Sunteți pe pagina 1din 16

SOCIETATEA ROMN

STRATEGIA I
PLANUL NAIONAL PENTRU DEMENE,
CU PRECDERE DEMENA DIN
BOALA ALZHEIMER
2014 - 2020
NATIONAL DEMENTIA STRATEGY
2014 - 2020

I. Consideraii preliminare
1. De ce Societatea Romn Alzheimer consider imperios necesar elaborarea Strategiei
i a Planului de Aciuni pe perioada 2014 - 2020

Cea de-a 66-a Adunare General a Organizaiei Mondiale a Sntii a adoptat i a dat
publicitii n luna mai 2013 Planul de Aciuni privind sntatea mintal pentru perioada 2013 - 2020,
care se adaug documentelor programatice ale organismelor internaionale privind responsabilitile
majore ce revin factorilor de decizie din toate rile lumii privind populaia afectat de tulburri ale
sntii mintale. Planul conine o serie de recomandri pentru aciuni necesare a fi ntreprinse, pn
n anul 2020, de rile membre, cu referire special la necesitatea de actualizare i completare a
planurilor naionale de aciuni, n funcie de previziunile privind evoluia strii sntii mintale.
De asemenea, Rezoluia Parlamentului European din 19 ianuarie 2011, cu privire la INIIATIVA
EUROPEAN PRIVIND BOALA ALZHEIMER I ALTE DEMENE (2010 - 2084 (INI)), a formulat 66 de
recomandri ctre statele membre, ctre Consiliul i Comisia Europei. Acestea se adreseaz, n
principal, factorilor de decizie politic din rile respective, dar nu numai, avnd n vedere actualizarea
i completarea planurilor naionale, amendarea cadrului legislativ, planificarea resurselor, coordonarea
i colaborarea ntre factorii responsabili cu implementarea planurilor de aciune, dezvoltarea sistemelor
de incluziune social i sprijin a persoanelor afectate de boli neurodegenerative.

n Romnia, pe parcursul ultimilor dou decenii, Societatea Romn Alzheimer, ca asociaie


profesional, apolitic, a fost preocupat, permanent, de iniierea unui dialog cu factorii de decizie
pentru stabilirea celor mai bune modaliti de abordare a problematicii demenelor i bolii Alzheimer
pentru a rspunde, pe de o parte, prevalenei n cretere a acestor afeciuni, iar pe de alt parte,
pentru a ne alinia la cerinele instituiilor internaionale i europene din care facem parte.

Din pcate, pn n acest moment, dei organizaiile profesionale au iniiat un dialog


pluripartit cu factori de decizie la nivel politic, guvernamental i parlamentar, pn n prezent, nu a fost
elaborat o Strategie i un Plan Naional de Aciune, ceea ce a contribuit la o lips de coeren la nivelul
societii n ceea ce privete promovarea unor obiective, chiar minimale.
2. Misiunea Societii Romne Alzheimer
In cei 22 de ani de existen, Societatea Romn Alzheimer s-a implicat activ pe plan naional,
european i internaional n programe, proiecte, aciuni i campanii menite s rspund cerinelor
acestei categorii de populaie tot mai numeroase, cu o patologie special din punct de vedere medical
i cu implicaii majore sub aspect social, familial i economico-financiar.
Dei activitatea Societii Romne Alzheimer a nceput sub auspiciile unei perioade dificile n Romnia,
din multitudinea demersurilor ntreprinse, menionm, n principal, pe cele care au contribuit la
asocierea noastr la demersurile externe, precum i la alinierea eforturilor pentru ndeplinirea
recomandrilor organismelor i organizaiilor externe privind elaborarea unor strategii i planuri
naionale, a politicilor publice i a planurilor de msuri pentru realizarea obiectivelor propuse n
domeniul sntii mintale.
In toi aceti ani, Societatea Romn Alzheimer a fost reprezentat la peste 200 de simpozioane,
congrese, conferine naionale i internaionale, fiind chiar ea organizatoarea celei de-a XI-a Conferine
Alzheimer Europe din 11 - 13 iunie 2001, prima de acest fel din Sud-Estul Europei, la care au participat
specialiti din Europa, Australia, Canada, Africa de Sud i Noua Zeeland.
Activitile pe plan extern au contribuit la dobndirea recunoaterii internaionale a Societii Romne
Alzheimer. In anul 1994, dup o evaluare sever i ca urmare a unui proces de monitorizare foarte
atent, Societatea Romn Alzheimer a fost admis ca membru cu drepturi depline n Alzheimer
Disease International, iar n anul 1995 a devenit membru al organizaiei Alzheimer Europe.
Pe plan intern, preocuprile s-au concentrat, n principal, pe crearea unei percepii publice i stimularea
interesului societii civile spre aceast problem pentru o implicare mai activ i vizibil, pornindu-se
de la constatarea c, dei n alte ri lucrurile evoluau mult mai consistent, n Romnia, chiar dac
fost ignorat, a fost insuficient abordat la nivel societal, ntre partenerii publici i privai, n contextul
1

n care cercetrile privind perspectivele mbtrnirii populaiei i creterea prevalenei bolilor


