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PALLIATIVE CARE IN ALZHEIMER'S DISEASECUIDADOS PALIATIVOS NA DOENA DE ALZHEIMER

David Gonalves Nordon , Mirian Soriano Moreno , Marco Tullio de Assis Figueiredo , Maria das Graas Mota Cruz de Assis Figueiredo1 2 3 3

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Rev.Fac. Cinc.Md.Sorocaba, v. 12, n.2, p.1 -3, 20101 - Acadmicodo cursode Medicina- FCMS/PUC-SP

2 - Enfermeiraformada - PUC-SP. Ps-graduandaem CentroCirrgicopelaEscoladeEnfermagem- HospitalIsraelitaAlbertEinstein.3 - Organizador(a)e professor(a) dasdisciplinaseletivas decuidadospaliativose tanatologia- UNIFESP

Contato:d-nordon@uol.com.brRecebido em 29/9/2009. Aceito para publicao em 11/3/2010.

Palliative care hasgenerallybeen a neglectedarea of medicineas it is commonly associated with terminal cancer. Palliativecare itself should start as soon as the patient and the doctorbecome aware of any incurable, progressive and degenerativedisease,suchasAlzheimer's.Theadequatecareofa patientwithAlzheimer'sdiseasewillallownot onlyhim/her,butalsohis/herfamily, togothrough thestagesof this disease comfortablyandrespectfully so as to end his life as a loved and cared forindividual, and with as little discomfort as possible. In this

articlewewilldiscusswhatisnecessaryforthat.Key-words:hospicecare,neurodegenerativediseases,Alzheimerdisease.

Cuidados paliativos umarea geralmente negligenciada damedicina,j que comumenteassociadaaocnceremestgioterminal. Por outro lado, ele comea assim que o paciente e omdico se tornam cientes de uma doena incurvel,progressiva e degenerativa, como a doena de Alzheimer. Ocuidado adequado de um paciente com esta doena irpermitir que no somente ele, mas tambm a sua famlia,caminhe confortvel e respeitavelmente atravs dos degrausdesta doena e termine a sua vida como um ser humanoamado e cuidado, com to pouco desconforto quantopossvel. Neste artigo vamos discutir o que necessrio paratal.Descritores: cuidados paliativos, doenas neurodegenerativas,doenadeAlzheimer.

Thegrowingageingof thepopulationhasbeenincreasingthe prevalence of all degenerative diseases. Therefore, havingelderly with progressive incapacitating diseases taken care for in

long-stayinstitutionsisbecomingmoreandmorecommon.Among these incapacitating diseases, neurodegenerative

disorders are the ones that require more attention even thoughmostpartof the palliative carehas been, upuntil now, directed tocancer. Parkinson's disease, forinstance,hasa developing coursethat causes severe debilitation to the patient, who usually endshis/her days lyingona bed, incapableofmovingand with severerespiratoryproblems.

Alzheimer's disease, however, only leads to motordisabilities at its most developed stages. During the years oreven decades before that, the person can move around withoutmuch difficulty and is considerably active though veryconfused, what makes him/her a burden to the family.

Therefore,itisnotatalluncommonforthefamiliestohavetheirbeloved ones in an institution. Mostly, they cannot supply therequiredcare for the person and, on behalf of the family's well-being, they decide it might be better if someone else becomesresponsible for the sick one. Nevertheless, it is also not

uncommon for the Alzheimer's diseased person to becomeprogressively less and less visited by the family, as the disease

progresses; for, whywouldanyonevisitsomeonewhodoesnotrememberhim/heranymore?

It is important to mention that palliative care does notstart at the moment you realize the patient is going to die, but itstarts at the moment the diagnosis of an incurable disease isfound out. From then on goals and care are to be decidedregarding the progression of the disease, and mainly thepatient'swell-beingand dignity.

To promote dignity is to maintain the person's social

status and confirm him/her his/her social role, even whenmental or physical deterioration occurs; to encourage choicesand decisions; to know the person always when it is possiblebefore starting his/her care, andaskforhis/her approval for the

procedures to be performed. And how can we maintain thedignity ofa patient who no longercan takecareof his/her basicneedsaloneandnolongerrecognizeshis/her family?

Chochinov defines four principles to maintain apatient's dignity. Withthose principles even thesepatients,whoso many times seem to be deprived of their dignity, may berespectfullyandpalliativelly takencareof.A. Attitude: having human attitudes to the patient,

respecting his/her single freedom, without stereotypes

orprejudice;B. Behavior: being kind and respectful forwards thepatient;

C. Compassion: showing compassion and understandingof the problem, not only from the professional point ofview,butalsofromthehumanone;and

D. Dialog: based on the knowledge of the patient, usingpsychotherapeuticapproaches.Taking these basic and extremely important concepts

as a foundation for the palliative care, the other details of thecarewill flownaturally.

