SelCGAssmtMeas ResInv FINAL 12.10.12
SelCGAssmtMeas ResInv FINAL 12.10.12
SelCGAssmtMeas ResInv FINAL 12.10.12
in collaboration with
II
Acknowledgements
The Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners,
2nd Edition, was compiled by Sarah Schwartz, MSSA, and Laura Darlak, BA, under the
supervision of Carol J. Whitlatch, Ph.D., Assistant Director of the Margaret Blenkner
Research Institute of the Benjamin Rose Institute on Aging. Critical guidance, input, and
review was provided throughout this project by Kathleen Kelly, MPA, Executive Director of
Family Caregiver Alliance, National Center on Caregiving.
We would like to thank David M. Bass, Ph.D., Vice President for Research, and Director of
the Margaret Blenkner Research Institute of the Benjamin Rose Institute on Aging for his
review of the assessment instrument inventory and insightful revisions to the document.
Funding
The National Center on Caregiving, Family Caregiver Alliance is funded, in part, by the U. S. Department of
Health and Human Services, Administration for Community Living, Administration on Aging. Grantees
undertaking projects under government sponsorships are encouraged to express freely their findings and
conclusions. These contents, however, do not necessarily represent the policy of the U.S. Department of
Health and Human Services, and you should not assume endorsement by the Federal Government.
III
IV
similar measures and subscales. Please note that all subscales separated from their
original source are again presented together in their original format at the end of the
inventory, in section VIII Multi-dimensional Measures.
Table of Contents: The Table of Contents lists the seven conceptual domains
(I. CONTEXT, II. CAREGIVERS PERCEPTION OF HEALTH AND FUNCTIONAL
STATUS OF CARE RECIPEINT, etc.), followed by related Constructs in bold, and then
specific measures. This format can be used to help the reader locate specific measures
that assess these specific constructs.
Practical organization. The resource inventory is tabled into seven columns that are
labeled and defined as follows:
Measure: Name of the measure as cited in the literature, presented in alphabetical
order within each construct category.
Source: Author(s) and year(s) of the published source(s), in chronological order
from earliest to most recent source.
# of items: Number of items included in the measure, e.g., number of questions or
statements.
Item responses: Number and text of the response options that accompany items,
e.g., 3-point scale: never, sometimes, or always.
Reliability: Cronbachs correlation coefficient (unless otherwise noted) is
represented by (alpha), typically .70 and higher. Reliability is categorized as
NAP, i.e., not applicable, for those measures that cannot be appropriately
assessed for reliability using this type of test (e.g., yes/no response options). NA is
used to note that the information is not available.
Validity: Determination of validity by type (e.g., construct, convergent, or
discriminant) is presented in this column. If a determination of validity is not
available, validity is categorized as NA.
Description: Description of the measure, the construct it is meant to assess, and
sample items, when available, is included in the last column. Differences in the use
of terminology (e.g., care recipient or care receiver), may reflect regional and/or
cultural differences and/or the preferences of the original author(s).
The measures that assess the Context of the care situation (Domain 1) are drawn from
assessments and interviews conducted with thousands of caregivers. We have
included examples of how to word these important questions, but recognize that the
wording of these questions will vary depending on funding source, care planning needs,
and type of interview (e.g., self- vs. provider-administered).
VII
Subject Index: We have added a subject index to the 2nd Edition to help the reader identify
where to find groups of conceptually-related measures within the inventory by page
number.
References that were used to compile the 1st and 2nd Editions of the inventory and for
Specific Measures can be found in the Reference section located at the end of this
publication. References for Specific Measures is an alphabetical list of references that
includes the page numbers where each reference and accompanying measure can be
found. We hope that by including the page numbers, the inventory can help readers who
know the name of an author of a specific measure, but do not know the name of the
measure.
perform these medical and nursing tasks. As a result, caregivers are concerned they
might be making a mistake or may harm their family member (Reinhard et al., 2012),
which undoubtedly leads to increased caregiver stress. Given this increase in the
provision of medical and nursing tasks and the lack of measures to assess the caregivers
understanding of medical tests and procedures, we strongly recommend the development
of measures to assess the caregivers ability, understanding of, and comfort in performing
medical and nursing tasks. An effective assessment would present recommendations for
the type of training a caregiver might need so that s/he is able to perform these tasks with
confidence, thus ensuring the best care for their relative.
Lastly, only one measure exists which assesses the caregivers values for care as they
relate to culturally based norms (see III. Caregivers values and preferences: Culturally
based norms, Cultural Justifications Scale). The ability to capture the caregivers
motivation for providing care in the context of cultural norms and expectations is currently
limited to this single measure. By understanding a caregivers motivation we are better
able to support his/her preferences for continuing, altering, or ending care provision.
Given these limitations in available measures, we recommend that instruments be
developed and tested which capture the intent of these essential domains. We look
forward to including new measures in a 3rd Edition in the future.
IX
TABLE OF CONTENTS
I.
CONTEXT
Caregiver relationship to care recipient
Physical environments
Household status
Financial Status
Quality of family relationships
Duration of caregiving
Employment status
General Demographics
II.
CAREGIVERS PERCEPTION AND REACTION TO THE HEALTH AND FUNCTIONAL STATUS OF THE
CARE RECIPIENT
Activities of Daily Living
Caregiver Assessment of Function and Upset (CAFU)................................................... 3
Care Recipient Impairment: a. Physical disability............................................................ 3
Family Caregiving Factors Inventory: c. Caregiving Task Difficulty ................. 3
Family Caregiving Factors Inventory: d. Knowledge of the Care Recipient....... 4
Family Caregiving Inventory: a. Mutuality Scale.............................. 4
Instrumental Activities of Daily Living ................................ 4
Physical Labor Scale.................. 4
Stetz Inventory, Part I....................................................................................................... 4
Vigilance/Disruptiveness Scale........................ 4
Psycho-social needs
Cognitive impairment
Care Recipient Impairment; b. Cognitive impairment..... 5
Unmet Needs: a. Understanding Memory Problems...... 5
Behavioral problems
Behavior and Mood Disturbance (BMD) Scale and Relatives Stress (RS) Scale............ 5
Care Recipient Impairment: a. Problem behaviors........ 5
Caregiving Hassles and Uplifts Scale... 6
Family Burden Interview......... 6
Frequency of Behavior Problems Scale.... 6
Neuropsychiatric Inventory Caregiver Distress Scale............... 6
Revised Memory and Behavior Problems Checklist...... 6
Medical tests and procedures
Credibility/Expectancy Questionnaire...... 6
Pain
The Pain Responses Self Statements-Spouse Version (PRSS-SO)....... 7
The Pain Self-Efficacy Questionnaire-Spouse Version (PSEQ-SO) .......... 7
West Haven-Yale Multidimensional Pain Inventory-Spouse Version (MPI-SO)........ 7
III.
V.
10
10
10
10
10
11
11
11
11
11
12
12
12
12
13
13
13
13
13
13
13
14
14
14
14
15
15
15
15
15
16
16
16
16
16
17
17
CONSEQUENCES
Perceived Challenges: Social isolation
Caregiver Reaction Assessment: a. Disrupted schedule........ 17
Caregiver Strain Instrument: a. Restrictions in caregivers activities................... 17
Cost of Care Index: b. Personal and social restrictions.............. 18
Leisure Time Satisfaction (LTS)................................... 18
Mental Health Effects: c. Social change index............... 18
Sense of Competence Questionnaire: c. Consequences of Involvement in Care for the
Personal Life of the Caregiver........................................................................................ 18
Social Isolation........................................... 18
Time Constraints Scale................ 18
Perceived Challenges: Work strain
XI
Job-Caregiving Conflict................... 19
Work/Caregiving Conflict and Caregiving/Work Conflict.............................. 19
Work Emotional Exhaustion Scale............................ 19
Work/Family Conflict............................ 19
WPAI - Work Productivity and Activity Impairment Questionnaire - Modified.................. 19
Perceived Challenges: Emotional health strain
Aspects of the Caregiving Role: h. Resentment and Anger.... 20
Aspects of the Caregiving Role: e.Overload...... 20
Caregiver Appraisal Measure: b. Impact on Caregiving...... 20
Caregiver Appraisal Measure: a. Subjective Caregiving Burden...... 20
Caregiver Burden Inventory: a. Time-dependence Burden....... 20
Caregiver Burden Inventory: b. Developmental Burden. 21
Caregiver Burden Inventory: c. Physical Burden. 21
Caregiver Burden Inventory: d. Social Burden. 21
Caregiver Burden Inventory: e. Emotional Burden..... 21
Caregiving Burden Measure....................................... 21
Caregiving Burden Scale.......................... 21
Caregiver Distress Activities..................... 21
Care-related Strain............... 22
Family Strain Scale........................ 22
Filial Anxiety Scale....... 22
General Strain.................. 22
Guilt................ 23
Guilt Scale ................... 23
Loss of self................... 23
Measures of Strain: a. Appraised difficulty of caregiving.............. 23
Measures of Strain: b. Negative consequences of caregiving.......... 23
Mental Health Effects: a. Perceived Burden................. 24
Mental Health Effects: b. Consequences of caring............... 24
Modified Caregiver Strain Index................... 24
Negative Perception of Care Situation........................ 24
Novel Caregiver Burden...................................................... 24
Perceived Burden Measure.......................... 25
Perceived Burden Scale ........................ 25
Role Captivity........................... 25
Role Overload................... 25
Screen for Caregiver Burden........................ 26
Tension................................ 26
Zarit Burden Interview.................... 26
Zarit Burden Interview - screening version............................. 26
Zarit Burden Interview - short version.......................... 26
Perceived Challenges: Physical health strain
Caregiver Reaction Assessment: d. Health Problems.... 26
Caregiver Strain Instrument: b. Health Strain........ 27
Caregiver Subjective Physical Health....... 27
Cost of Care Index: b. Physical and emotional Health....... 27
Eldercare Strain............................. 27
Physical Health Deterioration...................................... 28
Perceived Challenges: Grief/Loss
Bereavement Consequences.................. 28
Finding Meaning Through Caregiving: a. Loss/Powerlessness.. 28
Grief Scale................. 28
Loss of Intimate Exchange..................... 29
Personal Bereavement Difficulties................................. 29
Relational Deprivation.............................. 29
Perceived Challenges: Financial strain
Caregiver Reaction Assessment: b. Financial Problems............ 29
XII
VI.
