CAREGIVER-FRIENDLY PHARMACY TRAINING PROGRAM
Transcript of CAREGIVER-FRIENDLY PHARMACY TRAINING PROGRAM
© 2021 Pear Healthcare Solutions Inc. www.healthelearning.ca
CAREGIVER-FRIENDLY PHARMACY TRAINING PROGRAM
Module 1: Life as a Caregiver: Understanding the Realities of Caregiving
Subject Matter Expert
Mark Stolow, CEO, Huddol
Reviewer
Rosemarie Patodia, BScPhm, BCGP
Disclosures
The subject matter expert wishes to disclose that he has received funds from the
sponsoring company. The reviewer wishes to disclose that she is the Editorial Director at
Pear Healthcare Solutions.
An educational service for Canadian pharmacists and pharmacy technicians
brought to you by Teva Canada.
CCCEP Information
File no. 1057-2019-2659-I-P
Expiry: April 30, 2022
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Module 1: Life as a Caregiver: Understanding the Realities of Caregiving
Program Introduction This course includes three modules for pharmacists and pharmacy technicians on the
subject of caregivers* and caregiving. This training is part of a broader initiative to
support the creation of a caregiver-friendly pharmacy environment. A caregiver-friendly
pharmacy helps the pharmacy team nurture an optimal partnership between the
pharmacy team and caregivers.
The development of these modules was informed by existing literature and research,
market research, and contributions from an advisory board consisting of pharmacists
and pharmacy technicians. Key takeaways from this comprehensive research included:
• Caregivers place a high value on their relationship with pharmacists
• Caregivers are critical in ensuring better patient** outcomes
• Pharmacists recognize the importance of caregivers in their practice but require
more insight into how to support their experience of care
• Optimizing the relationship between the two parties can also support better
health outcomes for caregivers, can help to streamline pharmacy care delivery for
the patient, and may be the starting point for a new client-pharmacist
relationship (the caregiver is also a pharmacy customer)
Content
This training program includes three modules:
• Module 1: Life as a Caregiver provides insight into the caregiving experience.
• Module 2: Caregivers and Pharmacists provides tools and strategies to improve the
caregiver/pharmacist relationship with the goal of better supporting the patient.
• Module 3: Supporting Caregivers provides resources and information to help
pharmacists support caregiver health and well-being.
Downloadable checklists, tools and resources are available to pharmacies across Canada
to complement this training program at TevaCanada.com/Caregivers. After successfully
completing all three modules, pharmacists will have the opportunity to be added to a
map of caregiver-friendly pharmacies across Canada by simply filling in an online form
that captures the pharmacy’s address, website and contact information. View the map
at: TevaCanada.com/CaregiverPharmacies. Once added to the map, bag stuffers
featuring this dedicated website can be used during the dialogue between the
pharmacist and caregiver.
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*We use the term caregiver throughout the training modules to refer to family or friends who are unpaid and who care for a person who has a physical, cognitive or mental health condition.
**Throughout the training modules we refer to the person in the caregiver’s care as the “patient.” This is to simplify the language used. It should be noted that most caregivers will not see the patient in that light. Pharmacists may want to use language like “the person in your care” or reference the filial relationship (e.g., mother, daughter, father) rather than referring to him/her as a “patient.”
Learning objectives
After successful completion of this module, you will be better able to:
• Discuss the Canadian caregiving context
• Describe who caregivers are
• Outline the types of tasks caregivers undertake to support those in their care
• Review the impact of providing care on caregivers
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Module 1: Life as a Caregiver: Understanding the Realities of Caregiving
Canada Is a Caring Society • In 2018, 25% of Canadians aged 15 years and older cared for or helped
someone who had a long-term health condition, a physical or mental
disability, or problems related to aging.1
• Caregiving is an issue that affects people across the lifespan, including parents
of children with an illness or disability as well as adults caring for parents. In
2006, 3.7% of Canadian children under the age of 15 were reported as having
one or more disabilities.1
• It is estimated that there are 7.8 million active caregivers in Canada. This
represents roughly one in four Canadians.1
• Almost half (45%) of caregivers received help from a spouse or partner who
modified their life or work arrangements to help provide care, 43% received
help from their children, and 39% received help from extended family
members.1
• Caregiving is not limited to helping family members. Although most
caregivers (84%) care for relatives, 16% care for friends and neighbours.1
• Caregiving crosses over many therapeutic areas, from acute to chronic care.
