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1
Screening for Stress and Burden in Caregivers of Seniors
Developed for Covenant Health
Network of Excellence in Seniors’ Health and Wellness by
Jasneet Parmar MBBS and Lori-Ann R. Sacrey, PhD
© 2017
2
Table of Contents
Background 4 Toolkit Development 4
Screening Assessments 4 Follow-Up Assessment 4
Caregiver Burden Inventory 5 Description 5 Assessment 6 Caregiver Reaction Assessment 7 Description 7 Assessment 8 Caregiver Risk Screen 9 Description 9 Assessment 10 Caregiver Self-Assessment Questionnaire 12 Description 12 Assessment 13 Caregiver’s Burden Scale in End-of-Life Care 14 Description 14 Assessment 15 Carer Support Needs Assessment Tool 16 Description 16 Assessment 17 Cost of Care Index 18 Description 18 Assessment 19 Modified Caregiver Stain Index 20 Description 20 Assessment 21 Screen for Caregiver Burden 23 Description 23 Assessment 24 Social Support Questionnaire 27 Description 27 Assessment 28 Zarit Burden Interview 34 Description 34 Assessment 35
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Zarit Burden Interview – Shortened Version 36 Description 36 Assessment 37 Zarit Burden Interview – Screener Version 38 Description 38 Assessment 39 The Caregivers’ Aspirations, Realities, and Expectations (CARE) Tool 40
Description 40 Assessment 41
Appendix 60
References 61
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Screening for Stress and Burden in Caregivers of Seniors
Canada’s population is aging - individuals aged 65 and over are anticipated to account for over 25% of the population by 2068 (Bohnert et al., 2015). Family and friends are often relied upon for support; they provide transportation (e.g. running errands, attending medical appointments), perform tasks in the care partner’s home (e.g., preparing meals, cleaning, laundry), assist with house maintenance, and offer emotional support, (e.g., spending time and talking with care partner; Sinha, 2012). The Health Council of Canada’s, “Seniors in Need, Caregivers in Distress” report (Kitts, 2012) notes the need to support informal caregivers and recognize their indispensable contribution in the sustainability of the health care system. Caregivers are at an increased risk of physical, emotional, and financial (Butler-Jones, 2010; Kitts, 2012; Sinah, 2012; Hollander et al., 2009; Canadian Institutes of Health, 2009) that can lead to deterioration of their health, social isolation, loss of income, and family conflict (Kitts, 2012; Stajduhar et al., 2010; Dumont et al., 2009). This strain is anticipated to intensify as a result of the aging population (Eales et al., 2015; Smetanin et al., 2010; Dudgeon, 2010).
Toolkit Development
A systematic review of the literature was completed to locate assessments used to measure informal caregiver stress and/or burden. The results of the search were compiled into a table and evaluated based on tool accessibility, cost, domains measured, utility across caregiving (end of life, homecare), and psychometric properties (reliability and validity). Below is a list of the ten assessments chosen, based on these evaluation criteria, to assess caregiver stress and burden. The first nine are brief, self- (or clinician) assessment screens (presented in alphabetical order) and the tenth is a clinician led interview that can be used to determine needs and potential interventions for caregivers who are identified as being at increased risk of caregiver burnout.
Screening Assessments
1. Caregiver Burden Inventory 2. Caregiver Reaction Assessment 3. Caregiver Self-Assessment Questionnaire 4. Caregiver’s Burden Scale in End-of-Life Care 5. Cost of Care Index 6. Modified Caregiver Strain Index 7. Screen for Caregiver Burden 8. Social Support Questionnaire 9. Zarit Burden Interview
Follow-Up Assessment
The Caregivers’ Aspirations, Realities, and Expectations (CARE) Tool
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CAREGIVER BURDEN INVENTORY
Published 1989
Description Measure caregiver burden as it relates to time, developmental comparison with peers, physical health, social relationships, and emotional health. Can be used with informal caregivers of any sick or elderly person.
Domain assessed Social
Category Caregiving
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~10 to 15 minutes
# Items 24-item scale with 5 point Likert (not at all disruptive to very disruptive)
Languages Available English and Chinese
Availability Available online
(https://www.quia.com/files/quia/users/katekelly/Caregiver-Burden-Inventory)
Scoring Yes; total score are summed, with a score greater than 36 indicating a risk of burning out and scores near 24 indicating need to seek for respite care.
Training Required None
Reliability Acceptable to Good Internal Consistency for the five factors measures
Validity Construct validity
Reference Novak, M. & Guest, C. I. (1989). Application of a multidimensional Caregiver Burden Inventory. Gerontologist, 29, 798-803.
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Caregiver Burden Inventory (Novak and Guest, 1989)
The Case Manager will administer the inventory by reading the statement and marking the responses. Choose the number that best represents how often the statement describes your feelings. 0 - Never 1 - Rarely 2 - Sometimes 3 - Quite Frequently 4 - Nearly Always Client Name_______________________ Caregiver Name ______________________Date____________
Scores near or above 36 indicates a greater need for respite and other services.
It is important to seriously look at any item on the burden scale where the answer was scored as a 3 or 4 ('quite frequently' or 'nearly always'). If you have a 3 or 4 as an answer, give careful thought about why the caregiver scored so high on the question and see if you can find away to reduce the stress. Comments:__________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Time Dependency Items He/she needs my help to perform many daily tasks
He/she is dependent on me I have to watch him/her constantly I have to help him/her with many basic functions I don't have a minute's break from his/her chores
Emotional Health Items I feel embarrassed over his/her behavior I feel ashamed of him/her I resent him/her I feel uncomfortable when I have friends over I feel angry about my interactions with him/her
Physical Health Items I'm not getting enough sleep My health has suffered Care giving has made me physically sick I'm physically tired
Development Items I feel that I am missing out on life I wish I could escape from this situation My social life has suffered I feel emotionally drained due to caring for him/her I expected that things would be different at this point in my life
Social Relationships Items I don't get along with other family members as well as I used to My care giving efforts aren't appreciated by others in my family I've had problems with my marriage (or other significant relationship) I don't get along as well as I used to with others I feel resentful of other relatives who could but do not help
Total Score:
7
CAREGIVER REACTION ASSESSMENT
Published 1992
Description Assess caregiver burden, including caregiver esteem, lack of family support, impact on finances, impact on schedule, and impact on health. Can be used with informal caregivers of any sick or elderly person.
Domain assessed Psychological
Category Caregiving
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 15 to 20 minutes
# Items 24 items scored on 5 point Likert (strongly disagree to strongly agree)
Languages Available English, French, Dutch, and Chinese
Availability Available online
(http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0080-62342015000300424)
Scoring Yes; Total score ranges from 24 (low strain) to 120 (high strain); information predicting outcomes not provided
Training Required None
Reliability Good to Excellent Internal Consistency for Total Scale
Validity Content Validity; Construct Validity
Reference Given, C.W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing and Health, 15, 271–283.