neurodegenerative le identificau ca fiind fenomene din cele mai provocatoare pentru sfritul de secol
XX i pentru secolul XXI.
Societatea Romn Alzheimer a realizat numeroase programe care au urmrit dezvoltarea de modele
de servicii de ngrijire (centre de zi, asisten la domiciliu, programe sociale de ajutor), a desfurat
programe de educaie i instruire pentru personalul medical, pentru ngrijitorii profesioniti i
neprofesioniti, a elaborat materiale informative, a lansat largi campanii de informare i educaie, a
iniiat centrul pilot pentru depistarea i diagnosticul precoce al tulburrilor cognitive, Centrul Memoriei
din Bucureti.
Dar n absena dezvoltrii unui sistem integrat de servicii la nivel local i naional, multe dintre aceste
iniiative au fost, fie ntrerupte, fie au continuat, i-au dovedit utilitatea i nc supravieuiesc, dar
rmn iniiative izolate, dovedindu-se intervenii cu impact relativ redus.
n consecin apreciem c ne confruntm cu o realitate care, sintetic, se prezint astfel:
- n politica de sntate public din Romnia, demena nu este declarat o prioritate;
- exist ntrzieri mari n ceea ce privete adoptarea unor documente oficiale privind
legislaia specific domeniului;
- cadrul instituional pentru prestarea de servicii medicale i de ngrijire se afl ntr-o faz
incipient;
- sistemele de sprijin social pentru familia/ ngrijitorii persoanelor cu demen sunt
insuficiente i inadecvate;
- susinerea financiar nu constituie un element luat n considerare i individualizat
n alocarea bugetar la nivel naional i/ sau local;
- lipsa de stimulare a cercetrii clinice i a celei fundamentale, precum i a unui volum
suficient de date epidemiologice constituie o constrngere n dezvoltarea unor politici secveniale
specifice bolilor neurodegenerative, respectiv demenei i bolii Alzheimer.
3. Contextul propunerii de a aciona imediat i coerent pentru realizarea Strategiei i a
Planului de Aciuni pentru perioada 2014 - 2020
Organizaia Mondial a Sntii a prezentat, pentru anul 2010, o cifr de 35,5 milioane de persoane
suferind de demen. Anual se nregistreaz la nivel global 7,7 milioane de cazuri noi, unul la fiecare 4
secunde. Costurile anuale estimate se ridic la 604 miliarde de dolari, cu o tendin de cretere
evident cauzat de creterea prevalenei bolii determinat, pe de o parte de procesul de mbtrnire
a populaiei i, pe de alt parte, de asocierea altor factori la avansarea n vrst, precum bolile cronice,
cele cardiovasculare, tulburrile psihice, mergnd pn la influenele crizei financiare globale asupra
strii materiale i condiiilor de via ale populaiei.
n Europa, numrul persoanelor care sufer de demen este estimat la 9,9 milioane, reprezentnd
28% din totalul persoanelor la nivel mondial. Marea majoritate a acestora a fost diagnosticat cu
Alzheimer. Costurile totale directe, aferente ngrijirii medicale a acestei categorii de bolnavi, se ridic la
circa 135 miliarde dolari.
In toate documentele oficiale ale O.M.S., ale Alzheimers Disease International, ale Alzheimer Europe
se precizeaz imperativ c demena trebuie recunoscut ca o prioritate pe plan naional n
politicile de sntate public i a celor sociale.
In acelai timp, O.M.S. remarc faptul c sistemele de sntate naionale nu au gsit i nu au nc un
rspuns corespunztor pentru mbuntirea atitudinii publice i profesionale fa de aceast patologie,
accesibilitatea la medicina primar fiind redus, iar investiiile n sistemele de sntate i de asisten
social cu aceast destinaie sunt insuficiente.
n Romnia, din aproximativ 270.000 de persoane suferinde, doar 35.000 sunt diagnosticate. Boala
Alzheimer i celelalte forme de demen sunt, cel mai des, diagnosticate n fazele tardive. Dei exist
un interes tot mai mare din partea medicilor specialiti pentru diagnosticarea timpurie a bolii, modul de
2

organizare a sistemului medical nu favorizeaz un asemenea demers. Pe de alt parte, personalul din
sectorul serviciilor, din instituiile publice i private, este redus i nepregtit pentru a se confrunta cu
nevoile specifice unei asemenea categorii de pacieni, gradul de acoperire a cererilor se ridic la cel
mult 10%. Nu exist servicii comunitare i de ngrijire la domiciliu dect sporadic, fr caracter
permanent i foarte costisitoare.
Romnia se ncadreaz n acest tablou general la nivel global, dar, trebuie s menionm c exist
rmneri n urm semnificative n implementarea recomandrilor organismelor Uniunii Europene fa
de alte state membre ale Uniunii, n configurarea obiectivelor strategice i ale unui plan de aciune, n
alinierea legislaiei, precum i al adecvrii construciei instituionale medicale de diagnosticare i
tratament, dar i serioase rmneri n urm n ceea ce privete sistemele de sprijin familial i
comunitar.
II. Obiectivele i principiile Strategiei i Planului de Aciune pe perioada 2014 - 2020
Principalele obiective ale Strategiei i Planului de Aciune pe perioada 2014 - 2020 urmresc
respectarea conformitii cu cele prevzute n documentele programatice oficial adoptate de
Organizaia Mondial a Sntii i instituiile Uniunii Europene, n principal, Parlamentul European,
Consiliul i Comisia European. Prin Rezoluia Parlamentului European 2010 / 2084, care are la baz
Recomandarea Consiliului privind msurile de combatere a bolilor neurodegenerative,
ndeosebi boala Alzheimer, se atrage atenia statelor membre asupra necesitii de a elabora politici
specifice de prevenire, diagnosticare i tratament a bolii.
Necesitatea elaborrii Strategiei i a Planului de Aciune pe perioada 2014 - 2020, n viziunea
Societii Romne Alzheimer, rezult, nu numai din nevoia de recuperare a ntrzierilor menionate
anterior, dar n principal, ca prin colaborare pluripartit ntre organizaiile profesionale i tiinifice din
domeniul medical, organizaiile de pacieni, alte organisme i operatori importani din sistemul de
sntate i factorii de decizie politic, s contribuie la atingerea obiectivelor recomandate a fi realizate
la orizontul anului 2020 n documentele programatice ale organismelor internaionale i europene.
Principiile care trebuie respectate la formularea obiectivelor strategice i a planurilor de aciune
constau n:
- Asigurarea accesului tuturor celor care manifest simptomele cognitive, ale oricrei forme
de demen, la serviciile medicale i de asisten social;
- Respectarea ntocmai a prevederilor Conveniei privind drepturile persoanelor cu
disabiliti;
- Promovarea abordrii multidisciplinare i aplicarea celor mai bune practici, inclusiv a
rezultatelor cercetrilor clinice inovatoare;
- Abordarea multisectorial. Constnd n promovarea parteneriatului ntre instituiile publice
din domeniul sntii, educaiei, ocuprii forei de munc, justiie i alte sectoare relevante, pe de o
parte, precum i ntre acestea i sectorul privat, n raport de condiiile concrete ale fiecrei ri;
- Implicarea persoanelor afectate de bolile neurodegenerative n campanii, formularea de
politici specifice, stabilirea prioritilor de aciune la nivel naional i/ sau local, evaluarea necesitilor
proprii i, la nivel comunitar, monitorizarea obligaiilor asumate de asociaiile profesionale, autoriti
guvernamentale i societatea civil.
Obiectivul principal al Strategiei i Planului de Aciune pe perioada 2014 - 2020 pentru Romnia
const n creterea interesului i a contribuiei factorilor responsabili pe plan naional,
regional i local pentru mbuntirea sntii mintale a populaiei prin:
- recunoaterea bolilor neurodegenerative, a demenei i a bolii Alzheimer, ca prioriti ale
politicii de sntate public;
- diminuarea incidenei bolilor neurodegenerative;
- depistarea timpurie a simptomelor cognitive ale demenei;
- creterea accesibilitii pacienilor la tratament, ngrijiri adecvate i tehnici de reabilitare/
diminuare a efectelor negative asupra calitii vieii lor.
3

