Test Your Caregiver IQ

1. https://learn.extension.org/events/2490 This material is based upon work supported by the National Institute of Food and Agriculture, U.S. Department of Agriculture, and the Office of Family Readiness Policy, U.S. Department of Defense under Award Numbers 2014-48770-22587 and 2015-48770-24368. Test Your Caregiver IQ
2. Connecting military family service providers to research and to each other through innovative online programming www.extension.org/militaryfamilies MFLN Intro 6 Sign up for webinar email notifications at www.extension.org/62831
3. Connecting military family service providers to research and to each other through innovative online programming MFLN Intro Join the Conversation Online!
4. Join the Conversation Online! MFLN Military Caregiving MFLN Military Caregiving @MFLNMC MFLN Group https://www.linkedin.com/groups/8409844 MC SMS icons Military Families Learning Network
5. Asking Questions: • When using APAN, type all questions and comments into the chat box on the left-hand side of the screen. • If you are unable to use the APAN system, you can Tweet us your questions at @MFLNMC • Questions can be submitted at any time during the presentation. • We will try to answer questions in real-time or at the end of the presentation, in the order they are received. 9
6. + Meet Mary! • Owner of MBP Consulting, LLC • Professor Emeritus University of Wisconsin-Extension • Over 25 years as an educator of family caregivers • Personal and professional caregiving experiences 10
7. + What’s your Military Caregiver IQ? Presented by: Mary Brintnall-Peterson, Ph.D. 09 March 2016
8. + Webinar Objectives • Develop a boarder understanding of caregivers. • Understand why caregiver research is confusing. • Recognize impacts on caregivers. • Name three types of caregiver stress. • Identify caregiver support systems. 12
9. + Determining Your Caregiver IQ • Answer each question • Keep track of your correct answers • At the end of the program—identify your IQ 13
10. + Caregiving Numbers • 43.5 million family caregivers, 34.2 million caring for someone over 50 • 3.7 million caring for a child • 33.3 million caring for adult • 6.5 million for both child & adult • 21.9 million caregiver households (9% of adult population) • 16.9 million are civilian caregivers • 4.4 million are pre-9/11 military caregivers • 1.1 million are post 9/11 military caregivers Source: National Alliance for Caregiving and AARP Public Policy Institute , Caregiving in the U.S. 2015.14
11. + Polling Question #1: Research on Family Caregivers… A. Is consistent in findings. B. Provides specific recommendations on how to support family caregivers. C. Is perplexing as caregiver definitions are different, often disease or condition specific, and can’t be compared. 15
12. + Answer: C 16
13. + Caregiver Research • Uses different caregiver definitions • Often caregiver type specific • Funding requirements • Difficult to compare • Thus… look for commonalities and uniqueness 17
14. + Practice Implications • Check research sources • Do they have a bias? • Is it caregiver type specific? • How many caregivers in study? • What is reputation of research source? • Look for similarities and differences
15. + Polling Question #2: What Factors Influence Caregiving? A. Condition/illness of care receiver B. Where caregiver lives (with, close by or long distance) C. Urban versus rural settings D. Culture E. Relationship between caregiver and care receiver F. Employment G. All of above 19
16. + Answer: G 20
17. + Factors Which Impact Caregiving A. Condition/illness of care receiver B. Where caregiver lives (with, close by or long distance) C. Urban versus rural settings D. Culture E. Relationship between caregiver and care receiver F. Employment G. Other factors—age, sex, hours of care per week, length of being caregiver, etc. 21
