Virtual Support for Caregivers of Persons

with Alzheimers

Susan Toth-Cohen, PhD, OTR/L (SL: Zsuzsa Tomsen)Virtual Worlds Best Practices in Education Conference

March 18, 2011Supported by: The Department of Occupational Therapy and the

Committee on Research, Thomas Jefferson University

From Research on Healthy Aging to

Health Literacy Education

Evolution of Work

Graduate StudentProjects on

Health & Wellness

Exhibits & ResearchStudy on Healthy

Aging

Findings HighlightNeed for Education

and Support onCaregiving

Partnership withSupport Leader & Further Development of Caregiver

Support Group

Development of Program InterfaceBetween Graduate Courses and

Older Adult Health Literacy

Occupational Therapy Center at Jefferson in Second Life

Eduisland 2-Main Center

•Educate about Profession of Occupational Therapy•Promote Health & Wellness•Collaborate with Other Professionals•Train Graduate students

Fatima’s Cherished – Garden of Healthy Aging

Garden of Healthy AgingStations (Topic Areas):

Stress ManagementSpiritualityHealthy BrainLiving with DiabetesHealthy HeartsHealthy CaregivingHealthy ActivitySocial Support

12/18 participants identified as “MostHelpful”

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Group Meeting: Caring for the Caregiver

Caregiver Support GroupSecond Life®

Description: Collaborated with the founder of a caregiver support group for caregivers of persons with

Alzheimer’s disease to implement ongoing support group meetings Invited caregivers and healthcare educators that deal with Alzheimer’s Disease/Dementia to

participate in groupCollected data via transcripts of group meetings and an interview with the support group

leader

Jillian Scavello, MS, OTR/L (SL: Jillian Fierenza)Final Masters Project

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GoalsProvide OT consultation servicesEducate caregivers & healthcare educatorsAssist caregivers and educators in beneficial

caregiving strategiesBuild problem solving skillsProvide a supportive roleEncourage relationship buildingAdvocate for AD & caregivers

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Slide from Jillian Fierenza (RL: Jillian Scavello)

Methods

Initial consultation with support group leaderAssisted with further development of caregiver

support groupFacilitation of caregiver support groups

Provided continuous support to leaderAssisted in continuous development of groups

Interview to gain insight into support group leader’s perspective

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Slide from Jillian Fierenza (RL: Jillian Scavello)

Outcomes

Groups developed & implemented based on:Partnership relationship built rather than OT

expert View caregiver as lay-practitionerClient-centered care

Develop an understanding of personal values/beliefs

Education/Skills training Discussion based on needs of caregiver

Encourage resource use & access

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Slide from Jillian Fierenza (RL: Jillian Scavello)

Timeline9

OctoberNovembe

rSeptemb

erAugust

-Initial Organizational Meeting

- 1: ManageDifficult

Behaviors

Future Topics

(Generateideas withparticipant

s)

- 2: Adapting

ToThe

Changed Person

- 3: Caring for the

caregiver

- 4: The Shriver Report

- 5: Preventing

AD

Based on slide from Jillian Fierenza (RL: Jillian Scavello)

Sample of Group Notices & Dissemination StrategiesGroup Notice From: Alzheimer caregiver support group

Please join us for a discussion of "Care for the caregiver," at our Alzheimer's care giver support group, which continues with concepts from the best-selling book, The 36 Hour Day. Occupational Therapy Graduate student Jillian Fierenza will lead the discussion about ways to care for yourself and prevent burnout when caring for a person with Alzheimer's or dementia.

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Announce-ments to Groups

Search Conducted for AD

groups on SL

Refinement to

strategies made

accordingly

Event Notices

Advertise-ments on

SL

Slide from Jillian Fierenza (RL: Jillian Scavello)

Timeline

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January – March 2011December

-Art and Alzheimer’s

Advocacy -National Alzheimer’s Project Act - Advocacy Planning (no attendees)Revisiting Direction of Group and ProjectApplication for Funding of New Project-Second Life® as a training center for evidence-based consumer education -Promotion of Health Literacy in both virtual and clinical settings

Courses include specific content about Alzheimer’s disease, the aging process, common issues in aging, and ways to adapt physical and social environments to promote healthy aging and aging in place.

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-Why little interest in advocacy?(caregivers may have little time/energy for a support group; may prefer use of SL as escape)-How to generate more interest in group/get the word out? (spread the word inreal world communities, e.g., OTs; advertise in other support groups)

-Will group continue? (yes)-Who were caregivers in initial study (50 years old+ caring for parents)