Obiectivele specifice constau n:


a) Stabilirea unui mecanism de coordonare a activitilor diferitelor autoriti, instituii i
organisme implicate n implementarea aciunilor stabilite pentru asigurarea unei bune
guvernri n domeniul promovrii sntii mintale.
Pentru atingerea acesui obiectiv sunt necesare, aciuni prealabile de evaluare a:
- resurselor umane (numrul persoanelor calificate i a tipului lor de pregtire);
- resurselor materiale (instituii vechi i noi, de stat i private, de tip spitalicesc sau
ambulator) care ar putea fi folosite n derularea proiectelor pentru acoperirea nevoilor
pacienilor n diferite stadii ale boli;
- resurselor financiare bugetare i non-bugetare alocabile domeniului;
- realizarea unui Registru al persoanelor identificate cu demena Alzheimer, n care vor fi
nscrise cu o meniune special cazurile sociale (bolnavi fr familie).
Dei responsabilitatea privind asigurarea unei politici de sntate publice eficiente, evaluat prin
calitatea construciei instituionale i a cadrului legislativ, a alocrii i utilizrii resurselor de finanare,
gradul de dezvoltare a sistemului de servicii specifice cade, n principal, n sarcina guvernului,
asigurarea unei bune guvernri presupune extinderea sferei participanilor la elaborarea i
implementarea strategiei i planului naional cu organizaiile neguvernamentale, asociaii profesionale,
organizaii ale pacienilor, familiilor i ngrijitorilor, alte structuri de asociere specifice create n scopul
satisfacerii corespunztoare a nevoilor pacienilor.
b) Infiinarea unui numr semnificativ de uniti specializate, de diagnosticare precoce a
demenei i bolii Alzheimer, de tipul Centrului Memoriei care s poat prelua solicitrile de
examinare tot mai presante ale populaiei din zona tulburrilor cognitive. nfiinarea unor
asemenea centre este necesar deoarece:
- permite diagnosticul diferenial al demenei de alte boli care pot fi tratate i care sunt
potenial reversibile;
- permite pacientului i familiei luarea unor msuri legale de protecie pn la
pierderea capacitii de decizie;
- permite planificarea financiar a resuselor familiei pentru prezent i viitor;
- permite pacientului s hotrasc mpreun cu familia care ar fi cea mai potrivit metod
de ngrijire;
- permite pacientului s i organizeze viaa n cunotin de cauz;
- asigur consilierea i sprijinirea familiilor care au bolnavi n ngrijire.
Acest tip de uniti medicale trebuie introduse n reeaua standardizat de instituii de sntate i
recunoscute ca facnd parte din reeaua public de sntate.
c) dezvoltarea unei reele de servicii de baz pentru persoanele cu demen i pentru
ngrijitori care trebuie s fie variate, flexibile, uor de accesat i s asigure continuitatea
ngrijirii. Recunoscnd marea diversitate a serviciilor de baz necesare ngrijirii bolnavilor,
dificultile de alocare a resurselor umane, materiale i financiare, Strategia i Planul
Naional de Aciune trebuie s stabileasc, prioriti, pe etape, pentru ca la nivelul anului
2020, Romnia s dispun, cel puin, de urmtoarele tipuri de servicii:
- evaluare cognitiv, diagnostic i tratament;
- servicii de suport pentru stadiile incipiente ale bolii;
- servicii de ngrijire la nivelul comunitilor locale i/ sau la domiciliu - permanente
(de lung durat) i/ sau temporare
- cmine - spital de ngrijire terminal.
d) elaborarea unor programe de informare, educare i sensibilizare a opiniei publice privind
demena i boala Alzheimer pentru recunoaterea primelor semnale ale bolii, obinerea
ntr-o perioad minimal de timp a unui diagnostic timpuriu, precum i demersurile
favoriza te de o legislaie adecvat situaiilor de necesitate pentru respectarea accesului la
4

tratament i la servicii nc din primele faze.