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Caregiver Reaction Assessment (Brazilian Version) Answers format to the following items are as follows: Circle a number that corresponds to your answer:
Items I totally disagree
I disagreeI neither agree nor disagree
I agree I totally agree
1. I feel privileged to take care of __. 1 2 3 4 5 2. Others put the responsibility of caring for ___ on me. 1 2 3 4 5 3. *My financial resources are sufficient to pay for the cost of care. 1 2 3 4 5 4. My activities revolve around caring for ___. 1 2 3 4 5 5. Since I started taking care of ___, I seem to be tired all the time. 1 2 3 4 5 6. It is very difficult to get help from my family to take care of ___. 1 2 3 4 5 7. *I feel resentful for having to take care of ___. 1 2 3 4 5 8. I have to stop in the middle of my activities to care for ____. 1 2 3 4 5 9. I really want to take care of ___. 1 2 3 4 5 10. My health has worsened since I started taking care of ___. 1 2 3 4 5 11. I visit my family and friends less since I started taking care of ___. 1 2 3 4 5 12. Even by taking care of ___, I`d never be able to repay what he/she has done for me.
1 2 3 4 5
13. *My family cooperates in the care of ___ . 1 2 3 4 5 14. I have failed to fulfill my commitments since I started taking care of ___.
1 2 3 4 5
15. *I am physically strong enough to take care of ___. 1 2 3 4 5 16. Since I started taking care of ___, I feel abandoned by my family. 1 2 3 4 5 17. Caring for ___ makes me feel good. 1 2 3 4 5 18. It is difficult to find time to rest because of the constant interruptions.
1 2 3 4 5
19. * I am healthy enough to take care of _____. 1 2 3 4 5 20. Caring for___ is important to me. 1 2 3 4 5 21. Caring for ____ has caused financial difficulties in the family 1 2 3 4 5 22. My family (siblings, children) left me alone to take care of ___. 1 2 3 4 5 23. I like to take care of ____. 1 2 3 4 5 24. It is difficult to pay for the health expenses of ____. 1 2 3 4 5 * These questions will be inversely scored.
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CAREGIVER RISK SCREEN
Published 2001
Description Primarily used as a risk screen for use by home care agencies at intake to determine if a caregiver is “at risk” and if so, the urgency of required intervention. Also has been used in hospitals to assess pre and post risk following caregiver intervention.
Domain assessed Risk
Category Caregiving
Setting Clinical or Home care
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 10 minutes
# Items 12 items with a 4 point likert scale (totally disagree to totally agree)
Languages Available None listed
Availability Questions found in Huyck, M., H., Ayalon, L., & Yoder, J. (2007). Using mixed methods to evaluate the use of a carevier strain measure to assess outcomes of a caregiver support program for caregivers of older adults. International Journal of Geriatric Psychiatry, 22 160-165.
Scoring Sum items (maximum score of 36).
To interpret the score: Very high risk = 23-30; high risk = 17 – 22; moderate risk = 11-16; and below 11 = low risk. People who score a “3” on items 7, 10, and 11 should be considered high risk.
Training Required None
Reliability Good internal consistency
Validity Face and Criterion validity
Reference Guberman, N., Keefe, J., Fancey, P., Nahmiash, D., & Barylak, L. (2001). Caregiver risk screen.
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CAREGIVER RISK SCREEN
Section 1 – Ask CG for information as required to verify information you may already have.
Caregiver’s name
Telephone
Age Sex ____ F ______ M
1.1 Care Receiver’s Name: _____________________________
1.2 a) Relationship with CR: The Care Receiver is the _______________________ of the CG
b) How long CG has been caring for CR? _______________ weeks/months/years (circle one)
1.3 Does the CR live CG: ______ Yes _____ No
If no: does he/she live alone? ______ Yes ______ No
1.4 How often is CG caring for CR ______ all the time
_____ hours per day/ week/ month (circle one)
1.5 Language spoke at home: _____French ____ English ______Other
1.6 Is the CR cognitively impaired? _____ Yes _____No
1.7 What made CG ask for services now?
Additional Comments:
© Guberman, Keefe, Fancey, Nahmiash, & Barylak, 2001
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Section 2 – Complete with caller
Read to the caller
Taking care of someone ill (or with loss of autonomy) can have consequences on the caregiver and their family. This is perfectly normal. We would like you to indicate whether you are in agreement or disagreement with the following statements about your situation. There are no good or bad responses. We ask you to reply as honestly as you can to enable us to understand what kind of services or supports should be available to meet caregivers needs.
Totally disagree
Somewhat disagree
Somewhat agree
Totally agree
2.1 Caring for my ________ has negative effect on my physical health
2.2 I am not coping well with my present situation
2.3 I am more cut off from my regular social activities than before
2.4 Taking care of my _____ has put a strain on my family relationships
2.5 I will not be able to continue caring for ________ much longer
2.6 Taking care of my ______ has put a strain on my relationship with him/her
2.7 I feel that meeting the needs of _________ is not longer worth the effort
2.8 I don't have a minute’s break from caregiving
2.9 I do more than my share of caring compared to other family members or other members of my support system
2.10 I feel depressed
2.11 I feel I am losing control over my life because of my present situation
2.12 In the past few months, I have increased my intake of alcohol, drugs, or cigarettes
Total Score____________________
Intake Worker: ___________________ Date: _____________________
© Guberman, Keefe, Fancey, Nahmiash, & Barylak, 2001
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CAREGIVER SELF-ASSESSMENT QUESTIONNAIRE
Published 1992
Description Assesses stress levels of family caregivers, including stress, health, socialization, sleep, and family strain. Can be used with informal caregivers of any sick or elderly person.
Domain assessed Health
Category Caregiving
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 10 to 15 minutes
# Items 18 items (16 items scored yes/no and 2 items scored 1 to 10)
Languages Available English, Spanish, and Greek
Availability Available online
(http://www.healthinaging.org/resources/resource:caregiver-self-assessment/)
Scoring Yes; To determine the score: 1. Reverse score questions 5 and 15. For example, a “No” response should be counted as a “Yes” and a “Yes” response should be counted as a “No.” 2. Total the number of “yes” responses
To interpret the score: Experiencing a high degree of distress if any of these are true: (1) If answered “Yes” to either or both questions 4 and 11; (2) If total “Yes” scores = 10 or more; or (3) If score on questions 17 or 18 is 6 or higher;
Training Required None
Reliability Good Internal Consistency
Validity Convergent Validity
Reference American Medical Association. Caregiver Self-Assessment [on-line]. Available at http://www.healthinaging.org/resources/resource:caregiver-self-assessment/
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Comments: (Please feel free to comment or provide feedback.)
Caregivers are often so concerned with caring for the relative’s needs that they lose sight of their own well-being. Please take just a moment to answer the following questions. Once you have answered the questions, turn the page to do a self-evaluation. During the past week or so, I have …
1. Had trouble keeping my mind on what I was doing…. Yes No 13. Had back pain……………… Yes No
2. Felt that I couldn’t leave my relative alone………….......... Yes No
14. Felt ill (headaches, stomach problems or common cold)…... Yes No
3. Had difficulty making decisions………………….... Yes No 15. Been satisfied with the
support my family has given me………………………….
