caregivers supporting people with dementia: new research and technology 2015 acl/cdc/nia webinar...
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Caregivers Supporting People with Dementia: New Research and Technology
2015 ACL/CDC/NIA Webinar Series on Alzheimer’s & Related Dementias
November 17, 2015
DISCLOSURE STATEMENTS
In compliance with continuing education requirements, all presenters must disclose any financial or other associations with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters as well as any use of unlabeled product(s) or product(s) under investigational use. CDC, our planners, presenters, and their spouses/partners wish to disclose they have no financial interests or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters. Planners have reviewed content to ensure there is no bias. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use.
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A collaboration of the Administration for Community Living,
the Centers for Disease Control and Prevention and the National Institute on Aging of the National Institutes of Health
Welcome to the 4th Annual Webinar Series
on Alzheimer’s & Related Dementias
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2015 Webinar Series
• Past webinars (2012-2015) available at: http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/index.aspx#resources
• CEUs available for up to 2 years
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Today’s Speakers
• Moderator: Erin Long, MSW, ACL• Darby Morhardt, PhD, LCSW, Cognitive Neurology and
Alzheimer’s Disease Center, Northwestern University• Alicia Blater, MS, North Carolina Division of Aging and
Adult Services• Jill Kagan, MPH, ARCH National Respite Network and
Resource Center• Carol Farran, PhD, Rush University Medical Center/
Rush College of Nursing
Caregiving: Supporting People with Dementia
Darby Morhardt PhD, LCSWCognitive Neurology and Alzheimer’s Disease CenterNorthwestern University Feinberg School of Medicine
Outline
•Caregiving – Who, What, Why
•Caregiving – Factors that impact the experience
•Caregiving - Evidence based interventions
Caregivers for Persons with Dementia
Who are they?• Majority of persons with dementia are
community-dwelling.• Majority (85%) are cared for by family and
friends• More than 15 million Americans are caring
for person with dementia• Majority are spouse/partners• Approximately 2/3 are women• 34% are 65+
Alzheimer’s Association Facts & Figures, 2015
Why do they care?• Love and reciprocity• Duty, obligation, guilt• Social pressures
The Consequences of Caregiving
Financial- Early retirement- Reduced income- Insurance
Physical 74% reported concern about maintaining their physical health
- Increased frailty- Increased chronic conditions- Poorer global health- Higher mortality
Life Quality- ~ 60% have high to very high
emotional stress- ~ 40% suffer from depression
compared to 5-15% of non-caregivers of similar ages
- Depression rates increase with illness/symptom severity/dementia
• Behavioral symptoms of the person with dementia
• Co-existing medical conditions of the person with dementia
Other Factors that Impact Caregiving
Physiological Relational• Lack of perceived help from other
family members and friends / conflict
• Changing roles• Diminishing reciprocity• Balancing caregiving and self-care• Belief that one has no choice about
caregiving• Personality characteristics of the
caregiver and the care recipient• Prior relationship• Ambiguity and uncertainty
Impact of Dementia Caregiving on Well-Being: Finding Meaning
• Why do some caregivers for persons with dementia manage fairly well while others do not?
• Linkage between relationship continuity and caregivers’ sense of gratification, frustration, and rewards.
• Dynamics of meaning making within the caregiver role have been explored as a way of coping.
Farran et al., 1997
• Studies suggest that caregivers who find meaning through caregiving may experience a partial reduction in burden.
What Helps?
State of the Science• 30 years of 200+ intervention studies• 7 meta-analyses, 17 systematic
reviews suggest a strong evidence exists for translating research into practice
Family Caregiver Intervention Treatment Modalities• Professional Support• Psychoeducational• Behavior management/skills training• Counseling/psychotherapy• Self-care/relaxation techniques• Environmental redesign• Multicomponent
Gitlin, L., et al. (2015). Translating evidence-based dementia caregiving interventions into practice: state of the science and next steps, The Gerontologist, 55(2).
Evidence based caregiver interventions
Outcomes• Increased caregiver knowledge and
understanding of memory problems• Decreased caregiver stress and
depression• Better behavioral symptom
management
Gitlin, L., et al., 2015; Gould, Hughes, O’Keefe, & Weiner, 2014; Brodaty & Arasaratnam, 2012
Limitations• Lack of diversity / generalizability
- Demographic subgroups underrepresented• Men, minority populations, rural, long-
distance, multiple carers
• Long-term effectiveness
“No two people with dementia, and no two families are alike in their needs for care and
support.”
“Maintaining or enhancing quality of life is the ultimate objective.”