e) stimularea cercetrii tiinifice naionale i participarea la programele comunitare
europene i internaionale pentru:
- promovarea celor mai bune practici i elaborarea standardelor de calitate pentru tratament,
servicii de ngrijire individual, familial i la nivel comunitar;
- mbuntirea procedurilor operative standard cu sisteme de indicatori ce caracterizeaz
stadiile bolii, pentru a facilita descoperirea unor noi medicamente i creterea eficacitii
procedurilor de ngrijire prin recurgerea la mijloacele tehnologice existente sau a unora noi,
adecvate situaiilor concrete;
- dezvoltarea bazelor de date epidemiologice i clinice la nivel naional i transnaional
pentru a sprijini cercetarea clinic direct, stabilirea i actualizarea criteriilor de depistare i
a factorilor de risc ale bolii;
- multiplicarea cercetrilor privind calitatea vieii categoriei populaiei afectate de boli
neurodegenerative i a familiilor sociale, pe baza rezultatelor crora le pot fi evaluate
efectele economice i necesarul de resurse pentru diminuarea impactului economic, social
i emoional la nivel societal, familial i individual.
f) destigmatizarea persoanelor cu demen
III. Coordonare i asumare de responsabilitai n elaborarea Strategiei i Planului de
Aciuni
Apreciem c Strategia i Planul de Aciuni privind bolile neurodegenerative, cu precdere a bolii
Alzheimer, trebuie abordat n contextul politicii publice privind sntatea populaiei, reprezentnd o
component major a acesteia. Avnd acest caracter, coordonarea elaborrii acestor documente,
revine, n principal, autoritilor guvernamentale cu responsabiliti directe n acest domeniu.
Experiena statelor membre ale Uniunii Europene arat c, aproape fr excepie, aceast atribuie
revine ministerelor de resort din rile respective, care au creat structuri instituionale pentru realizarea
unei politici integrate a tuturor instituiilor, asociaiilor, organizaiilor guvernamentale i
neguvernamentale cu preocupri specifice n domeniul demenei i bolii Alzheimer.
Practic, rezultatul acestui demers const, nu numai n elaborarea documentelor naionale, n acord cu
recomandrile internaionale i europene, ci i crearea unui consens la nivel societal pentru o abordare
coerent, cu obiective clar definite pe termen scurt, mediu i lung, privind:
dezvoltarea sistemelor de ngrijire medico-social a persoanelor afectate de aceste maladii;
promovarea i stimularea cercetrii tiinifice clinice i fundamentale;
alocarea resurselor financiare, umane i materiale necesare tratrii i ngrijirii bolnavilor n
uniti specializate, n familie sau sub alte formule considerate a fi adecvate diferitelor stadii
de evoluie ale bolii;
formele de educare i/ sau instruire, respectiv calificare a diferitelor categorii de personal
care lucreaz cu pacienii, indiferent n ce calitate (profesii medicale i/ sau paramedicale);
instruirea, sprijinirea i monitorizarea ngrijitorilor din cadrul familiei sau a altor ngrijitori
informai pentru o bun ngrijire i o utilizare competent i eficace a resurselor ce pot fi
disponibilizate n diferitele contexte economice ale rilor n cauz;
implicarea comunitilor locale n prestarea de servicii integrate, n comuniti i acas, att
n mediu urban ct i n mediul rural;
recunoaterea asociaiilor i organizaiilor care i concentreaz activitatea pe tratarea i
ngrijirea pacienilor cu demen i boala Alzheimer drept principali parteneri pentru:
- definirea recomandrilor i a celor mai bune practici la un nivel ct mai apropiat
de pacient;
- prezentarea nevoilor persoanelor care sufer de demen i ale ngrijitorilor
acestora factorilor de decizie politic;
- creterea gradului de sensibilizare public i profesional cu privire la bolile
neurodegenerative.
5

n viziunea Societii Romne Alzheimer i a Alianei Naionale Alzheimer, arhitectura instituional


pentru elaborarea de politici specifice pentru bolile neurodegenerative, ar putea fi structurat pe cel
puin patru paliere:
un Comitet interministerial, care se va nfiina, n baza unei Hotrri a Guvernului
Romniei, care va fi format din reprezentanii tuturor ministerelor implicate, avnd atribuii
corespunztoare obiectivelor menionate.
Acest Comitet ar trebui nvestit cu putere de decizie privind obiectivele, aciunile, msurile i alocarea
resurselor coninute n proiectul Strategiei i Planului Naional de Aciuni privind bolile
neurodegenerative, urmnd ca aceste documente s fie supuse aprobrii Guvernului i incluse n
Programul acestuia, precum i secvenial n politicile i programele sectoriale incidente, precum ar fi
politica social, politica n domeniul educaiei i cercetrii, politica demografic, politica
financiar-bugetar, adoptarea legislaiei necesare pentru transpunerea aciunilor i msurilor adoptate
etc.
Comitetul interministerial ar trebui s beneficieze de activitile unui Subcomitet de strategie care s
analizeze, s coreleze i s definitiveze documentele menionate;
Grupuri de lucru, constituite din reprezentani ai autoritilor, organizaiilor i
asociaiilor ale societii civile, al cror mandat va fi stabilit n funcie de cerinele de investigare,
analiz i formulare de propuneri corespunznd etapelor i obiectivelor demersului de abordare
sistematic, profesionist i responsabil a nevoilor i calitii vieii persoanelor afectate, precum:
- Grup de lucru pentru elaborarea bazei primare de informaii necesare constituirii
Registrului Bolnavilor, inventarierea bazei materiale existente (centre specializate de diagnostic i
tratament, numr de paturi n spitale, centre de zi, tipuri de servicii comunitare), evaluarea personalului calificat disponibil pentru acest domeniu etc. Pe baza datelor culese se va putea realiza o analiz
pertinent a situaiei din Romnia, care va permite identificarea prioritilor i stabilirea de aciuni
nscrise n Planul Naional de Aciuni;
- Grup de lucru pentru elaborarea cadrului legislativ care s defineasc drepturile
persoanelor afectate de demen i s reglementeze cadrul legal pentru ngrijirea acestora,
transferul de competene pentru situaiile n care pacienii nu mai pot decide independent n ceea ce
privete tratamentul, ngrijirea, starea patrimonial etc. Grupul de lucru ar trebui s abordeze, n egal
msur, i aspectele privitoare la familie i ngrijitori;
- Grup de lucru pentru evaluarea costurilor medicale pe care le implic bolile
neurodegenerative, n special demena i boala Alzheimer care s aib n vedere:
costurile medicale directe (costurile din sistemul de sntate cu specialiti,
medicamente, consultaii, vizite medicale, controale periodice);
costurile sociale directe care se refer la costurile serviciilor din afara sistemului
medical asigurate la nivel comunitar, ngrijirea la domiciliu, plasarea pacienilor n
rezidene specializate;
costuri informale cauzate de ntreruperile temporare sau definitive ale
activitilor i suplinirea lor, efecte colaterale asupra familiilor i / sau ngrijitorilor,
eventuale decese.
- Grup de lucru pentru identificarea, cunoaterea i promovarea celor mai bune
practici cu privire la respectarea drepturilor persoanelor vulnerabile, combaterea abuzului asupra
persoanelor care sufer de demen, destigmatizarea acestora;
- Grup de lucru pentru elaborarea unei strategii de sensibilizare a opiniei publice
privind aceste boli, diseminarea informaiilor medicale primare de percepere a evidenei apariiei
i/ sau a modificrilor comportamentale la persoane din familie sau vecintate.
Grupuri de sprijin pentru cadrele medicale salariate n instituii, pentru rudele
pacienilor spitalizai, pentru rudele care asist pacientul la domiciliu, pentru personalul din serviciile de
ngrijiri medicale la domiciliu;
Dezvoltarea unor forme de parteneriat la nivelul instituiilor publice ct i de parteneriate
ntre instituii publice i private n domeniul cercetrii tiinifice fundamentale, al cercetrii clinice
inovatoare, al tehnicilor diagnostice i tehnologiilor specifice domeniului etc.
6