Yes No
4. Felt completely
overwhelmed……………..... Yes No
5. Felt useful and needed ……………............... Yes No
16. Found my relative’s living situation to be inconvenient or a barrier to care………... Yes No
6. Felt lonely………………...... Yes No 17. On a scale of 1 to 10, with 1
being “not stressful” to 10 being “extremely stressful,” please rate your current level of stress.
7. Been upset that my relative has changed so much from his/her former self…………. Yes No
8. Felt a loss of privacy and/or personal time………………. Yes No
18. On a scale of 1 to 10, with 1
being “very healthy” to 10 being “very ill,” please rate your current health compared to what it was this time last year.
9. Been edgey or irritable…….. Yes No
10. Had sleep disturbed because of caring for my relative….... Yes No
11. Had a crying spell(s)……….. Yes No
12. Felt strained between work and family responsibilities… Yes No
Caregiver Self-Assessment Questionnaire
How are YOU?
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CAREGIVER’S BURDEN SCALE IN END-OF-LIFE CARE
Published 2008
Description Assesses family caregivers' burden within the palliative care context, including care demands, physical and emotional exhaustion, physical health, and control over own life. Can be used with informal caregivers of elderly person in end-of-life care.
Domain assessed Burden
Category Caregiving
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 10 to 15 minutes
# Items 16-item scale with 4 point Likert (never to very often)
Languages Available English and French
Availability Available in original article
Scoring Total score ranges from 16 (low burden) to 64 (high burden)
Training Required None
Reliability Excellent Internal Consistency
Validity Convergent Validity with Zarit Burden Interview
Reference Dumont, S., Fillion, L., Gagnon, P., & Bernier, N. (2008). A new tool to assess family caregivers’ burden during end-of-life care. Journal of Palliative Care, 24, 151-161.
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CARER SUPPORT NEEDS ASSESSMENT TOOL (CSNAT)
Published 2013
Description Developed from focus groups with bereaved carers to determine key aspects of support for carers in palliative home care. Fourteen broad domains of support are compiled into two groups reflecting the dual role of caregivers as coworker and co-client.
Domain assessed Burden and Health
Category Caregiving
Setting Clinical or Community
Method of Delivery Self-report and clinician conversation
Time to Administer ~ 5 minutes to complete form plus added time for follow-up conversation
# Items 14-item scale with 4 point Likert (no to very much more) and one open ended question
Languages Available None listed (translations in Dutch, Italian, Danish, and German underway)
Availability Questions available in Ewing, G., Austin,L., Diffin, J., & Grande, G. (2015). Developing a person-centred approach to carer assessment and support. British Journal of Community Nursing, 20(12), 580-584.,
Scoring Clinician has conversation with caregiver regarding the items they highlighted on the CSNAT to determine the types of supports they need (there is no total score)
Training Required None
Reliability Sensitivity to change
Validity Face, content, and criterion validity
Reference Ewing, G., & Grande, G. (2013). Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine, 27(2), 244-256.
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The Carer Support Needs Assessment Tool (CSNAT)
Your support needs
We would like to know what help you need to enable you to care for your relative or friend, and what support you need for yourself. For each statement, please tick the box that best represents your support needs at the moment.
Do you need more support with .... No A
little more
Quite a bit more
Very much more
... understanding your relative’s illness?
... having time for yourself in the day?
... managing your relative’s symptoms, including giving medicines?
... your financial, legal or work issues?
... providing personal care for your relative (eg dressing, washing, toileting)?
... dealing with your feelings and worries?
... knowing who to contact if you are concerned about your relative (for a range of needs including at night)?
... looking after your own health (physical problems)?
... equipment to help care for your relative?
... your beliefs or spiritual concerns?
... talking with your relative about his or her illness?
... practical help in the home?
... knowing what to expect in the future when caring for your relative?
... getting a break from caring overnight?
... anything else (please write in)?
Please consider which of the above you most need support with at the moment. A practitioner will then be able to discuss these support needs with you.
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COST OF CARE INDEX
Published 1986
Description Measures different aspects of burden, including personal and social restrictions, emotional health, worthiness of caregiving, relationship with care recipient, and economic costs. Can be used with informal caregivers of any sick or elderly person.
Domain assessed Social
Category Caregiving
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 20 to 30 minutes
# Items 20-item scale with 4 point Likert (strongly agree to strongly disagree)
Languages Available None listed
Availability Available in original article
Scoring Total score is summed to obtain global score ranging from 20 (low-cost) to 100 (high cost). Sub-scores can be used to identify specific problems in each domain; Personal and Social Restrictions (items 1-4), Physical and Emotional Health (items 5-8), Value (items 9-12), Care Recipient as Provocateur (items 13-16), and Economic Costs (items 17-20)
Training Required None
Reliability Excellent Internal Consistency
Validity Construct validity
Reference Kosberg, J.I., & Cairl, R.E. (1986). The Cost of Care Index: A case management tool for screening informal caregivers. Gerontologist, 26, 273-278.
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The Cost of Care Index Items
Question Strongly Agree
Agree Disagree Strongly Disagree
I feel that my elderly relative is (will be) an overly demanding person to care for.
1 2 3 4
I feel that caring for my elderly relative puts (will put) a strain on family relationships.
1 2 3 4
I feel that caring for my elderly relative disrupts (will disrupt) my routine in my home.
1 2 3 4
I feel that caring for my elderly relative interferes (will inter- fere) with my friends or friends of my family coming to my home.
1 2 3 4
I feel that caring for my elderly relative has negatively affected (will negatively affect) my family's or my physical health.
1 2 3 4
I feel that caring for my elderly relative has negatively affected (will negatively affect) my appetite.
1 2 3 4
I feel that caring for my elderly relative has caused me (will cause me) to be physically fatigued.
1 2 3 4
I feel that caring for my elderly relative has caused me (will cause me) to become anxious.
1 2 3 4
I feel that meeting the psychological needs of my elderly relative for feeling wanted and important is not (will not be) worth the effort.
1 2 3 4
I feel that meeting the health needs of my elderly relative is not (will not be) worth the effort.
1 2 3 4
I feel that meeting the daily needs of my elderly relative is not (will not be) worth the effort.
1 2 3 4
I feel that meeting the social needs of my elderly relative for companionship is not (will not be) worth the effort.
1 2 3 4
I feel that my elderly relative is (will be) an overly demanding person to care for.
1 2 3 4
I feel that my elderly relative tries (will try) to manipulate me.
1 2 3 4
I feel that caring for my elderly relative has caused (will cause) my family and me much aggravation.
1 2 3 4
I feel that my elderly relative makes (will make) unnecessary requests of me for care.
1 2 3 4
I feel that caring for my elderly relative is causing me (will cause me) to dip into savings meant for other things.
1 2 3 4
I feel that my family and I must give up (will have to give up) necessities because of the expense to care for my elderly relative.
1 2 3 4
I feel that my family and I cannot (will not be able to) afford those little extras because of the expense to care for my elderly relative.
1 2 3 4
I feel that caring for my elderly relative is (will be) too expensive.
1 2 3 4
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MODIFIED CAREGIVER STRAIN INDEX
Published 2003
Description Quick screen for caregiver strain for long-term family caregivers, including employment, financial, physical, social, and time strains. Can be used with informal caregivers of any sick or elderly person.
