the value of respite for family caregivers
TRANSCRIPT
The Value of Respite for Family Caregivers
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Providing educational tools and caregiving tips for military professionals and family caregivers.
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Evaluation and CE Credit
The Military Caregiving Concentration team will offer 1.00 CE credit hour from the National Association of Social Workers (NASW).
*Must complete evaluation and pass post-test with 80% or higher to receive a certificate.
A link to the evaluation and post-test will be available at the end of today’s presentation.
The Value of Respite for Family Caregivers
Mary Brintnall-Peterson, Ph.D.Owner of MBP Consulting, LLCProfessor Emeritus, University of Wisconsin
Over 30 years as an educator of family caregiversPersonal and professional caregiving experience
Objectives of Today’s Webinar
Professionals will:▫Recognize ways respite can and cannot
benefit family caregivers.▫Think broadly/out of box as you identify &
discuss respite options.▫Share respite resources.▫Advocate for creation of various respite
programs.
What Won’t Be Covered
•Details of specific programs
•Eligibility requirements for respite options
Who do you work with?
1. Caregivers of wounded service members—under 40
2. Caregivers of wounded service members—over 40
3. Caregivers of special needs children
4. Caregivers of adult children
Caregiver Statements…
•“If only I could get a few moments of alone time, it would help me be more patient.”
•“I need to take care of myself personally, but it’s impossible to do when my child (husband) is around.”
•“I miss being with my friends.”•“I gave up most of my hobbies, but would
like time to do some of them again.”
Which options provide respite?
1. Having a friend take service member fishing
2. Use of a taxi3. Adult day care4. In-home chore services5. All of them6. None of them7. Uncertain
Helpful Tid Bits• 4 in 10 US adults care for an adult/child with
significant health issues. (Fox, S., et al, 2013)
• Respite is second most requested service. (The ARC.2011; National Family Caregivers Association, 2011)
• 90% of caregivers do not receive respite services. (NAC and AARP, 2009)
Helpful Tid Bits• Current respite services do not address military
caregivers
• 68% of veteran caregivers reported situation as highly stressful compared to 31% of caregivers. (NAC, 2010)
• Parents of children with special needs report poorer general health, more physical health problems, worse sleep and increased depression compared to parents of typically developing children. (McBean, A. et al, 2013)
Helpful Tid Bits cont.• Military caregivers provide care for 10 years or
longer, which is two times longer than other caregiving populations. (Ramchand, et al., 2014)
• Health of caregivers is impacted because they don’t exercise, eat healthy meals, take care of themselves or take time for themselves.
• Caregivers of veterans with PTSD are about half as likely as other caregivers to receive respite.
(NAC, 2010)
Respite is…
•A specific service ▫Out-of-home services▫In home services
•Time away from caregiving▫Allows them to do a little less▫Share tasks▫Achieve balance in their life
• It can be for: A few hours, overnight or extended time One time or a regular or irregular basis
Potential Benefits of Respite•Reduces stress.
• Improves health and well-being.
•Avoids or delays out of home placements.
•Minimizes precursors to abuse and neglect.
•Strengthens marriages and family stability.
Potential Benefits of Respite
•Saves employers money through caregivers improved job performance & reduced absenteeism. (Metlife Mature Market Institute, 2006)
•Save Medicaid & other government programs money through reduced hospitalization and delayed placement.
Who uses respite?
•1/3 never used
•1/3 use it for less than two months
•1/3 used for 9 months to 2 years (Montgomery, 2002)
Why Caregivers Use Respite
•Reduces workload.
•Substitute for caregiver.
•Helps them maintain their identity.
•Helps them manage their caregiver role. (Lund, D.A., et al, 2014)
Why Caregivers Use Respite
•Reduces stress.
• Improves satisfaction with care receiver.