Age-related needs and children with disabilities most commonly call on the
involvement of caregivers.
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Module 1: Life as a Caregiver: Understanding the Realities of Caregiving
Distribution of Care across Health Areas Figure 1 provides insight into the care provided by caregivers across different health
issues and shows that over a quarter of caregivers provided care for aging-related
needs.
Figure 1: Caregiving and Health Problems Source: Statistics Canada, Caregiving and Health Problems, 2012. Reproduced and distributed on an “as is” basis
with the permission of Statistics Canada.
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Module 1: Life as a Caregiver: Understanding the Realities of Caregiving
Caregiver Demographics1 • Proportionally, 54% of caregivers are women and 46% are men.
• Reflecting the fact that the most common care recipients are parents, caregivers
are most often between the ages of 45 to 54 years (24%) and 55 to 64 years
(20%).
• The next most common group is comprised of young Canadians aged 15 to 24
years, accounting for 15% of all caregivers. This group was most likely providing
care to grandparents (48%) and parents (25%).
• Caregivers have multiple responsibilities beyond caring for their chronically ill,
disabled, or aging family member or friend. In 2012, 28% of caregivers were
“sandwiched” between caregiving and childrearing, having at least one child
under 18 years of age living at home.
Looking into the Future
The elder care landscape in the coming decades2,3
Figure 2 describes the dramatic increases in the population of people 65 years of age
and older over the coming decades. These demographic changes will have a major
impact on the responsibilities associated with family care. These changes will also shape
the profile of clients moving through pharmacy practice, notably with increases in family
caregiver presence.
Figure 2: Elder Care on the Rise
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Adapted with permission from references 9 and 10.
Common Caregiving Responsibilities • The intensity and nature of tasks assumed by caregivers is closely correlated to
the type of illness or disability and the degree of patient autonomy; as the
patient’s independence declines, the caregiver’s commitments will increase.
• Caregiving can include a wide array of helping activities, varying in levels of
intensity and degree of physical and emotional demands on the caregiver.
• The majority of caregivers report providing transportation to their primary care
receiver, making it the most frequent type of care provided.1
• Half of caregivers report being engaged in tasks of daily living inside the patient’s
home, such as cleaning, cooking, bathing, etc.1
• Caregivers are commonly called upon to assist with medical treatments, including
supporting medication management (63%).1
• By virtue of its longevity and intensity, chronic care often calls upon the
engagement of families the most. For example, in the care of older adults at
home, it is estimated that families assume 70% to 75% of the care load.4 In the
case of caring for a family member with a developmental disability, more than
50% of caregivers spend 10 hours or more per week providing care.1
The Continuum of Care Figure 3 describes how the intensity and nature of caregiving impacts the ability to plan
and manage. It is particularly relevant in describing how varied care experiences are and
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the necessity for caregivers to be highly adaptable.
Figure 3: Continuum of Care: Intensity, Predictability and Controllability5 Source: This figure was duplicated with the permission of the Vanier Institute for the Family.
The Impact of Caregiving on Caregivers The negative impact of caregiving on caregivers is well researched and documented.6
The common health and social implications for caregivers are:
• Physical
• Psychological
• Social
• Financial
Physical
The physical demands of caregiving can have a long-term impact on caregiver health.
Tasks of daily living, hands-on medical care, transportation to and from appointments,
or reduction in sleep hours, coupled with the stress and strain of caregiving, can worsen
the physical health of the caregiver, or exacerbate an existing medical condition.6
Psychological
Caregivers can experience a wide range of emotions: from shock, fear, sadness, guilt and
hopelessness, to exhilaration from a positive treatment outcome. The spectrum of
feelings can be quite broad but often very intense.
Caregiving can significantly alter caregivers’ expectations, hopes, and dreams as they
figure out how to adjust to a new normal. The tension between what they hoped and
planned for versus their reality is difficult to reconcile.