Domain assessed Psychological and Social
Category Caregiver and Social Support
Setting Clinical
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 5 to 10 minutes
# Items 13 item scale with 3 point Likert (on a regular basis to no)
Languages Available English (none listed)
Availability Available online
(https://consultgeri.org/try-this/general-assessment/issue-14.pdf)
Scoring Yes; Total score ranges from 0 (low strain) to 26 (high strain). The higher the score on the MCSI, the greater the need for more in-depth assessment to facilitate appropriate intervention
Training Required None
Reliability Excellent Internal Consistency and Good Test-Retest at 2-weeks
Validity Construct validity
Reference Thornton, M., & Travis, S.S. (2003). Analysis of the reliability of the Modified Caregiver Strain Index. The Journal of Gerontology, Series B, Psychological Sciences and Social Sciences, 58(2), S129.
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Modified Caregiver Strain Index
Directions: Here is a list of things that other caregivers have found to be difficult. Please put a checkmark in the columns that apply to you. We have included some examples that are common caregiver experiences to help you think about each item. Your situation may be slightly different, but the item could still apply. Yes, On a Regular Basis=2 Yes, Sometimes =1 No=0
Item Yes Sometimes No
My sleep is disturbed (For example: the person I care for is in and out of bed or wanders around at night)
2 1 0
Caregiving is inconvenient (For example: helping takes so much time or it’s a long drive over to help)
2 1 0
Caregiving is a physical strain (For example: lifting in or out of a chair; effort or concentration is required)
2 1 0
Caregiving is confining
(For example: helping restricts free time or I cannot go visiting) 2 1 0
There have been family adjustments (For example: helping has disrupted my routine; there is no privacy)
2 1 0
There have been changes in personal plans
(For example: I had to turn down a job; I could not go on vacation)
2 1 0
There have been other demands on my time
(For example: other family members need me) 2 1 0
There have been emotional adjustments
(For example: severe arguments about caregiving) 2 1 0
Some behavior is upsetting
(For example: incontinence; the person cared for has trouble remembering things; or the person I care for accuses people of taking things)
2 1 0
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It is upsetting to find the person I care for has changed so much from his/her former self
(For example: he/she is a different person than he/she used to be)
2 1 0
There have been work adjustments
(For example: I have to take time off for caregiving duties) 2 1 0
Caregiving is a financial strain
2 1 0
I feel completely overwhelmed
(For example: I worry about the person I care for; I have concerns about how I will manage)
2 1 0
[Sum responses for “Yes, on a regular basis” (2 pts each) and “yes, sometimes” (1 pt each)]
Total Score = _________
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SCREEN FOR CAREGIVER BURDEN
Published 1991
Description Assesses appraised distress in response to caregiver experiences, including objective burden (number of negative experiences) and subjective burden (distress associated with these experiences). Originally developed for use with informal caregivers of spouses with dementia.
Domain assessed Psychology
Category Caregiver
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 15 to 20 minutes
# Items 25-item scale with 5 point Likert (no occurrence to occurrence with severe distress)
Languages Available English and Spanish
Availability Items (and shortened version) available at link:
(http://onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2004.52468.x/epdf)
Scoring Total score ranges from 25 (no distress) to 100 (high distress). No interpretations provided.
Training Required None
Reliability Good Internal Consistency; Adequate Test-Retest Reliability
Validity Construct Validity; Criterion Validity
Reference Vitaliano, P. P., Russo, J., Young, H. M., Becker, J., & Maiuro, R. D. (1991). The Screen for Caregiver Burden. Gerontologist, 31(1), 76-83.
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Screen for Caregiver Burden – Full Version
Item Did not occur
Occurred but did not cause
distress
Mild distress
Moderate distress
Severe distress
1. My relative continues to drive when he/she should not
0 1 2 3 4
2. I have little control over my relative’s illness
0 1 2 3 4
3. I have little control over my relative’s behaviour
0 1 2 3 4
4. My relative is constantly asking the same questions over and over
0 1 2 3 4
5. I have to do too many jobs/chores (feeding, shopping) that my relative used to do
0 1 2 3 4
6. I am upset that I cannot communicate with my relative
0 1 2 3 4
7. I am totally responsible for keeping our household in order
0 1 2 3 4
8. My relative does not cooperate with the rest of our family
0 1 2 3 4
9. I had to seek public assistance to pay for my relatives medical bills
0 1 2 3 4
10. Seeking public assistance is demeaning and degrading
0 1 2 3 4
11. My relative does not recognize me all the time
0 1 2 3 4
12. My relative has struck me on various occasions
0 1 2 3 4
13. My relative has gotten lost in the grocery store
0 1 2 3 4
14. My relative has been wetting the bed 0 1 2 3 4
25
15. My relative throws fits and has threatened me
0 1 2 3 4
16. I have to constantly clean up after my relatives eats
0 1 2 3 4
17. I have to cover up for my relatives mistakes
0 1 2 3 4
18. I am fearful when my relative gets angry
0 1 2 3 4
19. It is exhausting having to groom and dress my relative everyday
0 1 2 3 4
20. I try so hard to help my relative, but he/she is ungrateful
0 1 2 3 4
21. It is frustrating to find things that my relative hides
0 1 2 3 4
22. I worry that my relative will leave the house and get lost
0 1 2 3 4
23. My relative has assaulted others in addition to me
0 1 2 3 4
24. I feel so alone – as if I had the world on my shoulders
0 1 2 3 4
25. I am embarrassed to take my relative out for fear he/she will do something bad
0 1 2 3 4
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Screen for Caregiver Burden – Short Version
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SOCIAL SUPPORT QUESTIONNIARE
Published 1983
Description Quantified the availability and satisfaction with social supports an individual has
Domain assessed Social
Category Social Support
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 5 to 10 minutes
# Items 27-item with two part answer: 6 point Likert (very satisfied to very dissatisfied) and asked to list who they can rely on for each situational circumstance
Languages Available English
Availability Available online:
(http://www.psych.uw.edu/research/sarason/files/SocialSupportQuestionnaire.pdf)
Scoring Yes (available in above link); Total score ranges from 27 (high dissatisfaction) to 243 (high satisfaction). A support score is calculated for each item based on the number of individuals the participant lists
Training Required None
Reliability Excellent Internal Consistency; Excellent Test-Retest Reliability
Validity Criterion Validity
Reference Sarason, I.G., et al. (1983). Assessing social support: the Social Support Questionnaire. Journal of Personality and Social Psychology, 44, 127-139.
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30
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32
33
34
ZARIT BURDEN INTERVIEW
Published 1980
Description Measures subjective burden among caregiver of adults with dementia, including functional/behavioural impairments and home care situation. Items are worded to focus on the affective response of the caregiver.