•Results in using more respite & on a regular basis. (Lund, D.A., et al, 2014)
Barriers to Using Respite
•Negative comments from others▫Respite workers▫Family members▫Work colleagues
• Not available • Type available not appropriate • Can create additional work
Home-Based Respite
•Offered in home of care receiver :▫Care receiver does not have to adjust to
new environment•Caregiver more comfortable because care
receiver does not leave home▫Home is equipped already▫Cost is relatively economical▫Transportation barriers eliminated
Types of Home-Based Respite
•Professional Services (Formal)▫Personal Care Services
•Sitter Companion Services▫Paid▫Volunteer
Civic Organizations Hospice Programs
•Family and Friends (Informal)
Day-Centered Based Respite
• Transportation & equipment required
• Care receiver may not adjust or like new environment
• Offered in a variety of settings.
• Care receiver returns home at end of day
Out-of-Home Respite Care • Different Living Environments▫ Assisted living facilities▫ Nursing home facilities▫ Foster homes▫ Residential facilities▫ Home of another individual▫ Other types of care facilities
• Other Programs▫ Camps▫ Retreats▫ Hospital type programs
Other Services that Provide Respite• In-home assistance
▫ Chore services▫ Home delivery meals
• Technology▫ Automatic bill pay▫ Assistive devices
•Transportation Services▫Volunteer, family or friend▫Paid services
Why Caregivers Don’t Use Respite
•Don’t feel a need for it.
•Against Personal Beliefs/Rules.
•Aren’t aware of what is available.
•Services aren’t available.
Getting the Most Out of Respite
•Consider using sooner versus later
•Use sufficient and regular amounts
•Plan for how they will use their respite time
•Use other support services with respite
Getting Most Out of Respite cont.•Do what they “want” not what they “have”
to do▫Help them think about doing:
What they enjoy
What they did before being a caregiver
What gives them meaning such as spiritual/religious activities
Which activities would you encourage caregivers to do during respite breaks?
1. Have spa day2. Play cards with
friends3. Have lunch out with a
family member/friend4. Practice piano5. Read a book6. All of them7. None of them
What you can do…
•Think broadly about respite options.
•Share respite options.
•Encourage caregivers to try respite options.
•Help caregivers understand their own barriers to using respite.
What you can do…
•Support caregivers as they use respite.
•Advocate for respite options locally.
•Encourage starting of respite programs
Key Resource—National Respite Network & Resource Center(ARCH)
• National Respite Locator• Consumer information▫ Fact Sheets▫ A Consumer’s Guide for Family Caregivers
• State Respite Coalitions• Lifespan Programs• Public Policy Advocacy• Technical Assistance• Programs for Military Families and Veterans• Volunteers Respite Manual: Creating Valuable Options for Fa
mily Caregivers
Resources for All Caregivers
• Condition/illness organizations▫ National Parkinson Foundation▫ Autism Society
Respite Care and Autism▫ Amputee coalition
• Recreational Organizations▫ YMCA▫ DOD Military Outreach Initiative
Resources for Service Members
• Veterans Administration (v)• Adult Day Health Care (ADHC) Centers (v)• Tricare (m/v)▫ Is respite covered by Tricare?▫ ECHO Home Health Care-Benefit
• Military One Source (m)• Wounded Warrior Support Program (m) • Caregiver Resource Directory (m/v)• Department of Defense (m)▫ Tricare offers respite care for caregivers
• National Military Family Association▫ EFMP and Special Needs
Resources for Older Adults
• AARP▫ Respite Care: A Break for the Caregiver ▫ Ten Ways to Deal with Caregiver Stress
• Veterans Administration▫ Long Term Care Guide
• National Adult Day Services Association • Condition/illness organizations▫ National Parkinson Foundation▫ Autism Society ▫ Amputee Coalition
Resources for Children
• Department of Health and Social Services▫ South Dakota
• Exceptional Family Member Program • Guide for Adults with Special Needs• Special Needs Consultants• Easter Seal▫ Caregiver and Respite Services
• United Cerebral Palsy of America▫ What is respite care?
