1. CONNECTIONS:CONNECTIONS :Engagement in Life for Persons Diagnosedwith DementiaEllen Phipps, CTRSAlzheimers Association Central and Western Virginia ChapterBarbara Braddock, PhD University of Virginia1

2. CONNECTIONS: VISIONFamilies experiencing a diagnosis of dementia will find satisfactionand meaning in their daily lives.2 3. The Beginning What on earth can we do all day? Incidence of dementia increasing Good Activities resources but.3 4. Lessons Learned from Home VisitationPracticalsolutions forCaregiversengagement needed supportwere missing Adult DayPersons with a programs, whilediagnosis an excellent needed to beoption, are notengaged in life LESSONSLEARNEDfor everyone FROM HOME VISITATIONS4 5. Successful Evidenced-Based Programs2. Montessori- 1. Therapeutic Based Dementia RecreationProgramming3. CognitiveIntervention5 6. 1. Therapeutic RecreationThe primary purposes of recreation services are toprovide recreation resources and opportunities inorder to improve health, well being, andindependence.6 7. 2. Montessori-based Programming for Persons with Dementia Based on the process developed for disadvantagedchildren by Maria Montessori Designs a prepared environment Breaks activities down into steps Esthetically pleasing objects7 8. 3. Cognitive InterventionObjects are placed in theenvironment to facilitateorientation and memory, aswell as to encourageengagement in activities.8 9. PhippsBraddock COGNITIVE INTERVENTIONMONTESSORI9 10. The Question How would it be possible to provide the training and tools necessary to support and empower caregivers and offer strength-based meaningful activities at home?10 11. DEFINITIONS Activity Meaningful Activity Strength-based11 12. CONNECTIONS WHAT MAKES AN ACTIVITIYMEANINGFUL?12 13. Meaningful Activity Activities are meaningful when they reflect a persons: Interests Lifestyle Education Current level of function and are enjoyable to the person!13 14. STAGES OF THE DISEASE STRENGTH-BASED PROGRAMMING 7STAGES OF AD divided into 3 categories:EarlyMiddle LateStageStageStage14 15. SYMPTOMS AND STRENGTHS CHARTEARLY STAGE COMMON SYMPTOMS COMMON STRENGTHS Problems coming up with right Able to express oneself verballywords Able to converse intellectually Trouble remembering names Understands spoken language Trouble with performing tasks Able to engage in work Forgetting material one has just Able to self advocateread Able to write Trouble planning and Able to use memory strategiesorganizing Long term memory in tact Forget recent events Able to continue use of Mood changes technology Sense of smell may be in tact15 16. SYMPTOMS AND STRENGTHS CHARTMIDDLE STAGE COMMON SYMPTOMSCOMMON STRENGTHS Problems recalling current Ability to express someaddress, telephone numberthoughts, feelings or ideas Confusion with date, time Able to engage in conversation Visual awareness Difficulty choosingappropriate clothing May be able to write May be able to read some words Loss of recent experiences Able to enjoy some physicaland surroundings activity Changes in sleep patterns Able to recall some past Wandering or becoming lost memories Able to engage in modified work Able to recall familiar songs Able to gain pleasure from activity16 17. SYMPTOMS AND STRENGTHS CHART LATE STAGE COMMON SYMPTOMS COMMON STRENGTHS Trouble with bowl and bladder May be aware of the presence ofcontrol others Significant personality and May respond to touchbehavior changes Able to hear Decreased ability to respond to May be communicating throughenvironment facial expressions Need total assistance for ADLs Able to gain pleasure fromactivity17 18. Bringing it all together: Connections connecting people with dementia to meaningfulactivityconnecting communities stimulating brain cells forfor intergenerational neurological connections experiences connecting volunteers connecting principles of with persons with3 practice fields dementia18 19. Bringing it all together: ConnectionsEmpowering to Person andcaregivers and relationship- persons centered experiencing memory lossSupportive to caregivers andHome andpersons community-experiencingbasedmemory loss Volunteer andcommunity Strength-basedpartnershipdriven19 20. AIMS OF CONNECTIONS:Provide the necessary training, tools, and support to enable caregivers to structure strength-based meaningful programs athome for persons experiencing a diagnosis of dementiaOptimize the home environment for successFacilitate intergenerational relationships Reduce caregiver stress through enhanced interactionEducate volunteers to the unique needs of families dealing with a diagnosis of dementia20 21. CONNECTIONS Unique strategies: Home Visitation / Partnered Volunteers Make the Connection Assess (LIS; LQ) Summarize Design focus on three Guidance / support to family Implement Color coding / interventionstrategies Evaluate / Assess21 22. MAKING THE CONNECTION DESIGN PROGRAM SUMMARIZE OBSERVE ASK22 23. STEPS