Domain assessed Psychological
Category Caregiver Burden
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 15 to 20 minutes
# Items 22-item scale with 5 point Likert (never to nearly always)
Languages Available English, French, Japanese, Chinese, Korean, Spanish, and Brazilian
Availability Available online (https://www.healthcare.uiowa.edu/igec/tools/caregivers/burdenInterview.pdf)
Scoring Yes (at above link); total scores range from 0 (low burden) to 88 (high burden). Score values and interpretations are guidelines only; Interpretation of Score:
0 - 21 little or no burden21 - 40 mild to moderate burden 41 - 60 moderate to severe burden 61 - 88 severe burden
Training Required None
Reliability Excellent internal consistency; acceptable test-retest reliability
Validity Construct validity
Reference Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist, 20(6), 649-655.
35
The Zarit Burden Interview
0: NEVER�1: RARELY�2: SOMETIMES�3: QUITE FREQUENTLY 4: NEARLY ALWAYS Score
1 Do you feel that your relative asks for more help than he/she needs?
0 1 2 3 4
2 Do you feel that because of the time you spend with your relative that you don’t have enough time for yourself?
0 1 2 3 4
3 Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?
0 1 2 3 4
4 Do you feel embarrassed over your relative’s behaviour?
0 1 2 3 4
5 Do you feel angry when you are around your relative?
0 1 2 3 4
6 Do you feel that your relative currently affects our relationships with other family members or friends in a negative way?
0 1 2 3 4
7 Are you afraid what the future holds for your relative?
0 1 2 3 4
8 Do you feel your relative is dependent on you?
0 1 2 3 4
9 Do you feel strained when you are around your relative?
0 1 2 3 4
10 Do you feel your health has suffered because of your involvement with your relative?
0 1 2 3 4
11 Do you feel that you don’t have as much privacy as you would like because of your relative?
0 1 2 3 4
12 Do you feel that your social life has suffered because you are caring for your relative?
0 1 2 3 4 13 Do you feel uncomfortable about having friends over because of your relative?
0 1 2 3 4
14 Do you feel that your relative seems to expect you to take care of him/her as if you were the only one he/she could depend on?
0 1 2 3 4
15 Do you feel that you don’t have enough money to take care of your relative in addition to the rest of your expenses?
0 1 2 3 4
16 Do you feel that you will be unable to take care of your relative much longer?
0 1 2 3 4
17 Do you feel you have lost control of your life since your relative’s illness?
0 1 2 3 4
18 Do you wish you could leave the care of your relative to someone else?
0 1 2 3 4
19 Do you feel uncertain about what to do about your relative?
0 1 2 3 4
20 Do you feel you should be doing more for your relative?
0 1 2 3 4
21 Do you feel you could do a better job in caring for your relative?
0 1 2 3 4
22 Overall, how burdened do you feel in caring for your relative?
0 1 2 3 4
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ZARIT BURDEN INTERVIEW – SHORTENED VERSION
Published 2001
Description Measures subjective burden among caregiver of adults with dementia, including functional/behavioural impairments and home care situation. Items are worded to focus on the affective response of the caregiver.
Domain assessed Psychological
Category Caregiver Burden
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 5 to 10 minutes
# Items 12-item scale with 5-point Likert (never to nearly always)
Languages Available Can be pulled from English, French, Japanese, Chinese, Korean, Spanish, and Brazilian versions
Availability Questions in referenced paper below (Qs 2, 3, 8-12, 16-19, 22)
Scoring Total scores range from 0 (low burden) to 48 (high burden).
Training Required None
Reliability Excellent internal consistency (Cronbach’s alpha = 0.84)
Validity Construct validity
Reference: Bedard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J.A., & O’Donnell, M. (2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41(5), 652-657.
37
The Zarit Burden Interview – Shortened Version
0: NEVER�1: RARELY�2: SOMETIMES�3: QUITE FREQUENTLY 4: NEARLY ALWAYS Score
1 Do you feel that because of the time you spend with your relative that you don’t have enough time for yourself?
0 1 2 3 4
2 Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?
0 1 2 3 4
3 Do you feel your relative is dependent on you?
0 1 2 3 4
4 Do you feel strained when you are around your relative?
0 1 2 3 4
5 Do you feel your health has suffered because of your involvement with your relative?
0 1 2 3 4
6 Do you feel that you don’t have as much privacy as you would like because of your relative?
0 1 2 3 4
7 Do you feel that your social life has suffered because you are caring for your relative?
0 1 2 3 4 8 Do you feel that you will be unable to take care of your relative much longer?
0 1 2 3 4
9 Do you feel you have lost control of your life since your relative’s illness?
0 1 2 3 4
10 Do you wish you could leave the care of your relative to someone else?
0 1 2 3 4
11 Do you feel uncertain about what to do about your relative?
0 1 2 3 4
12 Overall, how burdened do you feel in caring for your relative?
0 1 2 3 4
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ZARIT BURDEN INTERVIEW – SCREENER VERSION
Published 2001
Description Screen for subjective burden among caregiver of adults with dementia and other chronic conditions. Items are worded to focus on the affective response of the caregiver.
Domain assessed Psychological
Category Caregiver Burden
Setting Clinical or Community
Method of Delivery Self-report (or clinician delivered) questionnaire
Time to Administer ~ 5 minutes
# Items 4-item scale with 5-point Likert (never to nearly always)
Languages Available Can be pulled from English, French, Japanese, Chinese, Korean, Spanish, and Brazilian versions
Availability Questions in referenced paper below (Qs 2, 3, 9, 19)
Scoring Total scores range from 0 (low burden) to 16 (high burden).
Training Required None
Reliability Good internal consistency (Cronbach’s alpha = 0.78)
Validity Construct validity
Reference Bedard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J.A., & O’Donnell, M. (2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41(5), 652-657.
39
The Zarit Burden Interview – Screener Version
0: NEVER�1: RARELY�2: SOMETIMES�3: QUITE FREQUENTLY 4: NEARLY ALWAYS
Question
Score
1 Do you feel that because of the time you spend with your relative that you don’t have enough time for yourself?
0 1 2 3 4
2 Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?
0 1 2 3 4
3 Do you feel strained when you are around your relative?
0 1 2 3 4
4 Do you feel uncertain about what to do about your relative?
0 1 2 3 4
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Follow-Up Assessment
THE CAREGIVERS’ ASPIRATIONS, REALITIES, AND EXPECTATIONS (CARE) TOOL
Published 2001
Description For practitioners to systematically evaluate unmet needs of caregivers and shape interventions. Detailed assessment, consisting of 10 sections that cover different aspects of a caregivers situation and allows for the identification of 15 areas of difficulty experienced by the caregiver.
Domain assessed Psychological and Social
Category Caregiving
Setting Clinical
Method of Delivery Interview administered by healthcare professional
Time to Administer Not given (~ 60+ minutes)
# Items Covers 15 areas of caregiving (over 100 questions)
Languages Available English and French
Availability Available online (Contact authors for permission):
(http://www2.gov.bc.ca/gov/content/family-social-supports/seniors/caring-for-seniors/caring-for-the-caregiver)
Scoring Practitioner uses information to identify key areas of difficulty and notes what types of services that would be most beneficial.
Training Required Yes – informal
Reliability None available
Validity None available
Reference Keefe, J., Guberman, N., Fancey, P., Barylak, L., & Nahmiash, D. (2008). Caregivers’ Aspirations, Realities, and Expectations: The C.A.R.E. Tool. Journal of Applied Gerontology, 27(3), 286.
