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Caregiver Distress
Alternate Name
The percentage of home care patients whose primary family or friend caregiver experienced feelings of distress, anger or depression in relation to their caregiving role, or was unable to continue their caregiving activities

The percentage of long-stay home care patients whose unpaid caregivers experienced distress in a 1-year period (a risk-adjusted percentage).

A caregiver is defined as a person who takes on an unpaid caring role for someone who needs help because of a physical or cognitive condition, an injury, or a chronic life-limiting illness. This caregiver can be a spouse, child/child-in-law, other relative or friend, or neighbour who lives or does not live with the patient.

Caregivers who are distressed are defined as primary caregivers who express feelings of distress, anger or depression and/or any caregiver who is unable to continue in their caring activities.

This indicator defines long-stay patients as those who have already been receiving home care for at least 60 days.

When a patient has more than one home care assessment within a given year, the most recent assessment will be included in the analysis.

This measure may indicate whether individuals receiving home care and their caregivers have access to the sufficient and appropriate level of services and supports. It may also help to identify where additional resources are needed to assist caregivers in order to help prevent burnout and to allow the people they are caring for to stay at home as long as possible. Examples include providing access to more hours of formal home care and different types of services (e.g., meals, housework, respite services) and help navigating the system.

A lower percentage is better.

Indicator Status
HQO Reporting tool/product
Public reporting
Unit of Measurement
Calculation Methods
Numerator divided by denominator times 100
Numerator including inclusion/exclusion


Total number of home care patients who, at the time of their most recent assessment in the given year, have an unpaid caregiver who is experiencing distress


1. Assessments with:

     a. Caregiver status coded as unable to continue in caring activities and/or

     b. Primary caregiver status coded as expresses feelings of distress, anger or depression

Denominator including inclusion/exclusion


Total number of long-stay home care patients with a caregiver at the time of their most recent assessment in the given year


Resident Assessment Instrument-Home Care (RAI-HC) or interRAI HC assessments with:

     1. Valid age, health card number (HCN), assessment date, case opened date and patient ID

     2. CPS, ADL Hierarchy and CHESS scores that are not missing from the assessment

     3. Home care patient identified as having an unpaid caregiver


1. Assessments with "initial assessment" as the reason for the assessment

2. Assessments conducted fewer than 60 days from the date the case opened to the assessment date

3. Assessments conducted in a hospital setting

4. Assessments of patients younger than 18 years

5. Assessments with a date of assessment that is not the most recent, if a patient has more than one assessment in a fiscal year

Adjustment (risk, age/sex standardization)- detailed

Method of Adjustment:

Logistic regression

Adjustment Applied:

Covariates used in risk adjustment:

     -Activities of Daily Living Self-Performance Hierarchy Scale (ADL Hierarchy)

     -Cognitive Performance Scale (CPS)

     -Changes in Health, End-Stage Disease and Signs and Symptoms (CHESS)

Data Source
Resident Assessment Instrument-HomeCare (RAI-HC) via (LSAS)
Data provided to HQO by
Canadian Institute for Health Information (CIHI)
Reported Levels of comparability /stratifications (defined)
Province, Region
Indicator Results
Not applicable
Caveats and Limitations
This indicator does not capture the experience of individuals not receiving home and community care services. Patients receiving home care while residing in assisted living/supportive living, community care residences or private retirement homes are included. It is important to note that caregivers of people who do not reside in their own private home may have different roles from caregivers of those who do, and their distress may differ. Home care patients identified as having less than 6 months to live are included in this indicator; however, the proportion is small (2%). Access to services varies across jurisdictions. Regional and provincial trends (e.g., weakening, improving) may differ due to differences in data availability. For example, there may be 5 years of provincial results available but only 3 years of regional results.
Comments Detailed
This indicator belongs to the Shared Health Priorities (SHP) portfolio measuring access to mental health and addictions services and to home and community care.
Not applicable
Home Care
Health Human Resources
Resident Assessment Instrument-HomeCare (RAI-HC) via (LSAS)
Publish Datetime
16/04/2024 13:27:00