XIII
29
30
30
30
30
31
31
31
31
31
32
32
32
32
32
33
33
33
33
33
34
34
34
34
34
35
35
35
35
35
35
36
36
36
36
36
37
37
37
37
37
38
38
38
39
39
39
39
39
Performance as a Caregiver...........................................................................
Task Management Strategy Index...
Appropriate knowledge of medical care tasks (wound care, etc.)
Self-Care of Heart Failure Index (SCHFI) Family member version.........
Unmet Needs: b. Medical Follow-up and Medications Scale..................
VII.
39
40
40
40
40
41
41
41
41
42
42
42
42
43
43
43
43
43
44
Coping strategy
Appraisal of Caregiving: a. Stress. 44
Appraisal of Caregiving: b. Challenge.......... 44
Appraisal of Caregiving: c. Controllability..... 44
Avoidance Scale..... 44
Carers Assessment of Managing Index (CAMI) ...................... 44
Coping Strategies Inventory....... 45
Finding Meaning Through Caregiving Scale: c. Ultimate Meaning.......... 45
Inventory of Coping Strategies....... 45
Jalowiec Coping Scale........ 45
Reinterpretation and Acceptance... 45
Religiosity.... 45
Spiritual History Scale in Four Dimensions (SHS-4)....... 46
Ways of Coping Checklist 46
Financial resources (health care service benefits, entitlements such as VA, Medicare)
Unmet Needs: g. Legal and Financial Issues..................... 46
Nursing home support
Nursing Home Stressors: a. Nursing assistants communication with residents family.. 46
Nursing Home Stressors: b. Nursing assistants support for families............. 47
Nursing Home Stressors: c. Measures of positive and negative interactions....... 47
Unmet Needs: h. Alternate Living Arrangements Scale............. 47
VIII. SUBJECT INDEX.
IX. REFERENCES
References Used to Compile Inventory.
References for Specific Measures..
XIV
ii
iv
Source
The Benjamin Rose Institute on Aging,
Margaret Blenkner Research Institute,
Cleveland, OH
The Benjamin Rose Institute on Aging,
Margaret Blenkner Research Institute,
Cleveland, OH
Sample Items
1. Chronicity of stressors:
a. When did CG first notice CRs memory problems?
b. When was CRs illness first diagnosed?
c. When did CG being assisting CR because of this illness?
2. How long have you been providing care for this individual?
Less than 6 months
More than 5 years
6 to 11 months
Dont know
1 to 3 years
Chose not to answer
3 to 5 years
3. How long have you been providing care?
Months_____ Years_____
Source
The Benjamin Rose Institute on Aging,
Margaret Blenkner Research Institute,
Cleveland, OH
4. How many hours/week do YOU provide assistance, care, supervision or companionship to CR?
Pennsylvania CMI
1
2
This scale is part of a larger instrument: Care Recipient Impairment. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Family Caregiving Factors Inventory. See also Multidimensional Measures at the end of this inventory.
Source
d. Knowledge of
Care
3
Recipient
4. Family Caregiving
Inventory:
a. Mutuality
4
Scale
5. Instrumental
Activities of Daily
Living
# of
items
10
Item responses
5-point scale, responses
range from: very poor to
very well
Archbold et al.,
1990; 1992
15
Shyu, 2000
Reliability
Validity
Description
.91
content,
construct
.91
NA
.85 (interrater
reliability)
NA
(Cronbachs alpha)
This scale is part of a larger instrument: Family Caregiving Factors Inventory. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Family Caregiving Inventory. See also Multidimensional Measures at the end of this inventory.
5,7
6
This scale is part of a larger instrument: Care Recipient Impairment. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Unmet Needs. See also Multidimensional Measures at the end of this inventory.
Measure
Source
# of
items
110
Item responses
3. Caregiving
Hassles and
Uplifts Scale
Kinney &
Stephens,
1989a; Kinney &
Stephens,
1989b
4. Family Burden
Interview
5. Frequency of
Behavior
Problems Scale
Reliability
Validity
Description
.71-.90
NA
.87
NA
.87
NA
Morycz, 1985
15
Neiderehe &
Fruge, 1984
28
Kaufer et al.,
1998
10
(Cronbachs alpha)
This scale is part of a larger instrument: Cost of Care Index. See also Multidimensional Measures at the end of this inventory.
Source
3. Decision Making
Involvement Scale
(DMI)
Feinberg &
Whitlatch, 2002
Item responses
Reliability
Validity
Description
NA
(Cronbachs alpha)
4-point scale,
responses range from:
not at all involved to very
involved
Care
recipient=
.79
Caregiver=
.86
.68
2-point scale:
0 = unrealistic or
1 = realistic
5. Share Care
Sebern, 2005;
Instrument-3
Sebern, 2008
(SCI-3) CG version:
b. Decision
10
Making
.72
construct
Wolfson et al.,
1993
NA
NA
4. Family Caregiving
Factors Inventory:
b. Caregiver Self9
Expectations
6. Visual Analogue
Scale
Shyu, 2000
# of
items
15
content,
construct
No financial
Enough financial
assistance __________assistance to
at all
cover all expenses
No emotional
As much emotional
support at _________support as needed
all
No physical
As much physical
assistance __________assistance as
at all
needed
9
This scale is part of a larger instrument: Family Caregiving Factors Inventory. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Shared Care Instrument-3. See also Multidimensional Measures at the end of this inventory.
10
Source
7. Willingness to
Care Scale
# of
items
30
Item responses
Reliability
.92
III. CAREGIVER VALUES AND PREFERENCES: Perceived Filial Obligations to Provide Care
1. Caregiver
Lawton et al.,
4
5-point scale, responses
NA
Appraisal
1989
range from: strongly
Measure:
agree to strongly
e. Caregiving
disagree
11
Ideology
2. Family Conflict
Semple, 1992;
8
4-point scale, responses
.90
Gaugler et al.,
range from: no
1999
disagreement to quite a
bit
III. CAREGIVER VALUES AND PREFERENCES: Culturally Based Norms
1. Cultural
Dilworth10
4-point scale, responses
.84 - .94
Justifications
Anderson, 1996
range from: strongly
Scale
agree to strongly
disagree
11
Validity
Description
content,
factorial
NA
(Cronbachs alpha)
NA
NA
This scale is part of a larger instrument: Caregiver Appraisal Measure. See also Multidimensional Measures at the end of this inventory.
2. Desire to
Institutionalize
Morycz, 1985;
Pearlin et al.,
1990; Pruchno
et al., 1990
2-point scale:
yes or no
.71 - .82
NA
3. Factors
Influencing
Placement
Decision
Aneshensel et
al., 1995;
Feinberg &
Whitlatch, 1995
19
NA
NA
4. Preferences for
Care Tasks
Feinberg &
Whitlatch, 2002
19
NAP
content
5. Preferences for
Everyday Living
Inventory (PELI)
Carpenter et al.,
2006
48
NA
NA
10
Description
Measures 5 dimensions of attitudes
toward community services including:
concern for opinions of others; confidence
in service system; preference for informal
care; belief in caregiver independence;
and acceptance of government services.
Items include statements such as: My
family would think less of me if I used
services for my relatives care and I
would rather use community services than
ask for help from family.
Measures the desire to institutionalize by
asking: Has caregiver: ever considered a
nursing or boarding home, ever felt care
recipient would be better off in a nursing
or boarding home, ever discussed
institutionalization with family or
others[or] with the care recipient, be
likely to move care recipient, or take
steps toward placement?
Measures the reasons a caregiver
decides to move their relative to a care
facility, such as caregivers exhaustion or
physical and mental health, or care
recipients behavior.
Measures care recipients care
preferences, caregivers preferences for
care recipients care, and caregiver
perceptions of care recipients care
preferences, related to 19 care tasks (e.g.,
taking medications, grocery shopping,
bathing, and eating meals).
Measures care recipients preferences for
how they wish to live their daily lives in the
following domains: social contact, growth
activities, leisure activities, self dominion,
support aids, and caregiver care.
Reliability
Validity
Description
NA
NA
.85
construct,
content
(Cronbachs alpha)
3. General Health
Survey
Questionnaire,
Short Form 12
(SF-12)
Ware et al.,
1993; 1996
12
.63-.91
construct,
content
4. General Health
Survey
Questionnaire,
Short Form 36
(SF-36)
Ware et al.,
1993;
Ware et al.,
1996; Ware,
1999
36
.67-.94
construct,
content
5. Perceived Health
Index
Deimling &
Bass, 1986a
NA
NA
12
This scale is part of a larger instrument: Caregiver Well-Being. See also Multidimensional Measures at the end of this inventory.
11
13, 14
Validity
Description
construct
NA
NA
construct
This scale is part of a larger instrument: Aspects of the Caregiving Role. See also Multidimensional Measures at the end of this inventory.
12
Source
# of
items
21
Item responses
Reliability
Validity
Description
.58-.93
concurrent
(Cronbachs alpha)
2. Becks
Depression
Inventory (BDI)
Beck et al.,
1961; 1979
3. Brief Symptom
Inventory
Derogatis &
Melisaratos,
1983
53
.84-.87
construct,
criterion
4. Brief Symptom
Inventory - 18
Derogatis &
Savitz, 1999
18
NA
NA
Zarit &
Whitlatch, 1992
.86
NA
Zarit &
Whitlatch, 1992
.78
NA
c. Anxiety
Zarit &
Whitlatch, 1992
.80
NA
d. Anger
Zarit &
Whitlatch, 1992
.81
NA
13
George &
Gwyther, 1986
# of
items
4 indicators
7. Center for
Epidemiological
Studies
Depression Scale
(CES-D)
20
.90
construct
8. Center for
Epidemiological
Studies
Depression Scale
(CES-D Short
Version)
Kohout et al.,
1993
11
2-point scale:
yes or no
.83
construct
9. Geriatric
Depression
Scale
(Long Form)
Brink et al.,
1982; Yesavage
et al., 1983
30
2-point scale:
yes or no
.94
discriminant,
concurrent
15
Source
Item responses
NA
Reliability
Validity
Description
Psychiatric
symptoms:
.85;
Affect:
.89
NA
(Cronbachs alpha)
This scale is part of a larger instrument: Caregiver Well-Being. See also Multidimensional Measures at the end of this inventory.