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______________________________________________________________________________
C.A.R.E. Tool
Short Version
Caregivers’ Aspirations, Realities and Expectations N.Guberman, J. Keefe, P. Fancey, L. Barylak
CAREGIVER’S NAME: ______________________________________________________
CARE RECEIVER’S NAME: ___________________________________________________
ASSESSOR’S NAME: _________________________________________________________
DATE(S) OF INTERVIEW:____________________ FILE NUMBER: ____________________
_______________________________________________________________________________________
1. PROFILES�1a. Caregiver Profile
ADDRESS: _______________________________________CITY: ____________________________________
PHONE:_________________________________________________ SEX: ☐ �F ☐M AGE: __________
MARITAL STATUS:______________________ ETHNIC ORIGIN: ____________________________
LANGUAGE SPOKENT AT HOME: ___________________
RELATIONSHIP: THE CARE RECIPIENT IS THE _____________________________________ OF THE CG.
1b. Care Recipient Profile
SEX: ☐F ☐M AGE: _________________________ MARITAL STATUS:____________________
ETHNIC ORIGIN: _________________________________________
LANGUAGE SPOKEN ___________________________________
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ILLNESS / DISABILITY: ____________________________________
Is CR receiving any formal or community services? :☐Yes ☐No
If yes, what type of service(s)? ______________________________________________________________________________
______________________________________________________________________________
________________________________________________________________________
2. DESCRIPTION OF CARE GIVING WORK AND SUPPORT RECEIVED
2.1 List of care giving tasks: intensity, support, problems or difficulties�Do you help the CR in the following areas? If yes, specify what you do.
PHYSICAL/NURSING CARE:
Yes No
Feeding: ____________________________________________________________________ ☐ ☐
________________________________________________________________________________________
Dressing: ___________________________________________________________________ ☐ ☐
________________________________________________________________________________________
Bathing/Showering: _________________________________________________________ ☐ ☐
________________________________________________________________________________________
Grooming: __________________________________________________________________ ☐ ☐
________________________________________________________________________________________
Incontinence Care: _________________________________________________________ ☐ ☐
__________________________________________________________________________________________
Mobility of CR: _______________________________________________________________ ☐ ☐
__________________________________________________________________________________________
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Transfers:_____________________________________________________________________ ☐ ☐
___________________________________________________________________________________________
PT/OT Exercises: ______________________________________________________________ ☐ ☐
___________________________________________________________________________________________
Take Medications: ___________________________________________________________ ☐ ☐
_________________________________________________________________________________________
Nursing/Medical Care: _________________________________________________________ ☐ ☐
__________________________________________________________________________________________
What other types of help does the CR have with these tasks? ___________________________________________________________________________________________
___________________________________________________________________________________________
___________________________________________________________________________________________
Thinking of all the physical and nursing care you do and all the help the CR has, are you having difficulty in any of these areas?
___________________________________________________________________________________________
___________________________________________________________________________________________
___________________________________________________________________________________________
HOUSEHOLD WORK:
Do you help the CR in the following areas? If yes, specify what you do. Yes No
Preparing Meals: ____________________________________________________________ ☐ ☐
_____________________________________________________________________________
Shopping/Errands: ___________________________________________________________ ☐ ☐
_____________________________________________________________________________
Laundry: ____________________________________________________________________ ☐ ☐
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_____________________________________________________________________________
Housecleaning: ______________________________________________________________ ☐ ☐
_____________________________________________________________________________
Yard Work/Light and Heavy Maintenance: ____________________________________ ☐ ☐
_____________________________________________________________________________
Banking/Finances/Legal Help: ________________________________________________ ☐ ☐
_____________________________________________________________________________
Offering Financial Help: _______________________________________________________ ☐ ☐
_____________________________________________________________________________
What other types of help does the CR have with these tasks? _____________________________________________________________________________________
_____________________________________________________________________________________
Thinking of all the household work you do and all the help the CR has, are you having difficulty in any of these areas? ___________________________________________________________________________________________
___________________________________________________________________________________________
SUPPORT/SUPERVISION: “DO YOU NEED TO”�Do you need to do any of the following? If yes, specify what you do.� Yes No
Stay in the House So That CR Feels Safe: ____________________________________________ ☐ ☐
__________________________________________________________________________________
Offer Emotional Support/Reassure CR: ______________________________________________ ☐ ☐
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__________________________________________________________________________________
Correct or Change Dangerous, Unwanted or Difficult Behaviors of the CR: ___________ ☐ ☐
__________________________________________________________________________________
Encourage CR to Participate in Different Activities: __________________________________ ☐ ☐
__________________________________________________________________________________
Ensure Prevention of Injuries, Accidents or Wandering: ______________________________ ☐ ☐
__________________________________________________________________________________
Remain Vigilant at Night: ___________________________________________________________ ☐ ☐
__________________________________________________________________________________
What other types of help does the CR have with these tasks? ___________________________________________________________________________________________
___________________________________________________________________________________________
Thinking of all the emotional support and supervision you do for the CR and all the help the CR has, are you having difficulty in any of these areas?
___________________________________________________________________________________________
___________________________________________________________________________________________
COORDINATION/MEDIATION�Do you need to do any of the following? If yes, specify what you do. Yes No
Locate/Set up/Check on Services: ____________________________________________ ☐ ☐
_____________________________________________________________________________
Organize and/or Train Support Helpers: ________________________________________ ☐ ☐
_____________________________________________________________________________
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Make and/or Accompany CR to Appointments: _______________________________ ☐ ☐
_____________________________________________________________________________
Interpret for CR: ______________________________________________________________ ☐ ☐
____________________________________________________________________________
Arrange/Provide Transportation: _____________________________________________ ☐ ☐
_____________________________________________________________________________
Step in to Improve Relations Between CR and Others: __________________________ ☐ ☐
_____________________________________________________________________________
Advocate for CR: ____________________________________________________________ ☐ ☐
_____________________________________________________________________________
Other, Specify: _______________________________________________________________ ☐ ☐
______________________________________________________________________________
What other types of help does the CR have with these tasks? ___________________________________________________________________________________________
___________________________________________________________________________________________
Thinking of all the mediation and coordination you do and the help CR has for this, are you having difficulty in any of these areas? ___________________________________________________________________________________________
___________________________________________________________________________________________
2.2 Are there other things that you do for CR that we haven’t discussed and that you’d like to talk about? ___________________________________________________________________________________________
___________________________________________________________________________________________
2.3 In your family, who has the last word with regard to decisions concerning CR’s care? __________________________________
Is this situation causing you any trouble? Yes No
If yes, specify?
