Treatment of Dementia: the Seattle Protocols

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1 Treatment of Dementia: the Seattle Protocols L. Teri, Professor Departments of Psychosocial & Community Health, Psychiatry and Behavioral Sciences, and Psychology University of Washington Seattle, WA USA Up and Up: A forum on Community Care, Singapore January 2013

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4 Scholarly Evidence for Behavioral Treatment of Problems in Dementia: Randomized Controlled Trials Skills training improves depression» Teri et al, 1997; Proctor et al., 1999; Beck et al., 2002 decreases agitation» Teri et al., 2002; Huang et al, 2003 improves physical activity» Teri et al., 2003 decreases generalized behavioral problems» Marriott et al., 2000; Burgio et al, 2003; Teri et al., 2005 Improves caregiver reactivity» Teri et al, 1997; Chu et al., 2000 Communication training decreases problem communication» Done et al., 2001 decreases problem behaviors and depression» McCallion et al., 1999 Psychoeducational approaches decreases problem behaviors and improves caregiver reactivity» Gerdner et al, 2002; Hebert et al, 2003 Family Counseling delays institutionalization and improves caregiver reactivity» Mittelman, 1996, 2004 Environmental modifications delays decline in IADLs» Gitlin et al, 2001

5 Seattle Protocols and friends Depression (1997, 2005) Agitation (2002) Physical activity and exercise (2002, 2006) Staff in ALRs (2002, 2005, 2007) Sleep (McCurry) Early-stage memory loss (Logsdon) Mild cognitive impairment (Teri) NH Staff (Meeks) Post-stroke depression (Mitchell) Anxiety (Stanley) AFH (McCurry) Depression (Kiosses)

6 RDAD: Reducing Disability in Persons with Alzheimer s Disease -- Exercise Plus Behavioral Management L. Teri, L. Gibbons, S. McCurry, R. Logsdon, D. Buchner, W. Barlow, W. Kukull, A. LaCroix, W. McCormick, & E. Larson Teri, et al. JAMA, 2003, 290(15): Funded in part by the National Institute on Aging (AG10845 and AG14777). STAR-C -- Training Community Consultants to Help Family Members Improve Dementia Care: A Randomized Controlled Clinical Trial L. Teri, S. McCurry, R. Logsdon, & L. Gibbons Teri, et al., Gerontologist, 2005, 45(6): Funded in part by Alzheimer s Association Pioneer Award. STAR: A Dementia-specific Training Program for Staff in Assisted Living Residences L. Teri, P. Huda, L.A. Gibbons, H. Young, & J. van Leynseele Teri, et al. The Gerontologist, 2005, 45(5): Funded by a Pioneer grant from the Alzheimer s Association and NIMH Grant # 5 R21 MH

7 Seattle Protocols: Background and Key Elements Theoretically grounded Social-learning & person-environment fit Clinically developed and applied Over two decades of clinical expertise In partnership with caregiver, person with dementia, and agency staff Standardized and individualized Evidence based Randomized controlled clinical trials Community tested Washington, Oregon, Ohio in USA England, Italy, Spain, Argentina, Brazil, Japan

8 Seattle Protocols: Key Elements (continued) Standardized manuals Providing structure and clinical judgment to support individual needs In-person weekly sessions In natural living environments Adaptation to special needs Priorities of caregivers, care receivers, staffing, locale, etc. Problem-solving/skill building focus Caregiver and care-recipient involvement Communication, Pleasant Events, ABCs. Exercise

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10 Mood / Duration Mood / Duration Mood Ratings and Duration of Pleasant Activities ABAB Singlecase Design 8 Baseline Days Mood Rating Duration of Pleasant Activities - Hours 8 Treatment Baseline 2 Treatment Days Mood Rating Duration of Pleasant Activities - Hours Teri, L. & Uomoto, J. Reducing excess disability in dementia patients: Training caregivers to manage patient depression. Clinical Gerontologist, 1991, 10(4),

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13 RDAD: Reducing Disabilities in Alzheimer s Disease Teri L, Gibbons LE, McCurry SM, Logsdon RG, Buchner D, Barlow W, Kukull W, LaCroix A, McCormick W, Larson E. (2003) Exercise plus behavior management in patients with Alzheimer s disease: A controlled clinical trial. JAMA, 290(15); Active treatment: Home-based exercise strength, balance, endurance Behavior therapy communication, problem-solving Control: Routine Medical Care Therapists: Master s level home health providers (SW & PT) 9-week treatment duration MMSE 0-29; Mean = 17 Assessments at baseline, 3, 6, 12, and 24 months Funded in part by the National Institute on Aging (AG10845 and AG14777)

