Me nta l He a lth Ne e ds of F a mily Ca re g ive rs: Ide ntifying - PowerPoint PPT Presentation

Me nta l He a lth Ne e ds of F a mily Ca re g ive rs: Ide ntifying , E ng a g ing a nd Assisting Sponsore d By: U.S. Administra tio n o n Ag ing & Ame ric a n Psyc ho lo g ic a l Asso c ia tio n Se pte mb e r 14, 2011 U.S. DE PART ME NT OF HE AL T H AND HUMAN SE RVICE S, ADMINIST RAT ION ON AGING, WASHINGT ON DC 20201 PHONE 202.619.0724 | F AX 202.357.3523 | E MAI L a o a info @ a o a .g o v | WE B www.a o a .g o v

Willia m E . Ha le y, Ph.D. Sc ho o l o f Ag ing Studie s Unive rsity o f So uth F lo rida wha le y@ usf.e du http:/ / a g ing studie s.c b c s.usf.e du/ fa c ulty/ wha le y.c fm

T oda y’s T a lk • Who a re c a re g ive rs a nd wha t do the y do ? • I mpa c t o f c a re g iving o n he a lth a nd me nta l he a lth • K e y fa c to rs fo r c a re g ive r stra in vs. re silie nc e • E ffe c tive inte rve ntio ns fo r c a re g ive rs

F unda me nta ls— c a re g iving is inc re a sing ly c ommon • 52 millio n info rma l a nd fa mily c a re g ive rs pro vide c a re to so me o ne a g e d 20+ who is ill o r disa b le d • 34 millio n a dults invo lve d in c a re g iving to pe rso ns a g e d 50 o r o ve r • 8.9 millio n info rma l c a re g ive rs pro vide c a re fo r so me o ne a g e d 50+ with de me ntia Family Caregiver Alliance, http://www.caregiver.org

F unda me nta ls of c a re g iving • Mo st fa mily c a re g ive rs a re wo me n; spo use s a nd da ug hte rs; “info rma l” (unpa id) • AD c a re g iving , 60 ho urs pe r we e k a t ho me ; 9 ho urs e ve n a fte r NHP; 5-10 ye a r “c a re e r” • Ho spic e lung c a nc e r c a re g ive rs, o ve r 100 ho urs pe r we e k • Diffe re nc e s with o the r c o nditio ns a nd disa b ilitie s (DD, stro ke , SCI , MCI )

Pe rc e nt of U.S. House holds With Ca re g ive rs by E thnic ity/ Ra c e RETRIEVED FROM: HTTP://WWW.CAREGIVING.ORG/DATA/CAREGIVING_IN_THE_US_2009_FULL_REPORT.PDF

Wha t do c a re g ive rs do? • “Wha te ve r it ta ke s” • Ma y ra ng e fro m o c c a sio na l a ssista nc e to full- time c a re • I nc lude s physic a l c a re , sympto m ma na g e me nt, e mo tio na l suppo rt, he lp with a c tivitie s o f da ily living • I nc lude s suppo rt while c a re re c ipie nt is in a fa c ility • Co nc e pt o f “c a re g iving c a re e r”

The Caregiving Career Aneshensel et al., 1995

Chronic Stre ss T ra je c tory in Ca re g iving Schulz, 2010 Placement CG/ Initiate Expand CR Trajectory Death IADL CG ADL CG Psychological Benign Distress Distress Relief Appraisal Psychiatric/ Continued Health Minor Physical Depression/ Recovery Effects Morbidity Reengagement Death

Ca re g ive r re ports of the most stre ssful pa tie nt proble ms in de me ntia • Da ng e ro us b e ha vio r • Ge tting lo st • E mb a rra ssing b e ha vio r • Wa king the c a re g ive r • Ag ita tio n, re stle ssne ss • Ang e r, suspic io usne ss • De pre ssio n • No t me mo ry pro b le ms o r ADL pro b le ms, inc o ntine nc e Haley et al., 1987

Ca re g iving , He a lth, & Me nta l He a lth • Hig h CG stra in a sso c ia te d with 63% inc re a se d mo rta lity (vs. no nCG & lo w stra in) • Hig h pe rc e ptio n o f CG stra in (vs. no o r lo w stra in) a sso c ia te d with 12% inc re a se in stro ke risk • AD c a re g ive rs sho w slo we r wo und he a ling • Ca re g ive rs with hig h stra in sho w inc re a se d de pre ssio n Schulz & Beach, 1999; Haley et al., 2010; Kiecolt-Glaser et al., 1995; Pinquart & Sorensen, 2003; Roth et al., 2009

Re c e nt re sults F ro m o ur surve y o f 43,099 a dults o ve r 45: • Are yo u c urre ntly pro viding c a re o n a n o ng o ing b a sis to a fa mily me mb e r with a c hro nic illne ss o r disa b ility? – 12% sa y ye s • Ho w muc h o f a me nta l o r e mo tio na l stra in is it o n yo u to pro vide this c a re ? (no ne , so me , a lo t) – 33% re po rt no stra in, 49% “so me ” stra in, 18% “a lo t” o f stra in Roth et al., 2009

Re la tionship of Ca re g iving Stra in to De pre ssive Symptoms 3.00 2.50 CESD - 4 Depression 2.00 1.50 1.00 0.50 0.00 Non No Strain Moderate High Strain Caregivers Strain Roth et al., 2009

