RAISE AWARENESS FOR PARKINSON'S DISEASE …...2020/07/22 · •Parkinson’s disease paents (Pretzer-Aboﬀ et al, 2015; Swallwell et al., 2018) PARKINSON’S DISEASE (PD) Motor

Rehabilita)onNeurologyDivisionMaugeriClinicalScien*ficIns*tutes

RAISE AWARENESS FOR PARKINSON'S DISEASE AND TELEREHABILITATION: A TREATMENT OFFER

TO FACE UP PANDEMIC

Theinvolvementofthepsychologistinthetelerehabilita5onprogrammes

THE INVOLVEMENT OF THE PSYCHOLOGIST IN THE TELEREHABILITATION PROGRAMMES


Jessica Bellosta, Psychologist

Psychology-NeuropsychologyServiceMaugeriClinicalScien*ficIns*tutesVerunoIns)tute

STATE – OF – ART OF THE PSYCHOLOGIST IN TELEHEALTH


Remotepsychologicalinterven)onsare

efficient

Involvement of the psychologist in telehealth -telerehabilita)onof:• Chronicpainpa)ents(Cranenetal.,2011)• Heartfailurepa)ents(Piotrowiczetal.,2016)

• Parkinson’sdiseasepa)ents(Pretzer-Aboffetal,2015;Swallwelletal.,2018)

PARKINSON’S DISEASE (PD)

Motorsymptoms


Non-motorsymptoms

•  Magnifydisability•  Increasetheneedforsupervision•  Affect emo)onal aspects of the

rela)onshipwithacaregiver(Mosleyetal.,2017)

NEUROPSYCHIATRICSYMPTOMS

NON-MOTOR SYMPTOMS

(Grover et al., 2015; Pfeiffer, 2016; Mosley et al., 2017)

NEUROPSYCHIATRICSYMPTOMS

Cogni)vedecline

Depression,Apathy

Anxiety

PsychosisImpulsedyscontrol

Sleepdisturbances

Sexualbehaviourimpairments


PD PSYCHOLOGICAL INTERVENTION

Emo)onalsupport

Encourageacceptanceandadapta)on

Containsymptoms

Facilitatecompliance

Changeriskybehaviors

Cogni)ves)mula)on

ImproveQUALITYOFLIFE


EVALUATION

INTERVENTIONS

OUTCOME

CAREGIVER “Theunpaidpersonwhoprimarilycaresforthepa)entbecauseofemo)onal)esregardlessof

anyfamilyrela)onship”

It’snotpossibletoconsiderthepa)entwithouther/hiscaregiver


(Rossietal.,2001;VidoOoetal.,2010)

Personalcareassistance

Medica)onadministra)on

Mobilityassistance

Socialandemo)onalsupport

Financialsupport

Dailylivingassistance

•  Lessleisureorsocialac)vi)es

•  Physicalandmentalfa)gue•  LowerQUALITYOFLIFE

PD CAREGIVER RESPONSABILITIES

(Mosleyetal.,2017;Smithetal.,2019)


(Happe et al., 2002; Graham et al. 2006; Schrag et al., 2006; Martinez-Martin et al., 2012)

PDCAREGIVERS

Depression

Stress

Socialproblems Socialisola)on,Loneliness

Healthproblems Psycho-physicaldisturbances

Sleepdisturbances

Economicproblems Lossofincome

PD CAREGIVER CONSEQUENCES


CAREGIVERBURDEN

•  “The extent to which caregiversperceive that caregiving has had anadverse effect on their emo)onal,social, financial, physical and spiritualfunc)oning”(Zarit&Zarit,1986)

Lesseffec)venessofcaregiving

•  Frequenthospitaliza)ons•  LowerQualityofLife(Kuzuyaetal.,2011;Mohamedetal.,2010)


WHY TAKE CARE OF THE CAREGIVER?

