SUPPORTING CARE PARTNERS
March 17, 2021
Opening Remarks and Housekeeping
Julie Arel, PMCQ President
- Our next meeting on April 20th, is entitled: Green shoots of opportunity. We will discuss new opportunities in the pharmaceutical industry that have emerged during the pandemic.
- Julie announced the networking and games night which will take place on May 18h at 19:00 pm.
- The PMCQ encourages all members to share their topics of interest for future meetings in the next season via social media or using the Thought Exchange platform.
- Julie thanked all the educational, corporate and support partners.
- She also thanked GLG communications for the creative work of this event.
Testimony from Louis-Philippe and Josée!
Participants were invited to view a 30-minute video before the virtual conference that featured two renowned guests: Louis-Philippe Rivard and Josée Boudreault. They delivered a touching testimony of their journey imbued with humor and highlighted the importance of caregivers through their personal experiences and challenges.
Louis-Philippe and Josée also joined the virtual conference during the question period.
Introduction of Speaker
Supporting caregivers to become partners in patient care
Ms. Beaudet started the presentation by providing a picture of caregivers’ reality in Quebec. These are individuals who voluntarily commit to supporting and accompanying a close person who is experiencing a temporary or permanent disability. Caregivers are predominantly represented by women with almost half of them working full time while assisting a close person who often is part of their family. Caregivers’ support often goes well beyond therapeutic care and varies greatly depending on the degree of disability of the person requiring assistance. Indeed, the caregiver can also offer support in daily personal care, transportation, home organization, budget management and even in decision-making when it comes to treatment plans.
This commitment requires nearly 22 hours of work per week for nearly 33% of caregivers, which can quickly lead to an accumulation of stress and fatigue. In addition, it is important to note that the caregiver’s role can span over several decades and this illustrates their essential contribution to the quality of life of their close one. As a result, nearly a third of those who commit as a caregiver show signs of distress and only 25% of these have used external services.
In 2016, Quebec had a significant number of caregivers with more than 1.5 million members, which represents nearly a quarter of the province’s total population. This number is expected to continue growing over the next few years due to acceleration in the population aging phenomenon. This national observation led to Bill 56 which was adopted in October 2020. The objective of this project is to recognize the essential role and the significant contribution of caregivers as well as to support them in their role. To this end, an action plan involving various government stakeholders will be put in place to make sure that the appropriate tools are available and to ensure an equitable quality of life for all caregivers across the various regions of Quebec.
Essential resources for caregivers
The Quebec public library association
For several years, this association has offered several information services for caregivers as part of the program: Biblio-aidants. Several Quebec libraries are participating in this initiative to develop a directory of all the resources relevant to caregivers. These resources are not only covering the illnesses, but also the various challenges that caregivers may face.
The Council on the Status of Women
This non-profit organization provides online research and analysis on the challenges that caregivers are facing in Quebec.
The Regroupement des Aidants Naturels du Québec (RANQ) and the organization l’Appui both offer various support services as well as resources to support the role of caregivers across several regions of Quebec.
Patient groups are now increasingly integrating a dedicated component for caregivers.
The Quebec government website (www.quebec.ca) provides caregivers with several sections of detailed information on the process of applying for financial support as well as tax programs. These sections are updated annually.
The Chambre des notaires du Québec and Éducaloi organization both offer several specific sections for caregivers that deal with wills, protection mandates, general powers of attorney, advance medical directives but also with everything related to end-of-life care including medical aid in dying.
Ms. Beaudet concluded her presentation by stressing that caregivers’ contribution is not only important for their loved ones but also for society. It is important to raise awareness of the physical and mental health risks associated with their roles and responsibilities. Also, it is crucial to optimize their access to relevant resources, which remain limited for the moment, so that they can continue to act as a key partner in patient care.
Caregivers’ support: Pharma’s Perspective
Ms. Montgrain briefly introduced a unique department at AbbVie which puts the patient at the heart of decisions called: Patient Experience. This department integrates the community relations component as well as the patient support program: AbbVie Care.
AbbVie is engaged with more than 50 patient and caregiver associations across the country. These strategic relationships allow the industry to better understand the patient’s reality throughout their care journey with the objective of developing and exploring initiatives that can meet their needs and challenges.
The Patient support program offers a personalized approach to patient care and support. Program staff work closely with the entire patient care team to ensure that the patient has the tools and relevant information on hand in order to achieve their treatment goals.
Ms. Montgrain presented a few scenarios where the industry was able to take action to support caregivers in their role. Caregivers were invited to join their close one to a patient advisory meeting, and this helped better understand their unique needs and challenges. Several initiatives have been implemented based on their feedback to provide more support to caregivers such as:
- Extending AbbVie Care services to caregivers
- Developing an AbbVie Care website as well as magazines solely dedicated to topics affecting caregivers
- Partnering with Uber and patient associations in order to provide free transport services for patients during the pandemic
Finally, the industry recognizes caregivers’ essential contribution and can also contribute to their support through various initiatives.
Q: What suggestions and advice can we give to caregivers?
A: It is important for caregivers not to take full responsibility for the well-being of their loved one and to learn to let go. In the process, we must absolutely avoid losing ourselves in this role and forgetting about the relationship we have with our loved ones outside of the informal assistance that we offer. Finally, you also have to learn to focus on what you can control.
Q: Can we expect to see more hospitals adopt the approach developed at the CHUM, allowing more access to hospitalized patients for caregivers during the pandemic?
A: The team is currently in the process of writing an article on the protocols and approaches that the CHUM was able to develop during the pandemic to ensure that caregivers can visit and go back home safely. The goal is to be able to share these practices that have been developed in the intensive care unit with the help of a multidisciplinary team.
Q: How will resources need to adjust to the increase in male caregivers?
A: Male caregivers are actually less likely to seek help on their own. We will therefore have to try to reach them differently and use their work environment and social activities to optimize the support we can offer.
Q: What can the PMCQ and the pharma industry do to support caregivers?
A: Caregivers’ biggest need right now is still around support resources. The journey is challenging, and you need to adjust to a new reality. It is important to engage with caregivers directly in order to inform them about available resources and to support them in the overall process.