TO CONNECTING ASK OBSERVE:SUMMARIZE What are the persons Cognitive Ability Checklist Focus on strengths interests, and lifestyle? (CAC) What are the persons Leisure Interest Survey (LIS) CURRENT abilities? Life Story Conversation What is enjoyable to theStarters (LSCS) person?23 24. TOOLSLife StoryLeisure InterestBeing in theConversation Survey (LIS)moment Starters (LSCS)Cognitive Information Sample ActivityChecklist Summary Charts Color-Coded24 25. DESIGNING THE PROGRAM Select 2 3 Activities from the I Column of theLeisure Interest Survey (a comprehensivechecklist of activities) Determine the Color from the cognitive checklist(looks at cognition, language, orientation &memory, attention span) Create Activity Stations our use mobile ActivityTool Kits25 26. Be Flexible Being in the moment for persons in later stage If the chosen activity does not work, try another26 27. ACTIVITY CENTERSExample: RED ACTIVITY CENTERCare for the animalsRED ACTIVITY CENTERWash hands and wipe off thebathroom counter with spray and cloth 27 28. CONNECTIONSBLUE ACTIVITY CENTERMake a tuna sandwich for lunch GREEN ACTIVITY CENTER Indoor herb garden smell and touch 28 29. 3. Cognitive Intervention The environment is held constant by developing consistency in caregivers and volunteers; routines and schedules; location of activity centers; and materials.29 30. CONNECTIONS Preliminary data shows: Future work: 11 of 12 participants successfully Data analysis engaged in selected activities Training / In-services Caregivers reported increased Training Manual confidence in structuring activities in Funding Opportunities the home Faith Communities Evaluate at each step | Adapt as needed30 31. Acknowledgments Student visitations funded through the UVA Office of theVice Provost of Academic Affairs ADRAF GRANT funding from Virginia Center on Aging foradditional research Project supported by Sue Friedman, President & CEO ofAlzheimers Association, Central and Western VirgniaChapter; and Randall Robey, Program ChairCommunication Disorders, University of Virginia Participants and their family members 31 32. References Bayles, K.A. & Tomoeda, C.K. (1997). Improving function in dementia and other cognitive-linguistic disorders. Austin, TX: Pro-Ed. Bourgeois, M.S. (1990). Enhancing conversation skills in patients with Alzheimers diseaseusing a prosthetic memory aid. Journal of Applied Behavior Analysis, 23, 31-64. Bourgeois, M.S. (1991). Communication treatment for adults with dementia. Journal ofSpeech and Hearing Research, 34, 831-844. Bourgeois, M.S., (1992). Evaluating memory wallets in conversations with persons withdementia. Journal of Speech and Hearing Research, 35, 1344-1357. Bourgeois, M.S., Camp, C., Rose, M., White, B., Malone, M., Carr, J., & Rovine, M. (2003).A comparison of training strategies to enhance use of external aids by persons withdementia. Journal of Communication Disorders, 36, 361-378. Camp, C., Judge, K., Bye, C. Fox, K., Bowden, J., Bell, M., et al. (1997). Anintergenerational program for persons with dementia using Montessori methods.Gerontologist, 37, 5, 688-692. Helstrom, I., Nolan, M., & Lundh, U. (2004). We do things together: A case study ofcouplehood in dementia. Dementia: The International Journal of Social Research andPractice, 4(1), 722. 32 33. References Judge, K.S., Camp, C.J., & Orsulic-Jeras, S. (2000). Use of Montessori-based activities forclients with dementia in adult day care: Effects on engagement. American Journal ofAlzheimers Disease, 15, 1, 42-46. Keady, J., & Nolan, M. (2003). The dynamics of dementia: Working together, workingseparately, or working alone. In M. Nolan, U. Lundh, G. Grant, & J. Keady (Eds.), Partnershipsin family care: Understanding the care giving career (pp. 1532). Maidenhead: OpenUniversity Press. Kessels, R.P.C., & De Haan, E.H.F. (2003). The effects of errorless and errorful learning onage-related memory loss. Journal of the International Neuropsychological Society, 9, 577. Mahendra, N., Hopper, T., Bayles, K., Azuma, T., Clearly, S., & Kim, E. (2006). Evidence-based practice recommendations for working with individuals with dementia: Montessori-based interventions. Journal of Medical Speech-Language Pathology, 14, 1, 15-25. Phipps, E., & Braddock, B.A. (2008, unpublished). Dementia intervention care: A trainingprogram. Wilson, B.A., Baddeley, A., Evans. J.J., & Shiel, A. (1994). Errorless learning in therehabilitation of memory impaired people. Neuropsychological Rehabilitation, 4, 307-326. Vernooij-Dassen, M., & Moniz-Cooke, E.D. (2005). Editorial. Dementia: The InternationalJournal of Social Research and Practice, 4(2), 163169. 33 34. CONTACTEllen Phipps, CTRSVice President Programs & Services Alzheimers Association Central & Western VirginiaThe Jordon Building1160 Pepsi Place Charlottesville, VA 22901 Phone: 434-973-6122Fax: 434-973-4224 ellen.phipps@alz.org www.alz.org/cwva34