47
________________________________________________________________________________
___________________________________________________________________________________________
2.4 How long have you been care giving? _____________ Length of intense care giving (if applicable). _____________________ �
2.5 Would you consider that your care giving responsibilities are: � 24 Hours/ Day Like a Full-Time Job Like a Part-Time Job Occasional �
2.6 Would you say your helping role preoccupies you: �All the Time Often Sometimes Rarely �
2.7 How and why did you become the main person responsible for CR’s care? ___________________________________________________________________________________________
___________________________________________________________________________________________
2.8 Who do you feel you can really count on for support? ___________________________________________________________________________________________
___________________________________________________________________________________________
2.9 On a scale of 1 to 10, where would you put your need for support in your care giving work? 1=No Need and1 0= Very High Level of Need _____
3. CAREGIVER’S RELATIONSHIP TO FORMAL SERVICES
3.1 Would you like to be more involved in decisions around homecare, medical care or other services? Yes No �
3.2 Do you feel you are getting enough information from professionals about CR’s health problems or condition? � Yes No �
3.3 In your relationships with professionals do you encounter any problems due to language, culture, lifestyle choices, �values, etc.? Yes No �
If yes, specify? ___________________________________________________________________________________________ ___________________________________________________________________________________________
4. HOUSING/TRANSPORTATION
4.1 Does the CG live with the CR? Yes No� f no, approximate distance between CG’s and CR’s residences. ___________________________________________________________________________________
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Who else lives with CG? _______________________________________________________________________
4.2 What difficulties, if any, do your living or housing arrangements cause? ___________________________________________________________________________________________ ___________________________________________________________________________________________ ___________________________________________________________________________________________
4.3 What difficulties, if any, do you have concerning the condition of your/CR house as it relates to caregiving? ___________________________________________________________________________________ ___________________________________________________________________________________________ ___________________________________________________________________________________________
4.4 Does the fact you live in an area (rural, small town, suburban, urban) create any problems for you with regard to your caring role? Yes No
If yes, specify. ___________________________________________________________________________________________ ___________________________________________________________________________________________
___________________________________________________________________________________________
4.5 Do you foresee any changes in your living arrangements in the next year because of the care you provide to CR?
Yes No�If yes, specify. ___________________________________________________________________________________________
4.6 Are there any specific concerns you have about transportation? Yes No�If yes, what are they? _________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
5. JUGGLING RESPONSIBILITIES�5.1 Do you have children? Yes No
If so what are their ages? ___________________________________________________________________________________________
Among these, how many do you provide care for? ___________________________________________________________________________________________
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___________________________________________________________________________________________
5.2 What other responsibilities or commitments do you have (e.g. employment, child care, education, volunteer employment, leisure?
___________________________________________________________________________________________ ___________________________________________________________________________________________
5.3 How do you manage to juggle your responsibilities, commitments and caring for CR?
___________________________________________________________________________________________ ___________________________________________________________________________________________
5.4 Have you dropped or do you intend to drop any of your commitments or responsibilities because of your caring role?
Yes No�If yes, what have you given up?
___________________________________________________________________________________________ ___________________________________________________________________________________________
5.4.1 How has this decision changed or will it change your situation?
___________________________________________________________________________________________ ___________________________________________________________________________________________
5.5 How has this decision affected or changed you or your caring role?
___________________________________________________________________________________________ ___________________________________________________________________________________________
5.6 FOR EMPLOYED CAREGIVERS ONLY:
5.6.1 How has your work been affected by your care giving role?
___________________________________________________________________________________________ ___________________________________________________________________________________________
5.6.2 Have you any concerns about your work?
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___________________________________________________________________________________________ ___________________________________________________________________________________________
5.6.3 How have adjustments at work affected you or your financial situation?
___________________________________________________________________________________________
___________________________________________________________________________________________
6. FINANCIAL COSTS OF CAREGIVING PLEASE NOTE THE FOLLOWING TO THE CG:
Caregivers often assume many costs associated with care, and for some, these costs can be a source of considerable difficulty. However, money can be a delicate issue. �
Caregiver is not obliged to answer any questions if she/he would prefer not to. �
6.1 Which of the following choices best describes your and CR’s income situation?
Our income is considered as family income (everything is together). You and CR have separate incomes. Only CR has income. Only CG has income.
6.1.1 Does the situation you described cause any problems for you or for CR? Yes No� If yes, what are they? ___________________________________________________________________________________________
___________________________________________________________________________________________
6.2 Are you having any problems with out of pocket expenses related to care giving? (E.g. medication, housing expenses, special diet, helpers or services, etc.)
If yes, what are they?
___________________________________________________________________________________________
___________________________________________________________________________________________
6.3 Are there medications, supplies or treatments that CR should have, that she/he or you can’t afford? Yes No�If yes, specify. ___________________________________________________________________________________________
___________________________________________________________________________________________
6.4 Are you aware of financial and tax-related programs, which you or your CR might benefit from? Yes No ___________________________________________________________________________________________
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___________________________________________________________________________________________
7. PERSONAL HEALTH
7.1 Do you have any specific medical or mental health conditions? ___________________________________________________________________________________________
___________________________________________________________________________________________
7.2 Is your physical health:
Excellent Good Fair Poor
If fair or poor, how does this affect you? ___________________________________________________________________________________________
___________________________________________________________________________________________
7.3 Is your emotional health or morale:
Excellent Good Fair Poor
If fair or poor, how does this affect you? ___________________________________________________________________________________________
___________________________________________________________________________________________
7.4 Physical Health
7.4.1 Since you have become involved in caring for CR (or in recent years), have there been any negative changes in the following areas:
Sleeping Doctor/Dentist Attention
General Nutrition Use of Medication and/or Drugs
Headaches Alcohol Consumption
Backaches Cigarette Smoking
Tiredness Weight
Previous Medical Condition Exercise
7.4.3 Has your sexual/intimate life changed in any way and how has this affected you? ___________________________________________________________________________________________
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___________________________________________________________________________________________
7.5 Emotional Health
7.5.1 Over the past few months, have you experienced any of the following feelings?
Boredom Feeling Unappreciated
Nervousness/Worry Anger
Exhaustion �Feeling Overwhelmed
Isolation/Loneliness Frustration/Discouragement
Sadness Loss, Grief or Mourning Depression
Guilt Helplessness
7.5.2 Which of these feelings are related to your care giving? ___________________________________________________________________________________________
___________________________________________________________________________________________
7.5.3 Which of these feelings cause you the biggest concern? ___________________________________________________________________________________________
___________________________________________________________________________________________
7.5.4 Are you able to find ways to relieve these feelings? Yes No
If yes, how? And is this enough? ___________________________________________________________________________________________
___________________________________________________________________________________________
7.5.5 Have you recently had a major stress in your life such as the death, job loss, divorce or illness? Yes No
If yes, specify. And how this affected you?
___________________________________________________________________________________________
___________________________________________________________________________________________
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8. CAREGIVER—CARE RECEIVER—FAMILY RELATIONSHIPS�8.1 Has your relationship to CR changed since you have started assuming responsibility for his/her care (or in the past
5 years)? Yes No
If yes, how? ___________________________________________________________________________________________
___________________________________________________________________________________________
8.2 Are there areas of tension between you and CR regarding the care you provide? Yes No
If no, go to 8.3.
