screening for stress and burden in caregivers of seniors oct...

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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

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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:

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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



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


(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


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


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.


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




# Items 18 items (16 items scored yes/no and 2 items scored 1 to 10)

Languages Available English, Spanish, and Greek


(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;


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




# 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)


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


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)


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.


Category Caregiving




# 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)


Reliability Excellent Internal Consistency


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



# Items 13 item scale with 3 point Likert (on a regular basis to no)

Languages Available English (none listed)


(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


Reliability Excellent Internal Consistency and Good Test-Retest at 2-weeks


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




# 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.


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

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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


Category Social Support




# 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


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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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.


Category Caregiver Burden




# 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


Reliability Excellent internal consistency; acceptable test-retest reliability


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.

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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

36

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.






# 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).


Reliability Excellent internal consistency (Cronbach’s alpha = 0.84)


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


0 1 2 3 4


0 1 2 3 4

3 Do you feel your relative is dependent on you?

0 1 2 3 4


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


0 1 2 3 4

12 Overall, how burdened do you feel in caring for your relative?

0 1 2 3 4

38

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.





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).


Reliability Good internal consistency (Cronbach’s alpha = 0.78)


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


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4


0 1 2 3 4

40

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.

41

______________________________________________________________________________

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 ___________________________________

42

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: _______________________________________________________________ ☐ ☐

__________________________________________________________________________________________

43

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: ____________________________________________________________________ ☐ ☐

44

_____________________________________________________________________________

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: ______________________________________________ ☐ ☐

45

__________________________________________________________________________________

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: ___________________________________________________________ ☐ ☐

__________________________________________________________________________________


___________________________________________________________________________________________

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: ________________________________________ ☐ ☐

_____________________________________________________________________________

46

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: _______________________________________________________________ ☐ ☐

______________________________________________________________________________


___________________________________________________________________________________________

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. ___________________________________________________________________________________

48

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? ___________________________________________________________________________________________

49

___________________________________________________________________________________________

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?

50

___________________________________________________________________________________________ ___________________________________________________________________________________________

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 ___________________________________________________________________________________________

51

___________________________________________________________________________________________

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? ___________________________________________________________________________________________

52

___________________________________________________________________________________________

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?

___________________________________________________________________________________________

___________________________________________________________________________________________

53

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

54

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.

55

___________________________________________________________________________________________

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.

56

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

___________________________________________________________________________________________ ___________________________________________________________________________________________

___________________________________________________________________________________________ ___________________________________________________________________________________________

___________________________________________________________________________________________

___________________________________________________________________________________________ ___________________________________________________________________________________________

___________________________________________________________________________________________

58

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�

59

If yes, under which conditions? ___________________________________________________________________________________________

___________________________________________________________________________________________

Date of Reassessment: _______________________________________________________________________

60

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

Bohnert, N., Chagnon, J., & Dion, P. (2015). Population Projections for Canada (2013 to 2063), Provinces and Territories (2013 to 2038), Statistics Canada. Retrieved from http://www.statcan.gc.ca/pub/91-520-x/91-520-x2014001-eng.pdf. Accessed 25 October 2015 Butler-Jones D. (2010). Report on State of Public Health in Canada (2010), ‘Growing older– adding life to years.’ Retrieved from http://www.phac-aspc.gc.ca/cphorsphc-respcacsp/2010/fr-rc/pdf/cpho_report_2010_e.pdf. Accessed 25 October 2015. Canadian Institutes of Health (2009). Supporting informal caregivers – the heart of home care. Ottawa (ON). Retrieved from https://secure.cihi.ca/free_products/Caregiver_Distress_AIB_2010_EN.pdf Accessed on 30 September 2015. Dudgeon, S. (2010). Rising tide: The impact of dementia on Canadian society Alzheimer Society of Canada, Retrieved from http://www.alzheimer.ca/~/media/Files/national/Advocacy/ASC_Rising_Tide_Full_Report_e.pdf. Accessed on 01 October 2015. Dumont, S., Jacobs, P., Fassbender, K., Anderson, D., Turcotte, V., & Harel, F. (2009). Costs associated with resource utilization during the palliative phase of care: A Canadian perspective. Palliative Medicine, 23(8), 708-717. Eales, J., Kim, C., & Fast, J. (2015). A snapshot of Canadians caring for persons with dementia: The toll it takes. Research on Aging, Policies and Practice Retrieved from: http://www.rapp.ualberta.ca/~/media/rapp/Home/Documents/2015-10-7_Dementia_Caregivers_in_Canada.pdf. Accessed 10 October 2015. Hollander, M., Guiping, L., & Chappell, N.L. (2009). Who Cares and How Much? Healthcare Quarterly. 12(2), 42-29. Kitts J. (2012). Health council of Canada Report on homecare priorities. ‘Seniors in need, Caregivers in distress.’ Retrieved from http://www.alzheimer.ca/durham/~/media/Files/on/Media%20Releases/2012/April%202012/HCC_HomeCare_2d.pdf Accessed 15 September 2015

Sinha, M. (2012). Results from General Social Survey ‘Portrait of Caregivers’, Statistics Canada. Retrieved from http://www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-eng.pdf

Smetanin, P., Kobak, P., Briante, C., Stiff, D., Sherman, G., & Ahmad, S. (2010) Rising Tide: The impact of dementia in Canada 2008 to 2038. Risk Analytica, 2009. Retrieved from: http://www.alzheimer.ca/~/media/Files/national/Advocacy/Rising_Tide_RiskAnalytica.pdf. Accessed on 01 October 2015. Stajduhar, K., Funk, L., Toye, C., et al. (2010). Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliative Medicine, 24, 573-93.