18. + Caregiving Impacts on Caregivers Source: Ramchand, R., Tanielian, T., Fischer, M.P., Vaughan, C. A. , Tail, T.E., Epley, C, Voorhies, P, Robbins, M.W., Robinson, E, Ghosh-Dastidar, B. , Hidden Heroes: American Military Caregivers, RAND Corporation, 2014. 22
19. + Practice Implications • Ask questions. • Listen carefully. • Determine if caregiver is unique or similar to other caregivers. • Find out what they as a caregiver needs. • Discuss options of how caregiver needs can be met.
20. + Sources of Caregiver Stress A. Caregiver health B. Lack of money C. Lack of support or help D. Complex medical systems E. Relationship changes F. Employment issues 24
21. + Polling Question #3: Are There Different Types of Caregiver Stress? A. Yes B. No 25
22. + Answer: A 26
23. + Three Types of Caregiver Stress 1. Relationship Stress 2. Workload Stress 3. Emotional Stress Montgomery, R.J. V. & Kwak. J., 2008, Montgomery, R.J. V. & Kosloski, K., 2009; Savundranayagam, M.Y., & Montgomery, R.J.V. 2010 27
24. + Relationship Stress • Definition: Stress between caregiver and care receiver, due to caregiving. Montgomery, R.J. V. & Kwak. J., 2008, Montgomery, R.J. V. & Kosloski, K., 2009; Savundranayagam, M.Y., & Montgomery, R.J.V. 2010 28
25. + Relationship Stress • Examples: • “He just doesn’t appreciate everything I do for him.” • “He expects so much of me and sometimes I think he could do the task himself.” • “She gets angry when I handle the finances as she used to do that and can’t now.” • “We just don’t talk or share with each other any more.” . 29
26. + Workload Stress • Definition: When the demands of caregiving interferes with the caregiver’s other relationships Montgomery, R.J. V. & Kwak. J., 2008, Montgomery, R.J. V. & Kosloski, K., 2009; Savundranayagam, M.Y., & Montgomery, R.J.V. 2010 30
27. + Workload Stress • Examples: • “I don’t have enough time for myself, my friends and my family because I’m always taking care of Tom.” • “Caregiving is making it difficult for me to work.” • “I feel so guilty as I never seem to have time to be with my children and husband because mom requires all my attention.” 31
28. + Emotional Stress • Definition: Occurs when caregiving makes the caregiver anxious, worried, fretting or upset. Montgomery, R.J. V. & Kwak. J., 2008, Montgomery, R.J. V. & Kosloski, K., 2009; Savundranayagam, M.Y., & Montgomery, R.J.V. 2010 32
29. + Emotional Stress • Examples: • “I’m just so uncertain about our future and how we will survive financially.” • “I worry about Tom being home alone.” • “I find myself thinking I there has to be something else I can do. “ 33
30. + Practice Implications • Supports depend on the type of stress. • Workload stress—counseling or in-home help? • Relationship stress—respite or support group? • Help caregiver understand how support will address their stress. • Realize what works for one caregiver may or may not work for another caregiver. • Provide options for caregiver so they can select.
31. + Depression Source: Ramchand, R., Tanielian, T., Fischer, M.P., Vaughan, C. A. , Tail, T.E., Epley, C, Voorhies, P, Robbins, M.W., Robinson, E, Ghosh-Dastidar, B. , Hidden Heroes: American Military Caregivers, RAND Corporation, 2014.35
32. + Polling Question #4: Can Caregivers Experience Joy? A. Yes B. No 36
33. + Answer: A 37
34. + Caregiver Joys • Caregivers experience: • Being reconnected • Satisfaction • Joy • Meaning & purpose • Grow closer to care receiver • Enjoy spending time care receiver • Give back to care receiver Source: Bearon, L. B. (2013). The Burdens and Blessings of Family Caregiving. Raleigh: North Carolina Cooperative Extension Service. 38
35. + Practice Implications • Share examples of how caregiving is a “joy” to some individuals. • Look for “joys” when talking with caregivers. • Help caregivers recognize their own “joys.”
