COSMIN database

Measuring the impact of informal elderly caregiving: a systematic review of tools

Mosquera, I., Vergara, I., Larranaga, I., Machon, M., del Rio, M., and Calderon, C.
PURPOSE: To classify and identify the main characteristics of the tools used in practice to assess the impact of elderly caregiving on the informal carers' life.

METHODS: A systematic review of literature was performed searching in Embase, MEDLINE, PsycINFO, CINAHL, IBECS, LILACS, SiiS, SSCI and Cochrane Library from 2009 to 2013 in English, Spanish, Portuguese and French, and in reference lists of included papers.

RESULTS: The review included 79 studies, among them several in languages other than English. Their inclusion increased the variety of identified tools to measure this impact (n = 93) and allowed a wider analysis of their geographical use. While confirming their overlapping nature, instruments were classified according to the degree of integration of dimensions they evaluated and their specificity to the caregiving process: caregiver burden (n = 20), quality of life and well-being (n = 11), management and coping (n = 21), emotional and mental health (n = 29), psychosocial impact (n = 10), physical health and healthy habits (n = 2), and other measures. A high use in practice of tools not validated yet and not caregiver-specific was identified.

CONCLUSIONS: The great variety and characteristics of instruments identified in this review confirm the complexity and multidimensionality of the effects of elderly caregiving on the informal carer's life and explain the difficulties to assess these effects in practice. According to the classification provided, caregiver burden and emotional and mental health are the most evaluated dimensions. However, further work is required to develop integrated and caregiving focused procedures that can appraise this complexity across different countries and cultures.
Qual Life Res
1573-2649 (Electronic); 0962-9343 (Linking)
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Self-rated health
Overall quality of life:
Overall quality of life
Adults (18-65)
Seniors (65+)
Codes for special purposes
Factors influencing health status and contact with health services
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
Abbreviated Assessment of the Caregiver's Coping
A-LSNS - Abbreviated Lubben Social Network Scale
Antonovsky's Sense of Coherence
BACS - Beliefs about Caregiving Scale
BAI - Beck Anxiety Inventory
BDI - Beck Depression Inventory   
BRAS - Bradburn Revised Affect Scale
BSI - Brief Symptom Inventory
CADI - Carer's Assessment of Difficulties Index
Camberwell Family Interview Schedule
CAMI - Caregivers' Assessment Management Index
Caregiver Activity Survey
Caregiver Multidomain Self-efficacy
Caregiving Family Profile Questionnaire
CASI - Caregiver Assessment Satisfaction Index
CBI - Caregiver Burden Inventory
CBQ - Caregiver Burden Questionnaire
CBS - Caregiver Burden Scale
CES-D - Centre for Epidemiologic Studies-Depression Scale   
COPE - Carers of older people in Europe index
CQOL - Quality of Life in Alzheimer's Disease, caregiver version
CRA - Caregiver Reaction Assessment   
CRI - Coping Responses Inventory
CSI - Caregiver Strain Index   
CVLT-II - California Verbal Learning Test, Second edition
DCNA - Dementia Care Needs Assessment
Deciding on Preferences
Duke-UNC Functional Social Support Questionnaire
Dysfunctional Attitude Scale
Dysfunctional Thoughts About Caregiving Questionnaire
ECR - Elderly Caregiver Family Relationship
ENES - Eysenk Neuroticism & Extroversion Scale
EQ-5D - EuroQoL-5 Dimensions   
FACES III - Family Adaptability and Cohesion Evaluation Scales III
Family Caregiver Conflict scale
Family Caregiver Self-Efficacy Questionnaire
Family Conflict Scale
GAIN - Gain in Alzheimer's Care Instrument
GDS - Geriatric Depression Scale   
GHQ - General Health Questionnaire
Goldberg's anxiety and depression scales
HADS - Hospital Anxiety and Depression Scale   
HDLF - Health and Daily Living Form
HDRS - Hamilton Depression Rating Scale [ZIE: HAM-D]
Ilfeld-PSI - Ilfeld Psychiatric Symptom Inventory
ISSB - Inventory of Socially Supportive Behaviors
Knowledge of Services Scale
Lawton Subjective Burden Instrument
LSI - Life Satisfaction Index
Marital Needs Satisfaction Scale
MBPC - Memory and Behavior Problems Checklist
MIPS - Millon Index of Personality Styles
NEO-PI-R - NEO Personality Inventory Revised
NHP - Nottingham Health Profile   
NPI-CDS - Neuropsychiatric Inventory – Caregiver distress scale
NPI-Q-Caregivers Distress Scale - Neuropsychiatric Inventory Questionnaire Caregivers Distress Scale
PAC - Positive Aspects of Caregiving
Pearlin's Overload Scale
Pearlin's Role Captivity Scale
Perceived Change Index
PHQ-9 - Patient Health Questionnaire-9
POMS - Profile of Mood States
Preparedness for Caregiving
PSI-II - Personal Style Inventory II
PSQI - Pittsburgh Sleep Quality Index
PSS - Perceived Stress Scale (versions: PSS-10 items)
QLI - Quality of Life Index [alias: Ferrans and Powers Quality of Life Index]
RDAS - Revised Dyadic Adjustment Scale
Relative's Stress Scale
Revised Scale for Caregiving Self-Efficacy
RMBPC - Revised memory and behavior problem checklist
Role-Based Performance Scale
Role Overload Scale
Ruiz & Baca's Questionnaire
Scale of Well-being
Screen for Caregiver Burden
SDI - Sleep Disorders Inventory
SDS - Zung Self-rating Depression Scale
Sense of Competence Questionnaire
SES - Self-efficacy Scale
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SOC-3-UTHS - University of Tokyo Health Sociology version of Sense of Coherence Scale
SQ - Symptom Questionnaire
SRQ - Self-Report Questionnaire
STAI - State-Trait Anxiety Inventory
SWBS - JAREL Spiritual Well-Being Scale
Task Management Strategy Index
WCQ - Ways of Coping Questionnaire
WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire [alias: WHO-QOL BREF]   
ZBI - Zarit Burden Interview