Depression and anxiety are common among caregivers. Over half (55%) of caregivers
feel worried or anxious as a result of their caregiving responsibilities. Other common
symptoms associated with providing care include feeling short-tempered or irritable
(36%) and feeling overwhelmed (35%).1
Social
Social disconnection and isolation can have a significant impact on a caregiver’s health
and experience of care. Caregiving can take a lot of time, forcing caregivers to choose
between their care commitments and time with friends and family. Also, the stigma
associated with certain health conditions that either cause the caregiver to feel ashamed
or cause the caregiver’s social networks to withdraw when they are faced with the
unknown; e.g., a caregiver is assisting a family member with Alzheimer’s disease.
Alzheimer’s disease and other dementias can cause behaviours, such as physical or
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verbal aggression, that are considered socially inappropriate. Caregivers may withdraw
from friends, fearing that their loved one’s behaviour will embarrass them. This isolation
means that they may have limited access to peer support networks, leaving them feeling
under-supported, invisible, and unrecognized. Social isolation and loneliness have been
associated with negative psychological effects such as depressed mood, and decreased
quality of life and life satisfaction.7
Financial
Increasing medical and out-of-pocket expenses, coupled with reduction in work hours
due to competing care commitments, can create significant financial strain on
caregivers. Immediate and longer-term financial outcomes for caregivers include
reduced or foregone income, lost employment benefits, reduced pension benefits,
reduced savings and investments, and reduced overall financial security.1
Caregivers make up 30% of the paid labour force in Canada, and annually, more than
550,000 leave work to provide care.8
Pharmacy practice tip
Caregivers are usually the last ones to acknowledge that their health is suffering – most of their caring is projected towards the patient. Regular check-ins, which might be as simple as asking the caregiver how he/she is doing, can go a long way towards helping caregivers become aware of the importance of their own wellness. It may also increase the likelihood that they will share their health concerns with you in future interactions.
Asking caregivers how they are doing can be a powerful way to start to build the trust that is so critical to a therapeutic relationship.
My Life as a Caregiver – Video Testimonial This testimonial highlights one caregiver’s journey and the challenges she faced.
To view the video, return to the course page on HealtheLearning.ca and open the interactive Module 1 lesson.
Critical Factors Influencing the Care Experience The challenge of developing a global response to the experience of care is that each
situation is unique. So many factors will predict how caregivers see themselves and
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evolve through the care journey. Some of the more common factors that will influence
the experience of care for both the caregiver and patient are described here.
Financial means
Caregivers with the means to access private care may experience less strain or
commitment conflicts as they may be willing to pay for additional assistance through
private channels.
Those without financial means will rely on public services that are often limited in
availability or inaccessible in the short term due to wait times. Lower or mid-level
income individuals may also have fewer options when deciding if they can leave work to
provide care.
Ethno-cultural and religious values shaping perceptions and attitudes towards care
Religious and cultural norms influence how families provide and divide care and
perceive the overall experience. For example, in certain cultures, women are assumed to
be the best source of care and the greatest responsibility falls on their shoulders.
Pharmacy practice tip
Attitudes towards care are often shaped by filial, cultural, and religious values. Professionals can inadvertently project expectations or value systems onto a caregiver about how he/she should be involved in care. Meeting caregivers where they are in a spirit of non-judgment helps to build a trusting relationship. It can be helpful to take a minute to understand how your own value systems influence your understanding of caregiving or filial expectations. This reflection can help mitigate a potential bias when dealing with caregivers.
Current and past family dynamics
A history of family conflict can affect how a caregiver and patient relate to one another;
pre-existing tensions may become more pronounced under stressful circumstances.
Abuse of the patient perpetrated by the caregiver is more common in situations of
relational conflict.
Availability and involvement of extended family
The experience of a single child versus a caregiver with a large extended family will have
a significant impact on the burden of care. The reliance on a network of support can
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help curb caregiver strain by allocating a range of responsibilities across different family
members.
Inversely, the involvement of many family members can also create disagreements
around care management or end-of-life planning.
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Passive or active disposition of the caregiver
Caregiving is an experience of adversity for many. The resilience of the caregiver will
influence his/her capacity to manage.
When faced with a major life challenge, some caregivers will shut down, as they are
unable to cope with the scale of the problem. Others will become proactive advocates.
The disposition of the caregiver will influence his/her sense of mastery over the situation
and affect how and if he/she seeks help.