Ca re g iving a nd the Stre ss Proc e ss • Prima ry stre sso rs—pa tie nt c a re • Se c o nda ry stre sso rs—spillo ve r e ffe c ts • Co nte xtua l stre sso rs—life g o e s o n • Stre ss a ppra isa l—a ffe c te d b y pe rc e ive d re so urc e s • Psyc ho so c ia l re so urc e s c a n inc lude inte rna l (kno wle dg e , c o ping , pe rso na lity, spiritua lity) a nd e xte rna l (so c ia l suppo rt, fina nc e s, se rvic e s)

Ca re g iving : A Ba la nc ing Ac t Primary Internal coping caregiving resources stressors Secondary External coping stressors resources Other chronic strains and life events Perkins et al., 2007

Ca re g ive r inte rve ntion c a n: • De c re a se stre sso rs (lig hte n the lo a d) • Alte r a ppra isa ls (Ho w b a d the stre sso rs a re , a nd wha t pe rc e ive d re so urc e s pe o ple ha ve to c o pe ) • T e a c h skills o r in o the r wa ys b uild inte rna l re so urc e s • Pro vide o r ra lly e xte rna l re so urc e s

E ffe c tive ne ss of de me ntia c a re g ive r inte rve ntions • Psyc ho so c ia l inte rve ntio ns fo r CGs impro ve multiple o utc o me s: b urde n, de pre ssio n, we ll- b e ing , a b ility/ kno wle dg e , a nd CR sympto ms • CB the ra py & psyc ho e duc a tio na l inte rve ntio ns (PI s) with a c tive CG pa rtic ipa tio n b e st a t impro ving CG de pre ssio n • PI s with a c tive CG pa rtic ipa tio n b e st a t impro ving multiple o utc o me s • Mo re limite d e ffe c ts fo r suppo rt, re spite Pinquart & Sörensen, 2006

Common type s of inte rve ntions • Psyc ho e duc a tio na l—te a c h c a re g ive rs info rma tio n a nd skills in ma na g ing de me ntia – Distinc tio n, a c tive pa rtic ipa tio n vs. info rma tio n o nly • Suppo rt—Unstruc ture d, e mpha size suppo rt fro m me mb e rs • Co g nitive b e ha vio r the ra py—fo c us o n c a re g ive r e mo tio na l re a c tio ns, te a c h wa ys to ma na g e c a re g ive r re a c tio ns • Re spite / a dult da y c a re

Effect sizes for depression 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0 Psyed Active Psyed Info Respite CB Therapy Support Pinquart & Sörensen, 2006

T he NYU inte rve ntion • 406 c a re g ive rs ra ndomly a ssig ne d to usua l c a re or a n inte nsive c a re g ive r inte rve ntion prog ra m a t NYU o 2 se ssio ns individua l c o unse ling o 4 fa mily se ssio ns o suppo rt g ro up me mb e rship o a d ho c c o unse ling witho ut limit • De sc ribe d in de ta il in a book Mittelman et al, (2002)

Usual Care Treatment 11 Depressive Symptoms 10 9 8 0 17 35 52 W eeks Mittelman et al., 2004

Usual Care Treatment 11 Depressive Symptoms 10 9 8 7 52 104 156 208 260 Weeks Mittelman et al., 2004

Re sults- - e ffe c ts on NHP • Our a na lyse s sho w tha t, with lo ng e r dura tio n o f fo llo w up, the de la y in nursing ho me pla c e me nt in the tre a tme nt g ro up is 557 da ys, c o mpa re d with pre vio usly re po rte d de la y o f 329 de la ys • Me dia n c o st o f NH c a re in F lo rida is c urre ntly o ve r $75,000 pe r ye a r Mittelman et al., 2006

Mittelman et al., 2006

Be yond “e ffic a c y”, to “e ffe c tive ne ss” studie s • Curre nt tria ls tra nsla ting e vide nc e b a se d inte rve ntio ns into c o mmunity using RE ACH, NYU, & ST AR-C pro to c o ls • ST AR-C pro to c o l (tra ins c a re g ive rs in b e ha vio ra l ma na g e me nt) • Use d c o mmunity pra c titio ne rs to tra in c a re g ive rs • Ra ndo m a ssig nme nt to ST AR-C ve rsus usua l c a re Burgio et al., 2009; Teri et al., 2005

Re sults • Community c onsulta nts we re a ble to le a rn a nd a dhe re to the be ha viora l tre a tme nt protoc ol. Ca re g ive rs re c e iving ST AR- C tra ining showe d sig nific a nt improve me nts a t 6 month follow up in: – De pre ssion – Burde n – Re a c tivity to be ha vior proble ms in the c a re re c ipie nt. – Ca re re c ipie nts a lso showe d be ne fits, inc luding : • De c re a se d fre que nc y a nd se ve rity of be ha vior proble ms • improve d c a re re c ipie nt qua lity of life . Teri et al., 2005

Conc lusion • Hig h stra in c a re g ive rs a t inc re a se d risk fo r de pre ssio n a nd he a lth pro b le ms • I nte rve ntio n fo r c a re g ive rs ha s the po te ntia l to pro duc e lo ng la sting , life c ha ng ing , b e ne fits fo r c a re g ive rs • Po te ntia l to sa ve c o sts a nd to minimize the lo ng te rm da ma g e to c a re g ive rs’ live s • I mpo rta nt to b uild CG re so urc e s a nd do mo re to inc re a se c a re g ive rs’ a c c e ss to e ffe c tive inte rve ntio n

Me nta l He a lth Ne e ds of F a mily Ca re g ive rs: Ide ntifying , E ng a g ing a nd Assisting Que stions?