Virtual Support for Caregivers of Persons  with Alzheimers Susan Toth-Cohen, PhD, OTR/L (SL: Zsuzsa Tomsen) Virtual Worlds...
Evolution of Work  Graduate Student Projects on Health & Wellness Exhibits & Research Study on Healthy  Aging Findings Hig...
<ul><li>Garden of Healthy Aging Stations (Topic Areas): </li></ul><ul><ul><li>Stress Management </li></ul></ul><ul><ul><li...
Group Meeting: Caring for the Caregiver
Caregiver Support Group Second Life ® <ul><li>Description:   </li></ul><ul><ul><li>Collaborated with the founder of a care...
Goals <ul><li>Provide OT consultation services </li></ul><ul><li>Educate caregivers & healthcare educators </li></ul><ul><...
Methods <ul><li>Initial consultation with support group leader </li></ul><ul><ul><li>Assisted with further development of ...
Outcomes <ul><li>Groups developed & implemented based on: </li></ul><ul><ul><li>Partnership relationship built rather than...
Timeline Group Development & Topics Based on slide from Jillian Fierenza (RL: Jillian Scavello) October November September...
Sample of Group Notices & Dissemination Strategies <ul><li>Group Notice From: Alzheimer caregiver support group </li></ul>...
Timeline January   – March 2011 <ul><li>Advocacy </li></ul><ul><li>- National Alzheimer’s Project Act   - Advocacy Plannin...
Additional Discussion -Why little interest in advocacy? (caregivers may have little time/energy for a support group; may p...
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Virtual support for caregivers of persons with alzheimers

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  • Conducted caregiver Support groups online Assisted Geri in implementing group Facilitated session with her assistance Interviewed Geri (determine meaning of experience) Found common themes Assisted Geri in continuing groups
  • Virtual support for caregivers of persons with alzheimers

    1. 1. 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, 2011 Supported by: The Department of Occupational Therapy and the Committee on Research, Thomas Jefferson University From Research on Healthy Aging to Health Literacy Education
    2. 2. Evolution of Work Graduate Student Projects on Health & Wellness Exhibits & Research Study on Healthy Aging Findings Highlight Need for Education and Support on Caregiving Partnership with Support Leader & Further Development of Caregiver Support Group Development of Program Interface Between Graduate Courses and Older Adult Health Literacy Occupational Therapy Center at Jefferson in Second Life Eduisland 2-Main Center Fatima’s Cherished – Garden of Healthy Aging <ul><li>Educate about Profession of Occupational Therapy </li></ul><ul><li>Promote Health & Wellness </li></ul><ul><li>Collaborate with Other Professionals </li></ul><ul><li>Train Graduate students </li></ul>
    3. 3. <ul><li>Garden of Healthy Aging Stations (Topic Areas): </li></ul><ul><ul><li>Stress Management </li></ul></ul><ul><ul><li>Spirituality </li></ul></ul><ul><ul><li>Healthy Brain </li></ul></ul><ul><ul><li>Living with Diabetes </li></ul></ul><ul><ul><li>Healthy Hearts </li></ul></ul><ul><ul><li>Healthy Caregiving </li></ul></ul><ul><ul><li>Healthy Activity </li></ul></ul><ul><ul><li>Social Support </li></ul></ul>12/18 participants identified as “Most Helpful”
    4. 4. Group Meeting: Caring for the Caregiver
    5. 5. Caregiver Support Group Second Life ® <ul><li>Description: </li></ul><ul><ul><li>Collaborated with the founder of a caregiver support group for caregivers of persons with Alzheimer’s disease to implement ongoing support group meetings </li></ul></ul><ul><ul><li>Invited caregivers and healthcare educators that deal with Alzheimer’s Disease/Dementia to participate in group </li></ul></ul><ul><ul><li>Collected data via transcripts of group meetings and an interview with the support group leader </li></ul></ul><ul><ul><li>Jillian Scavello, MS, OTR/L (SL: Jillian Fierenza) Final Masters Project </li></ul></ul>
    6. 6. Goals <ul><li>Provide OT consultation services </li></ul><ul><li>Educate caregivers & healthcare educators </li></ul><ul><li>Assist caregivers and educators in beneficial caregiving strategies </li></ul><ul><li>Build problem solving skills </li></ul><ul><li>Provide a supportive role </li></ul><ul><li>Encourage relationship building </li></ul><ul><li>Advocate for AD & caregivers </li></ul>Slide from Jillian Fierenza (RL: Jillian Scavello)
    7. 7. Methods <ul><li>Initial consultation with support group leader </li></ul><ul><ul><li>Assisted with further development of caregiver support group </li></ul></ul><ul><li>Facilitation of caregiver support groups </li></ul><ul><ul><li>Provided continuous support to leader </li></ul></ul><ul><ul><li>Assisted in continuous development of groups </li></ul></ul><ul><li>Interview to gain insight into support group leader’s perspective </li></ul>Slide from Jillian Fierenza (RL: Jillian Scavello)
    8. 8. Outcomes <ul><li>Groups developed & implemented based on: </li></ul><ul><ul><li>Partnership relationship built rather than OT expert </li></ul></ul><ul><ul><ul><li>View caregiver as lay-practitioner </li></ul></ul></ul><ul><ul><ul><li>Client-centered care </li></ul></ul></ul><ul><ul><li>Develop an understanding of personal values/beliefs </li></ul></ul><ul><ul><li>Education/Skills training Discussion based on needs of caregiver </li></ul></ul><ul><ul><li>Encourage resource use & access </li></ul></ul>Slide from Jillian Fierenza (RL: Jillian Scavello)
    9. 9. Timeline Group Development & Topics Based on slide from Jillian Fierenza (RL: Jillian Scavello) October November September August <ul><li>Initial </li></ul><ul><li>Organizational Meeting </li></ul><ul><li>1: Manage </li></ul><ul><li>Difficult </li></ul><ul><li>Behaviors </li></ul>Future Topics (Generate ideas with participants) - 2: Adapting To The Changed Person - 3: Caring for the caregiver <ul><li>4: The Shriver Report </li></ul><ul><li>5: Preventing AD </li></ul>
    10. 10. Sample of Group Notices & Dissemination Strategies <ul><li>Group Notice From: Alzheimer caregiver support group </li></ul><ul><li>Please join us for a discussion of &quot;Care for the caregiver,&quot; 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. </li></ul>Slide from Jillian Fierenza (RL: Jillian Scavello) Announce-ments to Groups Search Conducted for AD groups on SL Refinement to strategies made accordingly Event Notices Advertise- ments on SL
    11. 11. Timeline January – March 2011 <ul><li>Advocacy </li></ul><ul><li>- National Alzheimer’s Project Act - Advocacy Planning (no attendees) </li></ul><ul><li>Revisiting Direction of Group and Project </li></ul><ul><li>Application for Funding of New Project </li></ul><ul><li>- Second Life® as a training center for evidence-based consumer education </li></ul><ul><li>-Promotion of Health Literacy in both virtual and clinical settings </li></ul>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. December <ul><li>Art and Alzheimer’s </li></ul>
    12. 12. Additional Discussion -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 in real 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)

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