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Caregiver Connection - Barry

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Lauren Lapon

on 8 December 2012

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Transcript of Caregiver Connection - Barry

Timeline Progress / Results Significance Background Purpose Mission About Alzheimer’s Literature Caregiver Connection Shelly Holiman, Lauren Lapon, & Sarah Zingali Caregiving Barry University Barry University THANK YOU
BARRY UNIVERSITY!!! Many sufferers of AD reside at home and there is a need to improve caregiver well-being
Many caregivers seek better ways to cope with the progressive nature of AD; however, they are often unable to attend traditional support groups
Caregiver resources are often unavailable due to:
•Costs •Difficulty arranging for help •Inaccessible meeting places •Scheduling conflicts and other logistical problems •Exhaustion, physical and emotional stress
Caring for a relative with AD involves substantial personal, social, and health costs
Caregiver Connection provides health benefits and cost savings for the caregiver, practitioner, and healthcare industry – limits travel time, provides effective therapeutic strategies, reaches larger populations, presents necessary support and education, and analyzes the impact of technological advances in OT Demands of caregiving can be very overwhelming and challenging without adequate support
5.1 million Americans have AD and financial and social burden are expected to rise
Caregivers of adults with AD are faced with challenges and may not have available resources Time is being spent assisting family members with ADLs, IADLs, emotional support, and companionship
Interaction between caregiving stressors and other life stressors contribute to physical and emotional problems for the caregiver
Caregivers often have other occupational roles and no time to attend face-to-face support groups Gap is growing between needs and resources available in the following areas: health promotion, stress management, and lifestyle enhancement
Technology based support groups are providing support to caregivers and increasing QOL
Communities need to take action by using innovation and creativity to connect with caregivers The online Caregiver Connection provides:
•meaningful connections •education •time efficiency
•caregiver support •reduction of healthcare and transportation cost •convenience for participants
It highlights OTs as educators and advocates for patients and families
The website will have societal benefits as it will foster improved adaptation and coping skills The online Caregiver Connection website graduate project intends to appeal to populations of caregivers who currently have live-in family members with AD
Difficult for caregivers to leave the family member unattended and, therefore, they are unable to attend/participate in traditional support groups and connect with individuals in similar situations
The inability to attend meetings and connect with others may lead to symptoms of anxiety, depression, and feelings of isolation Background (cont.) Project Design Project Design (cont.) Support http://bluehandwebdesign.com/dev/caregiver_connection/index.html# Creation of a website called Caregiver Connection which provides social support and contains information regarding self-care strategies for caregivers of individuals with AD
The site will provide:
stress management techniques
coping skill strategies
educational resources
social support via interactive chat room Design Participants include caregivers of individuals with Alzheimer’s disease
Individuals must have computer and internet accessibility
Exclusions include individuals with immediate plans to institutionalize their family member. Instructive website developed and comprised of information such as:
What is Alzheimer’s disease • What are the stages and typical behaviors associated with Alzheimer’s disease • Caregiver education (e.g. coping skills, relaxation techniques, time management strategies, and additional resources)

Live meeting interactive site for participants to communicate face-to-face and offer support.
Live meeting monitored and facilitated by OT students
Grad project pilot for 2 weeks including 8 adults to evaluate the site and the live meeting
Upon completion, participants provide feedback through an online survey
Feedback used to provide enhancements to the website and to assess effectiveness Protocol Participants Survey will be available as a feature of the website
Participants will complete an online survey upon completion of the final session
Information will provide insight on the efficacy of the site and the interactive chat room
Information will be examined regarding:
•level of satisfaction
•level of support received
•overall knowledge gained from the website
•opportunities for improvement to ensure that further enhancements can be made to the website Outcome Measures Data analyzed using descriptive statistics to establish relationships among participants and effectiveness of the project

