Survey for Caregivers Aged 50 and Over (PPA)

There are more and more informal caregivers (PPA) in Quebec. Their increase between 2012 and 2018, according to data from the "General Social Survey - Care Given and Received," was significant, around 32%. The available data paint a typical portrait of a Quebec caregiver: (a) she is a woman, (b) aged between 50-55 years, (c) who devotes at least 3 hours of her time per week, on a regular basis, (d) to caring for an elderly parent. To this date, there is no reliable data on the health status-whether mental, physical, or social-of caregivers in Quebec. Yet this information is crucial because it affects the ability of caregivers to fulfill their role and, consequently, the stable health of the individuals they care for, allowing them to continue living at home. This situation exposes caregivers to a decline in their own health, and by extension, the health of those they care for. The fact that the typical Quebec caregiver is 50 years old or older increases the risk of health deterioration within the caregiver-care receiver pair. Indeed, age 50 is when the effects of physiological and pathological aging begin to impact the physical capacities of the elderly. Developing new practices that focus on the health characteristics of both caregivers and care receivers, in order to prevent health deterioration, is therefore a crucial step in supporting caregivers in their role and ensuring that care receivers can stay at home in good conditions for as long as possible.

The issue of caregivers' health is still under-addressed in Quebec, both in the scientific literature and in population surveys. It seems that caregivers need a comprehensive evaluation of their health status (physical, mental, and social), given the significant impact caregiving has on their health. Research conducted within the Living Lab, led by Dr. Beauchet's team, has helped develop tools and questionnaires that effectively assess the frailty of individuals aged 50 and over and produce reports that raise awareness about their health status, enabling them to implement future care solutions that meet their needs.

The overall objective is to assess the health status (mental, physical, social) of caregivers aged 50 and over, living in Quebec-through self-assessment to make them aware of their actual health condition and engage them in a process of self-care.

Study Overview

• Status: Enrolling by invitation
• Conditions: Caregivers; Health; Caregiver Wellbeing; Caregiver Mental Health
• Intervention / Treatment: Other: Health questionnaire

• Study Type: Observational
• Enrollment (Estimated): 10000

Contacts and Locations

Study Locations

• Canada
  • Quebec
    • Montréal, Quebec, Canada, H3W 1W5
      • CRIUGM

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

Caregivers aged 50 years old and older living in Quebec

Description

Inclusion Criteria:

• Be a caregiver
• Be 50 years old or older
• Reside in Quebec for at least 6 months and 1 day of the year
• Have an internet connection with an electronic device (computer, touch tablet or smartphone)
• Read and understand written French or English. The questionnaire is only available in these 2 languages.

Exclusion Criteria:

• Living in a Centre d'Hébergement et de Soins de Longue Durée (CHSLD) (long-term care centre) or in the medicalized sector of a seniors' residence.
• Participate in a concurrent interventional study (study involving medication or therapeutic intervention, etc.).

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Caregiver; Caregivers aged 50 years old and older living in Quebec	Other: Health questionnaire; The intervention involves the completion and analysis of an online questionnaire designed to assess the health (mental, physical, social) of caregivers aged 50 and over in Quebec. This assessment is based on a combination of questionnaires (CARE, 4-item Zarit scale, 4-item GDS, 3-item UCLA loneliness scale, etc.).

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Physical health using the CARE frailty scale	CARE is a frailty scale. The AgeTeQ team has developed this scale, which enables frailty to be assessed via a standardized self-questionnaire comprising 22 simple questions, 20 of which are based on a binary response (yes versus no) and two on numerical. CARE is based on a cumulative deficit approach to measuring frailty. Each response is assigned a point 1 if there is a deficit, and 0 if there is no deficit. The CARE score ranges from 0 (no deficits) to 21 (maximum cumulative deficits). This score has been segmented into 3 levels using a validated approach to determine 3 levels of frailty: The robust level: score between 0 and 1.; Pre-fragile level: score between 2 and 4.; Fragile level: score > 5.	Questionnaire completed once (15 minutes) between October 2024 and February 2025

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Caregiver burden with the 4-item Zarit score (/20)	The caregiver burden is assessed using the 4-item Zarit scale. This scale asks four questions that reflect how caregivers feel when caring for their loved ones. For each statement, the respondent is asked to indicate a frequency: never, rarely, sometimes, quite often and almost always.	Questionnaire completed once (15 minutes) between October 2024 and February 2025
Depression with the 4-item GDS score (/4)	The Geriatric Depression Scale or GDS was designed to assess the presence of depressive feelings and suicidal intentions in the elderly. It is essentially a screening test for depressive impairment or state. The GDS is initially composed of 30 questions with a binary response choice (yes or no). For reasons of questionnaire length, it was decided to use an abbreviated version of the GDS with 4 items. The GDS then gives a score between 0 and 4, with 0 corresponding to a very high probability of no depression, and 1 or more corresponding to a very high probability of depression.	Questionnaire completed once (15 minutes) between October 2024 and February 2025
Social isolation	A question is asked to measure the social isolation of caregivers, taking into account the number of contacts (in person or by telephone) with people outside the household (friends, family, professionals).	Questionnaire completed once (15 minutes) between October 2024 and February 2025
Loneliness with the UCLA score (/9)	The 3-item UCLA scale is a screening tool for loneliness in adults. The scale consists of three questions, with frequency options: never, sometimes and often. The score can vary between 3 and 9. A high score indicates a high degree of loneliness.	Questionnaire completed once (15 minutes) between October 2024 and February 2025
Perceived health scores	Three additional questions are asked in the form of a scale (ranging from 0 to 10) to assess the perceived health of caregivers. For each domain, the respondent is asked to indicate his or her state of perceived health, ranging from 0 (the worst state of health the respondent can imagine) to 10 (the best state of health the respondent can imagine). Three health domains are investigated: psychological health, physical health and social isolation.	Questionnaire completed once (15 minutes) between October 2024 and February 2025

Collaborators and Investigators

• Sponsor: Centre integre universitaire de sante et de services sociaux du Centre-Sud-de-l'Île-de-Montréal

Study record dates

Study Major Dates

• Study Start (Actual): September 25, 2024
• Primary Completion (Estimated): February 25, 2025
• Study Completion (Estimated): June 25, 2025

Study Registration Dates

• First Submitted: December 5, 2024
• First Submitted That Met QC Criteria: December 5, 2024
• First Posted (Actual): December 9, 2024

Study Record Updates

• Last Update Posted (Estimated): December 12, 2024
• Last Update Submitted That Met QC Criteria: December 9, 2024
• Last Verified: December 1, 2024

More Information

Terms related to this study

• Other Study ID Numbers: 2025-2165

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: UNDECIDED

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No