IV. Angajamente i propuneri ale Societii Romne Alzheimer privind implicarea


Organizaiei n derularea aciunilor n domeniul prevenirii, diagnosticrii i tratrii bolii
Alzheimer
De la nfiinare i pn n prezent, Societatea Romn Alzheimer i-a orientat activitatea, n principal,
n dou direcii:
crearea unui sistem de servicii medicale i de asisten social pentru persoanele afectate de
demen i de boala Alzheimer, cu aportul i resursele asociaiilor i organizaiilor societii civile;
respectarea i implementarea recomandrilor Alianei Europene Alzheimer i a altor organisme
internaionale nscrise n Declaraia de la Paris (2006), Comunicatul Comisiei Europene privind
mbtrnirea sntoas (2007), Pactul European pentru Sntate Mintal (2008), Declaraia scris a
Parlamentului European cu privire la prioritile n domeniul luptei mpotriva bolii Alzheimer (2009),
Rezoluia privind Iniiativa European de combatere a bolii Alzheimer (2011) etc., axndu-se, n
special, pe responsabilitile specifice societii civile, mplicnd organizaii profesionale i tiinifice din
domeniul medical, organisme i operatori importani din sistemul de sntate, organizaii de pacieni.
Cu onestitate, trebuie s recunoatem c, la sfritul anului 2013, Romnia nregistra, rmneri n
urm fa de alte ri, n ceea ce privete ndeplinirea recomandrilor privind aciuni eseniale ce
trebuiau ntreprinse la nivel naional, privind programarea i planificarea aciunilor privind demena i
boala Alzheimer printr-o conlucrare instituionalizat ntre factorii politici, guvernamentali, parlamentari
i societatea civil.
Aceasta a condus la absena unor strategii i a planurilor naionale pentru bolile neurodegenerative, cu
precdere a demenei i a bolii Alzheimer, pentru perioada de dup 2008. n alte ri europene i nu
numai, guvernele au nscris aceast problematic ca o prioritate pe agenda public ncepnd cu anul
2004, iar ndeplinirea recomandrilor i monitorizarea lor a devenit o aciune sistematic prin
integrarea ei n politica din domeniul sntii publice. Mai mult chiar, aceasta preocupare a fost
nscris pe agenda presediniilor Consiliului Uniunii Europene i a dobndit un loc special pe agenda
G8.
Romnia va deine Preedinia Consiliului Uniunii n anul 2019.
In acest context, Societatea Romn Alzheimer apreciaz c este nc posibil recuperarea rmnerilor
n urm fa de celelalte state membre ale Uniunii Europene, prin conjugarea eforturilor instituiilor
guvernamentale i neguvernamnetale ntr-o abordare inter- i multidisciplinar care s alinieze
Romnia progreselor din aceste ri.
Pe baza expertizei acumulate, Societatea Romn Alzheimer, alturi de membrii Alianei Naionale
Alzheimer i declar disponibilitatea de a participa la acest demers naional pentru ca respectarea
principiilor fundamentale care stau la baza politicii n acest domeniu, respectiv:
promovarea sntii pentru populaia vrstnic a Romniei
promovarea diagnosticului precoce
combaterea stigmei, discriminrii i limitrii oportunitilor de tratament i ngrijire
s se realizeze, cel mai trziu pn la orizontul anului 2020.

I. Preliminary Review
1. Why does the Romanian Alzheimer Society considers imperative to quickly develop a Strategy and Action Plan for
2014 - 2020
The 66th World Health Organization General Assembly has adopted and published, in May 2013, the Action Plan on Mental
Health for 2013 - 2020. This plan is added to the programmatic documents of the international bodies regarding major
responsibilities incumbent to decision makers in all countries concerning people affected by mental health disorders.
The plan contains a number of recommendations for actions needed to be taken until 2020 for member countries with special
reference to the need to update and complement national action plans based on forecasts of the state of mental health.
According to the European Parliament resolution of 19 January 2011 on a European Initiative on Alzheimer's disease and
other dementias (from 2010 to 2084 (INI)), 66 recommendations are formulated to Member States, the Council and the
European Commission, also.
These recommendations are primarily addressed to policy makers in those countries, but not only, and aim to update and
supplement national plans, amending the legislative framework, resource planning, coordination and collaboration between
those responsible for implementation of action plans, the development of social inclusion and the support for people affected
by neurodegenerative diseases.
In Romania, during the last two decades, Romanian Alzheimer Society, a nonpolitical professional association, was
constantly concerned with initiating a dialogue with stakeholders to establish the best ways of approaching the issue of
dementia and Alzheimer's disease in order to respond, on one hand, medical and social care needs and, on the other hand
to adjust to the requirements of international and European institutions to which we belong.
Unfortunately, until now, despite the efforts of professional organizations to initiate a multi-party dialogue with political
decision makers, government and parliament, a strategy and a National Action Plan couldn't be developed, which in term lead
to a lack of social coherence concerning the promotion of minimal objectives for the population suffering from
neurodegenerative disorders.
2. Romanian Alzheimer Societys Mission
During the 22 years of existence, the Romanian Alzheimer Society has been actively involved in national, European and
international programs. Moreover, it has coordinated projects, activities and campaigns designed to meet the needs of this
ever growing population, with a unique medical pathology and major implications in the social, familial and economic settings.
Despite starting it's activity under the auspices of a difficult period in Romania, the Romanian Alzheimer Society ventured in
a multitude of functions, from which we care to particularly mention the ones that contributed to our affiliation to the
international agenda and the aligning efforts to fulfill the recommendations of external bodies and organizations concerning
the development of national strategies plans, public policies and action plans in order to achieve the desired objectives in the
field of mental health.
In all these years, Romanian Alzheimer Society has been represented in over 200 symposia, congresses, national and
international conferences, being itself the organizer of the XIth Conference of Alzheimer Europe in 13th June 2001, the first of
its kind in South Eastern Europe, attended by specialists from Europe, Australia, Canada, South Africa and New Zealand.
External activities contributed to acquiring international recognition of the Society. In 1994, after a serious assessment and
the results of a very careful monitoring, the Romanian Alzheimer Society has been admitted as a full member of Alzheimer's
Disease International, and in 1995 became a member of Alzheimer Europe.
At national level, the concerns focused mainly on creating an appropriate public perception and on the stimulating the interest
of civil society on this issue for a more active and visible involvement. Taking into account that while in other countries things
evolved more consistently towards this goal, in Romania, even if not ignored, the issue was insufficiently addressed at the
societal level between public and private partners, in the context that recent research on aging prospects and increasing
prevalence of neurodegenerative diseases identified them as the most challenging phenomena of the end of the twentieth
century and the beginning of the twenty-first century.
Additional to the above, other civil society initiatives and actions must be mentioned, even if most often sporadic, but still
accomplished with dedication and in good faith towards achieving the necessary changes. We are still in front of a reality that
briefly is as follows:
- In the Public Health Policy in Romania, dementia is not declared a priority;
- There are great delays in the enactment of official documents regarding specific field legislation;
- The institutional framework for the provision of medical services and care is in its early stages;
8