2013 World Alzheimer’s Report
Maximizing Respite Time and Reducing Caregiver
Burden
A Glimpse of North Carolina’s Efforts to Enhance Respite Time for Family Caregivers
November 17, 2015
Alicia Blater, M.S., APRFamily Caregiver Support Program Consultant
Lifespan Respite Project DirectorNC Division of Aging and Adult Services
History and Timeline of Effort• NC one of eight states awarded Lifespan
Respite Care Program Expansion Supplement grant in 2012
• 1 year effort focused on direct respite services for previously identified gap populations
• Request for Application process netted awards to nine local respite/caregiver service providers totaling $135,657
Mini-Grant Recipients
Alamance ElderCareAdult Center for EnrichmentCarePartners Adult Day ServicesCommunity Adult Respite Experience, Inc.Montgomery County Council on AgingThe ARC of Davidson County, Inc.First in Families of North CarolinaEarly Memory Loss Collaborative, Park Ridge HealthLand of Sky AAA Senior Companion Program
Translating the Research
In addition to increasing respite service to underserved populations and challenging them to be sustainable, NC also wanted to add a respite planning exercise to the requirements for respite mini-grant recipients, and to measure its impact on caregiver burden.
Maximizing Respite Planning Tool
Basis of project stemmed from earlier research done by Dale A. Lund and colleagues at California State University at San Bernardino and the University of Utah. Findings supported that:
Respite use does not automatically translate to lower burden/less stress for caregivers
One study showed 46% of caregivers reported being only somewhat or not satisfied with how they spent their respite time
Studies showed when a caregiver uses their respite time to do what they intended to do, he/she may feel less burden and more satisfaction with their caregiving role
Why Try to Impact What Caregivers do with their Respite Time?
Next to payment for family caregiver duties (which is not provided), respite is most requested service in NC for caregivers of older adults and persons with dementia
Average respite voucher/service awarded from OAA funds ranges from $500 to $2000 per year, per family
Mini-Grant recipients would also have limited respite funding per caregiver (averaged $577 per family)
With flat funding, we looked at how to enhance the value of what we could provide family caregivers
InterventionMini-grant recipients tested a respite planning tool we
adapted from Lund and colleagues’ published works, “Getting the Most Out of Respite” and “Time for Living and Caring”
Mini-grant recipients were instructed to present the “Setting Goals to Maximize Your Respite Time” to caregivers at the intake or registration process. If not able to present in person, they were to telephone caregiver, instruct them about the possible benefits of planning their time, and mail caregiver the tool.
Setting Goals to Maximize Your Respite Time
“On this sheet of paper, please write down one to three specific goals of what you would like to accomplish during your respite time this week/month. Your goals can be anything (e.g., sleeping, cleaning, going to lunch with a friend), but they must be attainable during the respite time that is available to you. We recommend that you choose activities that: you have always enjoyed doing;you did before you became a caregiver but may not have been doing lately;have religious or spiritual meaning to you;may improve satisfaction with caregiving;may reduce the stress you might feel from caregiving;may increase your respite time;encourage you to use your respite more regularly.” Goals:________________________________________________________ ________________________________________________________
Data Collection MethodCaregivers who received a respite voucher were given a
Pre-Respite Form which included a demographic questionnaire and a 16-item Caregiver Burden Assessment
Post survey completed after respite was used and contained the Caregiver Burden Assessment and a 4-item satisfaction questionnaire regarding their use of the tool
Pre and Post surveys were coded in pairs and submitted to NC DAAS once both pieces were complete
79 of 235 caregivers completed both pre and post questionnaires
Average Changes in Caregiver Burden by Caregiver-Care Recipient Relationship
Caregiver (CG) – Care Recipient (CR) N Pre-Respite Mean
Post-Respite Mean
Child (CG) – Parent (CR) 39 7.64 4.76Parent (CG) – Child (CR) 19 4.47 2.77Spouse (CG) – Spouse (CR) 15 8.67 5.20Grandchild (CG) – Grandparent (CR) 5 9.00 7.00Niece/Nephew (CG) – Aunt/Uncle (CR) 4 8.00 5.50Sibling (CG) – Sibling (CR) 3 4.67 2.33Friend (CG) – Friend (CR) 2 7.00 1.00*Grandparent (CG) – Grandchild (CR) 1 0.00 -Note: Scores on the 16-item form can range from 0 (no burden) – 16 (high burden), where a decrease in score equates to a decrease in caregiver burden*Only one caregiver in this dyad completed the post-respite form therefore it could not be included in the Repeated Measures ANOVA analysis
Changes in Caregiver Burden as a Function of Respite Consultation
Pre-Respite Post-Respite
Consultation with Provider 7.61 4.54
No Consultation with Provider
5.10 4.50
Note: Scores on the 16-item form can range from 0 (no burden) – 16 (high burden), where a decrease in score equates to a decrease in caregiver burden
Effect of respite planning on caregiver burden scores
A Repeated Measures ANOVA was conducted to examine whether or not the provider discussing respite planning with the caregiver had an effect on the caregiver burden scores. An effect was found such that average caregiver burden scores significantly declined from pre- to post-respite only for those caregivers that talked to their provider about respite planning.