14
Source
# of
items
15
Item responses
2-point scale:
yes or no
Reliability
Validity
Description
NA
NA
(Cronbachs alpha)
10. Geriatric
Depression
Scale
(Short Form)
Sheikh &
Yesavage,1986
11. MontgomeryAsberg
Depression Rating
Scale (MADRS)
Montgomery &
Asberg, 1979
10
.77
NA
Cohen et al.,
1983
14
.84 - .86
concurrent,
predictive
Weisman &
Worden, 1977;
Oberst et al.,
1988
13
.84 - .93
NA
20
2-point scale:
yes or no
.83-.87
NA
15
3. Caregiver WellBeing:
d. Social
17
participation
George &
Gwyther, 1986
Tebb, 1995
22
Tebb, 1995
23
b. Activities of
19
Living
Validity
Description
0.77-0.79
construct
.77
criterion
Number of visits/phone
contacts with
family/friends; frequency of
club/church attendance;
time spent engaged in
hobbies/relaxing; satisfaction with social activities
7-point scale reflecting
satisfaction with basic
needs
.79
NA
.91
construct,
criterion
.81
construct,
criterion
16
Reliability
(Cronbachs alpha)
This scale is part of a larger instrument: Aspects of the Caregiving Role. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Caregiver Well-Being. See also Multidimensional Measures at the end of this inventory.
18, 19
This scale is part of a larger instrument: Caregiver Well-Being Scale. See also Multidimensional Measures at the end of this inventory.
17
16
Source
5. Health-related
Quality of Life
(HRQOL) (as
measured by the
SF-36)
Ware et al.,
1993; Ware,
1999; Hughes et
al., 1999
6. Quality of Life in
Alzheimers
Disease Scale
(QOL-AD)
Logsdon et al.,
1999
# of
items
36
13
Item responses
Reliability
2. Caregiver Strain
Instrument:
a. Restrictions in
Caregivers
21
Activities
20
21
Validity
Description
0.63-0.94
content,
construct
.87
NA
.81
construct
.80
NA
(Cronbachs alpha)
This scale is part of a larger instrument: Caregiver Reaction Assessment. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Caregiver Strain Instrument. See also Multidimensional Measures at the end of this inventory.
17
Source
# of
items
4
Item responses
Reliability
Validity
Description
.91
NA
(Cronbachs alpha)
3. Cost of Care
Index
b. Personal and
Social
22
Restrictions
4. Leisure Time
Satisfaction (LTS)
Stevens et al.,
2004
.80
convergent
5. Mental Health
Effects
c. Social Change
23
Index
6. Sense of
Competence
Questionnaire
c. Consequences
of Involvement
in Care for the
Personal Life of
24
the Caregiver
7. Social Isolation
Pruchno &
Resch, 1989a
13
.78
NA
Scholte op
Reimer et al.,
1998
.62 - .70
construct
Deimling &
Bass, 1986b;
Bass et al.,
1996
.85
NA
8. Time Constraints
Scale
Braithwaite,
2000
NA
.79
NA
22
This scale is part of a larger instrument: Cost of Care Index. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Mental Health Effects. See also Multidimensional Measures at the end of this inventory.
24
This scale is part of a larger instrument: Sense of Competence Questionnaire. See also Multidimensional Measures at the end of this inventory.
23
18
Reliability
Validity
Description
.75
NA
.79 (W-C
Conflict)
construct
(Cronbachs alpha)
2. Work-Caregiving
Conflict and
Caregiving-Work
Conflict
Netemeyer et
al., 1996;
Carlson &
Frone, 2003
20
3. Work Emotional
Exhaustion Scale
Gordon et al.,
2012;
Maslach &
Jackson, 1986;
.89
NA
4. Work-Family
Conflict
Kelloway et al.,
1999
22
.75-.83 (WIF)
NA
NA
5. Work Productivity
and Activity
Impairmentmodfied (WPAI:CG)
Giovannetti et
al., 2009
19
.73 (C-W
Conflict)
.75.85 (FIW)
construct
Reliability
Validity
Description
construct
(Cronbachs alpha)
Satisfaction=
.65-.71;
Resentment=
.69-.75;
Anger=.68-.71
26
Schofield et al.,
1997; Pearlin et
al., 1990
2. Caregiver
Appraisal
Measure:
b. Impact of
27
Caregiving
a. Subjective
Caregiving
28
Burden
Lawton et al.,
1989
Lawton et al.,
1989
13
3. Caregiver
Burden
Inventory
a. Time depen29
dence burden
e. Overload
.69-.73
construct
.70
construct
5-point scale,
responses range from:
strongly agree to
strongly disagree or from
never to nearly always
5-point scale, responses
range from: not at all
descriptive to very
descriptive
.85
construct
.85
construct
25, 26
This scale is part of a larger instrument: Aspects of the Caregiving Role. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Caregiver Appraisal Measure. See also Multidimensional Measures at the end of this inventory.
29
This scale is part of a larger instrument: Caregiver Burden Inventory. See also Multidimensional Measures at the end of this inventory.
27, 28
20
Source
# of
items
5
Item responses
Reliability
Validity
Description
.85 - .87
construct
(Cronbachs alpha)
b. Developmental
30
burden
c. Physical
31
burden
.86
construct
d. Social
32
burden
.69 - .73
construct
e. Emotional
33
burden
.77 - .81
construct
4. Caregiver Burden
Measure
Montgomery et
al., 1985a;
Montgomery et
al.,
2011
Gerritsen & van
der Ende, 1994
16
.86-.90
construct
.84
construct
5. Caregiving Burden
Scale
13
This scale is part of a larger instrument: Caregiver Burden Inventory. See also Multidimensional Measures at the end of this inventory.
21
Source
# of
items
8
Item responses
Reliability
Validity
Description
NA
NA
(Cronbachs alpha)
6. Caregiver
Distress
Activities
Pearlin et al.,
1990
7. Care-related
Strain
Whitlatch et al.,
2001
.90
NA
8. Family Strain
Scale
Morycz, 1985
14
.77
construct
9. Filial Anxiety
Scale
Cicirelli, V.G.
1988
13
.77-.88
construct
Elmstahl et al.,
1996
NA
NA
22
Source
# of
items
5
Item responses
Reliability
Validity
Description
.68 - .74
NA
(Cronbachs alpha)
11. Guilt
Mullan, 1992;
Aneshensel et
al., 1995
.79
NA
.76
NA
14. Measures of
Strain
a. Appraised
difficulty of
34
caregiving
Bass &
Bowman, 1990;
Bass et al.,
1991
.67
NA
Bass &
Bowman, 1990;
Bass et al.,
1991
2-point scale:
yes or no
.66
NA
b. Negative
consequences
35
of caregiving
34, 35
This scale is part of a larger instrument: Measures of Strain. See also Multidimensional Measures at the end of this inventory.
23
Source
# of
items
1
Item responses
Reliability
Validity
Description
NAP
NA
(Cronbachs alpha)
Pruchno &
Resch, 1989a
Pruchno &
Resch, 1989a
17
.89
NA
16. Modified
Caregiver Strain
Index
Thornton &
Travis, 2003;
Robinson, B.,
1983
13
.90
NA
17. Negative
Perception of
Care Situation
Noelker &
Townsend, 1987
.77
NA
18. Novel
Caregiver
Burden
Elmstahl et al.,
1996
20
Strain =.87
Isolation =.70
Disappointment=.76
Emotional
involvement
=.70
construct
36, 37
This scale is part of a larger instrument: Mental Health Effects. See also Multidimensional Measures at the end of this inventory.
24
Source
# of
items
15
Item responses
2-point scale:
yes or no
Possible scores range
from 0-15.
Reliability
Validity
Description
.87
construct
(Cronbachs alpha)
19. Perceived
Burden Measure
Macera et al.,
1993
Poulshock &
Deimling, 1984;
Moss et al.,
1987;
Strawbridge &
Wallhagen,
1991
Pearlin et al.,
1990; Zarit &
Whitlatch, 1992;
Aneshensel et
al., 1995
22
.94
NA
.83
construct
Pearlin et al.,
1990; Zarit &
Whitlatch, 1992;
Aneshensel et
al., 1995
.78
construct
21. Role
Captivity
25
Source
Item responses
Reliability
Validity
Description
construct,
criterion
.82
NA
.88 - 91
construct;
correlated with
a single global
burden rating
(r=.71)
Correlations
between the
screening and
full versions:
0.83-0.93
(Cronbachs alpha)
objective
burden=.85
.78
.88
Correlations
between the
short and full
versions:
.92 -.97
.80
construct
Vitaliano et al.,
1991
# of
items
25
24. Tension
Zarit &
Whitlatch, 1992
22
Zarit et al.,
1980; Bdard et
al., 2001
Zarit et
al.,1980;Bdard
et al., 2001
12
38
subjective
burden= .88
This scale is part of a larger instrument: Caregiver Reaction Measure. See also Multidimensional Measures at the end of this inventory.
26
Source
# of
items
5
Item responses
Reliability
Validity
Description
NA
NA
(Cronbachs alpha)
2. Caregiver Strain
Instrument:
39
b. Health Strain
Bass et al.
1994b; Bass et
al., 1996
3. Caregiver
Subjective
Physical Health
Whitlatch et al.,
1999
.82
NA
4. Cost of Care
Index
c. Physical and
Emotional
40
Health
.91
NA
5. Eldercare Strain
Zacher &
Winter, 2011;
Slutier et al.,
2003
.91
construct
39
40
This scale is part of a larger instrument: Caregiver Strain Instrument. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Cost of Care Index. See also Multidimensional Measures at the end of this inventory.
