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CaringFamily Connecting Elders, Empowering Caregivers Michael D. Williams, Ph.D. State of the Science Conference Oct 25-26, 2007. What I want you to walk away with :. An exciting new technology to bring aging parents into the digital life of their families

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CaringFamilyConnecting Elders, Empowering Caregivers

Michael D. Williams, Ph.D.

State of the Science ConferenceOct 25-26, 2007

what i want you to walk away with
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
it s about the program s
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
basic capabilities you have likely already seen the mock up and samples at the booth
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?!)
facility staff in the loop
Facility Staff: in the loop
  • Staff Knowledge
  • Assisted Sending
  • Direct communications with family
  • Initiating conversations
a research tool
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
architecture basic communications

Internet

Elders

Family, Friends, Volunteers

Architecture:basic communications
architecture add a service

Internet

Family, Friends, Volunteers

Architecture:Add a service

Data Base

Web Site

Elders

Overnight Printing and SPAM security  Web site and minimal service

architecture platform for research new services and devices

Internet

Family, Friends, Volunteers

Architecture:Platform for Research: newServices and Devices

Services

CentralData Base

AutomatedComponents

Elders

Start with 3 grad students and a computer!

the process for service development

Internet

Family, Friends, Volunteers

The Process for Service Development
current research results
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
some service categories
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
one service email prompting
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)
example of dual use of the email prompting component
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.
what the data looks like
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)
organic development

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)
current research collaborations
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
some research candidates
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, …
what i want you to walk away with1
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
impact of commercial trials
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.
evolution and adaptation
Evolution and Adaptation
  • Nursing Rehabilitation
  • Senior center and hospice use of legacy products
  • At home and assisted living environments
family communications is therapy the impact longer healthier lives
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)
driven by research
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)
it is ironic that in the most connected age in history that elders are increasingly isolated
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

isolation loneliness
Isolation & Loneliness

(Physical & Mental) Decline

Loneliness

Depression

Isolation

Caregroup Communications

depression
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.
dementia
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. 
an assisted living resident using the caringfamily service
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.”
return messages are 1 button easy
Return Messages are 1-Button Easy

Elders send return messages with the touch of a single button – the CaringFamily Network takes care of routing

family engagement
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
resident engagement
Resident Engagement

Develops resident comfort with sending and receiving messages via the Magic Mailbox

  • Examples:
  • Pre-addressed Notepaper
  • Distribution Lists
  • Holiday Greetings
daily greetings
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
interactive family projects
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
cognitive exercises
Cognitive Exercises

Provides mental stimulation independent of active family participation

  • Examples:
  • Daily Puzzles
  • Provide the Punch line
  • Provide the Caption
  • Enhanced Exercises
expanding social circle
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
grandma s messages are 1 button easy
Grandma’s Messages are 1-Button Easy

Elders send handwritten return messages with the touch of a single button

families send email
Families Send Email…

Family members send messages via e-mail, CameraPhones, a family web site - including digital photos.

elders receive messages on paper
Elders Receive Messages On Paper

The elder’s “Digital Mailbox” prints messages, automatically, in full color…

the ecology of family communications what do families do
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
it s a dialog
It’s a Dialog
  • To the elder it is pencil and paper
message from mongolia

Message from Mongolia
  • Family communications is NOT a zero sum game. Each missive is a digital gift that provokes pleasure, obligation and reciprocal gift giving. A dialog begins…
  • Message to granddaughter in Mongolia  2 page response  forwarded to other relatives (and forwarding back to Mongolia)  Family responses to aging parent  …???
monitoring tools keep caregivers informed
Monitoring ToolsKeep Caregivers Informed
  • An innovative “early warning system” for senior care staff, based on changes in elder communication rates.
a service consists of
A Service Consists of:
  • Component services (a collection of zero or more)
  • Content - and their associated data bases, creation and management interfaces, ...etc. e.g.:
  • Wet ware - human customer service participants prior to automation or "distribution" to family web-site. 
  • Web Capabilities
  • Data Collection and Analysis Capabilities and interfaces.
  • Customer Service Interface(s)
  • Automated systems - back end software systems
  • Device(s)
  • Supporting element(s)
the nursing rehab program
The Nursing Rehab Program
  • Configured with either Mailroom Mailbox, shared room mailboxes or personal mailboxes
  • Get Well Cards, Thinking of you and Holiday Cards
  • Bedside Journal and/or Weekly Status report
  • Weekly Resident Card (assisted sending)
  • Member Rehab (fast start) prompting
  • Integration with Resident Check-in Process (local caregiver Email address)
  • Card Kiosk
  • Staff training, and prompting (reports and assisted sending)
a service consists of1
A Service Consists of:
  • Component service(s) (a collection of zero or more)
  • Content - and associated data bases, creation and management interfaces, ...etc
        • Member Prompting templates (and sequences)
          • Training
          • Recruiting
          • Reminding
        • Resident messages
          • Training
          • Configuration
          • Stationery
          • Cards
        • Member Cards (to be sent to resident)
        • Research templates (and sequences)
          • Consenting
          • Instruments
          • Soft instruments - surveys
        • FAQ's - web site explanation
        • Actual (i.e. paper) documentation - e.g. installation guides, product and program descriptions, ...etc.
a service consists of cont
A Service Consists of (cont):
  • Wet ware - human customer service participants prior to automation or "distribution" to family web-site.  Some services become completely automated or distributed, many of the larger services require human ("wet ware") customer service backup.
  • Web Capabilities - service components distributed to the family web site.
  • Data Collection and Analysis Capabilities and interfaces.
    • Communications log
    • Problem monitoring, recognition and tracking system
    • Customer contact log
    • Mailbox call-in and operations logs
    • literally dozens of these tools to support
a service consists of cont1
A Service Consists of (cont):
  • Customer Service Interface(s) - monitoring, wet ware implementation, problem tracking, ...etc.  I include in here the facility service interfaces such as the Wellness Director Interface and the research team custom interfaces.
  • Automated systems - back end software systems e.g.:
    • scan routing, dispatch
    • email gateway(s)
    • member recruiting
    • family discussion
    • tell-it-once
    • weekly newsletter generation
    • Caregroup, member, facilities, and messages database
a service consists of cont2
A Service Consists of (cont):
  • Device(s) e.g.:
    • Resident Mailbox, Community Mailbox, Staff Mailbox
    • Resident Computer
  • Supporting element(s) zero or more.  e.g.:
    • Instant Camera (part of Visit Cards, Facility Event Cards, ...etc.)
    • Kiosk (optional/supporting part of various Card and Report services)