14 Why Combine Exercise with Behavioral Treatment? Persons with AD, compared with age-matched controls: Are more undernourished Exhibit ambulation and mobility deterioration over 1 year Have 3 times higher risk for falls and fractures Are significantly less likely to recover from falls and fractures Wolf-Klein et al. Int Psychogeriatr, 1994, 6: , Buchner et al. JAMA. 1987, 257: , Morris et al. J Gerontol. 1987, 42: , Oleske et al. J Am Geriatr Soc. 1995, 43: , Tinetti et al. J Am Geriatr Soc. 1995, 43: , Krenz et al. Med Care. 1988, 26: , Magaziner et al. J Gerontol. 1990, 45:M101-M107.

15 Benefits of physical activity for Individuals with Dementia Improves Strength and Mobility Lazowski, et al Arkin, et al Hageman, et al Rolland, et al Reduces Depression Teri, et al Decreases Behavioral Disturbances Rolland, et al Teri, et al Mitigates Cognitive Decline Rolland, et al Emery, et al. 1998, 2003

16 Number of Persons RDAD: Change in Percent of Subjects Exercising at Least 60 Minutes a Week RDAD Works! RDAD 8 3 RMC Months 12 Months 24 Months ITT: Pre-post <.01; longitudinal P=.13. RDAD: Reasons for Institutionalization RDAD RMC *P< Change in Hamilton Depression Rating Scale (Pts >6 on Cornell at baseline) Patient Behavioral Problems* Patient Impairment or Illness Patient Increased ADL Impairment Month (p<.05) Month (p<.05) Teri et al. JAMA. 2003;290: (A). Funded by NIA

17 STAR: A Dementia-specific Training Program for Staff in Assisted Living Residences Teri, L., Huda, P., Gibbons, L. A., Young, H., & van Leynseele, J. STAR: A dementia-specific training program for staff in assisted living residences. The Gerontologist, 2005, 45(5), Active treatment: STAR Control: Usual in-house training 8-week training duration: 2 4-hour sessions + consultation N=114 staff, 120 residents, 15 residences Assessments at baseline and posttest Funded by a Pioneer grant from the Alzheimer s Association and NIMH Grant # 5 R21 MH069651

18 STAR Training Goals Reinforce values of dignity and respect Provide basic information on dementia and how it affects day-to-day life Train compassionate and clear communication Dignity and respect for residents and staff Identify and treat common care problems Depression and anxiety Use ABCs Introduce and maintain pleasant events Pleasant event s are everyone s job!

19 STAR Works! STAR: Clinical Anxiety Scale Pre-test 10 Post-test STAR: Geriatric Depression Scale 5 0 STAR Control P-value STAR Control Pre-test Post-test P-value STAR: NeuroPsychiatric Inventory Total Pre-test Post-test P value STAR Control Teri, et al., The Gerontologist, 2005, 45(5):

20 Training Community Consultants to Help Family Members Improve Dementia Care: A Randomized Controlled Clinical Trial Teri L, McCurry SM, Logsdon RG, & Gibbons LE. (2005). Training community consultants to help family members improve dementia care: A randomized controlled trial. The Gerontologist, 45(6), Funded in part by the Alzheimer s Association Pioneer Grant P Active treatment: Seattle Protocols communication, problem solving, pleasant events Control: Routine medical care Caregiving consultants: Master s-level mental health counselors 8 weekly sessions, monthly phone calls 4 months MMSE 0-28; Mean = 14 Assessments at baseline, 3, 6, and 12 months

21 STAR-C Works! Care Recipient Quality of Life (QOL-AD) Baseline Post Follow up 26 Pre-Post p< STAR RMC Longitudinal p< Caregiver Depression: CESD 27 Caregiver Burden: SCB Baseline Post Follow up Baseline Post Follow up STAR RMC Pre-Post p<.05 Longitudinal p< STAR RMC Pre-Post p<.01 Longitudinal p<.03

22 ALASKA Seattle Protocol Implementation Sites WASHINGTON VERMONT OREGON NEW YORK IOWA ILLINOIS OHIO ARIZONA NEW MEXICO ARKANSAS ITALY BRAZIL ARGENTINA

23 STAR-C NEW MEXICO RDAD Ohio The Road to Translation: Planning the Trip Theoretical background and clinical foundation STAR-C OREGON Well-tested protocols with comprehensive manuals and all materials needed for training Unique DVDs to accompany training Systematic development and empirically evaluated STAR BRAZIL Randomized controlled clinical trials that established evidence-base for training s efficacy STAR VA STAR ITALY