27
Source
# of
items
5
Item responses
Reliability
Deimling &
4-point scale, responses
Bass, 1986b;
range from: strongly
Bass et al.,
agree to strongly
1988; Bass et
disagree
al., 1996
V. CONSEQUENCES: Perceived Challenges Grief/Loss
1. Bereavement
Bass et al.,
6
2-point scale:
Consequences
1991
yes or no
6. Physical Health
Deterioration
2. Finding Meaning
Through
Caregiving:
a. Loss/
Powerless41
ness
3. Grief Scale
41
Validity
Description
.89
NA
.72
NA
(Cronbachs alpha)
Farran et al.,
1991
19
.88 - .89
convergent,
discriminant
10
.86
NA
This scale is part of a larger instrument: Finding Meaning Through Caregiving. See also Multidimensional Measures at the end of this inventory.
28
Source
4. Loss of Intimate
Exchange
Pearlin et al.,
1990;
Aneshensel et
al., 1995
5. Personal
Bereavement
Difficulties
Bass &
Bowman, 1990;
Bass et al.,
1991
Pearlin et al.,
1990
6. Relational
Deprivation
# of
items
3
Item responses
Reliability
Validity
Description
.76
NA
2-point scale:
yes or no
.72
NA
.67 - .77
NA
.83
construct
Subjective
assessment=
.85
NA
(Cronbachs alpha)
42
43
George &
Gwyther, 1986
Single-item measure of
household income:
measure of perceived
economic status
This scale is part of a larger instrument: Caregiver Reaction Assessment. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Caregiver Well-Being. See also Multidimensional Measures at the end of this inventory
29
Source
3. Cost of Care
Index
d. Economic
44
Costs
4. Economic Strains
Pearlin et al.,
1990;
Aneshensel et
al., 1995
5. Financial Impact
Scale
Todtman &
Gustafson, 1991
# of
items
4
Item responses
4-point scale, responses
range from: strongly
disagree to strongly
agree
20
Reliability
44
45
Validity
Description
.91
NA
NA
NA
.91
concurrent
Closeness=
.68 - .73
Conflict=
.70 - .75
construct
(Cronbachs alpha)
This scale is part of a larger instrument: Cost of Care Index. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Aspects of the Caregiving Role. See also Multidimensional Measures at the end of this inventory.
30
Measure
Source
# of
items
5
Item responses
Reliability
Validity
Description
.62
construct
NA
NA
.90
NA
(Cronbachs alpha)
2. Caregiver
Reaction
Assessment:
c. Lack of Family
46
Support
Given et al.,
1992
3. Caregiver Strain
Instrument:
c. Relationship
47
Strain
4. Closeness of the
Relationship
Bass et al.,
1994b; Bass et
el., 1996
Whitlatch et al.,
2001
5.
Cost of Care
Index:
e. Perception of
the Care
Recipient as a
48
Provocateur
.91
NA
6. Dyadic
Adjustment Scale
(DAS)
Spanier, 1977;
Bagarozzi, 1985
32
NA
NA
46
This scale is part of a larger instrument: Caregiver Reaction Assessment. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Caregiver Strain Instrument. See also Multidimensional Measures at the end of this inventory.
48
This scale is part of a larger instrument: Cost of Care Index. See also Multidimensional Measures at the end of this inventory.
47
31
Source
# of
items
11
Item responses
Reliability
Validity
Description
.85
content,
contruct
(Cronbachs alpha)
7. Dyadic
Relationship Scale
Sebern &
Whitlatch, 2007
8. Dyadic
Relationship
Strain
Bass et al.,
1994b; Bass et
al., 1999;
Feinberg et al.,
2000
.86 - .93
NA
9. Family
Bereavement
Difficulties
Bass &
Bowman, 1990;
Bass et al.,
1991
2-point scale:
yes or no
.64
NA
Clark et al.,
2003
15
.93
construct
Pearlin et al.,
1990; Semple,
1992;
Aneshensel et
al., 1993
12
.80 - .86
NA
32
Source
# of
items
20
Item responses
Reliability
Validity
Description
.82
construct,
concurrent
(Cronbachs alpha)
12. Family
Hardiness
Index
McCubbin et al.,
1987
13. Family
Relationship
Strain
Bass et al.,
1988;
Feinberg et al.,
2000
.65
NA
Parker, 1978;
Braithwaite,
2000
.84
NA
.76
NA
16. Measures of
Strain:
c. Perceptions of
Negative
Consequences
of Caregiving
49
on the Family
Bass &
Bowman, 1990;
Bass et al.,
1991
2-point scale:
yes or no
.96
NA
49
This scale is part of a larger instrument: Measures of Strain. See also Multidimensional Measures at the end of this inventory.
33
Source
Measure
# of
items
4
Item responses
4-point scale, responses
range from: not at all
close/well/similar to very
close/well/similar
Lawrence et al.,
1998
Sebern, 2005;
Sebern, 2008
Sebern, 2005;
Sebern, 2008
Goodman, 1991
Reliability
Validity
Description
.85
NA
.76
construct
.78
construct
.72
NA
(Cronbachs alpha)
50, 51
NA
This scale is part of a larger instrument: Shared Care Instrument-3. See also Multidimensional Measures at the end of this inventory.
34
Source
# of
items
6items;
5items;
4-items
Item responses
Reliability
Validity
Description
Satisfaction=
.65 - .71;
Resentment=
.69 - .75;
Anger=
.68 - .71
construct
(Cronbachs alpha)
2. Aspects of the
Caregiving Role:
g. Caring Role
52
Satisfaction
Schofield et al.,
1997
3. Caregiver
Appraisal
Measure:
c. Caregiving
53
Satisfaction
Lawton et al.,
1989
.67 - .76
construct
4. Caregiver
Reaction
Assessment:
e. Caregiver
54
Esteem
Given et al.,
1992
.90
construct
5. Caregiving
Satisfaction
Scale
Strawbridge,
1991
15
.90
NA
6. Care Work
Satisfaction Scale
Orbell et al.,
1993
.92
NA
7. Picot Caregiver
Rewards Scale
Picot et al.,
1997a; 1997b
24
.86
construct
52
This scale is part of a larger instrument: Aspects of the Caregiving Role. See also Multidimensional Measures at the end of this inventory
This scale is part of a larger instrument: Caregiver Appraisal Measure. See also Multidimensional Measures at the end of this inventory.
54
This scale is part of a larger instrument: Caregiver Reaction Assessment. See also Multidimensional Measures at the end of this inventory.
53
35
Source
# of
items
12
Item responses
Reliability
Validity
Description
.87
NA
(Cronbachs alpha)
Stephens,
Franks, &
Townsend, 1994
9. Sense of
Competence
Questionnaire
a. Satisfaction
With.as a
Recipient of
55
Care
10. Social Interaction
Measure
Scholte op
Reimer et al.,
1998
.70 - .80
construct
Bass et al.,
1994b
.74
NA
Pruchno et al.,
1990
55
56
NA
convergent,
discriminant
This scale is part of a larger instrument: Sense of Competence Questionnaire. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Finding Meaning Through Caregiving Scale. See also Multidimensional Measures at the end of this inventory.
36
Source
Item responses
Reliability
Validity
Description
(Cronbachs alpha)
57
Pearlin et al.,
1990; Skaff &
Pearlin, 1992
# of
items
4
.68 - .81
NA
This scale is part of a larger instrument: Caregiving Appraisal Measure. See also Multidimensional Measures at the end of this inventory.
37
Source
# of
items
4
Item responses
Reliability
Validity
Description
NA
NA
(Cronbachs alpha)
5. Caregiver Strain
Instrument:
d. Caregiver
58
Mastery
Bass et al.,
1994b; Bass et
al., 1996
6. Caregiving
Effectiveness
Noelker &
Townsend, 1987
.64
NA
7. Family Caregiving
Factors Inventory
a. Caregiving
59
Resources
Shyu, 2000
17
.79
NA
8. Family Caregiving
Inventory:
b. Preparedness
for Caregiving
60
Scale
Archbold et al.,
1990; 1992
.71
NA
58
This scale is part of a larger instrument: Caregiver Strain Instrument. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Family Caregiving Factors Inventory. See also Multidimensional Measures at the end of this inventory.
60
This scale is part of a larger instrument: Family Caregiving Inventory. See also Multidimensional Measures at the end of this inventory.
59
38
Source
# of
items
7
Item responses
Reliability
Validity
Description
.75 - .79
NA
(Cronbachs alpha)
9. Mastery
Pearlin &
Schooler, 1978;
Mullan, 1992;
Aneshensel et
al., 1995
Zeiss, et al.,
1999;
Steffen et al.,
2002
51
Rating of 0% 100% is
assigned for each item
.74 - .85
construct
15
.90
NA
Rosenberg,
1962;
Bakas &
Champion, 1999
Scholte op
Reimer et al.,
1998
10
.84
convergent,
discriminant
.71 - .77
construct
13. Sense of
Competence
Questionnaire:
b. Satisfaction
With Ones
Own
Performance
as a
61
Caregiver
61
12
This scale is part of a larger instrument: Sense of Competence Questionnaire. See also Multidimensional Measures at the end of this inventory.
39
Source
Item responses
Reliability
Validity
Description
(Cronbachs alpha)
62
Gitlin et al.,
2002
# of
items
19
.74-.81
construct
This scale is part of a larger instrument: Unmet Needs. See also Multidimensional Measures at the end of this inventory.