Understanding Caregiver Needs Caregiver needs can be very eclectic and change with time. The following describes
common needs expressed by caregivers that relate to pharmacy practice:
• Managing symptoms
• Knowing when to report a problem with treatment
• Transitioning from hospital to home
• Equipment in the home to support the patient
• Understanding the medical condition, treatments, and prognosis
• Communicating information about the condition to the patient
• Supporting adherence and dealing with resistance
• Validation and reassurance that they are managing the medications correctly
• Disposing of medications safely
What We Learned from Caregivers – Video This video examines the relationship between caregivers and pharmacists.
To view the video, return to the course page on HealtheLearning.ca and open the interactive Module 1 lesson.
Caregiver Self-Identification Caregivers often have difficulty seeing themselves as “caregivers.” Many simply identify
with the filial role, i.e., “He is my son” or “I am his wife.” What contributes to this?
1. Societal expectation
As a society, we assume that families should provide care, thus we provide them
no distinct designation that recognizes the extraordinary nature of their work.
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2. Filial duty
Despite how difficult and complex care can be, we assume that being good to a
loved one is an extension of an inherent commitment. Even when the role
exceeds typical family roles, many individuals simply resist the label of “caregiver”
– it can feel uncomfortable.
3. Lack of recognition
Everyone knows the “patients.” They have health files that track their status and
so many stakeholders looking after their interests. Caregivers are often treated as
invisible; their work is under-recognized. Societal attitudes are shifting, but many
still move through the healthcare system unnoticed.
Pharmacy practice tip
As healthcare providers, you can support caregivers in the self-identification process. Recognition and validation of their unpaid work can be deeply reaffirming and can be an important catalyst for a conversation about their status, health, and wellness.
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Key Learning Points 1. Caregiving is an issue that crosses the lifespan.
2. Caregiving is both a social and health issue affecting millions of Canadians.
3. While there are common experiences that affect all caregivers, the experience of
care can be quite unique.
4. One of the challenges in supporting caregivers is that they often do not self-
identify as caregivers.
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References 1. Hango D. Support received by caregivers in Canada. Statistics Canada.
https://www150.statcan.gc.ca/n1/pub/75-006-x/2020001/article/00001-eng.htm.
Accessed February 24, 2021.
2. Statistics Canada. Seniors. 2011. https://www.statcan.gc.ca/pub/11-402-
x/2011000/chap/seniors-aines/seniors-aines-eng.htm. Accessed February 24,
2021.
3. Stonebridge C, Hermus G, Edenhoffer K. Future Care for Canadian Seniors: A
status quo forecast. The Conference Board of Canada. November 3, 2015; 102
pages. https://www.conferenceboard.ca/e-library/abstract.aspx?did=7374.
Accessed February 24, 2021.
4. Canadian Caregiver Coalition and Centre de sante et de services sociaux
Cavendish. Beyond Recognition – Caregiving and Human Rights in Canada: A
Policy Brief. March 2015. http://www.carerscanada.ca/wp-
content/uploads/2021/03/CCC_Policy_brief_Human_rights_EN.pdf. Accessed
February 24, 2021.
5. Battams N. Family Caregiving in Canada: A Fact of Life and a Human Right. The
Vanier Institute of the Family. 2016. http://vanierinstitute.ca/family-caregiving-in-
canada/. Accessed February 24, 2021.
6. Turcotte M. Statistics Canada. Family Caregiving: What are the consequences?
2015. https://www.statcan.gc.ca/pub/75-006-x/2013001/article/11858-eng.htm.
Accessed February 24, 2021.
7. Bowling A. Social networks and social support among older people and
implications for emotional well-being and psychiatric morbidity. Int Rev
Psychiatry 1994; 6(1): 41-58.
8. University of Alberta. Research on Aging Policies and Practices. Combining care
work and paid work: Is it sustainable? September 2014; 1-6.
9. Statistics Canada. An aging population. October 2016.
https://www150.statcan.gc.ca/n1/pub/11-402-x/2010000/chap/pop/pop02-
eng.htm. Accessed February 24, 2021.
10. Sanmartin C. Research highlights on health and aging. Statistics Canada. Released
July 28, 2016. https://www150.statcan.gc.ca/n1/pub/11-631-x/11-631-x2016001-
eng.htm. Accessed February 24, 2021.