Caregiver Distress

This indicator provides the percentage of long-stay home care clients whose unpaid caregivers experience distress in a 1-year period.

Lower rates are desirable.

Data updated:
Data availability: to (fiscal years)
Geographic coverage
Newfoundland and Labrador, Nova Scotia, Ontario, Saskatchewan, Alberta, British Columbia, Yukon
Reporting level
National, Province/Territory, Region
Calculation

Total number of home care clients with caregivers who are distressed ÷ Total number of home care clients with caregivers × 100

Unit of analysis: Home care client

Denominator

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

Numerator

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

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Name

Caregiver Distress

Short/Other Names

Caregiver Distress

Description

The percentage of long-stay home care clients whose unpaid caregivers experience 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 client.

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 clients as those who have already been receiving home care for at least 60 days.

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

Rationale

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.

Interpretation

Lower rates are desirable.

HSP Framework Dimension

Access to comprehensive, high-quality health services

Areas of Need

Living With Illness, Disability or Reduced Function

Targets/Benchmarks

Not applicable

Available Data Years

to

Geographic Coverage

  • Newfoundland and Labrador
  • Nova Scotia
  • Ontario
  • Saskatchewan
  • Alberta
  • British Columbia
  • Yukon

Reporting Level/Disaggregation

  • National
  • Province/Territory
  • Region

Indicator Results

Web Tool:
Your Health System: In Brief
 

Update Frequency

Every year

Latest Results Update Date

Updates

Not applicable

Description

Total number of home care clients with caregivers who are distressed ÷ Total number of home care clients with caregivers × 100

Unit of analysis: Home care client

Type of Measurement

Percentage or proportion

Denominator

Description:

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

Inclusions:

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 client ID
  2. CPS, ADL Hierarchy and CHESS scores that are not missing from the assessment
  3. Home care client identified as having an unpaid caregiver

Exclusions:

  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 clients younger than 18 years
  5. Assessments with a date of assessment that is not the most recent, if a client has more than one assessment in a fiscal year

Numerator

Description:

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

Inclusions:

  1. Assessments with
    1. Caregiver status coded as unable to continue in caring activities and/or
    2. Primary caregiver status coded as expresses feelings of distress, anger or depression

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)

Geographic Assignment

Place of residence

Data Sources

  • RAI-HC and interRAI HC data available at CIHI

Caveats and Limitations

  • This indicator does not capture the experiences of individuals not receiving home and community care services.
  • Clients 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 clients 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.

Trending Issues

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

This indicator belongs to the Shared Health Priorities portfolio, which measures access to home and community care.

More information on this indicator is available in the 2020 companion report (PDF).

References

  1. interRAI. Scales: Status and outcome measures. Accessed April 16, 2018.
  2. Canadian Institute for Health Information. Supporting Informal Caregivers — The Heart of Home Care. Analysis in Brief. 2010.
  3. Health Quality Ontario. The Reality of Caring: Distress Among the Caregivers of Home Care Patients. 2016.
  4. Betini RSD, Hirdes JP, Lero DS, Cadell S, Poss J, Heckman G. A longitudinal study looking at and beyond care recipient health as a predictor of long-term care home admission. BMC Health Services Research. 2017.

How to cite:

Canadian Institute for Health Information. Caregiver Distress. Accessed April 30, 2024.

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