40
Source
Pound et al.,
1993
# of
items
9
Item responses
Reliability
Validity
Description
construct
(Cronbachs alpha)
Carer
Hospsat=
.87
Carer
Homesat=
.79
3. Helping Network
Composition
Bass et al.,
1991; Bass et
al., 1999
16
NA
NA
4. Negative
Service
Attitudes
Bass et al.,
1994a
.66 - .67
NA
5. Negative Service
Experiences
Bass et al.,
1994a
11
.66-.84
NA
41
Source
6. Service Use:
Formal and
Informal
Feinberg et al.,
2000;Whitlatch,
2002
# of
items
6
Item responses
Reliability
Validity
Description
NAP
NA
.92
structural
(Cronbachs alpha)
2-point scale:
yes or no;
3-point scale:
family/friend, volunteer,
or paid helper;
3-point scale: yes,
definitely, perhaps would
use, and no, definitely
not
2-point scale:
yes or no
7. Unmet Needs:
c. Accessing
Services
63
Scale
Bass et al.,
2003; Bass et
al., 2012
d. Daily Task
64
Scale
Bass et al.,
2003; Bass et
al., 2012
2-point scale:
yes or no
.92
structural
e. Organizing
65
Family Care
Bass et al.,
2003; Bass et
al., 2012
2-point scale:
yes or no
.92
structural
63, 64, 65
This scale is part of a larger instrument: Unmet Needs. See also Multidimensional Measures at the end of this inventory.
42
66
67
This scale is part of a larger instrument: Aspects of the Caregiving Role. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Unmet Needs. See also Multidimensional Measures at the end of this inventory.
43
This scale is part of a larger instrument: Appraisal of Caregiving. See also Multidimensional Measures at the end of this inventory.
44
Source
# of
items
48
Item responses
Reliability
Validity
Description
.57 - .79
content
(Cronbachs alpha)
4. Coping Strategies
Inventory
Quayhagen &
Quayhagen,
1982; 1988
5. Finding Meaning
Through
Caregiving Scale:
c. Ultimate
71
Meaning
6. Inventory of
Coping Strategies
Farran et al.,
1991
.91- .95
convergent,
discriminant
Kiyak et al.,
1985; Pruchno
& Resch, 1989b
16
.61 - .73
construct
7. Jalowiec
Coping
Scale
Jalowiec et al.,
1984; Pierce et
al., 1989
40
.86
content,
construct
8. Reinter-pretation
and
Acceptance
Braithwaite,
2000
12
4-point scale
.87
NA
9. Religiosity
Taylor &
Chatters, 1986
15
.78 - .90
NA
71
This scale is part of a larger instrument: Finding Meaning Through Caregiving Scale. See also Multidimensional Measures at the end of this inventory.
45
Source
Item responses
Reliability
Validity
Description
(Cronbachs alpha)
72
73
Hays et al.,
2001
# of
items
23
.57 - .95
construct,
convergent
This scale is part of a larger instrument: Unmet Needs. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Nursing Home Stressors. See also Multidimensional Measures at the end of this inventory.
46
Source
# of
items
5
Item responses
Reliability
Validity
Description
.76
NA
(Cronbachs alpha)
b. Nursing
assistants
support for
74
families
Whitlatch et al.,
2001
c. Measures of
positive and
negative
75
interactions
Whitlatch et al.,
2001
10
.65-.80
NA
Bass et al.,
2003; Bass et
al., 2012
2-point scale:
yes or no
.92
structural
2. Unmet Needs:
h. Alternate
Living
Arrangements
76
Scale
74, 75
76
This scale is part of a larger instrument: Nursing Home Stressors. See also Multidimensional Measures at the end of this inventory.
This scale is part of a larger instrument: Unmet Needs. See also Multidimensional Measures at the end of this inventory.
47
Source
Folkman & Lazarus, 1986;
Pakenham, 2007
8. Caregiver Well-Being
48
Subscales
a. Stress
b. Challenge
c. Controllability
a. Life Satisfaction Scale
b. Positive and Negative Affect Scales
c. Health
d. Social Support
e. Overload
f. Family Environment
g. Caring Role Satisfaction
h. Resentment and Anger
a. Subjective Caregiving Burden
b. Impact of Caregiving
c. Caregiving Satisfaction
d. Caregiving Mastery
e. Caregiving Ideology
a. Time dependence burden
b. Developmental burden
c. Physical burden
d. Social burden
e. Emotional Burden
a. Disrupted Schedule
b. Financial Problems
c. Lack of Family Support
d. Health Problems
e. Caregiver Esteem
a. Physical Disability
b. Cognitive Impairment
c. Problem Behaviors
# of Items
1
5
3
6
20
5
7
3
6
15
15
13
9
9
12
4
5
5
4
5
4
5
3
5
4
7
7
6
6
Page #
44
44
44
16
12
12
43
20
30
35
20
20
20
35
37
9
20
21
21
21
21
17
29
31
26
35
3
5
5
5
5
5
4
2
4
7
2
17
27
31
38
11
14
29
16
Source
Tebb, 1995
Shyu, 2000
77
This scale is not included within this document. It contains 9 subscales and 78 items.
49
Subscales
a. Basic Needs
b. Activities of Living
a. Low affect scale
b. Cognitive depression
c. Anxiety
d. Anger
a. Value investment in caregiving
b. Personal and social restrictions
c. Physical and emotional health
d. Economic Costs
e. Perception of the Care Recipient as a
Provocateur
a. Caregiving Resources
b. Caregiver Self-Expectations
c. Caregiving Task Difficulty
d. Knowledge of the Care Recipient
a. Preparedness for Caregiving
b. Mutuality
77
c. Strain
a. Loss/Powerlessness
b. Provisional Meaning
c. Ultimate Meaning
a. Appraised difficulty of caregiving
b. Negative consequences of caregiving
c. Perceptions of Negative
Consequences of Caregiving on the
Family
a. Perceived Burden
b. Consequences of Caring
c. Social Change Index
a. Nursing assistants communication
with residents family
b. Nursing assistants support for families
c. Measures of positive and negative
interactions
# of Items
22
23
7
6
4
4
4
4
4
4
4
Page #
16
16
13
13
13
13
7
18
27
30
31
17
9
6
10
5
15
78
19
19
5
3
3
2
38
8
3
4
38
4
n/a
28
36
45
23
23
33
1
17
13
6
24
24
18
46
5
10
47
47
Source
Scholte op Reimer et al., 1998
50
Subscales
a. Satisfaction With as a Recipient of
Care
b. Satisfaction With Ones Own
Performance as a Caregiver
c. Consequences of Involvement for the
Personal Life of the Caregiver
a. Communication
b. Decision Making
c. Reciprocity
a. Understanding Memory Problems
b. Medical Follow-up and Medications
Scale
c. Accessing Services Scale
d. Daily Task Scale
e. Organizing Family Care
f. Emotional Support Scale
g. Legal and Financial Issues
h. Alternate Living Arrangements Scale
# of Items
7
Page #
36
12
39
18
5
6
8
7
6
34
8
34
5
40
6
4
6
4
4
3
42
42
42
43
46
47
Subject Index
Activities and tasks..3, 4, 16
Attitudes about institutional settings/placement....10, 47
Attitudes toward assuming/receiving care.7, 8, 9
Burden.6, 20, 21, 24, 25, 26
Care Recipient Functional Level and its impact on caregiver....3, 4, 5, 6
Coping...44, 45, 46
Cultural/religious beliefs.....9
Decision making.7, 10, 44
Formal/Informal Support .40, 41, 42
Grief............................................................................................................................28, 29
Guilt..................................................................................................................................23
Knowledge..4, 37, 40
Living Arrangements.1, 33, 47
Mastery.....37, 38, 39
Mental Health:
Affect/Mood...12, 13
Anger.13, 20
Anxiety...13, 22
Depression............13, 14, 15
Self-esteem..35, 39
Well-being.11, 12, 13, 14,15, 16 ,17, 29
Pain........7
Perception of quality of care...............................40, 41, 42
Physical Health.........................................................................................11, 17, 26, 27, 28
Quality of Life..............................................................................................................16, 17
Religiosity..........................................................................................................................45
Rewards......................................................................................................................35, 36
Satisfaction...................................................................................16, 18, 34, 35, 36, 39, 41
Self-efficacy / competency............................................................................................7, 39
Social Support..................................................................................................................43
Strain/stress:
Emotional Health.............................................................20, 21, 22, 23, 24, 25, 26
Family..............................................................................19, 22, 30, 31, 32, 33, 34
Financial..............................................................................................1, 29, 30, 46
Relationship- between caregiver and care recipient......................1, 31, 32, 33, 34
Social...........................................................................................16, 17, 18, 21, 34
Work-related........................................................................................................19
References
Major References Used To Compile Inventory
Aneshensel, C.S., Pearlin, L.I., Mullan, J.T., Zarit, S.H., & Whitlatch, C.J. (1995). Profiles in caregiving:
The unexpected career. San Diego, CA: Academic Press.
Antonucci, T.C., Sherman, A.M., & Vandewater, E.A. (1997). Measures of social support and caregiver
burden. Generations, Spring, 48-51.
Bass, D.M. (2001). Content and Implementation of a Caregiver Assessment. National Family Caregiver
Support Program Issue Brief: Administration on Aging.
Deimling, G.T. (1994). Caregiver functioning. In M.P. Lawton & J.A. Teresi (Eds.), Annual review of
gerontology and geriatrics: focus on assessment techniques (pp. 257- 280). New York, NY:
Springer Publishing Company.
Family Caregiver Alliance. (2006). Caregiver assessment: Principles, guidelines and strategies for change
Volume I. Family Caregiver Alliance, National Center on Caregiving; San Francisco, CA.
Feinberg, L. & Houser, A. (2012). Assessing family caregiver needs: Policy and practice considerations.
AARP Public Policy Institute, Washington, DC.
Gaugler, J.E., Kane, R.A., & Langlois, J. (2000). Assessment of family caregivers of older adults. In R.L.
Kane & R.A. Kane (Eds.), Assessing older persons: measures, meaning and practical
applications (pp. 320-359). New York, NY: Oxford University Press.
Judge, K.S. et al. (2011). Partners in dementia care: A care coordination intervention for individuals with
dementia and their family caregivers. The Gerontologist, 51 (2), 261-272.
