CaringFamilyCaringFamilyConnecting Elders, Empowering CaregiversConnecting Elders, Empowering Caregivers

Michael D. Williams, Ph.D.Michael D. Williams, Ph.D.

State of the Science ConferenceState of the Science ConferenceOct 25-26, 2007Oct 25-26, 2007

What I want you to walk away withWhat 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 research platform 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 – Basic capabilities – (you have likely already (you have likely already seen the mock-up and samples at the booth)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?!)

Far more than eMail! All of Life.

For Example: Emotional WellnessFor Example: Emotional Wellness

Facility Staff: in the loopFacility Staff: in the loop

• Staff Knowledge• Assisted Sending• Direct communications with family• Initiating conversations

A Research ToolA 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:Architecture: basic communicationsbasic communications

Family, Friends, Volunteers

Elders

Architecture:Architecture: Add a Add a serviceservice

Family, Friends, Volunteers

Elders

Data BaseWeb Site

Overnight Printing and SPAM security Web site and minimal service

Architecture:Architecture: Platform for Research: Platform for Research:

newnew ServicesServices and and DevicesDevices

Family, Friends, Volunteers

…

Elders

CentralData Base

Services

AutomatedComponents

Start with 3 grad students and a computer!

The Process for Service DevelopmentThe Process for Service Development

Family, Friends, Volunteers

…

Current research resultsCurrent 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” CategoriesSome “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 PromptingOne 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 Example of Dual use of the eMail Prompting ComponentPrompting 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) ProcessesThis automation is what allows the economic running and

analysis of hundreds (even thousands) of subjects with a small research team.

What the data looks likeWhat 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)

Seeing into this ecology of family Seeing into this ecology of family communicationscommunications

Organic DevelopmentOrganic 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 CollaborationsCurrent 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 CandidatesSome Research Candidates

MemoryBooks – Purposeful activitiesImpact of affective communicationsFamily Decision MakingTele-consulting - InReachSocial Network Effects – Convoys, perceived connectionsEmerging Best PracticesAssisted SendingFacility Staff KnowledgeBedside Journal – Family AwarenessPrompting, Voice, Empowering the Kin-Keeper, …

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 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

Extra SlidesExtra Slides

Impact of Commercial TrialsImpact 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 AdaptationEvolution and Adaptation

Nursing Rehabilitation

Senior center and hospice use of legacy products

At home and assisted living environments

Family Communications IS TherapyFamily Communications IS TherapyThe Impact: Longer, Healthier LivesThe Impact: Longer, Healthier Lives

Enjoy regular mental stimulationActive participation in cognitive activities is associated with a 63% reduction in the risk of developing dementia.

(New England Journal of Medicine 2003)

Studies show that regular interaction with family & friends produces compelling therapeutic benefits.

CaringFamily delivers on that promise, by helping elders:

Sustain social connectionsSocially 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 ResearchDriven 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 It is ironic that in the most connected age in history that elders are increasingly isolated.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

Capabili

ty

Crises over Time

Loss of Spouse,

Diabetes,

Car Keys, Broken Hip,

Arthritis, Vision,

Isolation

(Physical & Mental) Decline

Loneliness Depression

Caregroup Communications

Isolation & LonelinessIsolation & Loneliness

DepressionDepression

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.

DementiaDementia

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 An Assisted Living Resident using the CaringFamily serviceusing 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 EasyReturn Messages are 1-Button Easy

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

One Button – we mean it!One Button – we mean it!

A Popular FrameworkA Popular Framework

Community Communications MetricsCommunity Communications Metrics

Family EngagementFamily Engagement

Examples:• Family Newsletter• Holiday Greetings• Family Photos• Caregiver Updates• Geriatric Consultations• Discussion Board

Increases the participation of family – encourages more members to send more messages

Resident EngagementResident Engagement

Examples:

• Pre-addressed Notepaper

• Distribution Lists

• Holiday Greetings

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

Daily GreetingsDaily Greetings

Examples:

• Family Weather

• Photos of the Day

• Daily Inspiration

• Daily Humor

• Hometown News

• Topical Newsletters

Provides a base-level of one-way communications to residents – keeps spirits up

Interactive Family ProjectsInteractive Family Projects

Examples:

• Weekly Scrapbook

• Resident Artist

• Life Stories

• Shared Memories

• Daily Journal

• Family Photo Stories

Ongoing two-way activities providing meaningful work and substantive family dialog

Cognitive ExercisesCognitive Exercises

Examples:

• Daily Puzzles

• Provide the Punch line

• Provide the Caption

• Enhanced Exercises

Provides mental stimulation independent of active family participation

ExpandingExpanding Social Circle Social Circle

Examples:• Elder Adoption• Pen Pals• Adopt a Classroom• Welcoming Party• Church Connections• Lifetime Connections• Interest Groups

Reaches beyond family and friends - for more active residents and/or less active families

Grandma’s Messages are Grandma’s Messages are 1-Button Easy1-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 PaperElders Receive Messages On Paper

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

Social WellnessSocial Wellness

A PurposeA Purpose

Spiritual WellnessSpiritual Wellness

Intellectual WellnessIntellectual Wellness

The Ecology of family communications: The Ecology of family communications: What do families DO?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

CoachingIntellectual stimulusFamily Events – in the flowTo have a purpose, to participate - projectsBoth ways! (elder scans, family mail)Spiritual Support - Jokes, jokes, jokes – have you laughed today?Instrumental Support (bills, taxes, …)Informational Support

Beyond e-Mail: Digital GiftsBeyond e-Mail: Digital Gifts

It’s a DialogIt’s a Dialog

To the elder it is pencil and paper

Message from MongoliaMessage 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 …???

…

Elder Response Rate

0%

20%

40%

60%

80%

100%

120%

1/1/

2004

1/8/

2004

1/15

/200

4

1/22

/200

4

1/29

/200

4

2/5/

2004

2/12

/200

4

2/19

/200

4

2/26

/200

4

3/4/

2004

3/11

/200

4

Weekly

Res

po

nse

Major Changes in Communications Major Changes in Communications ProblemsProblems

Monitoring ToolsMonitoring ToolsKeep Caregivers InformedKeep 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 ProgramThe 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 of: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 (cont):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 (cont):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)