- Social support systems for families / carers of people with dementia are insufficient and inadequate;
- Financial support isn't considered and individualized in the budget allocation at national and / or local level;
- The lack of stimulating clinical and fundamental research and the insufficient epidemiological data is a constraint on the
development of sequential policies specific to neurodegenerative diseases, namely dementia and Alzheimer's disease.
2. The premises of the proposal to act immediately and coherently towards the implementation
of the Strategy and Action Plan for 2014 - 2020
World Health Organization (W.H.O.) presented for 2010, a figure of 35.5 million people suffering from dementia. Globally,
there are 7.7 million, annually recorded new cases, one every four seconds. Estimated annual cost amounts to 604 billion
dollars, with a clear upward trend due to the increasing prevalence of the disease determined on the one hand by the aging
of the population and, on the other hand, by the association of other age contributing factors like chronic diseases, cardiovascular diseases, mental disorders, considering also the influences of the global financial crisis on populations' financial
situation and living conditions.
In Europe, the number of people suffering from dementia is estimated at 9.9 million, representing 28% of all people
worldwide. Most of them were diagnosed with Alzheimer's. Direct costs related to the medical care for this particular category
of patients amounts to about $ 135 billion.
All official documents drafted by W.H.O., by International and European Alzheimer's Association state imperatively that
dementia must be recognized as a national priority by public health and social policies.
At the same time, W.H.O. notes that national health care systems have not yet found an appropriate response in order to
improve public and professional attitudes towards this pathology. Also, access to primary care is limited and investments in
health systems and social care are insufficient.
In Romania, out of an average of 270.000 people suffering from the disease, only around 35.000 get to be diagnosed.
Alzheimer's disease and other forms of dementia are most often diagnosed in their late clinical stages. Although there is a
growing interest from specialist doctors for early diagnosis of the disease, the framework of the medical system does not favor
such approaches. On the other hand, service sector personnel in public and private institutions is low and unprepared to deal
with the specific needs of such categories of patients, coverage of claims amounting to no more than 10%. The community
and home care services are insufficient, non-permanent and very expensive.
Romania fits into the overall global picture, but we must mention that there are significant backlogs in implementation of EU
bodies recommendations in comparison to the other EU Member States: setting strategic objectives and an action plan,
reinforcing and adjusting policies developing medical, diagnostic and treatment facilities, and upgrading the family and
community support systems.
II. 2014 - 2020 objectives and principles for the Strategy and Action Plan
The main objectives of the Strategy and the Action Plan for the upcoming 2014 - 2020 period aims to comply the provided
official program documents adopted by the World Health Organization and European Union institutions, mainly the European
Parliament, the European Council and the European Commission. European Parliaments Resolution 2010 / 2084 which is
based on the European Council Recommendation on measures to combat neurodegenerative diseases, particularly
Alzheimer's, brings out to the EU member countries attention on the necessity to develop disease specific prevention,
diagnosis and treatment policies.
From Romanian Alzheimer Society perspective, the need to develop the Strategy and Action Plan for
2014 - 2020 results not only from the need to recover the delays mentioned above, but mainly, by joint collaboration between
professional, scientific, patient organizations, major operators in the healthcare system and policy makers, to contribute to the
objectives recommended by the programming of European and international bodies to be performed until 2020.
Principles to be followed in formulating strategic objectives and action plans are:
Ensuring access for all those who display any cognitive symptoms of dementia to health and social care
services;
Strict compliance with the provisions of the Convention on the Rights of Persons with Disabilities;
Promote a multidisciplinary approach and apply the best practices, including innovative clinical research
results;
Multi-sectorial approach. Consisting of promoting partnership between public institutions of health, education,
9