Kinsella, G., Cooper, B., Picton, C., & Murtagh, D. (1998). A review of the measurement of caregiver and
family burden in palliative care. Journal of Palliative Care, 14, 37-45.
Kramer, B.J. (1997). Gain in the caregiving experience: Where are we? What next? The Gerontologist,
37, 218-232.
Kramer, B.J., & Vitaliano, P.P. (1994). Coping: a review of the theoretical frameworks and measures used
among caregivers of individuals with dementia. Journal of Gerontological Social Work, 23, 151174.
National Alliance for Caregiving and AARP (2004). Caregiving in the U.S.: Findings From the National
Caregiver Survey (2004) , Washington, DC.
National Alliance for Caregiving and AARP (2009). Caregiving in the U.S. 2009, Washington, DC.
Roach, MJ., & Welch, L.C. (2000). Caregiver well-being. In TIME: Toolkit of instruments to measure endof-life care. Brown University. http://www.chcr.brown.edu/PCOC/familyburden.htm
Roach, MJ. (n.d.). Caregiver and family burden. Center to Improve Care of the Dying: George
Washington University. http://www.gwu.edu/~cicd/toolkit/caregive.htm
Rubin, A. & Babbie, E. (2011). Essential Research Methods for Social Work (3rd ed.).
Pacific Grove, CA: Brooks/Cole Publishing Co.
ii
iii
Aneshensel, C.S., Pearlin, L.I., & Schuler, R.H. (1993). Stress, role captivity, and the cessation
of caregiving. Journal of Health and Social Behavior, 34, 54-70.
19, 32
Archbold, P., Stewart, B., Greenlick, M.R., & Harvath, T. (1990). Mutuality and preparedness as
predictors of caregiver role strain. Research in Nursing and Health. 13, 375-384.
4, 38
Archbold, P.G., Stewart, B.J., Greenlick, M.R., & Harvath, T.A. (1992). The clinical assessment
of mutuality and preparedness in family caregivers to frail older people. In S.G. Funk,
E.M. Tornquist, M.T. Champagne, & L.A. Copp (Eds.), Key aspects of eldercare (pp.
328-339). New York, NY: Springer Publishing Company.
4, 38
Bagarozzi, D.A. (1985). Family measurement techniques: The Family Coping Strategies scale.
American Journal of Family Therapy, 13, 67-71.
31
Bakas, T., & Champion, V. (1999). Development and psychometric testing of the Bakas
Caregiving Outcomes Scale. Nursing Research, 48, 250-259.
Bandura, A. (1977). Social learning theory. Englewood Cliffs, NJ: Prentice Hall.
Bass, D.M., Bowman, K. (1990). The transition from caregiving to bereavement: the relationship
of care-related strain and adjustment to death. The Gerontologist, 30, 35-42.
16, 39
7
23, 29, 32, 33
Bass, D.M., Bowman, K., & Noelker, L.S. (1991). The influence of caregiving and bereavement
support on adjusting to an older relatives death. The Gerontologist, 31, 32-42.
Bass, D.M., Clark, P.A., Looman, W.J., McCarthy, C.A., & Eckert, S. (2003). The Cleveland
Alzheimers Managed Care Demonstration: Outcomes after 12 months of implementation.
The Gerontologist, 43(1), 73-85.
5, 40, 42,
43, 46, 47
Bass, D.M., Judge, K.S., Snow, L., Wilson, N., Looman, W., McCarthy, K., Morgan, R., &
Abloorh-Odjidja, C., Kunik, M. (2012). Negative caregiving effects among caregivers of
veterans with dementia. The American Journal of Geriatric Psychiatry, 20(3): 239-247.
5, 40, 42,
43, 46, 47
Bass, D.M., McCarthy, C., Eckert, S., Bichler, J. (1994a). Differences in service attitudes and
experiences among families using three types of support services. The American Journal
of Alzheimers Care and Related Disorders & Research, May/June.
Bass, D.M., McClendon, M.J., Deimling, G.T., & Mukherjee, S. (1994b). The influence of a
diagnosed mental impairment on family caregiver strain. Journal of Gerontology: Social
Sciences, 49, S146-S155.
Bass, D.M., Noelker, L.S., McCarthy, C.A. (1999). The influence of formal and informal helpers
on primary caregivers perceptions of quality of care. The Journal of Applied Gerontology,
18, 177-200.
iv
41
3, 5, 32, 41
17, 18, 27 ,
28, 31, 38 ,
28, 33 ,
13
Beck, A.T., Ward, C.H., Mendelson, M., Mock, J., & Erbaugh, J. (1961). An inventory for
measuring depression. Archives of General Psychiatry, 4, 561-571.
13
Bdard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J.A., & ODonnell, M. (2001).The Zarit
Burden Interview: a new short version and screening version. The Gerontologist, 41, 652657.
26
Bradburn, N.M. (1969). The structure of psychological well-being. Chicago, IL: Aldine.
Braithwaite, V. (1996). Understanding stress in informal caregiving: Is burden a problem of the
individual or of society? Research on Aging, 18, 139-174.
Braithwaite, V. (2000). Contextual or general stress outcomes: making choices through
caregiving appraisals. The Gerontologist 40, 706-717.
12
40, 44 ,
18, 33, 45 ,
Brink, T. L., et al. (1982). Screening tests for geriatric depression. Clinical Gerontologist, 1, 3743.
14
Carlson, D., & Frone, M. (2003). Relation of behavioral and psychological involvement to a
new four-factor conceptualization of work-family interference. Journal of Business &
Psychology, 17(4), 515-535.
19
Carpenter, B., Lee, M., Ruckdeschel, K., Van Haitsma, K. & Feldman, P. (2006). What would
your mother want? Adult children as informants about parents psychosocial preferences.
Family Relations, 55, 552-563.
10
Caserta, M.S., Lund, D.A., & Wright, S.D. (1996). Exploring the Caregiver Burden Inventory
(CBI): further evidence for a multidimensional view of burden. International Journal of
Aging and Human Development, 43, 21-34.
20, 21
Cicirelli, V.G. (1988). A measure of filial anxiety regarding anticipated care of elderly parents.
The Gerontologist, 28, 478-482.
22
Clark, P.C., Shield, C.G., Aycock, D., & Wolf, S.L. (2003). Preliminary reliability and validity of
a family caregiver conflict scale for stroke. Progress in Cardiovascular Nursing, Spring,
77-83.
32
Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress.
Journal of Health and Social Behavior, 24, 385-396.
15
Collins, C., Stommel, M., King, S., & Given, C.W. (1991). Assessment of the attitudes of family
caregivers toward community services. The Gerontologist, 31, 756-761.
10
11
15, 18, 26
Derogatis, L.R., & Melisaratos, N. (1983). The Brief Symptom Inventory: An introductory
report. Psychological Medicine, 13, 595-605.
13
Derogatis, L.R., & Savitz, K.L. (1999). The SCL-90-R, Brief Symptom Inventory, and Matching
Clinical Rating Scales. In: M.E. Maruish, (Ed.), The use of psychological testing for
treatment planning and outcomes assessment (2nd ed. Mahwah, NJ: Lawrence Erlbaum
Associates, Inc.
13
Dieckmann, L., Zarit, S.H., Zarit, J.M., & Gatz, M. (1988). The Alzheimers Disease knowledge
test.The Gerontologist, 28, 402-407.
37
Dilworth-Anderson, P, Marshall, S. (1996). Social support in its cultural context. In: Gregory R.
Pierce & Barbara R. Sarason (Eds.), Handbook of social support and the family. New
York, NY: Plenum Press.
Elmstahl, S., Malmberg, B., & Annerstedt, L. (1996). Caregivers burden of patients 3 years
after stroke assessed by a novel caregiver burden scale. Archives of Physical
Medicine and Rehabilitation, 77(2), 177-182.
22, 24
1, 2, 3, 12
Farran, C.J., Miller, B.H., Kaufman, J.E., Donner, E., & Fogg, L. (1991). Finding meaning
through caregiving: development of an instrument for family caregivers of persons with
Alzheimers Disease. Journal of Clinical Psychology, 55, 1107-1125.
28, 36, 45
Feinberg, L.F., & Whitlatch, C.J. (1995). Final Report: A study of pre- and post-placement
family caregiving for individuals with Alzheimers disease and related disorders. San
Francisco, CA: Family Caregiver Alliance.
10
Feinberg, L.F., & Whitlatch, C.J. (2001). Are persons with cognitive impairment able to state
consistent choices? The Gerontologist, 41, 374-382.
44
Feinberg, L.F., & Whitlatch, C.J. (2002). Decision-making for persons with cognitive
impairment and their family caregivers. American Journal of Alzheimers Disease and
Other Dementias, 17, 1-8.
Feinberg, L.F., Whitlatch, C.J., & Tucke, S. (2000). Final Report: Making hard choices:
respecting both voices. San Francisco, CA: Family Caregiver Alliance.
vi
8, 10
32, 33, 42
34
Flor, H., Behle, D. & Birbaumer, N. (1993). Assessment of pain-related cognitions in chronic
pain patients. Journal of Psychosomatic Research, 31, 251 259.
Flor, H., Turk, D., & Sholtz, B. (1987). Impact of chronic pain on the spouse: marital, emotional
and physical consequences. Journal of Psychosomatic Research, 31, 63 71.
Folkman, S., & Lazarus, R.S. (1986). An analysis of coping in a middle-aged community
sample. Journal of Healthand Social Behavior, 21, 219-225.
44
Fortinsky, R.H., & Hathaway, T.J. (1990). Information and service needs among active and
former family caregivers of persons with Alzheimers Disease. The Gerontologist, 30,
604-609.
44
Gaugler, J.E., Zarit, S.H., & Pearlin, L.I. (1999). Caregiving and institutionization: Perceptions
of family conflict and socioemotional support. International Journal of Aging & Human
Development, 49, 1-25.
George, L.K., & Gwyther, L.P. (1986). Caregiver well-being: a multidimensional examination of
family caregivers of demented adults. The Gerontologist, 26, 253-259.