8.2.1 If yes, what are they and how do they affect you? ___________________________________________________________________________________________
___________________________________________________________________________________________
8.3 Do you experience difficulties because of certain behaviors or needs of CR like:
Shouting, Sexual Gestures or Other Inappropriate Behaviors Sexually Aggressive
Memory Problems or Troubles Understanding Others
Wandering off Repeating Self
In Need of Much Attention Being Uncooperative
Verbally Aggressive Physically Aggressive
8.3.1 How does this affect you? _____________________
8.4 Do you feel you need assistance dealing with these behaviors? Yes No �
8.5 Is there tension between you and other family members (spouse, siblings, children) or close friends about the care you provide for CR? Yes No �
8.5.1 If yes, what are they and how do they affect you? _______________________________________________________________________________________________
_______________________________________________________________________________________________
8.6 Has your relationship with other family members (spouse, siblings, children) or close friends changed because of your role in caring for CR? Yes No
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If yes,, in what ways? ___________________________________________________________________________________________
___________________________________________________________________________________________
8.7 Do you feel appreciated for the work you do? Yes No
8.7.1 If yes, who do you receive appreciation from?� Care Receiver Relative Service Provider Others (specify who) ___________________________________________________________________________________________
8.7.2 If no, how does this make you feel? ___________________________________________________________________________________________
___________________________________________________________________________________________
8.8 What is the most rewarding thing for you about caring for CR? ___________________________________________________________________________________________
___________________________________________________________________________________________
8.9 What qualities and personal strengths do you bring to your caring role? ___________________________________________________________________________________________
___________________________________________________________________________________________
9. PLANNING ISSUES, CRISES AND THE FUTURE PLEASE NOTE THE FOLLOWING TO CG:
• A crisis situation refers to a sudden, unexpected change, while future care refers to planning.
9.1 How do you deal with a crisis situation? ___________________________________________________________________________________________
___________________________________________________________________________________________
9.2 Do you have a plan in place to deal with the following crises?
Sudden Deterioration of the Situation/Sudden Increase in CRs’ Needs Yes No�If yes, specify. ___________________________________________________________________________________________
Being Suddenly Unable to Provide Care. Yes No�If yes, specify. ___________________________________________________________________________________________
CR Wanders or Gets Lost (If Applicable). Yes No�If yes, specify. ___________________________________________________________________________________________
CR Attempts Suicide. Yes No�If yes, specify.
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___________________________________________________________________________________________
Need for Sudden Evacuation. Yes No�If yes, specify. ___________________________________________________________________________________________
9.3 Have you discussed with CR the current or future legal aspects of your care giving role, such as wills, guardianship, power of attorney, advance directives? Yes No �
9.4 Do you have any plans in place for the future care of CR? Yes No �
9.5 Do you have any specific worries about the future with regards to your caring? Yes No �
If yes, specify. ___________________________________________________________________________________________
___________________________________________________________________________________________
9.6 Thinking about the future, and given all that you have said about the impacts of caring on your life, do you think you have the mental energy and strength necessary to continue caring for CR? Yes No
Comments ___________________________________________________________________________________________
___________________________________________________________________________________________
___________________________________________________________________________________________
___________________________________________________________________________________________
9.6.1 If yes, what do you need in terms of skills or support to help you continue caring for CR?
___________________________________________________________________________________________
___________________________________________________________________________________________
9.6.2 If no, which of the following best represents the changes that you would like to see?
I WOULD LIKE...
Share my responsibilities with formal service providers.
Share my responsibilities with other family members.
Consider moving CR to a residence or alternative housing.
Consider moving CR to a long term care facility.
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Reduce significantly my care responsibilities but remain involved.
Discontinue my involvement in CR’s care.
9.7 Because caregivers may not be aware of all the resources and services that can be available to them, here is a list of potential supports that may be useful to you. If it was possible to have access to all the following services which would be most useful to you in your caring role?
Information
Prescription Assistance Support for Emergencies
Support Groups Counseling (Individual or Family)
Religious/Spiritual Advisor Legal Services/Notary Public
Financial Aid/Benefits Housing Assistance
Transportation Services Abuse Services
Helping in Considering Supported Living/Placement
Other, specify ____________________________________
Comments ___________________________________________________________________________________________ ___________________________________________________________________________________________
9.8 Of everything you have named, what would be the most helpful for you? ___________________________________________________________________________________________ ___________________________________________________________________________________________
9.8.1 Which of these resources and services will ensure that you take time just for yourself? ___________________________________________________________________________________________
___________________________________________________________________________________________
9.9 Would you like to be involved in the following?
Represent caregivers on agency committees.
Be involved in advocacy groups for caregivers.
57
Be part of groups consulted on government policy concerning caregivers.
Be involved in research on care giving. Other, specify. ___________________________________________________________________________________________ ___________________________________________________________________________________________
9.10 Is this the first opportunity you have had to really discuss your situation? ___________________________________________________________________________________________ ___________________________________________________________________________________________
10. OTHER INFORMATION
10.1 We have covered all of the areas in the C.A.R.E. Tool but is there anything else we should know about you, about CR or your family which that would help us understand your situation? For example, with regard to family dynamics, cultural background or religion beliefs?
___________________________________________________________________________________________ ___________________________________________________________________________________________
___________________________________________________________________________________________ ___________________________________________________________________________________________
11. ASSESSOR’S NOTES
___________________________________________________________________________________________ ___________________________________________________________________________________________
___________________________________________________________________________________________ ___________________________________________________________________________________________
___________________________________________________________________________________________
___________________________________________________________________________________________ ___________________________________________________________________________________________
___________________________________________________________________________________________
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C.A.R.E. TOOL SUMMARY SHEET
Summary of Situation _______________________________________________________________________________________
_______________________________________________________________________________________
_______________________________________________________________________________________
Item Degree of Difficulty Potential for Deterioration
None Little Some Significant Extreme YES CAREGIVING WORK Physical/Nursing Care
Household Work� Supervision and Support of CR Coordination HELP received from others (informal & informal) RELATIONSHIP with formal service providers HOUSING/TRANSPORTATION� JUGGLING RESPONSIBILITIES� FINANCIAL costs� PHYSICAL health� EMOTIONAL health� RELATIONSHIP with care recipient � RELATIONSHIP with family members� PLANNING for crises � PLANNING for future
Key areas of concern Recommended interventions
Identified by Caregiver Assessor
Is caregiver interested in continuing to provide care? Yes No�
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If yes, under which conditions? ___________________________________________________________________________________________
___________________________________________________________________________________________
Date of Reassessment: _______________________________________________________________________
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APPENDIX
General Notes:
Reliability and Validity Information Reliability Constructs
Internal Consistency – Measures whether several items that propose to measure the same general construct produce similar scores.
Test-retest Reliability – Measures the degree to which test results are consistent over time.
Assessment of Reliability:
Excellent = Greater than 0.9 Good = Between 0.8 and 0.9
Acceptable = Between 0.7 and 0.8 Questionable = Between 0.6 and 0.7
Poor = Between 0.5 and 0.6 Unacceptable = Less than 0.5
Validity Constructs
Construct Validity – Measures what it intends to measure
Convergent Validity – Degree to which two measures of constructs that should be related are related
Criterion Validity – The extent to which a measure is related to an outcome
Content Validity – Extent to which a measure represents all facets of a given social construct
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REFERENCES
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