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  1. 1. CONNECTIONS:CONNECTIONS :Engagement in Life for Persons Diagnosed with Dementia Ellen Phipps, CTRS Alzheimer’s Association Central and Western Virginia Chapter Barbara Braddock, PhD University of Virginia1
  2. 2. CONNECTIONS: VISIONFamilies experiencing a diagnosis of dementia will find satisfaction and meaning in their daily lives.2
  3. 3. The Beginning  What on earth can we do all day?  Incidence of dementia increasing  Good Activities resources but….3
  4. 4. Lessons Learned from Home Visitation Practical solutions for Caregivers engagement needed support were missing Adult DayPersons with a programs, while diagnosis an excellent needed to be option, are notengaged in life LESSONS LEARNED for everyone FROM HOME VISITATIONS4
  5. 5. Successful Evidenced-Based Programs 2. Montessori- 1. Therapeutic Based Dementia Recreation Programming 3. Cognitive Intervention5
  6. 6. 1. Therapeutic Recreation The primary purposes of recreation services are to provide recreation resources and opportunities in order to improve health, well being, and independence.6
  7. 7. 2. Montessori-based Programming for Persons with Dementia Based on the process developed for disadvantaged children by Maria Montessori Designs a prepared environment Breaks activities down into steps Esthetically pleasing objects7
  8. 8. 3. Cognitive Intervention Objects are placed in the environment to facilitate orientation and memory, as well as to encourage engagement in activities.8
  10. 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. 11. DEFINITIONS  Activity  Meaningful Activity  Strength-based11
  13. 13. Meaningful Activity  Activities are meaningful when they reflect a person’s:  Interests  Lifestyle  Education  Current level of function …and are enjoyable to the person!13
  14. 14. STAGES OF THE DISEASE – STRENGTH-BASED PROGRAMMING 7STAGES OF AD divided into 3 categories: Early Middle Late Stage Stage Stage14
  15. 15. SYMPTOMS AND STRENGTHS CHART EARLY STAGE COMMON SYMPTOMS COMMON STRENGTHS• Problems coming up with right • Able to express oneself verbally words • 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 advocate read • Able to write• Trouble planning and • Able to use memory strategies organizing • Long term memory in tact• Forget recent events • Able to continue use of• Mood changes technology • Sense of smell may be in tact15
  16. 16. SYMPTOMS AND STRENGTHS CHART MIDDLE STAGE COMMON SYMPTOMS COMMON STRENGTHS• Problems recalling current • Ability to express some address, telephone number thoughts, feelings or ideas• Confusion with date, time • Able to engage in conversation • Visual awareness• Difficulty choosing appropriate clothing • May be able to write • May be able to read some words• Loss of recent experiences • Able to enjoy some physical and 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. 17. SYMPTOMS AND STRENGTHS CHART LATE STAGE COMMON SYMPTOMS COMMON STRENGTHS• Trouble with bowl and bladder • May be aware of the presence of control others• Significant personality and • May respond to touch behavior changes • Able to hear• Decreased ability to respond to • May be communicating through environment facial expressions• Need total assistance for ADLs • Able to gain pleasure from activity17
  18. 18. Bringing it all together: Connections connecting people with dementia to meaningful activity connecting communities stimulating brain cells for for intergenerational neurological connections experiences connecting volunteers connecting principles of with persons with 3 practice fields dementia18
  19. 19. Bringing it all together: Connections Empowering to Person and caregivers and relationship- persons centered experiencing memory loss Supportive to caregivers and Home and persons community- experiencing based memory loss Volunteer and community Strength-based partnership driven19