employment, justice and other relevant sectors, and between them and the private sector in relation to the specific conditions
of each country;
Involving people affected by neurodegenerative disease in media campaigns, in formulating specific policies, in
setting priorities for action at Nationals and/ or local level, in assessing their individual and community needs, in monitoring
obligations and responsibilities of professional associations, government and civil society.
The main goal of the 2014 - 2020 Strategy and Action Plan for Romania is to increase interest and the
contribution of the responsible factors on a national, regional and local level in order to
improve the mental health of the population by:
- Recognition of neurodegenerative diseases, of dementia and Alzheimer's disease as a priority for the public health policy;
- A decrease of neurodegenerative diseases incidence;
- An early detection of cognitive symptoms, of dementia and Alzheimer's disease;
- An increased accessibility for patients to treatment, proper care and rehabilitation techniques / decrease the negative effects
on their quality of life.
The specific objectives are:
a) Setting/ establish a mechanism for coordinating the activities of various authorities, institutions and bodies involved in the
implementation of actions designed to provide good governance in the mental health promotion.
For achieving this goal, there is required prior assessment of:
- Human resources (number of qualified person and their type of training);
- Material resources (new and old institutions, public and private, hospital or ambulatory type) that could be used in
developing projects to meet the needs of patients at different stages of disease;
- Budgetary and non-budgetary financial resources allocated to the domain;
- Setting of a Register of persons identified with dementia and Alzheimer's disease, with special mention of social cases
(patients without family).
Although the responsibility of ensuring an effective public health policy, through the quality of the institutional mechanism and
of the legal framework, funding allocation and use of resources, the development of specific services system, falls primarily
to the government, ensuring good governance requires expanding the participants, in developing and implementing a
national strategy and plan, with NGOs, professional organizations, patients, families and carers organizations, other specific
structures appropriate to meet the needs of patients.
b) Setting a significant number of specialized units for early diagnosis of dementia and Alzheimers disease, like Memory
Center, that can bear the more pressing demands of examination for the population in the area of cognitive disorders.
The establishing of such centers is needed because:
- It allows the differential diagnosis of dementia from other diseases that can be treated and are potentially reversible;
- Allows the patient and family to take legal action until total loss of decision ability;
- Allows financial planning of resources in the present and for the future;
- Allows the patient to decide with his family what would be the most appropriate care approach;
- Allows the patients to organize their lives knowingly;
- Provides advice and support to families with patients in their care.
This type of health facilities has to be introduced in the standardized network of health institutions and recognized as part of
the public health network.
c) Development of a network of basic services for people with dementia and for carers that has to be varied, flexible, easy to
access and to ensure the continuity of care. Recognizing the great diversity of basic services necessary for patient care,
difficulties encountered for the human resources, material and financial allocation, Strategy and Action Plan should set
priorities, in stages, so that in 2020, Romania will have, at least, the following services:
- Cognitive assessment, diagnosis and treatment;
- Support services for the early stages of the disease;
- Care services in local communities and / or at home - permanent (long-term) and / or temporary;
- Hospitals for terminal care.
d) Developing information programs, education and public awareness regarding dementia and Alzheimer's disease in order
to recognize the first signs of the disease, obtaining, in a minimum period of time, an early diagnosis, as well access to
appropriate approaches and treatment from early stages of the disease, according with the necessary legislation.
10

e) Promoting national scientific research and participation in European community and international programs:
- Promoting best practices and development of quality standards for treatment, personal care, family and community level;
- Improve standard operating procedures with system of indicators characterizing stages of the disease, to facilitate the
discovery of new drugs and increase the effectiveness of care procedures through the use of existing or new technological
means, appropriate to the situations;
- Development of epidemiological and clinical databases at national and transnational level to support direct clinical research,
establishing and updating the criteria for screening and risk factors of the disease;
- Further research on the quality of life of people affected by neurodegenerative disease and their families. On this basis there
can be assessed the economic effects and the resource requirements to reduce the economic, social and emotional impact
on the society, familial and individual level.
f) De-stigmatization of people with dementia
III. Coordination and responsibilities in making the Strategy and Action Plan
We consider that the Strategy and Action Plan on neurodegenerative diseases, especially Alzheimer's disease must be
addressed in the context of public policy on health, representing a major component of it. With this specific, the coordination
in preparing these documents, returns, primarily to government authorities with direct responsibilities in this area.
The experience of the Member States of the European Union shows that almost without exception, this function returns to the
ministries of those countries that have created institutional structures to achieve an integrated policy for all institutions,
associations, governmental and nongovernmental organizations with specific concerns in the field of dementia and
Alzheimer's disease.
Basically, the result of this approach lies not only in drafting national agreements with international and European
recommendation, but to create a consensus at the society level for a coherent approach, with clearly defined objectives on
the short, medium and long term, regarding:
Development of medical and social care for people affected by these diseases;
Promoting and activating clinical and basic scientific research;
Allocation of financial, human and material resources necessary for treatment and care of patients in specialized units within
the family or in other formulas considered appropriate to different stages of evolution of the disease;
Forms of education and/ or training for various categories of staff working with patients in any capacity (medical health
and/ or paramedical);
Training, support and monitoring of carers in the family to better care and an efficient and effective use of resources that
can be made available in different economic contexts of the countries concerned;
Involvement of local communities in the provision of integrated services in home communities, both urban and rural;
Recognition of associations and organizations that focus their work on the treatment and care of patients with dementia
and Alzheimer's disease as the main partners for:
Definition of recommendations and best practices to a level that is very close to the patient;
Presentation of the needs of people with dementia and their carers needs;
Increase of public and professional awareness regarding neurodegenerative diseases.
From the viewpoint of the Romanian Alzheimer Society and National Alzheimer Alliance, the institutional architecture for
specific policy for neurodegenerative diseases could be structured at least on four levels:
An Inter-ministerial Committee that will be established by a decision of the Romanian Government, formed by
representatives of the involved ministries, with tasks accordingly to the objectives mentioned above.
This Committee should be invested with the power to decide on the objectives, actions, resources and their allocation,
contained in the Strategy and National Action Plan Project on neurodegenerative diseases, followed by the approval of the
Government and included in the Government program, as well as in sectorial policies and programs, like social policy,
education policy and research, demographic policy, financial and budgetary policy, adoption of legislation necessary to
implement actions and measures, etc.
The Inter-ministerial Committee should benefit from the activities of a Strategy Subcommittee to analyze, correlate and
finalize documents.
Working groups consisting of representatives of the organizations and civil associations, whose mandate will be determined
according to the requirements of investigation, analysis and formulation of proposals corresponding stages and objectives of
systematic approach, professional and responsible of needs and quality of life of people affected, such as:
- Working group for elaboration of the primary information necessary for creating the patients Register, inventory of existing
material base (specialized centers for diagnosis and treatment, number of beds in hospitals, day care centers, community
11