Reasonsdirectlyrelatedtothepa)ent


Influenceonpa)ent’s

acceptanceofthedisease

Influenceonpa)ent's

compliance

Compensa)onforeconomicandstructuraldeficiencies

THE PSYCHOLOGIST FOR PD CAREGIVER

Emo)onalsupport

Reducesubjec)veburden/strain

Increasediseaseknowledge

Underlineimportanceofsocialsupport

Encouragehealthcare

ImproveQUALITYOFLIFE


EVALUATION

INTERVENTIONS

OUTCOME

TELESUPPORT FOR THE CAREGIVER

ü Reviewoftelehealthtoolsandinterven)onstosupport family caregivers: sa)sfac)on andimprovementsincaregivers’outcomes(Chi&Demigris,2014)

ü PD caregiver telesupport group: posi)vefeedback(Shahetal.,2015)

ü Telehealth interven)on: reduced demen)acaregiving-burden(Lindaueretal.,2019)


TELEMEDICINE

Ac)vi)esinICSMaugeri(Veruno):


VAMP*–Diseasemanagement*

TELEPARK

REPORT

5x1000

VAMP: THE ROLE OF THE PSYCHOLOGIST

360°professionalassistancefordiseasemanagemento Psychologicalandcogni)veassessmentinterviewso Supportinterviews


TELEPARK: THE ROLE OF THE PSYCHOLOGIST

o  Psychologicalandcogni)veassessmentinterviewso  Con)nuing thepsychological interven)onstartedassoon as enrolled to deal with the emo)onaldiscomfortandproblemsrelatedtotheacceptance/management of the disease (for pa)ent andcaregiver)


REPORT: THE ROLE OF THE PSYCHOLOGIST

o  Assessing the presence of emo)onal disorders, thequality of life and the cogni)ve func)oning of thepa)ents

o  Assessingcaregiving-relatedstrainincaregiverso  Suppor)ng by telephone the caregivers of pa)entsthatfollowthehomerehabilita)onprogram


5X1000 PROJECT

A s s e s sme n t o f c a r e g i v e r ’ s r o l e d u r i n gtelerehabilita)onofpa)entwithParkinsonDiseaseandsleepdisorders.Tostudytheimpactonthecaregiverintermsofstress,frustra)on, sleepdisorders, anxietyordepressionandillnessdenial-dispercep)on.


Pa)entsarerandomizedintotwogroups:Ø  Group T: caregivers of pa)ents who wil l fol low

telerehabilita)on.Ø  Group C: caregivers of pa)ents who will undergo normal

rehabilita)ontraining.

Eachpa)entandcaregiverwillbeassessedatT0andT1:


5X1000: THE ROLE OF THE PSYCHOLOGIST

•  Pa)ent’sassessment:


MOCA• Cogni)vescreening

AD-R• Anxietyanddepressivesymptoms

PDQ-8• Qualityoflife

IDQ-R•  Illnessdenial

ISI•  Insomnia

ESS• Sleepiness

•  Telesupportforthecaregivereverytwoweeksbytelephone

AD-R• Anxietyanddepressivesymptoms

FSQ-SF• Caregiverburden/strain

IDQ-R•  Illnessdenial

ISI•  Insomnia

ESS• Sleepiness

•  Caregiver’sassessment:


5X1000: SLEEP DISTURBANCES IMPACT

Themotor impairment in PD is associated with sleepfragmenta)on,earlyawakening,nocturnalcrampsandnightmares.

SleepdisturbancesareprevalentinPDcaregivers.


Thepooreristhequalityofsleepandthepooreristhequalityoflifeperceivedbythecaregivers.

(Happeetal.,2002;Cupidietal.,2012)

PATIENT’S COMMENT

“EsserepartediunprogeOoditeleriabilitazione,mifasen*re

accoltoeseguito”


v Moreac)veroleinself-management(Kenealyetal.,2015)v Pa)entsa)sfac)on(Wilkinsonetal.,2016;Kruseetal.,2017)

v PD pa)ents benefit greatly frommul)disciplinary -interdisciplinarymedicalcare(Pretzer-Aboffetal.,2015;Ben-Pazietal.,2018)

[email protected]

Maugeri Clinical Scientific Institutes, Veruno Institute,

Psychology-Neuropsychology Service


Documents

RAISE AWARENESS FOR PARKINSON'S DISEASE …...2020/07/22 · •Parkinson’s disease paents (Pretzer-Aboﬀ et al, 2015; Swallwell et al., 2018) PARKINSON’S DISEASE (PD) Motor