CONNECTIONS: VISION. Families experiencing a diagnosis of dementia will find satisfaction and meaning in their daily lives.

Transcription

1 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 Virginia 1

2 CONNECTIONS: VISION Families experiencing a diagnosis of dementia will find satisfaction and 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 Visitation Practical solutions for engagement were missing Caregivers needed support Persons with a diagnosis needed to be engaged in life LESSONS LEARNED FROM HOME VISITATIONS Adult Day programs, while an excellent option, are not for everyone 4

5 Successful Evidenced-Based Programs 1. Therapeutic Recreation 2. Montessori- Based Dementia Programming 3. Cognitive Intervention 5

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 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 objects 7

8 3. Cognitive Intervention Objects are placed in the environment to facilitate orientation and memory, as well as to encourage engagement in activities. 8

9 Phipps Braddock COGNITIVE INTERVENTION MONTESSORI 9

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-based 11

12 CONNECTIONS WHAT MAKES AN ACTIVITIY MEANINGFUL? 12

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 STAGES OF THE DISEASE STRENGTH-BASED PROGRAMMING 7STAGES OF AD divided into 3 categories: Early Stage 14 Middle Stage Late Stage

15 SYMPTOMS AND STRENGTHS CHART EARLY STAGE COMMON SYMPTOMS Problems coming up with right words Trouble remembering names Trouble with performing tasks Forgetting material one has just read Trouble planning and organizing Forget recent events Mood changes 15 COMMON STRENGTHS Able to express oneself verbally Able to converse intellectually Understands spoken language Able to engage in work Able to self advocate Able to write Able to use memory strategies Long term memory in tact Able to continue use of technology Sense of smell may be in tact

16 SYMPTOMS AND STRENGTHS CHART MIDDLE STAGE COMMON SYMPTOMS COMMON STRENGTHS Problems recalling current address, telephone number Confusion with date, time Difficulty choosing appropriate clothing Loss of recent experiences and surroundings Changes in sleep patterns Wandering or becoming lost Ability to express some thoughts, feelings or ideas Able to engage in conversation Visual awareness May be able to write May be able to read some words Able to enjoy some physical activity Able to recall some past memories Able to engage in modified work Able to recall familiar songs Able to gain pleasure from activity 16

17 SYMPTOMS AND STRENGTHS CHART LATE STAGE COMMON SYMPTOMS Trouble with bowl and bladder control Significant personality and behavior changes Decreased ability to respond to environment Need total assistance for ADLs 17 COMMON STRENGTHS May be aware of the presence of others May respond to touch Able to hear May be communicating through facial expressions Able to gain pleasure from activity

18 Bringing it all together: Connections connecting people with dementia to meaningful activity stimulating brain cells for neurological connections connecting principles of 3 practice fields 18 connecting communities for intergenerational experiences connecting volunteers with persons with dementia

19 Bringing it all together: Connections Empowering to caregivers and persons experiencing memory loss Supportive to caregivers and persons experiencing memory loss Volunteer and community partnership driven 19 Person and relationshipcentered Home and communitybased Strength-based

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 dementia 20

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 / Assess 21

22 MAKING THE CONNECTION DESIGN PROGRAM SUMMARIZE OBSERVE ASK 22

23 STEPS TO CONNECTING ASK OBSERVE: SUMMARIZE What are the person s interests, and lifestyle? What are the person s CURRENT abilities? What is enjoyable to the person? Cognitive Ability Checklist (CAC) Leisure Interest Survey (LIS) Life Story Conversation Starters (LSCS) Focus on strengths 23

24 TOOLS Leisure Interest Survey (LIS) Life Story Conversation Starters (LSCS) Being in the moment Cognitive Checklist Color-Coded Information Summary Sample Activity Charts 24

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 Kits 25

26 Be Flexible Being in the moment for persons in later stage If the chosen activity does not work, try another 26

27 ACTIVITY CENTERS Example: RED ACTIVITY CENTER Care for the animals RED ACTIVITY CENTER Wash hands and wipe off the bathroom counter with spray and cloth 27

28 CONNECTIONS BLUE ACTIVITY CENTER Make 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 engaged in selected activities Caregivers reported increased confidence in structuring activities in the home Data analysis Training / In-services Training Manual Funding Opportunities Faith Communities Evaluate at each step Adapt as needed 30

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 References Bayles, K.A. & Tomoeda, C.K. (1997). Improving function in dementia and other cognitivelinguistic 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, Bourgeois, M.S. (1991). Communication treatment for adults with dementia. Journal of Speech and Hearing Research, 34, Bourgeois, M.S., (1992). Evaluating memory wallets in conversations with persons with dementia. Journal of Speech and Hearing Research, 35, 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, 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, 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),

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, 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 ). 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). Evidencebased practice recommendations for working with individuals with dementia: Montessoribased interventions. Journal of Medical Speech-Language Pathology, 14, 1, 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, Vernooij-Dassen, M., & Moniz-Cooke, E.D. (2005). Editorial. Dementia: The International Journal of Social Research and Practice, 4(2),

34 CONTACT Ellen Phipps, CTRS Vice President Programs & Services Alzheimer's Association Central & Western Virginia The Jordon Building 1160 Pepsi Place Charlottesville, VA Phone: Fax: