease. J MentalHealth Aging 1999; 5:117-33.

12. Simard J. The End-of-Life Namaste CareProgram for People with Dementia.Baltimore, London, Winnipeg, Sydney:Health Professions Press, 2007.

13. Bassotti G, Villanacci V, Fisogni S, et al.Apoptotic phenomena are not a majorcause of enteric neuronal loss in constipat-ed patients with dementia.Neuropathology 2007; 27:67-72.

14. Volicer L, Lane P, Panke J, et al.Management of constipation in residentswith dementia: sorbitol effectiveness andcost. J Am Med Dir Assoc 2004; 5:239-41.

15. Mitchell SL, Kiely DK, Hamel MB, et al.Estimating prognosis for nursing home res-idents with advanced dementia. JAMA2004; 291:2734-40.

16 Baumgarten M, Margolis D, Gruber-Baldini AL, et al. Pressure ulcers and thetransition to long-term care. Advances inSkin Wound Care 2004; 16:299-304.

17. de Laat EH, Pickkers P, Schoonhoven L, etal. Guideline implementation results in adecrease of pressure ulcer incidence incritically ill patients. Crit Care Med 2007;35:815-20.

18. Redeling MD, Lee NE, Sorvillo F. Pressureulcers: more lethal than we thought? AdvSkin Wound Care. 2005; 18(7):367-72.

19. Finucane TE, Harper GM. Attemptingresuscitation in nursing homes: policyconsiderations. J Am Geriatr Soc 1999;47(10):1261-4.

20. Thompson RS, Hall NK, Szpiech M, et al.Treatments and outcomes of nursing-home-acquired pneumo nia. J Am BoardFam Pract 1997; 10:82-7.

21. Luchins DJ, Hanrahan P, Murphy K. Crite -ria for enrolling dementia patients in hos-pice. J Am Geriatr Soc 1997; 45:1054-9.

22. Van der Steen JT, Ooms ME, Van der WalG, et al. Pneumonia: The dementedpatient’s best friend? Discomfort after start-ing or withholding antibiotic treatment. JAm Geriatr Soc 2002; 50:1681-8.

23. Volicer L, Brandeis G, Hurley AC.Infections in advanced dementia. In:Volicer L, Hurley A, eds. Hospice Care forPatient with Advanced ProgressiveDementia. Springer Publishing Company,New York, 1998, pp. 29-47.

24. Morris J, Volicer L. Nutritional manage-ment of indivi duals with Alzheimer's dis-ease and other prog ressive dementias.Nutr Clin Care 2001; 4:148-55.

14 • The Canadian Review of Alzheimer’s Disease and Other Dementias

otics, can cause discomfort andconfusion in demen ted individualswho do not understand the need forthe procedure. Thus, the decision toadminister antibiotics to patientswith ad vanced dementia should takeinto consideration the recurrentnature of infections caused by per-sistent swallowing difficulties, aspi-ration and other factors predispos-ing these patients to the develop-ment of infections.23

Eating difficulties. Patients withterminal dementia are unable to feedthemselves and often develop swal-lowing difficulties that provokechoking on food and liquids. Theymay also start refusing food by notopening their mouth when they arefed. Of note, choking and food

refusal are often exhibited simulta-neously. Swallowing difficulties andchoking may be minimized by anadjustment to the texture of thepatient’s diet, and by replacing thinliquids with thick ones (e.g., yogurtinstead of milk). Food refusal oftenresponds to administration of anti-depressants of appetite stimulants.24

There is no evidence that long-term feeding tubes are beneficial inindividuals with advanced demen-tia. Tube feeding does not preventaspiration pneumonia and actuallymight increase its incidencebecause it does not prevent aspira-tion of nasopharyngeal secretionsand of regurgitated gastric contents.Tube feeding also does not preventoccurrence of other infections.

Nasogastric tubes may cause infec-tions of sinuses and middle ear, andgastrostomy tubes may cause cel-lulitis, abscesses and even necrotiz-ing fasciitis and myositis. Theimbalance between burdens andbenefits justifies a recommendationthat tube feeding generally shouldnot be used in individuals withadvanced dementia.

ConclusionsIn conclusion, the management ofterminal dementia should have as itsmain goal the maintenance of theoverall comfort of the patient. Thus,aggressive medical interventionsshould be limited and emphasisshould be placed on palliative careinterventions.

New Ethics of Dementia Management