Gerritsen, J.C., & van der Ende, P.C. (1994). The development of a caregiving burden scale.
Age and Ageing, 23, 483-491.
21
Giovannetti, E., Wolff, J., Frick, K., & Boult, C. (2009). Construct validity of work productivity
and activity impairment questionnaire across informal chronically ill older patients. Value
in Health, 12, 1011-1017.
19
Gitlin, L.N., Roth, D.L., Burgio, L.D., Loewenstein, D.A., Winter, L., Nichols, L., Arguelles, S.,
Corcoran, M., Burns, R., & Martindale, J. (2005). Caregiver appraisal of functional
dependence in individuals with dementia and associated caregiver upset: Psychometric
properties of a new scale and response patterns by caregiver and care recipient
characteristics. Journal of Aging and Health, 17(2), 148-171.
Gitlin, L.N., Winter, L., Dennis, M.P., Corcoran, M., Schinfeld, S., & Hauck, W.W. (2002).
Strategies used by families to simplify tasks for individuals with Alzheimers Disease and
related disorders: psychometric analysis of the Task Management Strategy Index (TMSI).
The Gerontologist, 42, 61-69.
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
impairment. Research in Nursing and Health, 15, 271-283.
Golden, R.R., Teresi, J.A., & Gurland, B.J. (1984). Development of indicator scales for the
Comprehensive Assessment and Referral Evaluation (CARE) interview schedule. Journal
of Gerontology, 39, 138-146.
Goodman, C.C. (1991). Perceived social support for caregiving: measuring the benefit of selfhelp/support group participation. Journal of Gerontological Social Work, 16, 163-175.
vii
40
34, 43
19
5, 20, 35
Hays, J.C., Meador, K.G., Branch, P.S., & George, L.K. (2001). The Spiritual History Scale in
Four Dimensions (SHS-4): Validity and reliability. The Gerontologist, 41, 239-249.
46
Hughes, S.L., Giobbie-Hurder, A., Weaver, F.M., Kubal, J.D., & Henderson, W. (1999).
Relationship between caregiver burden and health-related quality of life. The
Gerontologist, 39, 534-545.
17
Jalowiec, A., Murphy, S., & Powers, M. (1984). Psychometric assessment of the Jalowiec
coping scale. Nursing Research, 33, 157-161.
45
Kaufer, D.I., Cummings, J.L., Christine, D., Bray, T., Castellon, S., Masterman, D., MacMillan,
A., Ketchel, P., & DeKosky, S.T. (1997). Assessing the impact of neuropsychiatric
symptoms in Alzheimer's disease: The Neuropsychiatric Inventory Caregiver Distress
Scale. Journal of the American Geriatrics Society, 46, 210-215.
Kelloway, E., Gottlieb, B., & Barham, L. (1999). The source, nature, and direction of work and
family conflict: longitudinal investigation. Journal of Occupational Health Psychology,
4(4), 337-346.
19
Kinney, J.M., & Stephens, M.A.P. (1989a). Caregiver hassles scale: assessing the daily
hassles of caring for a family member with dementia. The Gerontologist, 29, 328-332.
Kinney, J.M., & Stephens, M.A. (1989b). Hassles and uplifts of giving care to a family member
with dementia.Psychology and Aging, 4, 402-408.
Kiyak, H., Montgomery, R., Borson, S., & Teri, L. (1985). Coping patterns among patients with
th
Alzheimers disease and non-demented elderly. Paper presented at the38 Annual
Scientific Meeting of the Gerontological Society of America, New Orleans, LA.
45
Kohout, F.J., Berkman, L.F., Evans, D.A., et al. (1993).Two shorter forms of the CES-D
(Center for Epidemiological Studies Depression) depression symptoms index. Journal of
Aging and Health, 5, 179-93.
14
Kosberg, J.I., & Cairl, R.E. (1986). The cost of care index: a case management tool for
screening informal care providers. The Gerontologist, 26, 273-278.
Kosberg, J.I., & Cairl, R.E. (1991). Burden and competence in caregivers of Alzheimers
Disease patients: research and practice implications. Journal of Gerontological Social
Work, 18, 85-96.
Kosberg, J.I., Cairl, R.E., & Keller, D.M. (1990). Components of burden: interventive
implications. TheGerontologist, 30, 236-242.
viii
7, 18, 27,
30, 31
37
7, 18, 27,
30, 31
43
Kuhn, D. & Fulton, B.R. (2004). Efficacy of an educational program for relatives of persons in
the early stages of Alzheimers disease. Journal of Gerontological Social Work, 42(3/4),
109-130
39
Lawrence, R.H., Tennstedt, S.L., & Assmann, S.F. (1998). Quality of the caregiver-care
recipient relationship: Does it offset negative consequences of caregiving for family
caregivers? Psychology and Aging, 13, 150-158.
34
Lawton, M.P., & Brody, E. (1969). Assessment of older people: Self-maintaining and
instrumental activities of daily living. The Gerontologist, 34, 179-186.
Lawton, M.P., Kleban, M.H., Moss, M., Rovine, M., & Glicksman, A. (1989). Measuring
caregiving appraisal. Journal of Gerontology: Psychological Sciences, 44, 61-71.
3, 4
9, 20, 35, 37
Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer
Pub. Co.
46
Logsdon, R., Gibbons, L., McCurry, S., & Teri, L. (1999). Quality of life in Alzheimers disease:
Patient and caregiving reports. Journal of Mental Health and Ageing, 5(1).
17
Macera, C.A., Eaker, E.D., Jannarone, R.J., Davis, D.R., & Stoskopf, C.H. (1993). A measure
of perceived burden among caregivers. Evaluation & the Health Professions, 16, 204211.
25
nd
McCubbin, M.A., McCubbin, H.I., & Thompson, A.I. (1987). Family Hardiness Index. In:
McCubbin, H.I., & Thompson, A.I. (Eds.), Family Assessment Inventories. The University
of Wisconsin-Madison, pp. 123-130.
McCullough, L.B., Wilson, N.L., Teasdale, T.T., Kolpakchi, A.L., & Skelly, J.R. (1993).
Mapping personal, familial and professional values in long tem care decisions. The
Gerontologist, 33, 324-332.
19
33
Mindel, C.H., & Wright, R. (1982). Differential living arrangements among the elderly and their
subjective well-being. Activities, Adaptation & Aging, 3, 25-34.
33
Montgomery, R.J.V., Gonyea, J.G., & Hooyman, N.R. (1985a). Caregiving and the experience
of subjective and objective burden. Family Relations, 34, 19-26.
21
Montgomery, R.J.V., Kwak, J., Kosloski, K., OConnell Valuch, K. (2011). Effects of the
TCARE Intervention on caregiver burden and depressive symptoms: Preliminary
findings from a randomized controlled study. The Journals of Gerontology, Series
B:Psychological Sciences and Social Sciences, 66(5), 640-647.
21
Montgomery, S.A., & Asberg, M. (1979). A new depression scale designed to be sensitive to
change. International Journal of Psychiatry, 13, 382-389.
15
ix
4, 6, 10, 22
Moss, M., Lawton, M.P., Dean, J., Goodman, M., & Schneider, J. (1987). Satisfactions and
burdens in caring for impaired elderly persons. The Gerontologist, 27(164A).
25
Mullan, J.T. (1992). The bereaved caregiver: A prospective study of changes in well-being.
The Gerontologist, 32, 673-683.
23, 39
Nagi, S. (1976). An epidemiology of disability among adults in the United States. Milbank
Quarterly, 54, 439-467.
Netemeyer, R., Boles, J., & McMurrian, R. (1996). Development and Validation of work-family
conflict and family-work conflict scales. Journal of Applied Psychology, 81(4), 400-410.
19
Nicholas, M. (1989). Self-efficacy and chronic pain. Paper presented at the Annual
Conference of the British Psychological Society, St. Andrews.
Niederehe, G., & Fruge, E.D. (1984). Dementia and family dynamics: Clinical research issues.
Journal of GeriatricPsychiatry, 17, 21-56.
Noelker, L.S., & Townsend, A.L. (1987). Perceived caregiving effectiveness: the impact of
parental impairment, community resources, and caregiver characteristics. In T. Brubaker
(Ed.), Aging, Health and Family, Long Term Care. Newbury Park, CA: Sage Publications.
Noelker, L.S., & Wallace, R.W. (1985). The organization of family care for impaired elderly.
Journal of Family Issues, 6, 23-44.
24, 38
Nolan, M., Grant, G., & Keady, J. (1996). Understanding family care. Buckingham: Open
University Press.
44
Nolan, M., Keady, J., Grant, G. (1995). CAMI: a basis for assessment and support with family
carers. British Journal of Nursing, 4(14), 822-826.
44
Novak, M., & Guest, C. (1989). Application of a multidimensional Caregiver Burden Inventory.
The Gerontologist, 29, 798-803.
20, 21
Oberst, M.T., & Scott, D.W. (1988). Postdischarge distress in surgically treated cancer
patients and their spouses. Research in Nursing and Health, 11, 223-233.
15
Orbell, S., Hopkins, N., & Gillies, B. (1993). Measuring the impact of informal caregiving.
Journal of Community and Applied Social Psychology, 3, 149-163.
35
Pakenham, K.I. (2007). The nature of caregiving in multiple sclerosis: development of the
caregiving tasks in multiple sclerosis scale. Multiple Sclerosis, 13, 929938.
44
Parker, G.B. (1978). The bonds of depression. Sydney, Australia: Angus & Robertson.
33
Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M. (1990). Caregiving and the stress
process: an overview of concepts and their measures. The Gerontologist, 30 (5), 583-594.
39
Picot, S.J., Debanne, S.M., Namazi, K.H., & Wykle, M.L. (1997a). Religiosity and perceived
rewards of Black and White caregivers. The Gerontologist, 37, 89-101.
35
Picot, S.J.F., Youngblut, J., & Zeller, R. (1997b). Development and testing of a measure of
perceived rewards in adults. Journal of Nursing Measurement, 5, 33-52.