36. + Polling Question #5: Which Support Services do Caregivers Use Most Often? A. Respite services F. Religious support B. Advocate supports G. Education C. Helping hand H. Financial supports D. Support group E. Wellness activities 40
37. + Answer: F 41
38. + Where Caregivers Get Support Source: Ramchand, R., Tanielian, T., Fischer, M.P., Vaughan, C. A. , Tail, T.E., Epley, C, Voorhies, P, Robbins, M.W., Robinson, E, Ghosh-Dastidar, B. , Hidden Heroes: American Military Caregivers, RAND Corporation, 2014. 42
39. + Practice Implications • Provide options for caregiver. • Make sure stress type & support options match up. • Discuss how some options may not work for them & that’s ok. • Encourage the use of multiple supports. • Encourage them to do what they “want” to do versus “what” they have to do. • Provide details about support (phone, contact person, hours, flyers, etc.). • Create a plan together: • What they will do? • When they will do it? • What is goal of support? • When can you connect to see how the support is going?
40. + Summary • Caregiver research can be confusing. • Caregiving impacts caregivers differently yet there are similarities between them. • There are three types of caregiver stress. • Caregiving can provide joy, satisfaction, & meaning. • Professionals should discuss with caregivers what they need. • Caregivers need to be involved in selecting supports and resources to assist them. 44
41. + Additional Information • Caregiver Learning Lessons- http://articles.extension.org/pages/70342 • National Alliance for Caregiving-http://www.caregiving.org/ • Caregiving in the U.S.-2015 report- http://www.caregiving.org/caregiving2015/ • Hidden Heroes: America’s Military Caregivers- http://www.rand.org/pubs/research_reports/RR499.html • Special Needs, Military OneSource- http://www.militaryonesource.mil/family-and- relationships/special-needs 45
42. + Polling Questions: So What’s Your Caregiver IQ? • 5 correct—Genius • 4--Knowledgeable • 3—Novice • 2 or less – Beginner Check out MFLN Caregiver’s archived webinars/online courses at: https://extensiononline.tamu.edu/courses/military_care giving.php 46
43. + References • Bearon, L. B. (2013). The Burdens and Blessings of Family Caregiving. Raleigh: North Carolina Cooperative Extension Service. http://content.ces.ncsu.edu/the-burdens-and- blessings-of-family-caregiving • National Alliance for Caregiving and AARP Public Policy Institute , Caregiving in the U.S. 2015. • Montgomery, R.J. V. & Kwak. J. (2008). Tailored Caregiver Assessment and Referral (TCARE) process: An evidence-based model for effectively supporting caregivers. American Journal of Nursing, 108. 54-57. • Montgomery, R.J. V. & Kosloski, K. (2009). Caregiving as a Process of Changing Identity: Implications for Caregiver Support. Generations, 33, 47-52. • Savundranayagam, M.Y., & Montgomery, R.J.V. (2010). Impact of role discrepancies on caregiver burden among spouses. Research on Aging, 32, 175-199. 47
44. What is one significant thing you learned today? 48
45. Evaluation and Certificate of Completion MFLN Military Caregiving is offering a certificate of completion for today’s webinar. To receive a certificate of completion, please complete the evaluation and post-test at: https://vte.co1.qualtrics.com/SE/?SID=SV_bwuEV ORexTEeMlv 49
46. Military Caregiving Upcoming Event ADHD, Anxiety, and Autism: Practical Approaches to Child Psychiatry • Date: April 27, 2016 • Time: 11:00 AM Eastern • Location: https://learn.extension.org/events/2492 For more information on MFLN Military Caregiving go to: https://blogs.extension.org/militaryfamilies/military-caregiving/ 50
47. www.extension.org/62581 51This material is based upon work supported by the National Institute of Food and Agriculture, U.S. Department of Agriculture, and the Office of Family Readiness Policy, U.S. Department of Defense under Award Numbers 2014-48770-22587 and 2015-48770-24368.