service types), evaluation of qualified personnel available for this area and so on. Based on the data gathered it will be
realized a significant analysis of the situation in Romania, which will help to determine the priorities and to set actions in the
National Plan;
- Working group for drafting the legal framework defining the rights of people affected by dementia and Alzheimer's disease
and establish the legal framework for their care, the transfer of legal decisions in situations where patients cannot decide
independently regarding treatment, care, patrimonial state, etc. The working group should address equally the aspects
related to family and carers;
- Working group to assess medical costs involved in neurodegenerative diseases, particularly Alzheimer's dementia and to
consider:
direct medical costs (costs of the health care system with professionals, treatment, consults, medical visits);
direct social costs referring to costs outside medical services provided at community level, home care, placing
patients in specialized residences;
informal costs due to interruption or discontinuation of activities and their replacement, collateral effects on
families and / or carers, any deaths;
- Working group to identify, knowledge and promote best practices on the rights of vulnerable people, fighting against the
abuse of people with dementia, their de-stigmatization;
- Working group to develop a strategy for public awareness on these diseases, primary health information dissemination
regarding occurrences and / or behavioral changes in individuals in the family or neighborhood.
Support groups for healthcare professionals employed in institutions, for relatives of hospitalized patients, for relatives
assisting the patient at home, the staff from home health care services.
Development of forms of partnership in the public institutions and partnerships between public and private institutions in
fundamental scientific research, innovative clinical research, diagnostics and technology of specific technological domain.
IV. Commitments and proposals of the Romanian Alzheimer Society regarding involvement in
prevention actions, diagnosis and treatment of Alzheimer's disease
From the beginning until now, Romanian Alzheimer Society has directed its activity mainly in two directions:
Creating a system of health and social care for people with dementia and Alzheimer's disease, with the involvement and
resources of other associations and civil society organizations;
Respecting and implementing the recommendations of the European Alzheimer's Alliance and other international bodies
included in the Paris Declaration (2006), European Commission Communication on healthy aging (2007), the European Pact
for Mental Health (2008), European Parliament Written Declaration on priorities in the fight against Alzheimer's disease
(2009), resolution regarding European Initiative to combat Alzheimer's disease (2011), focusing in particular on the specific
responsibilities of civil society, involving professional organizations and scientific healthcare bodies and major operators in the
healthcare system, patient organizations.
Honestly, we must admit that at the end of 2013, Romania fell behind other countries, in terms of meeting the
recommendations for key actions to be taken at national level on planning and action planning with dementia and Alzheimer's
disease through an institutionalized cooperation between political factors, government officials, congressmens and civil
society.
This led to the absence of national strategies and plans on neurodegenerative diseases, especially Alzheimer's dementia for
the period after 2008. In other European countries and elsewhere, governments have put this issue as a priority on the public
agenda since 2004, and fulfilling the recommendations and monitoring has become a systematic activity through integration
into public health policy. Moreover, this concern has been listed on EU Council Presidency agenda and has acquired a special
place on the agenda of the G8.
Romania will hold the Presidency of the Council of 2019.
In this context, the Romanian Alzheimer Society believes it is still possible to catch up with other European Union member
states, through joint efforts of governmental and non-State actors in inter - and multidisciplinary approach to align Romania
developments in these countries.
Building on the expertise gained, Romanian Alzheimer Society declares its willingness to participate in this national endeavor
that respect basic principles underlying this policy, namely:
promoting health for elderly in Europe.
promote early diagnosis
fight against stigma, discrimination and limited opportunities for treatment and care to be done until 2020 the latest.
12

MEMBRII ALIANEI ROMNE ALZHEIMER (AA) /


NATIONAL ALZHEIMER ALLIANCE MEMBERS (AA)
1. SOCIETATEA ROMN ALZHEIMER - membru FONDATOR / ROMANIAN ALZHEIMER
SOCIETY - FOUNDING member
2. SOCIETATEA DE NEUROLOGIE DIN ROMNIA / ROMANIAN NEUROLOGY SOCIETY
3. ASOCIAIA ROMN DE PSIHIATRIE I PSIHOTERAPIE / ROMANIAN ASSOCIATION OF
PSYCHIATRY AND PSYCHOTHERAPY
4. ASOCIAIA ROMN DE PSIHOGERIATRIE / ROMANIAN ASSOCIATION OF
PSYCHOGERIATRY
5. SOCIETATEA ROMN DE GERIATRIE I GERONTOLOGIE / ROMANIAN SOCIETY OF
GERIATRY AND GERONTOLOGY
6. ASOCIAIA DE PSIHIATRIE SOCIAL DIN ROMNIA / ROMANIAN SOCIAL PSYCHIATRY
ASSOCIATION
7. ASOCIAIA DE PSIHIATRIE BIOLOGIC I PSIHOFARMACOLOGIE /
PSYCHOPHARMACOLOGY AND BIOLOGICAL PSYCHIATRY ASSOCIATION
8.
ASOCIAIA TINERILOR MEDICI GERIATRI / ROMANIAN ASSOCIATION OF YOUNG
GERIATRICIANS
9. FEDERAIA COMUNITILOR EVREIETI DIN ROMNIA / ROMANIAN JEWISH
COMMUNITIES FEDERATION
10. ASOCIAIA GERONTOLOGICA / GERONTOLOGICA ASSOCIATION
11. FUNDAIA PRINILOR NOTRI / OUR PARENTS FOUNDATION
12. CMI PSIHIATRIE FOCANI / FOCANI CMI PSYCHIATRY
13. FUNDAIA PENTRU NGRIJIRI COMUNITARE / FOUNDATION FOR COMMUNITARY CARE
14. SECIA CLINIC GERIATRIE GERONTOLOGIE - Spitalul Sfntu Luca / CLINICAL
SECTION OF GERIATRY - GERONTOLOGY - St. Luca Hospital
15. ASOCIAIA PEOPLES IN DIFFICULTY / PEOPLES IN DIFFICULTY ASSOCIATION
16. SOCIETATEA ROMN DE NEUROREABILITARE / ROMANIAN SOCIETY OF
NEUROREABILITATION
17. SOCIETATEA DE PATOLOGIE, TERAPIE I RECUPERARE VERTEBRO-MEDULAR /
PATHOLOGY, THERAPY AND MEDULAR-VERTEBRAL RECOVERY SOCIETY
18. Rodica Nassar, Preedintele Comisiei pentru Sntate i Familie din Camera
Deputailor / Rodica Nassar, President of the Health and Family Commision of the Chamber of
Deputies

Societatea Romn Alzheimer


Romanian Alzheimer Society
Adresa: Austrului nr 52, sector 2, Bucureti
Address: 52, Austrului Street, 2nd District, Bucharest
E-mail: contact@alz.ro | Website: www.alz.ro