Respite GuidesTaken from ABCs of Respite: A consumer Guide for Family Caregivers
• A Practical Guide to Respite for Your Family by Molly Dellinger-Wray and Monica Uhl with the Partnership for People with Disabilities (formerly the Virginia Institute for Developmental Disabilities), a university affiliated program at Virginia Commonwealth University
• The Respite Care Workbook from the Child Neurology Foundation
• Get Creative About Respite-A Parent’s Guide and Get Creative about Respite - What You Need To Know About Me from the Connecticut Lifespan Respite Coalition
• A Respite Guide for Caregivers and Providers, developed by the Texas Dept. on Aging in Partnership with the Area Agency On Aging Caregiver Task Force
Respite Guides cont.Taken from ABCs of Respite: A consumer Guide for Family Caregivers
• Finding Caregivers and Respite Providers compiled by the SC Respite Coalition and Family Connection
• Respite Care Guide: Finding What’s Best For You - The Alzheimer’s Association
• Relax. Take a Break: A Family Guide to Respite for Children in Michigan
• Family Guide to Respite. Prepared by Special Kid’s Network’s regional staff in collaboration with their community partners and the Pennsylvania Department of Health’s Children with Special Health Care Needs Consultants
• National Adult Day Services Association (NADSA) guidelines for adult day service programs
Additional Resources
• Supporting Military Caregivers: Options for Congress
• Understanding Respite Care for Military Family Caregivers
• Time for Living and Caring: Making Respite Services Work for You! ▫ Respite Care for Families with Special Needs
Your Advice to Suzie…
• Suzie is caring for her husband who has PTSD and is recovering from major surgery on his leg which they are trying to save. This is his fourth surgery and she is worn out. She feels in order to be a good wife she has to take him to all his appointments, keep a clean house, be his nurse, and the list goes on and on. They are on a military base and members from his unit have asked how to help but they refuse. She comes into your office asking questions about finances but you recognize she needs help. You want to discuss respite as an option that might be helpful to her.
•How would you begin the conversation about respite?
•What forms of respite would you suggest?
Your Advice to Suzie…
Key Takeaways
•Recognize respite benefits.
•Recognize how respite can create stress.
•Think broadly and out of the box about “respite.”
•Explore numerous types of respite with caregivers
Key Takeaways
•Highlight the importance of doing what they want versus what has to be done.
•Advocate that respite programs be expanded for service members and adult children.
•Share resources.
Questions?
References• Fox, Susannah; Duggan, Maeve; Purcell, Kristen. (2013). Family Caregivers are Wired for Health.
Washington, DC: Pew Research Center. • Lund, D.A.; Wright, S.D.; Caserta, M.S.; Utz, R.L.; Lindfelt, C.; Montoro-Rodriguez, J.; Shon, H. (2014).
Time for Living and Caring: Making Respite Services Work for You! University of Utah and California State University-San Bernardino.
• McBean, Amanda L. and Schlosnagle, Leo. (2013). Relations Between Sleep Disturbance, General• Health, and Memory Among Parents of Children with Special Health Care Needs. Poster Presentation at
the AUCD Annual Meeting, November 2013.• MetLife Mature Market Institute. (2006). The MetLife Caregiving Cost Study: Productivity Losses to U.S.
Business. www.MatureMarketInstitute.com. • Montgomery, R. (editor). (2002). New Look at Respite. Hayworth Press.• National Alliance for Caregiving (NAC) & AARP. (2009). Caregiving in the U.S. Bethesda, MD: Authors.• http://www.caregiving.org/research/general• National Alliance for Caregiving (NAC). (2010). Caregivers Of Veterans - Serving On The Homefront,• Bethesda, MD: Author.• National Family Caregivers Association. (2011). Allsup Family Caregiver Survey. Kensington, MD.• Ramchand, R, Tanielian, T, Fisher, MP, Vaughan, CA, Trail, TE, Epley, C; Voorhies, P, Robbins, M,• Robinson, R, Ghosh-Dastidar, B (2014). Hidden Heroes: America's Military Caregivers. Santa Monica,
CA: The Rand Corporation.• The Arc. (2011). Still in the Shadows with Their Future Uncertain: A Report on Family and Individual
Needs for Disability Supports (FINDS 2011). Wash, DC: Author.
Evaluation & CE Credit Process
The Military Caregiving Concentration team will offer 1.00 CE credit hour from NASW.
To receive CE credit please complete the evaluation and post-test found at:https://vte.co1.qualtrics.com/SE/?SID=SV_6neI59WeJVUJtQh
*Must completion evaluation and pass post-test with 80% or higher to receive certificate.
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