Editor's Notes

Public policy is written on the expectation that family members especially will care for each other.
These are estimates in the research done by AARP and the National Alliance for Caregiving. This report does not highlight the number of caregivers for military individuals.

Definition of caregivers is providing care within the last 12 months to and adult or child.

Numbers are different than AARP/NAC study for the following reasons:
-does not include caregivers of children under 18
-Stricter criteria of who is a caregiver
-count number of caregivers in a household-Rand only looked at households
-AARP/NAC study includes caregivers who were a caregiver in last 12 months; RAND study is only of current caregivers

Please note that there wasn’t one source for me to use on obtaining caregiver numbers. What is important to know is that family members provide care and that there are a lot of caregivers. Many individuals will have the opportunity to be a caregiver more than once in their life.

Caring for a parent or sibling
Caring for a spouse or significant other who is ill or disabled
Caring for an individual with a disability
Caring for someone who had surgery or short term illness

All of these people are a caregiver because at some time in their life the individual had a relationship with the person they are caring for…
This is the slide where the results of the voting is shown—

Correct answer is C
Caregiving can range from helping to mow the lawn to 24/7 care. So when reading research or reports look at their definition

Caregiver types—military, had military experience, older, disease or condition specific

Look at who has funded the research as it may have a slant to their findings. I’m not saying the research is flawed its just that you need to be aware of what the organization’s biases might be

One would think you could look at the different caregiver research to gain a better pictures of today’s caregiver. An example of this is the area of stress. It is common knowledge and agreed upon that caregivers experience stress. But how does the research define stress? What scale or tool did they use to measure stress? What stress self reported?

I suggest you look for commonalities between studies and then at the unique data that the research has discovered or reported on. If working with a specific group of caregivers it is critical to see if there is research specific to that audience. An example is the caregiving of someone with dementia can be different than caring for someone who suffers with Parkinson, or a 20 year old who is an amputee.

Be cautious to look at references of articles, reports, and even webinars to see the references used in the educational resource. Be cautious if a commercial enterprise is involved as it may be promoting a product or service.
Another easy question as its probably pretty obvious that all the factors listed will impact caregiving by either creating stress or joys for the caregiver. Let’s discuss each factor a little.

Condition/illness of care receiver-this seem obvious as some conditions and illness may be more difficult than other.
Caregivers who are caring for someone with a cognitive impairment experience more stress as it is often a 24/7 job compared to caring for other illnesses. Caregivers need education on the conditions/illnesses they are caring for.
6 in 10 caregiver’s today are doing medical/nursing tasks that were formally done by nurses. They are also sent home with medical equipment that use to be used only in hospitals are another medical setting.
B. Where caregiver lives (with, close by or long distance)-
Spouses typically live with the care receiver
Children or other relatives live in their own home
Long distance caring typically defined as being more than an hour away can add logistical and emotional stress to the caregiver.
C. Urban versus rural settings
Rural area caregivers face unique challenges. There are typically less resources such as medical doctors, medical facilities, support services such as respite, educational classes, transportation, weather problems in winter, geographic distance and isolation.
Culture
Families bring to caregiving who they are such as their family ethnic background, traditions, and rituals. In some cultures there are expectations of who will provide care such as daughters & daughter-in-law's are expected to provide care.
Relationship between caregiver and care receiver
This seems obvious—if the caregiver didn’t have a good relationship with the care receiver its not going to get better. The relationship history between the two individuals influences carries into being a caregiver.
Page 26 of book

Even though this information is for wounded warriors other caregivers would probably report many of the same impacts.

Confining means not being able to do things they can do with their free time such as seeing friends or visiting family
Inconfenient
Family adjustments
Change from CR fromer self
Feeling overwhelmed
Behavior upsetting
Changes in personal plans
Emotional adjustments
Only 16% of caregivers were asked what they needed as a caregiver. Professionals are more likely to ask a caregiver what they need if they provide over 21 hours of care a week or if they are caring for someone with complex care situations. A majority of the time professionals are focused on the care receiver.

84% of caregivers stated they could use more information on caregiving topics.
*42% want information on keeping the CR safe and managing stress.
*Caregivers who provide over 21 hours of care a week asked for information on managing challenging behaviors, dealing with incontinence and toileting problems.

One caregiving topic that caregivers are needing assistance is with helping them do medical/nursing tasks—catheter, colostomy care, injections, tube feedings, wound care, and other complex medical conditions.
*42% do tasks without any training and 14% received training—leaving us with 48% that get a little training or figure it out on their own.
*Numbers are even higher for higher hour caregivers.
Source(s):
Montgomery, R.J. V. & Kwak. J. (2008). Tailored Caregiver Assessment and Referral (TCARE) process: An evidence-based model for effectively supporting caregivers. American Journal of Nursing, 108. 54-57.

