CaringFamily Connecting Elders, Empowering Caregivers Michael D. Williams, Ph.D. State of the Science Conference Oct 25-

1. CaringFamilyConnecting Elders, Empowering Caregivers Michael D. Williams, Ph.D. State of the Science ConferenceOct 25-26, 2007

2. What I want you to walk away with: • An exciting new technology to bring aging parents into the digital life of their families • A cost effective researchplatform to explore: • Therapeutic value of communications • Cost effective delivery of emerging practices • Refinement of emerging practices • The organic development of services and programs - the integration of families into professional caregiving

3. It’s about the Program(s) • Family Communications is Therapy! And more… • Programs are a collection of services • Nursing Rehabilitation (30 day stay, family crisis) • Community Forum (facility connection to family) • Family Connections (a mailroom approach, full family communications) • Personal Mailbox • The Patient as the missing ingredient • The purpose of the communications • Daily presence – a voice in the electronic world

4. Basic capabilities – (you have likely already seen the mock-up and samples at the booth) • One button ==> pen and paper to Granny! (magic - patent pend.), • More than eMail - it is about therapy • It is about the ecology of family communications, • Empowering the kin-keeper (anthropology?!)

5. Far more than eMail! All of Life.

6. For Example: Emotional Wellness

7. Facility Staff: in the loop • Staff Knowledge • Assisted Sending • Direct communications with family • Initiating conversations

8. A Research Tool • Capabilities • Flexibility • Extensibility – Services and devices • Data • Extra-ordinarily fine grained • Prompted, Tracked and Automated collection • Costs • For Research • Scaling to commercial deployment

9. Internet Elders Family, Friends, Volunteers Architecture:basic communications

10. Internet Family, Friends, Volunteers Architecture:Add a service Data Base Web Site Elders Overnight Printing and SPAM security  Web site and minimal service

11. Internet Family, Friends, Volunteers Architecture:Platform for Research: newServices and Devices … Services CentralData Base AutomatedComponents Elders Start with 3 grad students and a computer!

12. … Internet Family, Friends, Volunteers The Process for Service Development

13. Current research results • It works! ==> wheel of wellness, ("2 cans and a string") • Kin Keeper, • Viral member growth, Presence (both ways - elder/members), • Power of Prompts • Import of Voice of "prompts", (Newsletter, prompts, elder cards and missives) • Impact of Commercial trials! • Complex contextual effects • Rough qualitative results

14. Some “Service” Categories • eMail Prompting (templates, sequences, …etc.) • Resident Prompting • Active reminders - commitment to a scheduled communication • Staff and Community Mailbox Functionality • Content management • Wellness directors interface • Customer Service • Trouble ticket • Customer contact • Problem recognition and reporting • Data Collection and Analysis • Not to mention “Processes” that weave a complex path through the above systems (e.g. assisted sending - ) • The items above are categories. We currently identify 40+ distinct services

15. One Service: eMail Prompting • An analysis of just one of the above service • Templates • Tags(customization, branding, personalization, and voice) • Prompting Message Sequences(e.g. introduction, service/system training, event reminding,facility type {e.g. nursing rehab}, …etc.) • Scheduling • Logical triggering and logical exceptions • Newsletters – (with Marquees)

16. Example of Dual use of the eMail Prompting Component • Scientific uses of the eMail member prompting component • Recruiting and Consent processes • Instruments and Instrument Sequences • Staff and Volunteer Training • Communications support of Staff Programs (e.g. weekly family rehab report, assisted sending tasks, …etc.) • Family Commitment (e.g. FIC) Processes • This automation is what allows the economic running and analysis of hundreds (even thousands) of subjects with a small research team.

17. What the data looks like • “In channel” messages, • Response rates to prompting, • Fine grained data even at aggregate level (personally supplied images, cards, size of messages, time/date ==> sequencing, …etc.), • Tracking of complex interactions • ==> Online consenting (lowers research costs, permits viral growth, limits use of data), • ==> Online surveys (e.g. calls, visits)(member and elder – again, lowers costs)

18. Seeing into this ecology of family communications

19. Internet Organic Development • Weekly Family Newsletter • Family Member Prompting • Introduction template sequences • Training template sequences • Recruiting template sequences • Active Reminders (scheduled message commitments). • Holiday Cards- an example of an embedded service • LifeBook (comments, ...) – purposeful, meaningful activities • Web site initiation - initial start-up, wetware and extant infrastructure only - an example of stating from no automation (no boxes, no databases)

20. Current Research Collaborations • Cathy Bodine – ACT-RERC – Univ. of Colorado, HSC – Alzheimer Dyads and Family Communications • Sara Qualls – Kraemer Family Professor of Aging Studies - Univ. of Colorado, Colorado Springs – Aging CenterLarge scale clinical trials of stimulated family communications • Joseph Gaugler – Assistant Professor – School of Nursing and Center on Aging at the University of Minnesota – Nursing Home Staff Knowledge • Rebecca Allen – Professor – Univ. of Alabama Center for Mental Health and Aging Creation of Family Legacies • Cyndi Seiwert – Executive Director – Golden LivingCenter, Lake Ridge, Minnesota – Family Communications in the Nursing Home Environment

21. Some Research Candidates • MemoryBooks – Purposeful activities • Impact of affective communications • Family Decision Making • Tele-consulting - InReach • Social Network Effects – Convoys, perceived connections • Emerging Best Practices • Assisted Sending • Facility Staff Knowledge • Bedside Journal – Family Awareness • Prompting, Voice, Empowering the Kin-Keeper, …