Burden scores did decline for those caregivers that did not receive consultation from their provider on respite planning, but the decline was not significant.
What we learned…
• Timing and approach seem to be key elements in introducing and using the “Setting goals to Maximize Respite Time” planning tool. Not everyone responds to writing down goals, but for some the process was “life-changing”
• Given that there was not a comparison group in the study, we cannot say that the significant decrease in caregiver burden was a direct result of the intervention, but we can hypothesize that the respite service along with the “Consultation” has a positive effect on the caregiver.
How NC Using the Tool Today• Planning Tool is part of respite voucher application packet
whenever anyone applies for a $500 respite voucher from NC Respite Care Coalition
• Original nine grantee providers and multiple other providers now using tool exactly as developed or as basis for caregiver consultation discussion during care planning
• Distribution through state’s Family Caregiver Support Program and 16 Area Agencies on Aging
• Multiple presentations on Planning and Using Respite Time happening throughout state for National Family Caregiver Month
One example of many… A man moved out of the home he shared
with his wife to stay at his parents’ home to take care of them.
He was awarded a $500 respite voucher from his local Area Agency on Aging using FCSP funds. He was given the “Setting Goals” planning tool and instructed to consider using it. He did, and planned a weekend fishing trip with his wife.
After the fishing trip he called the AAA and thanked them for the respite and fishing trip that “changed his life” and made him a new man.
He sought respite when needed and was able to continue caring for his parents until their passing. He and his wife are now living together again.
Building an Evidence-base for Respite – New Research Directions
Caregivers Supporting People with Dementia: New Research and TechnologyNovember 17, 2015
Respite as a Family Caregiver Intervention
Definition of Respite
Respite is planned or emergency care that provides a family
caregiver some time away from caregiver responsibilities, and
results in some measurable improvement in the well-being of
the caregiver, care recipient, and/or family system.
Source: ARCH (2015). A Research Agenda for Respite Care, Deliberations of an Expert
Panel of Researchers, Advocates and Funders.
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Underutilization of Respite Despite Need
Respite use underutilized and/or delayed among caregivers of persons with dementia
Almost half (45%) of caregivers surveyed had unmet needs for mental health care; of these, most needed emotional support or respite care. (Source: Black, et al, 2013 – Johns Hopkins Maximizing Independence at Home Study)
85% of estimated 40 million family caregivers caring for an adult have not used respite, despite the fact that 46% of caregivers for someone with dementia say respite would be helpful (National Alliance for Caregiving and AARP Public Policy Institute, 2015).
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Barriers to Respite
Cost Reluctance to use respite Shortage of qualified providers Limited respite options Caregiver feelings of loss of control, sadness, guilt,
and a sense of failure if respite care is needed has been documented among family caregivers of individuals with dementia
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Building an Evidence-base for Respite
Need for evidence-base for respite Convening of Expert Panel on Respite Research
Members: http://www.lifespanrespite.memberlodge.org/Resources/Documents/Expert%20Panel/Panel_Members.pdf
Panel Goals: http://www.lifespanrespite.memberlodge.org/Resources/Documents/Expert%20Panel/Final_Goals_11-24-13.pdf
ARCH Literature Review Annotated Bibliography of Respite and Crisis Care Studies
http://archrespite.org/images/docs/Bibliographies/Annotated_Bibliography_For_Print.pdf
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Status of Respite Research Field
Research focused on individuals with dementia, including Alzheimer’s
Most studies looked at adult day services primarily
Research focused on care recipient outcomes, rather than caregiver outcomes (e.g., sleep patterns, disruptive behaviors)
Respite as part of multi-component caregiver support program
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What does the Research Say?
Caregiver satisfaction
Decreased depression, caregiver burden
Dose of respite related to long-term stress reduction for caregivers
Stress reduction related to improved health outcomes
Mixed results on delaying out-of-home placement
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Expert Panel Findings and Recommendations
Address foundational methodological concerns.