24 The Road to Translation: Planning the Route: Together Discussing the trip Where are we going? When? Who is coming along? How much will it cost? Committing to the trip Extensive logistics regarding how best to provide new training and follow up Planning for trouble along the way

25 The Road to Translation: Packing the Car: Together Extensive communication between developers and adopters Adaptation of established materials to suit the specific needs of new partners Extensive discussion Conceptual and practical -- regarding how best to provide new training, establish implementation, and support on-going implementation/ maintenance

26 The Road to Translation: Taking the Trip: Together Providing truly interactive/ partnered training Balancing fidelity to original intervention with real-life needs of translation sites Unexpected detours and scenic views along the way

27 Seattle Protocol Translation Sites STAR-C- USA: WA, OR STAR-VA 2008: Apx 50 dyads, 20 staff Staffing: Case managers Funding: AoA or pre-existing services contracts RDAD- USA: OH, WA 2008: >650 dyads, 50 staff Staff: Alz Assn counselors & state case managers Funding: AoA 2010: 71 residents, 21 staff Staffing: VA-CLC Mental Health Providers Funding: VA International: Italy, Argentina, Brazil, England, Japan 2008: unknown Staffing: Case managers Funding: Varied

28 RDAD/STAR-C/STAR: Treatment Enactment and Fidelity Summary Use of a detailed, written treatment protocol with handouts. Train-the-trainer workshops Actual cases reviewed via electronically submitted audiotapes Variable follow up depending on agency/funding needs. Ongoing quality improvement/ treatment fidelity methods deployed.

29 Preliminary data and feedback from coaches and family members has been very positive 71% of those who began program completed it (RDAD-OH) 94% found program useful, well-explained, and enjoyable (RDAD-OH) effective and relevant for setting (STAR-VA) The one-on-one coaching is a strength...while the program is scripted, it takes on the unique flavor of the caregiver/care receiver dyad. (STAR-C-WA) We no longer have meltdowns bad behavior on both our parts in the afternoons... [My coach] gave me confidence to keep trying. (STAR-C-OR) Behavioral problems clinically and statistically reduced. (STAR-VA)

30 STAR-VA Results: Behavioral Problems Baseline Final Overall Frequency Overall Severity Agitation Frequency Agitation Severity

31 STAR:VA- Results (continued) Baseline Final 0 Depression (Cornell) Anxiety (RAID) Care refusalfreq Care refusalseverity

32 The Seattle Protocols Work in the Community! For those with dementia: Depression, anxiety, and general behavioral problems can be reduced. Physical activity can be increased and disability decreased. Institutionalization can be delayed. For family caregivers: Burden and depression can be reduced. For staff caregivers (in ALRs): Skill, reactivity, and job satisfaction can be improved.

33 Limitations Not crisis management. Takes caregiver commitment, time, and patience. Requires professional time. Necessitates specialized training.

34 Conclusions from the community RDAD, STAR-C, and STAR are evidence-based caregiver training programs that have been effectively implemented in community agencies. Each have been very well received by agency staff, administration, caregivers and care-recipients. Each have yielded positive caregiver and carerecipient benefits. More cost-effective methods for delivery and maintaining quality standards are underway, including web-based training and second generation trainer led training.

35 The Road to Translation: Returning Home and Maintaining Friendships What do we do now? Fond memories Getting the photos developed and into the scrapbook Paying the bills Ongoing collaboration Regularly scheduled training updates Real time electronic communication Ongoing modification and refinement of procedures Dreaming of the next trip

36 Thank you Funding: NIH National Institute of Mental Health; National Institute of Aging; Alzheimer s Association, USA Veterans Administration. Colleagues: Pirez Huda, Eric Larson, Rebecca Logsdon, David LaFazia, Susan McCurry, Glenise McKenzie, Jane Pearson, Ken Pike, Burton Riefler, Leon Thal, Jay Uomoto, Heather Young, and faculty and students in the School of Nursing, U. Washington. Staff: Cathy Blackburn, Martha Cagley, Julie Cleveland, Felicia Fleming, Reiko Hikida, Ray Houle, Marie Kirkman, Amy Moore, Elizabeth Buzzy Mounce, Cat Olcott, Margaret Sekijima, June van Leynseele, Thom Walton, Kendra Wight, Raquelle Williams, and those working in Assisted Living. Those with dementia and their loved ones.

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