22. What I want you to walk away with: • An exciting new technology to bring aging parents into the digital life of their families • A platform to conduct research on: • Therapeutic value of communications • The ecology of family communications • Cost effective delivery of best practices • Can this technology be useful to you in your research? - MWilliams@CaringFamily.com • The organic development of services and programs - the integration of families into professional caregiving

23. Extra Slides

24. Impact of Commercial Trials • Commercial Trials and F&F panel can be coordinated with scientific research to achieve a number of important effects • Complex contextual effects (e.g. our discovery of the impact of “voice” in prompting situations, “presence” in overall level of activity, and central kin keeper role) • Rough results to determine if a phenomenon might be exploitable to achieve some effect (e.g. improved quantity, quality, timeliness or effectiveness of family communications) • Hardening of complex service components • E.G. System monitoring, trouble ticket • Early specification and development of new components, services and processes - Trials are a “forcing function” for early development • E.G. Staff mailbox, Community Mailbox • Assisted sending • The bottom line is that it is a coordinated attack on a complex problem.

25. Evolution and Adaptation • Nursing Rehabilitation • Senior center and hospice use of legacy products • At home and assisted living environments

26. Family Communications IS TherapyThe Impact: Longer, Healthier Lives Studies show that regular interaction with family & friends produces compelling therapeutic benefits. CaringFamily delivers on that promise, by helping elders: • Enjoy regular mental stimulation Active participation in cognitive activities is associated with a 63% reduction in the risk of developing dementia. • (New England Journal of Medicine 2003) • Sustain social connections Socially isolated people have two to four times increased risk of all-cause mortality compared with those with extended ties to friends and relatives and in the community. • (The Lancet, June 2004)

27. Driven By Research “Active engagement with life is achieved by close personal relationships with family and friends….” • (“Successful Aging: The MacArthur Foundation Study,” 1998) “Social engagement adds a sense of purpose to people’s lives. It also seems to add years to those lives.” • (British Medical Journal, 1999) “People without close interpersonal ties are more than twice as likely to die than their counterparts with close interpersonal ties." • (University of Dayton, 2003)

28. It is ironic that in the most connected age in history that elders are increasingly isolated. • “Loneliness is the leprosy of the West.” • Mother Teresa • “Research has shown that lack of social interaction leads to disabilities, depression, and even death for the elderly.” • Stanley Wasserman Loss of Spouse, Diabetes, Car Keys, Broken Hip, Arthritis, Vision, Capability Crises over Time

29. Isolation & Loneliness (Physical & Mental) Decline Loneliness Depression Isolation Caregroup Communications

30. Depression • A keystone disease, even sub-clinical depression is deadly in the average. • Over a 5 year period: 2-3 times increase risk of cancer, heart disease, diabetes, … • Initial dislocation to Assisted Living or Nursing Home increases stress and depression resulting in a 3 times mortality for during the 1st 3 months.

31. Dementia • Use it or lose it • It’s really just that simple. Intellectual stimulus dramatically decreases the onset of dementia in the elderly. • In repeated scientific studies a clear theme of “use it or lose it” with regard to exercising the brain is evident. 

32. An Assisted Living Resident using the CaringFamily service • Elder: • “I’m watching a lot less TV because I’m enjoying working on my messages.” • Daughter: • “My dad can feel that he is still part of the family, even though he is not at home anymore.”

33. Return Messages are 1-Button Easy Elders send return messages with the touch of a single button – the CaringFamily Network takes care of routing

34. One Button – we mean it!

35. A Popular Framework

36. Community Communications Metrics

37. Family Engagement Increases the participation of family – encourages more members to send more messages • Examples: • Family Newsletter • Holiday Greetings • Family Photos • Caregiver Updates • Geriatric Consultations • Discussion Board

38. Resident Engagement Develops resident comfort with sending and receiving messages via the Magic Mailbox • Examples: • Pre-addressed Notepaper • Distribution Lists • Holiday Greetings

39. Daily Greetings Provides a base-level of one-way communications to residents – keeps spirits up • Examples: • Family Weather • Photos of the Day • Daily Inspiration • Daily Humor • Hometown News • Topical Newsletters

40. Interactive Family Projects Ongoing two-way activities providing meaningful work and substantive family dialog • Examples: • Weekly Scrapbook • Resident Artist • Life Stories • Shared Memories • Daily Journal • Family Photo Stories

41. Cognitive Exercises Provides mental stimulation independent of active family participation • Examples: • Daily Puzzles • Provide the Punch line • Provide the Caption • Enhanced Exercises

42. Expanding Social Circle Reaches beyond family and friends - for more active residents and/or less active families • Examples: • Elder Adoption • Pen Pals • Adopt a Classroom • Welcoming Party • Church Connections • Lifetime Connections • Interest Groups

43. Grandma’s Messages are 1-Button Easy Elders send handwritten return messages with the touch of a single button

44. Families Send Email… Family members send messages via e-mail, CameraPhones, a family web site - including digital photos.

45. Elders Receive Messages On Paper The elder’s “Digital Mailbox” prints messages, automatically, in full color…

46. Social Wellness

47. A Purpose

48. Spiritual Wellness

49. Intellectual Wellness

50. The Ecology of family communications: What do families DO? • Affective Communications • The family experience • The power of grand (and great-grand) children! Kid Art! Photos, Thank you’s • Digital Gifts • Communications creates more communications • Coaching • Intellectual stimulus • Family Events – in the flow • To have a purpose, to participate - projects • Both ways! (elder scans, family mail) • Spiritual Support - Jokes, jokes, jokes – have you laughed today? • Instrumental Support (bills, taxes, …) • Informational Support