35
Pierce, L., Ader, K., & Peter, P. (1989). Caregiver burden and coping strategies. The American
Journal of Alzheimers Care and Related Disorders & Research, 4, 36-41.
45
Poulshock, S.W., & Deimling, G.T. (1984). Families caring for elders in residence: issues in
the measurement of burden. Journal of Gerontology, 39, 230-239.
25
Pound, P., Gompertz, P., & Ebrahim, S. (1993). Development and results of a questionnaire to
measure carer satisfaction after stroke. Journal of Epidemiology and Community Health,
47, 500-505.
41
Pruchno, R.A., Michaels, J.E., & Patahnik, S.L. (1990). Predictors of institutionalization among
Alzheimers disease victims with caregiving spouses. Journal of Gerontology, 45, S259S266.
10, 36
Pruchno, R.A., & Resch, N.L. (1989a). Aberrant behaviors and Alzheimers disease: mental
health effects of spouse caregivers. Journal of Gerontology, 44, S177-S182.
18, 24
Pruchno, R., & Resch, N. (1989b). Mental health of caregiving spouses: coping as mediator,
moderator, or main effect? Psychology and Aging, 4, 454-463.
45
Quayhagen, M.P., & Quayhagen, M. (1982). Coping with conflict: measurement of age-related
patterns. Research on Aging, 4, 364-377.
45
Quayhagen, M.P., & Quayhagen, M. (1988). Alzheimers stress: coping with the caregiving
role. The Gerontologist, 28, 391-396.
45
Quinn, C., Dunbar, S.B., & Higgins M. (2010). Heart failure symptom assessment and
management: can caregivers serve as proxy? Journal of Cardiovascular Nursing. 25(2),
142-148.
40
Radloff, L. (1977). The CES-D Scale: A self-report depression scale for research in the
general population. Applied Psychological Measurement, 1, 385-401.
14
Reamy, A.M., Kim, K., Zarit, S.H., & Whitlatch, C.J. (2011). Understanding discrepancy in
perceptions of values: Individuals with mild to moderate dementia and their family
caregivers. The Gerontologist, 51(4), 473-483.
Robinson, B.C. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38, 344348.
24
39
xi
Scholte op Reimer, W.J.M., De Haan, R.J., Pijnenborg, J.M.A., Limberg, M., & Van den Bos,
G.A.M.(1998). Assessment of burden in partners of stroke patients with the Sense of
Competence Questionnaire. Stroke, 29, 373-379.
18, 36, 39
8, 34
Sebern, M. (2008). Refinement of the Shared Care Instrument- revised: A measure of a family
care interaction. Journal of Nursing Measurement, 16(1), 43-60.
8, 34
Sebern, M., & Whitlatch, C.J. (2007). Dyadic Relationship Scale: A measure of the impact of
the provision and receipt of family care. The Gerontologist, 47(6), 741-751.
Semple, S.J. (1992). Conflict in Alzheimers caregiving families: Its dimensions and
consequences. The Gerontologist, 32, 648-655.
Sheikh, J.I., & Yesavage, J.A. (1986). Geriatric Depression Scale (GDS). Recent evidence
and development of a shorter version. In T.L. Brink (Ed.), Clinical Gerontology: A Guide to
Assessment and Intervention (pp. 165-173). NY: The Haworth Press, Inc.
Shyu, Y-I.L. (2000). Development and testing of the Family Caregiving Factors Inventory for
home health assessment in Taiwan. Journal of Advanced Nursing, 32, 226-234.
Skaff, M.M., & Pearlin, L.I. (1992). Caregiving: role engulfment and the loss of self. The
Gerontologist,32, 656-664.
32
9, 32
15
3, 4, 8, 38
23, 37
Slutier, J., de Croon, E., Meijman, T., & Frings-Dresen, M. (2003). Need for recovery from
work related fatigue and its role in the development and prediction of subjective health
complaints. Occupational Environmental Medicine, 60, i62-i70.
27
Spanier, G.B. (1977). Measuring dyadic adjustment: new scales for assessing the quality of
marriage and similar dyads. Journal of Marriage & the Family, 38, 15-28.
31
Steffen, A.M., McKibbin, C., Zeiss, A.M., Gallagher-Thompson, D., & Bandura, A. (2002). The
revised scale for caregiving self-efficacy: reliability and validity studies. Journal of
Gerontology: Psychological Sciences, 57B, P74-P86.
39
Stephens, M.A., Franks, M.M., & Townsend, A.L. (1994). Stress and rewards in womens
multiple roles: The case of women in the middle. Psychology and Aging, 9, 45-52.
36
Stetz, K. (1986). The experience of spouse caregiving for persons with advanced cancer.
Unpublished doctoral dissertation, School of Nursing, University of Washington, Seattle.
Stevens, A.B., Coon, D., Wisnieski, S., Vance, D., Arguelles, S., Belle, S., Mendelsohn, A.,
Ory, M.,& Haley, W. (2004). Measurement of leisure time satisfaction in family caregivers.
Aging & Mental Health, 8(5), 450-459.
xii
18
35
Strawbridge, W.J., & Wallhagen, Margaret I. (1991). Impact of family conflict on adult child
caregivers. The Gerontologist, 31, 770-777.
25
Taylor, R.J., & Chatters, L.M. (1986). Church-based informal support among elderly blacks.
The Gerontologist, 26, 637-642.
45
Tebb, S.S. (1995). An aid to empowerment: A caregiver well-being scale. Health and Social
Work, 20, 87-92.
16
Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., & Vitaliano, P.P. (1992). The revised
memory and behavior problems checklist. Psychology & Aging, 7, 622-631.
The Benjamin Rose Institute on Aging (2012). Supporting Health, Activities, Resources and
Education: The SHARE Project assessment instruments. The Benjamin Rose Institute on
Aging: Cleveland, OH.
1, 2, 3
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).
24
Todtman, K., & Gustafson, A.W. (1991). The financial impact scale: An instrument for
assessing informal long-term caregivers. Journal of Gerontological Social Work, 18, 135150.
30
Turner, J.R., Frankel, G.B., & Levin, D. M. (1983). Social support: Conceptualization,
measurement, and implications for mental health. Research in Community & Mental
Health, 3, 67-111.
43
Vitaliano, P.P., Russo, J., Carr J.E., Maiuro, R.D., & Becker, J. (1985). The ways of coping
checklist: revision and psychometric properties. Multivariate Behavioral Research, 20, 326.
46
Vitaliano, P.P., Russo, J., Young, H.M., Becker, J., & Maiuro, R.D. (1991). The screen for
caregiver burden. The Gerontologist, 31, 76-83.
26
Wallhagen, M.I. (1988). Perceived control and adaptation in elderly caregivers. (Doctoral
dissertation, University of Washington) Dissertation Abstracts International, 50, 128.
Ware, Jr., J.E. (1999). SF-36 Health Survey. In M.E. Maruish (Ed.), The use of psychological
testing for treatment planning and outcomes assessment (Chapter 40). Mahwah, NJ:
Lawrence Erlbaum Associates, Publishers.
11, 17
Ware, Jr., J.E., Kosinski, M., & Keller, S.D. (1996). A 12-item short-form health survey:
Construction of scales and preliminary tests of reliability and validity. Medical Care, 34,
220-233.
xiii
11
11, 17
Watson, D., Clark, L.A., & Tellegen, A. (1988). Development and validation of brief measures
of positive and negative affect: the PANAS scales. Journal of Personality and Social
Psychology, 54, 1063-1070.
12
Weisman, A.D., & Worden, J.W. (1977). The existential plight in cancer: significance of the
first 100 days. International Journal of Psychiatry in Medicine, 7, 1-15.
15
Wells, Y.D., & Jorm, A.F. (1987). Evaluation of a special nursing home unit for dementia
sufferers: A randomized controlled comparison with community care. Australian & New
Zealand Journal of Psychiatry, 21, 524-531.
23, 28
Wells, Y.D., Jorm, A.F., Jordan, F., & Lefroy, R. (1990). Effects on caregivers of special day
care programmes for dementia sufferers. Australian & New Zealand Journal of Psychiatry,
24, 82-90.
23, 28
Whitlatch, C.J. (2002). Older consumers and decision making: A look at family caregivers and
care recipients. Paper presented at Scripps Gerontology Centers Consumer Voice and
Choice Conference, Oxford, OH.
Whitlatch, C.J. (2010). Assessing the personal preferences of persons with dementia. In P.A.
Lichtenberg (Ed.), Handbook of assessment in clinical gerontolology (pp. 557-578).
Elsevier Publishing.
Whitlatch, C.J., Feinberg, L.F., & Stevens, E.J. (1999). Predictors of institutionalization for
persons with Alzheimers disease and the impact on family caregivers. Journal of Mental
Health and Aging, 5, 275-288.
Whitlatch, C.J., Piiparinen, R., & Feinberg, L.F. (2009). How well do family caregivers know
their relatives care values and preferences? Dementia, 8(2), 223-243.
Whitlatch, C.J., Schur, D., Noelker, L.S., Ejaz, F.K., & Looman, W.J. (2001). The stress
process of family caregiving in institutional settings. The Gerontologist, 41, 462-473.
Wolfson, C., Handfield-Jones, R., Glass, K.C., McClaran, J., & Keyserlingk, E. (1993). Adult
childrens perceptions of their responsibility to provide care for dependent elderly parents.
The Gerontologist, 33, 315-323.
42
27
14
Zacher, H., & Winter, G. (2011). Eldercare demands, strain, and work engagement: The
moderating role of perceived organizational support. Journal of Vocational Behavior, 79,
667-680.
27
Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly:
correlates of feelings of burden. The Gerontologist, 20, 649 -655.
26
xiv
12, 25, 26
Zeiss, A., Gallagher-Thompson, D., Lovett, S., Rose, J., & McKibbin, C. (1999). Self-efficacy
as a mediator of caregiver coping: Development and testing of an assessment model.
Journal of Clinical Geropsychology, 5, 221-230.
39
Zung, W. (1965). A self-rating depression scale. Archives of General Psychiatry, 12, 63-70.
15
xv