Information will be shared in the final project reflection Analysis Graduate Project Proposal Draft has been completed
All finalized information for the Home Page, Caregiver Connection Survey, and Tab 1 has been installed on the website
Titles for the remaining tabs (2-4) and corresponding sub-tabs have been chosen and added to the caregiver website
Research on the sub-tab topics has been completed and information to include on website has been selected
The web-design and layout for the site have been developed and are currently being installed The purpose of the online Caregiver Connection website:
Provide caregivers with therapeutic strategies to reduce caregiver burden, as well as relevant educational resources on AD
Provide a private interactive online community utilizing a live meeting feature that allows caregivers to directly communicate face-to-face via webcam without leaving their homes
Provide a non-traditional outlet for caregivers that enables them to connect with others
Encourage caregivers to discuss feelings, worries, concerns, and other related topics during non-traditional support
group sessions Goal: To build a peer support network, lessen caregiver burden,
and provide beneficial information on AD to caregivers Improving the health of caregivers of persons with Alzheimer’s disease by providing significant awareness, social support, therapeutic interventions, and educational tools that will increase overall caregiver wellbeing and quality of life, while enhancing knowledge of the disease. Website Completion of all four tabs and sub-tabs on website by January 5, 2013
Completion of entire website by January 19, 2013 Live meeting session held with a total of 8 participants week of January 20, 2013
Analysis of data collected week of February 3, 2013
Reflection paper turned in by February 10, 2013 Most common form of dementia
Dementia is a group of brain disorders that cause progressive loss of intellectual and social skills
Causes problems with memory, thinking, and behavior
Occurs most frequently in the elderly population
Alzheimer’s disease is a progressive degenerative disorder that interferes with daily activities Increasing demands in caring for an individual with AD may lead to caregiver anxiety, burnout, depression, and stress
Poor health & depression among caregivers are predictors that those with AD will be placed in an institution
Technology is critical to providing support to caregivers
Research has proven face-to-face interventions to be effective for caregivers
Internet-based group interventions are being studied and measured on their effectiveness in reducing caregiver burden Lack of information on web-based interactive support groups for caregivers
Further research needed to address the mix of technology, information, and human interface as it pertains to caregiver wellbeing
Need to evaluate long-term impact of web-based intervention programs with a larger population
Greater emphasis should be placed on creating services that address increased burden and distress
OTs need to be familiar with evidence-based interventions that support both patient and caregiver Caring for Others, an internet-based psychosocial intervention program offers face-to-face support group via video-conferencing – comparative to traditional support programs
61% of the caregivers felt it was helpful, 30% indicated it was almost as helpful as face-to-face
Especially successful with caregivers from rural areas
90% stated extremely or very positive experience in a 2nd study, 95% felt it met expectations on coping strategies Internet-based support groups can replicate face-to-face groups to achieve comparable outcomes
IVR helped caregivers better manage the care of family members with behavioral problems
IVR research has shown to be beneficial for those uncomfortable with face-to-face counseling
93% of caregivers from CITS intervention found family conference calls valuable
72% found that the screen phone made it easier to communicate with their families
Minimal participation in a telesupport group was found to be beneficial to women 65+ Literature (cont.) Small sample size, subjective measures, and high dropout rates
Difficulty assessing intervention effectiveness due to challenges defining caregiver burden
Difficulty relating due to different caregiving experiences
Lack of diversity in ethnicity, race, education, and income
Lack of information on whether the intervention reduced the use of health services or delayed institutionalization Caregiver Connection Research Limitations Supportive Findings The cognitive behavioral frame will be supporting the Caregiver Connection project.
The focus of the cognitive behavioral framework is “on how thought and information processing can become distorted and lead to maladaptive emotions and behavior” (Jacobs & Jacobs, p. 46, 2009).
This framework supports specific occupational therapy approaches including the psycho-educational group approach, the self-regulation model, and the social and life skills training model.
Cognitive behavioral therapy refers to the usage of various approaches and techniques of self-regulation for the purpose of modifying thinking and behavior.
According to research findings of Thinnes and Padilla (2011), cognitive behavioral therapy appears to be the most effective frame of reference to use for caregiver support interventions in occupational therapy as it builds on success. Theoretical Framework References
Cole, M. B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical
approach. Thorofare, NJ: SLACK Incorporated.
Czaja, S.J., & Rubert, M. P. (2002). Telecommunications Technology as an Aid to Family
Caregivers of Persons with Dementia. Psychosomatic Medicine, 64(3), 469-476.
Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/12021420
Finkel, S., Czaja, S.J., Schulz, R., Martinovich, Z., Harris, C., & Pezzuto, D.(2007). E-Care: Atelecommunications technology intervention for family caregivers of dementia patients. American Journal of Geriatric Psychiatry, 15(5), 443-448.
Glueckauf, R., & Loomis, J. (2003). Alzheimer’s caregiver support online: lesions learned,
initial findings and future directions. Neurorehabilitation, 18(2), 135-146.
Jacobs, K., & Jacobs, L. (2009). Quick reference dictionary for occupational therapy (5th ed.)
Thorofare, NJ: SLACK Incorporated.
Mahoney, D.F., Tarlow, B. J., & Jones, R. N. (2003). Effects of an automated telephone support
system on caregiver burden and anxiety: Findings from the REACH for TLC intervention
study. The Gerontologist, 43(4), 556-67. Retrieved from http://ezproxy.barry.edu/ login?url=http://search.proquest.com/docview/210976904?accontid=27715 Marziali, E., Donahue, P., & Crossin, G. (2005). Caring for others: Internet health care support
intervention for family caregivers of persons with alzheimers, stroke, or parkinsons disease. Families in Society, 86(3), 375-383. Retrieved from http://ezproxy.barry.edu/ login?url=http://search.proquest.com/docview/230161843?accountid=27715
Marziali, E., & Donahue, P. (2006). Caring for others: Internet video-conferencing group
intervention for family caregivers of older adults with neurodegenerative disease. The
Gerontologist, 46(3), 398-403. Retrieved from http://search.proquest.com.ezproxy.barry.
Marziali, E., & Garcia, L. (2011). Dementia caregivers’ responses to 2 internet-based
intervention programs. American Journal of Alzheimer's Disease & Other Dementias, 26(1), 36-43. doi:10.1177/1533317510387586
Thinnes, A., & Padilla, R. (2011). Effect of educational and supportive strategies on the ability of caregivers of people with dementia to maintain participation in that role. The American Journal of Occupational Therapy, 65(5), 541-549.
U.S. Department of Health and Human Services, National Institutes of Health, National Institute
on Aging. (2011). 2010 Alzheimer’s disease progress report: A deeper understanding.
Retrieved from http://www.nia.nih.gov/sites/default/files/2010_alzheimers_disease_ progress_ report.pdf
Winter, L., & Gitlin, L. N. (2007). Evaluation of a telephone-based support group intervention for female caregivers of community-dwelling individuals with dementia. American Journal of Alzheimer’s Disease and Other Dementias, 21(6), 391-397. doi:10.1177/1533317506291371 Welcome! Thank you for being here today and
viewing our presentation http://bluehandwebdesign.com/dev/caregiver_connection/index.html# Website Caregiver Connection Caregiver Connection Caregiver Connection
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