Thelevelofassistance necessaryfor thepersonalhygienevaries inAlzheimer'sdiseaseaccordingto itsseverity. Individualswho are capable of taking a shower, brushing their teeth andchanging their clothes by themselves should be stimulated to doso. If it is necessary, they may be helped throughout thesefunctions,upuntilapointwhentheyarenotcapableatalloftakingcareoftheirownhygiene.That iswhenthecaretakers shoulddo itfor them.A bathonthe bed, ifpossible, mustberestrictedtothosepatients who are too weak and cannot get out of bed even on awheelchair.

Evenatthismoment,basichygienemustnotbeneglected.

ABSTRACT

RESUMO

INTRODUCTION

HygieneandComfort

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Comfort fora patient inpalliative care isvery important.Although in the first stages of the disease the patient is notseated all the time, as the disease progresses (and also as a sideeffect of medication) it will be natural for him to stay seated in

the same position for long periods of time. Therefore, it isimportant to stimulate the patient to change position whenpossible or tochangeit passively, soas toavoidpressureulcers.Comfortmustbeevaluatedandaimedfor,forthereisnouseifinorder toavoidan ulcer the patient muststayina painful positionforalongtime.

As often as possible the patient should be stimulated tofeed him/herself, or if it is not possible, to be fed orally by acaretaker no matter how long it takes. Patients withneurodegenerative diseases generally present some kind ofswallowing difficulty, so it is natural that they take longer to be

fed.As a result,diet must be adequate, being prepared in suchaway it is easyto beswallowed (in the formof a cream or liquid,whennecessary).

Feeding is the first stage in the human being'sdevelopment and is an essential part of his/her psychicconstitution. To be deprived of this pleasure is practically thesame as being deprived of his/her own humanity, even for apatient who is not lucid enough to communicate. Feedingthrough nasogastric tube or even parenteral nutrition must be,thus,restrictedtowhenthereisnootheroption.

In these cases when the patient is in an Intensive CareUnit, for instance, the time he/she is going to spend there mustbe taken into account. It is recommended that if he/she is

expected to stay longer than two weeks, a colostomy be made,instead of a nasogastric tube, in order to avoid lesions and/orstenosis of the esophagus and subsequent incapacity of oralnutrition.

Patients with Alzheimer's disease in its final stagepresenting secondary parkinsonism will mandatorily need abiggerintakeofcaloriesandproteins thannormal.Neverthelessthese patients are usually fed even less than normal due to thedifficulties related to thiscondition. It is essential that attentionbepaid to this difficulty and that it be avoided at all cost. Thesepatients, when lucid, may claim that they are hungry all thetime; when they do not, it is possible to perceive so theirconstantlossofweight,inspiteofbeingfed.

Patients with Alzheimer's disease usually takeanticholinesterasic medication. It is known that such drugscause cholinergicsymptoms andmaypredispose to drymouth,constipationand delusions.Somespecialcaremust betaken:- Constant hydration, especially because the elderly aremore prone to developdehydration as they tend to feel lessthirsty;- Measures to stimulate defecation such as laxatives thatincrease the volume of feces (fibers) or that facilitate theirmovement (surfactants, such as sodium docusate; lubricatinglaxatives must be avoided in patients with swallowing

difficulties,dueto thepossibilityofaspiration); colonic mucosastimulants (bisacodil), which are particularly useful inconstipation due to opioids; and, finally, rectal laxatives whenall other measures have proved ineffective or cannot be used orthere is feces impaction. It is important to note that, in case of

fecaloma,usingorallaxativesmaycauseseverepainandleadtonoresultatall. Then anintestinalcleanserormanual removal ofthefecesisneeded;and- In case of delusions the cause must be identified

(alterations of the medication dosage, medications interaction,dehydration or organic diseases,psychiatriccommorbiditiesordelirium)andthecorrecttreatmentmustbemade.

Delirium is the alteration of the conscience level,quantitatively (when there is lowering of the level) and/orqualitatively (changes of the conscience and its clearness). It isoften characterized by time andspace disorientation, delusionsand/or hallucinations, and fluctuating course during the day, being worse at sundown (sundown effect). It may behyperactive, hypoactive (when it causes more lethargy anddrowsiness)orboth.

The main causes of delirium are organic and must bethus looked for: dehydration, constipation, urinary retentionand infections in general, being urinary the most prevalent.Drug induced causes cannot be overlooked; besides, it ispossible that an elderly embedded in a room without stimuli orwith excessive stimuli comes to develop delirium without anycausalfactorinamatterofhours.

The treatment must firstly be directed to the cause inorder to stop it; secondly, in case it is not enough neurolepticand/or benzodiazepines may be used to control the crisis.Always remember to use those with shorter half-life, whichcausefewerside-effects.

It is possible to prevent it by preventing the above

related causal factors and keeping the patient with adequatestimuli and information, such as day, hour and sunlight, apartfromthe constantcontact withthecaretakers.