Research individual, family, and societal outcomes.
Conduct appropriate cost-benefit and cost-effectiveness research.
Research systems change that improves respite access.
Research improving respite provider competence.
Conduct translational research that informs respite policy and practice.
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Next Steps
Report dissemination A Research Agenda for Respite Care: Deliberations of an
Expert Panel of Researchers, Advocates and Funders, 2015 http://archrespite.org/images/docs/2015_Reports/ARCH_Expert_Panel_Report_FINAL_2015.pdf
Form a Respite Research Funding Collaborative
Fund new research that addresses one or more of the Panel’s recommendations
Convene a summit to discuss findings
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For More Information
Jill KaganARCH Program Director
ARCH National Respite Network and Resource Center
http://www.archrespite.org/
Lifespan RespiteTechnical Assistance Center
This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration for Community Living. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. These contents, however, do not necessarily represent the policy of the U.S. Department of Health and Human Services and endorsement by the Federal government should not be assumed..
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Developing and Testing a Web-BasedCaregiver Skill Building Intervention forDementia Family Caregivers
Carol J. Farran, Professor and Nurses Alumni Association Endowed Research Chair in Health and AgingRush University College of NursingChicago, Illinois
ACL/AOA Webinar 3-November 2015
Disclosure Statement: I have affiliation with this research, a collaborating small business anda caregiver skill-building intervention that I will be speaking about.
Presentation Aims
1. Describe evidence-based Caregiver Skill Building Group Intervention (CSBI-G).
2. Discuss process of adapting CSBI-G to CSBI-M (mobile intervention).
3. Present CSBI-M pilot study challenges and preliminary outcomes.
Aim #1: CSBI-G Background InformationDesign:RCT of Caregiver Skill Building Intervention (CSB) vs.
Information and Support Only (ISO) (N=295)
Multi-Method Treatment protocol:12-month intervention = Small Group + Individual Telephone + Group Boosters + PRN Telephone contact
Skill Building Focus on:-Assessing behavioral symptoms
-Identifying potential causes of behaviors
-Recognizing care recipient’s abilities
-Using creative approaches to intervene
(Farran, et al., 2004, JMHA, 10, 4, p. 337-350; Farran, et al., 2007, WJNR, 28, 8, p. 944-960).
CSBI-G Evidence-based Quantitative Outcomes
Decreased depressive symptoms (p=0.05)
Decreased emotional distress with agitation (p=0.01)
(Farran, et al., 2004, JMHA, 10, 4, p. 337-350; Farran, et al., 2007, WJNR, 28, 8, p. 944-960)
Aim #2: Adapting Group to Mobile Intervention
1. What assumptions did we have to make?-It will be different
2. What were CSBI-G core content and components?
-Focused on Skill, not just didactic information
3. Was there ISO-G content to address?-Yes, Caregiving 101; Integrated into CSBI-M
4. What key issues changed over 10 years-Technology
5. Who were intended users of the technology?
-Early-stage, multicultural, spouse/non-spouse caregivers
Process of Adapting CSBI-G to CSBI-M:Assumptions we made
1. What will we miss?
• Reducing contact time from: 17.5 to 6hrs• Group leader managed process• Group member contacts and process
2. What might caregivers gain?
• More time/greater flexibility • Interactive learning process for CGs• Increased access to web-based CG resources
CSBI-M: Content and Delivery Method
Module Content:
1. Understanding Alzheimer’s Disease and Related Dementias
2. Person-Centered Care
3. Behavioral Symptoms of Dementia
4. Personal Activities of Daily Living
5. Caring for the Caregiver
6. Finding and Using Services
Delivery Method:
Six Weekly web-based Modules
Core Module Components
Curriculum Map which covered:
1. Objectives for each module.
2. Expected behavior change.
3. Anticipated skill development.
4. Application-oriented Self- Assessment Questions .
5. Case examples by caregiver gender, role, multicultural group; and care-recipient activity level and outcome.
6. Existing or study-developed attachments.
How to Adapt Delivery Process?
1. Get all the content in? You can’t. Adapt approaches: Use case studies; Used attachments; provide CG access to web-based resources. 2. Deal with group leader absence? Interactive Self-Assessments; Refer to Alzheimer’s Association-written materials, E- Helpline, 24/7 Helpline; NIA, NIH, FCA, AARP, etc.
