Stress and Burden in

Caregivers of Seniors
Assessment Tools
August 2016
Table of Contents
Stress and Burden in Caregivers of Seniors: Assessment Tools ......................... 2
Background ....................................................................................................... 2

Toolkit Development....................................................................................... 2
Screening Assessments ................................................................................. 2
Follow-Up Assessment.................................................................................... 2
Caregiver Burden Inventory............................................................................... 3

Caregiver Reaction Assessment........................................................................ 4

Caregiver Risk Screen………………………………………………………………. 5

Caregiver Self-Assessment Questionnaire ....................................................... 6

Caregiver’s Burden Scale in End-of-Life Care................................................... 7

Carer Support Needs Assessment Tool…………………………………………… 8

Cost of Care Index ........................................................................................... 9

Modified Caregiver Strain Index........................................................................ 10

Screen for Caregiver Burden.......................................................................... 11

Social Support Questionnaire........................................................................... 12

Zarit Burden Interview....................................................................................... 13

The Caregivers’ Aspirations, Realities, and Expectations (CARE) Tool........... 14

Appendix ......................................................................................................... 15

General Notes .............................................................................................. 15

References...................................................................................................... 16
Stress and Burden in Caregivers of Seniors: Assessment Tools
Background
Canada’s population is aging and 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 strain
(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 Risk Screen
4. Caregiver Self-Assessment Questionnaire
5. Caregiver’s Burden Scale in End-of-Life Care
6. Carer Support Needs Assessment Tool
7. Cost of Care Index
8. Modified Caregiver Strain Index
9. Screen for Caregiver Burden
10. Social Support Questionnaire
11. Zarit Burden Interview

Follow-Up Assessment
The Caregivers’ Aspirations, Realities, and Expectations (CARE) Tool

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Caregiver Burden Inventory

Published 1989

Description Measures 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

(http://gerontologist.oxfordjournals.org/content/29/6/798.full.pdf)

Scoring Yes; total score are summed, with a score greater than 36 indicating a risk of
burning out and scores near 24 indicating a 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 Reaction Assessment

Published 1992

Description Assesses 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://onlinelibrary.wiley.com/doi/10.1002/nur.4770150406/full)

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 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 available online

(http://onlinelibrary.wiley.com/doi/10.1002/gps.1707/abstract) 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 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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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 online (http://www.ncbi.nlm.nih.gov/pubmed/18942565)

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 online

(https://www.ncbi.nlm.nih.gov/pubmed/26636891) 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 (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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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 online (http://gerontologist.oxfordjournals.org/content/26/3/273.short)

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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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 Psychological and Social
assessed
Category Caregiver and Social Support

Setting Clinical

Method of Self-report (or clinician delivered) questionnaire

Delivery
Time to ~ 5 to 10 minutes
Administer
# Items 13 item scale with 3 point Likert (on a regular basis to no)

Languages English (none listed)

Available

Availability Available online

(http://psychsocgerontology.oxfordjournals.org/content/58/2/S127.full.pdf+html?sid=0c865ce2-
d7d7-48fd-94b3-ad96de4a4111)
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 None
Required
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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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 Available online:

(http://gerontologist.oxfordjournals.org/content/31/1/76.long)

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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Social Support Questionnaire

Published 1983

Description Quantifies the availability of, and satisfaction with, social supports available to
an individual.

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://psycnet.apa.org/journals/psp/44/1/127/)

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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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

(http://gerontologist.oxfordjournals.org/content/20/6/649.abstract)
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 burden
21 - 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.

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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 caregiver’s situation and allows for the identification of 15 areas of
difficulty experienced by the caregiver.
Domain Psychological and Social
assessed
Category Caregiving

Setting Clinical

Method of Interview administered by healthcare professional

Delivery
Time to Not given (~ 60+ minutes)
Administer
# Items Covers 15 areas of caregiving (over 100 questions)

Languages English and French

Available
Availability Available online:
(http://www.msvu.ca/en/home/research/centresandinstitutes/centreonaging/projects/
caregiverassessment/instruments.aspx)
Scoring Practitioner uses information to identify key areas of difficulty and notes what types
of services that would be most beneficial.
Training Yes – informal
Required
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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 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.

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 Developed for Covenant Health

Network of Excellence in Seniors’ Health and Wellness by

Dr. Jasneet Parmar, MBBS, and Lori-Ann R. Sacrey, PhD

© 2016

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