PEOPLE FIRST: The ALS Society of BC has received a grant from the Province of British Columbia to develop a proposal to secure funding for personalized support for ALS patients and caregivers.

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GOAL OF THE STUDY: The CIRCA study (Characterizing the Impact of Respite Care in ALS) will evaluate the impact of a small amount of supplemental care on the well-being and health of persons with ALS and their caregivers by comparing to those who have not received supplemental care.

OVERVIEW: For each ALS patient, there is a team of caregivers who provide countless hours of their time to positively influence quality of life through quality of care. In many cases, it is a family member – often spouse – who assumes the role of the primary caregiver. This role is demanding, stressful, and often without respite. The ALS Society of BC (ALS BC) is focused on supporting primary caregivers whose needs often go unnoticed as they experience burden due to personal and social restrictions as well as added physical and emotional pressures.
Currently, there is little information about whether or not relieving this burden leads to positive change for both the caregiver and the person with ALS. In 2015 The ALS BC launched a 6-month pilot program focused on reducing the burden of caregivers. This program provided 5 families with 16 hours per month of a trained ALS caregiver’s time, allowing the primary caregiver a break.
As a result of the positive feedback resulting from the pilot, ALS BC has been able to secure limited provincial funding to broaden the program, and developed the CIRCA Study to gather robust results to potentially support further funding applications and future program expansion.

METHODOLOGY: 70 patient and primary caregiver pairs in the lower mainland are needed for this 6-month study, beginning in August 2017. Of the 70 pairs participating in the CIRCA study, 30 pairs will be selected at random receive additional care, with the remaining 40 will acting as the control group. The control group will not receive additional care; however, their support is essential in conducting a robust scientific study, which will serve as the foundation for ALS BC to pursue additional funding, and strive to grow the program to offer the same support to other families in the future.

WE NEED YOUR HELP: Please consider participating in this important study. We are looking for caregiver/patient spousal pairs who meet the following criteria:
• Are fluent in English
• Are available for two 90-minute assessments before and after a 6-month period
• Are able to travel to the offices of ALS BC for the assessments (1233 - 13351 Commerce Parkway Richmond, BC)
• Are experiencing caregiver burden.
Persons with ALS who, are in the pre-terminal or terminal stage of ALS or are using a Bilevel Positive Airway Pressure (BiPAP) machine full-time (20 or more hours per day) are not eligible to participate in the study at this time.
If you meet these criteria and are interested in learning more, please contact ALS BC.

Alexandra Guerrero
Patient Services Coordinator, ALS BC
(604) 278-2257 Extension 226
Patientservices2@alsbc.ca

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