Aim #3 Pilot Study Challenges, Outcomes and Next Steps
1. Technology is rapidly changing◦ Our original technology became obsolete during
intervention development
2. Business, Health Care and Research function in different environments
◦ Rapidly changing environments: original small business bought out twice in 12 months
◦ Needed to find a new small business willing to help us adopt a new technology and work under tight time constraints
Project Challenges (continued)
3. Tight timeline
4. Technology doesn’t always work: Connectivity
5. Connectivity depends on caregiver technological skill, available hardware and software, and individual savvy.
6. Anticipating what the project will need long-term (Technical aspects ; Marketing/Recruitment; long-term maintenance).
CSBI-M Research Phase: CG Assessment
• Trimmed assessment to key variables and time points
(B, 6- and 12-weeks)
Sociodemographic variables
• Focused Outcomes: Caregiving Skill, Mental Health
(i.e. Burden, Depressive Symptoms, Positive Affect)
• Program Evaluation- Content- Learning approach- Audio visual quality- Relevance- Most/Least helpful- Suggestions for improvement
Strengths of CSBI-M
Incorporates valuable features into single product◦ Teaches fundamental skills, rather than just facts
◦ Interactive: opportunity to apply content, receive feedback, access to other websites
◦ Covers Essential Content: covers essential topics
◦ Convenient: available 24 hours/day, 7 days/week, from any location with internet access, as frequently as needed and without professional facilitator
◦ Flexible: can be used by individuals and adapted for groups (i.e., caregivers and professionals)
CSBI-M Quantitative Outcomes
↑ Caregiver Skill Building: 6wk=p 0.01; 12wk= p 0.05
Burden: NS↓ Depressive symptoms: 6wk=0.01↑ Positive Affect: 6wk= 0.05
Qualitative: Most Helpful
Learning about self: 28%Learning about resources: 26%Specific approaches to care: 24%Learning about care recipients
and their needs: 22%
Qualitative: Recommendations for Future
Additional content/approaches: 43%
Affirmation of Program: 40%Computer/Technical issues: 14%Personal contact: 3%
Next Steps: HRSA and Future Funding
Will enable us to:◦ Further test CSBI-M in a larger
context with family caregivers and professionals
◦Expand CSBI (translation into Spanish)
For Further Information
Contact: Carol J. Farran, RN, DNSc, FAAN Professor, Rush College of Nursing [email protected] 312-942-6154
Thank You!
Acknowledgements
Funding◦ NINR R01 NR009543 (CJF, DAL) ◦ NIA R42 AG032159 (JJM, CJF)
Research Teams ◦ Caregiver Skill Building Intervention-Group (CSBI-G)◦ Caregiver Skill Building Intervention-Mobile (CSBI-
M)
Collaborating Individuals/Groups◦ Judy J. McCann, Co-I; 2 Small Businesses◦ Rush College of Nursing◦ Rush Alzheimer’s Disease Center; Other ADC’s ◦ Community Groups
References
1. Alzheimer’s Association, 2015 Alzheimer’s Disease Facts & Figures, Alzheimer’s & Dementia 2015, 11(3)332+.
2. AARP Public Policy Institute and National Alliance for Caregving (NAC), Caregiving in the US, 2015.
3. Farran CJ, Gilley DW, McCann JJ, Bienias JL, Lindeman DA, Evans DA. Efficacy of behavioral interventions for dementia caregivers. West J Nurs Res. 2007: 29:944-960.
4. Farran CJ, Gilley DW, McCann JJ, Bienias JL, Lindeman DA, Evans DA. Psychosocial interventions to reduce depressive symptoms of dementia caregivers: A randomized clinical trial comparing two approaches. Journal of Mental Health and Aging. 2004:10:337-350.
References (continued)
5. Farran CJ, Loukissa D, Perraud S, Paun O. Alzheimer’s disease caregiving information and skills: Part I: Care recipient issues and concerns, Res in Nsg and Hlth. 2003: 26:366-375.
6. Farran CJ, Loukissa D, Perraud S, Paun O. Alzheimer’s disease caregiving information and skills: Part II: Caregiver issues and concerns, Res in Nsg and Hlth. 2004: 27:40-51.
7. McCann JJ, Hills EB, Zauszniewski JA, Smith CE, Farran CJ, Wilke DJ. Creative partnerships for funding nursing research. West J Nurs Res. 20ll: 33(1)79-105.
8. Perraud S, Farran CJ, Loukissa D, Paun O. Alzheimer’s disease caregiving information and skills: Part III: Group process issues and concerns, Res in Nsg and Hlth, 2004: 27:110-120.
• Slides, audio and transcript will be posted on-line, generally within 2 weeks after the live webinar at http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/index.aspx#resources
• Free CEs for Webinar 1 will be available for 2 years after the live webinar (through November, 2017).
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