The spirituality of patients in palliative care must bealways taken into account. What is important for the patient inthe process of sickness and death? It may be a hasteningquestion when we think of a patient at the beginning of thedisease; however, when we think that the natural course of thisdisease results in a progressive cognitive deterioration it isimportantfortheAlzheimer'spatient, to have a courseof actionlaid out bearing in mind since the beginning what is important

forhim/her.Does he/shehave anyreligiousbelief?Anyritual? How

important is religion to him/her? Would it be benefitial to takehim/her to church? Or to make a religious reunion in the long-stayinstitution?

Besides, as soon as it is necessaryandpreferably beforethe patient becomes irreversibly demented, it is important toknow what he/she wishes for his death: to be buried orcremated?Howwill his/her funeral be?Who shouldbe presentat the momentof his/her death?Doeshe/she want any religiousleadertobecalled?

During the progression of a terminal disease, it is quitevisible that thepatient becomes graduallymore awareofhis/her

terminality, thus making it important for the caretaking team tohelp the patient then. The Alzheimer's patient, however, maysomehow seemsparedof it, since in the final stageshe/she maybe so little lucid that seem unable to understand what ishappening.

Feeding

Medication

Delirium

Spirituality

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In these cases it is up to the caretaking team, whichprobably has known the patient for several years by then, toevaluatehowhe/sheis feeling; ifhe/sheis spirituallycomfortableand if all his/her wishes, previously determined, have beenanswered,beforethemomentofdeathcomes.

Created by Joyce Simardapproximately five years ago,this program aims to honour the innern spirit above all as theworditselfNamastesays.

It involves thecreation ofa roomspecifically for thatbyusing nature sounds, aromas, stuffed animals, touchable andstimulatingsurfaces, andfurniturefor thepatient'scomfort.

Duringthemorning and/or in theafternoonthesepatientsare served by one or more specific caretakers depending on thedemand, andreceive corporealcare, such asshaving orcreamingthe face, legs and feet, everything very slowly and always

accompanied by smooth conversation aiming mainly at theprocessitself,ratherthantheresults.

Through this typeofcare, thedementedpatientsbecomecalm and accommodated, receiving what they need more:human attention and warmth. Their relatives, when they cometo visit, may be invited to help with the tasks or feed themtasteful creamy foods such as puddings, for instance and as aresult, they feel very grateful forthefact that their beloved onesarebeingwelltakencareof.

Moreover, through this type of caring we can achievethemottoof palliativecare: topreservethepatient'sdignity.

The most important part in the palliative care ispreserving the dignity of the patient and bringing him comfortand well being, no matter how severe the disease is. Through

simple and small things, such as basic hygiene, adequatenurturing, comfortable furniture, adequate and smooth stimuliandmost importantofallhumanattentionandcare it ispossibleforus,healthprofessionals asa group,to promote acomfortableand honored care for those who are so loved by their families.We cannot forget that, eventually, we might be the ones on theothersideinneedofthesamecare.TheNamaste Care Program

CONCLUSION

REFERENCES

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1. Simard J. Silent and invisible; nursing home residents withadvanceddementia.JNutrHealthAgeing.2007;11(6):484-8.

2. Holmerov I, JusakovB, Kalvach Z,RohanovE, RokosovM,VankovH. Dignitiyand palliative care indementia.J NutrHealthAging. 2007;11(6):489-94.

3. Chochinov HM. Dignity and the essence of medicine: the A,B,C,andD ofdignityconservingcare. BMJ.2007;335:184-7.

4. Pereira I, Sera CTM, Caromano FA. Higiene e conforto. In:Oliveira RA, coordenador. Cuidado paliativo. So Paulo:

Conselho Regional de Medicina do Estado de So Paulo;2008. p.195-219.

5. Carvalho RT, Taquemori LY. Nutrio e hidratao. In:Oliveira RA, coordenador. Cuidado paliativo. So Paulo:Conselho Regional de Medicina do Estado de So Paulo;2008. p.221-57.

6. Hatanaka VMA. Constipao e diarria. In: Oliveira RA,coordenador. Cuidado paliativo. So Paulo: ConselhoRegional de Medicina do Estado de So Paulo; 2008. p. 427-44.

7. Figueiredo MGMCA. Delirium. In: Oliveira RA,coordenador. Cuidado paliativo. So Paulo: ConselhoRegionalde Medicinado EstadodeSoPaulo;2008.p.513-8.

8. Saporetti LA, Aitken EVP, Kovcs MJ, Franco MHP.Espiritualidade, morte e luto. In: Oliveira RA, coordenador.

Cuidado paliativo. So Paulo: Conselho Regional deMedicinado EstadodeSoPaulo;2008.p.519-70.

9. Volicer L. Goals ofcare in advanced dementia: quality of life,dignityandcomfort.J NutrHealthAging. 2007; 11(6):481.

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