Montgomery, R.J. V. & Kosloski, K. (2009). Caregiving as a Process of Changing Identity: Implications for Caregiver Support. Generations, 33, 47-52.

Savundranayagam, M.Y., & Montgomery, R.J.V. (2010). Impact of role discrepancies on caregiver burden among spouses. Research on Aging, 32, 175-199.
Image from public domain or Rachel

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Image from Rachel

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Sometimes emotional health issues can lead to depression. Nearly forty percent of post 9/11 caregivers met the criteria for probably depression. This high rate of depression could be a result of the caregiver constantly trying to avoid triggers of anxiety or antisocial behaviors which find the caregiver needing to intervene and help the soldier or others cope with the situation. Their depression rate is two times higher than pre 9/11 caregivers and civilian caregivers. This group is four times higher than non-caregivers so when working with military caregivers it is imperative to discuss depression and encourage them to consult with their physician if they are experiencing any of the signs of being depressed.

Caregivers with depression are at a higher risk for developing additional conditions such as type II diabetes, heart disease and Parkinson’s. Besides affecting the caregiver’s health depression has been found to have a “contagious” effect on others who the caregiver interacts with such as his/her children and their service member. (Rand Study—pg 129)

Source(s)
Tanielian, T.; Ramchand, R.; Fisher, M.P.; Sims, C.S.; Harris, R.; & Harrell M.C., (2013). Military Caregivers: Cornerstones of support for our nation’s wounded, ill, and injured Veterans. Rand Corporation. Library of Congress. Retrieved April, 10, 2013 from: http://www.rand.org/pubs/research_reports/RR244.html

Rand
Caregivers experience:
Being reconnected-Sometimes caregiving provides an opportunity for the caregiver and care receiver to reconnect and share past memories of time they have spent together.

Satisfaction-gain satisfaction from knowing they are giving back or helping
Joy-some individuals like to provide care and enjoy helping others in need

Meaning & purpose-caregiving provides meaning and purpose to some individuals. In fact often caregivers become a caregiver to others after they have lost the person they were caring for

Grow closer to care receiver-often happens, especially for adult children caring for parents-they had been apart for many years and caregiving provides time for them to get to know each other again

Enjoy spending time care receiver-this is especially true for spouses as they enjoy being with their spouse and spending time together.

Give back to care receiver-some adult children feel they are giving back to their parents for the sacrifices they made raising them.
This slide makes it obvious to see that post 9/11 military caregivers are much more likely to use support services and resources compared to pre 9/11 and civilian caregivers. You may recall post 9/11 caregivers are the group who have the least amount of support from family and friends. This is a key fact to keep in mind when working with military caregivers.

Let’s review each of the caregiver supports so you understand what each of them provide.
Respite are programs that provide care for the service members so the caregiver can have a short term break from caregiving.
Advocate-category is patient advocate or case manager. Someone who coordinates care or serves as a liaison for the service member and service providers.
Helping hand-Services that provide help the caregiver such as a loan, transportation, housing or personal care
Financial stipend-paying a caregiver for being a caregiver or loss of wages due to caregiving
Support Group-titled as structure social support and includes both on-line and f-n-person support groups
Religious support includes religious or spiritual based guidance or counseling
Wellness activities (structured wellness activities) includes organized fitness classes or stress relief lessons that focus on mental and physical well being
Education-(structured education or training)—in-person or online classes, modules, webinars, workbooks that is a formalized curriculum rather than a one time program that relates to being a caregiver.

Other highlights is civilian caregivers are more likely to use respite care

Rand study page 20 for definitions and page 109 for graph data
Rachel add others you think are important
At 10 minutes before the published end time, presenter or facilitator invite participants to answer this question in text. Wait at least 60 seconds for replies.
Thank participants for attending and for responding and ask a Follow up question verbally: “What will you DO with the information you learned?”
Discuss responses, then ask of all participants “What else do you have questions about regarding today’s topic?” Wait a minimum of 60 seconds.
Answer questions and provide additional resources as appropriate.

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