  20. 20. AIMS OF CONNECTIONS: Provide the necessary training, tools, and support to enable caregivers to structure strength-based meaningful programs at home for persons experiencing a diagnosis of dementia Optimize the home environment for success Facilitate intergenerational relationships Reduce caregiver stress through enhanced interaction Educate volunteers to the unique needs of families dealing with a diagnosis of dementia20
  21. 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 / intervention strategies • Evaluate / Assess21
  23. 23. STEPS TO CONNECTING ASK OBSERVE: SUMMARIZE • What are the person’s • Cognitive Ability Checklist •Focus on strengths interests, and lifestyle? (CAC) • What are the person’s • Leisure Interest Survey (LIS) CURRENT abilities? • Life Story Conversation • What is enjoyable to the Starters (LSCS) person?23
  24. 24. TOOLS Life StoryLeisure Interest Being in the Conversation Survey (LIS) moment Starters (LSCS) Cognitive Information Sample Activity Checklist – Summary Charts Color-Coded24
  25. 25. DESIGNING THE PROGRAM Select 2 – 3 Activities from the “I” Column of the Leisure Interest Survey (a comprehensive checklist of activities) Determine the Color from the cognitive checklist (looks at cognition, language, orientation & memory, attention span) Create Activity Stations – our use mobile Activity Tool Kits25
  26. 26. Be Flexible Being “in the moment” for persons in later stage If the chosen activity does not work, try another26
  27. 27. ACTIVITY CENTERS Example: RED ACTIVITY CENTER Care for the animalsRED ACTIVITY CENTERWash hands and wipe off thebathroom counter with spray and cloth 27
  28. 28. CONNECTIONSBLUE ACTIVITY CENTERMake a tuna sandwich for lunch GREEN ACTIVITY CENTER Indoor herb garden – smell and touch 28
  29. 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. 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. 31. Acknowledgments Student visitations funded through the UVA Office of the Vice Provost of Academic Affairs ADRAF GRANT funding from Virginia Center on Aging for additional research Project supported by Sue Friedman, President & CEO of Alzheimer’s Association, Central and Western Virgnia Chapter; and Randall Robey, Program Chair Communication Disorders, University of Virginia Participants and their family members 31
  32. 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 Alzheimer’s disease using a prosthetic memory aid. Journal of Applied Behavior Analysis, 23, 31-64. Bourgeois, M.S. (1991). Communication treatment for adults with dementia. Journal of Speech and Hearing Research, 34, 831-844. Bourgeois, M.S., (1992). Evaluating memory wallets in conversations with persons with dementia. 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 with dementia. Journal of Communication Disorders, 36, 361-378. Camp, C., Judge, K., Bye, C. Fox, K., Bowden, J., Bell, M., et al. (1997). An intergenerational 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 of couplehood in dementia. Dementia: The International Journal of Social Research and Practice, 4(1), 7–22. 32
  33. 33. References Judge, K.S., Camp, C.J., & Orsulic-Jeras, S. (2000). Use of Montessori-based activities for clients with dementia in adult day care: Effects on engagement. American Journal of Alzheimer’s Disease, 15, 1, 42-46. Keady, J., & Nolan, M. (2003). The dynamics of dementia: Working together, working separately, or working alone. In M. Nolan, U. Lundh, G. Grant, & J. Keady (Eds.), Partnerships in family care: Understanding the care giving career (pp. 15–32). Maidenhead: Open University Press. Kessels, R.P.C., & De Haan, E.H.F. (2003). The effects of errorless and errorful learning on age-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 training program. Wilson, B.A., Baddeley, A., Evans. J.J., & Shiel, A. (1994). Errorless learning in the rehabilitation of memory impaired people. Neuropsychological Rehabilitation, 4, 307-326. Vernooij-Dassen, M., & Moniz-Cooke, E.D. (2005). Editorial. Dementia: The International Journal of Social Research and Practice, 4(2), 163–169. 33
  34. 34. CONTACT Ellen Phipps, CTRS Vice President Programs & Services Alzheimers Association Central & Western Virginia The Jordon Building 1160 Pepsi Place Charlottesville, VA 22901 Phone: 434-973-6122 Fax: 434-973-4224