Family Caregivers Who are they Why Should We Care about them
[Music]
family caregivers
who are they and why should we care
about them
family caregivers are those who provide
care this can be emotional
functional financial what is unique
about this caregiving
is that it has been provided in context
of illness
disability or age related needs
they mostly family members they can also
be friends
or neighbors what is important is to be
aware of the distinction between family
members
and family caregivers let me give you my
example
i’m married we have two girls we are
family we support each other
however it is my mother who provided 24
7 care for my alien father for eight
years before he passed away last
september
is what made her a family caregiver
i can give many examples from my
practice it is the husband who provides
round-the-clock care to his wife who
suffers from alzheimer’s disease
and rushes out for a few hours once a
week to run errands
who is a family caregiver it is the
daughter who goes
over to sleep every night at her
mother’s as her mother suffers from
paranoia and gets scared at night
who is a family caregiver it is the son
and daughter
who have split up the responsibilities
of caring for their father
who is housebound so he can continue to
live in his home in a remote rural area
which make them family caregivers the
examples are
endless and the valuable role
of this family caregiving has been
very apparent during the covet 19
pandemic
during this pandemic we as a society and
the healthcare system have relied
heavily on family caregivers to support
care of people in their homes
in our attempts to reduce admission to
hospitals to long-term care
after discharge from hospitals and
particularly during periods of isolation
family caregivers have been expected to
take on many tasks
previously provided by healthcare system
to address a public health need
to prevent the spread of this virus
what does family caregiving look like
family caregivers provide
a wide array of activities they help
with basic functions such as dressing
bathing
feeding toileting or could be supporting
other essential needs such as
housekeeping
preparing meals providing transportation
they often provide emotional support
companionship
socialization their support can be in
the form of
financial management
the one area i would like to emphasize
which is particularly challenging for
family caregivers is providing support
in the area of healthcare which can be
a whole array of needs such as
medical appointments tests supervising
medications monitoring symptoms
managing behaviors and crises navigating
the systems of care
and advocacy why does family caregiving
become
burdensome as a society we believe in
caregiving
it comes from a place of love duty
reciprocity
it can be fulfilling and rewarding
however
it is the loading length of care that
can have negative consequences
it is also important to recognize that
while there can be many family members
and friends it may be just one or two
providing most of the care
there is considerable evidence that
family caregiving can have significant
negative consequences
it can cause emotional distress
isolation can’t give a burnout it can
result in mental illnesses such as
anxiety depression and even suicidality
it can have a negative impact on the
caregiver’s physical health and
decreased longevity
it can be a reason for enormous
financial hardship
60 of family caregivers in canada are
working it can lead to restriction of
work hours and
exit from the workforce and sometimes
all together it can affect their careers
income and aspirations let’s take a
moment
and look at the extent of caregiving in
canada currently
25 of canadians are caregivers there are
of all ages providing care to all ages
they provide 1.5 billion hours of care
10 times more than provided by paid care
providers
replacement costs of which amount to
over 65 billion dollars a year
they’re rightfully recognized as the
shadow workforce of a society
and the backbone of our healthcare
system and this that will need support
we need family caregivers to provide and
sustain care as the population ages
there are increasing numbers of us
living longer
with chronic and progressive illnesses
we also know
that majority of canadians prefer to
live at home as long as possible and
depend on family caregivers to support
them
at the same time our healthcare system
is trying to reduce the costly and
avoidable acute and facility-based care
by shifting care to the community which
means marketing
care needed from family caregivers
in response to this shift many
well-meaning initiatives in research
are focused on training family
caregivers to provide care
with the intent of sustaining care what
we have
not done is asked what is all this doing
to the health and well-being of family
caregivers
family caregivers are saying to us that
you’re increasing
the load of care and adding to their
stress they are not saying
that they want to stop caregiving they
are saying stop trying to build a better
caregiver
instead build a better system
around us to support us i was on the
same path
being a care of the elderly physician i
was very confident in my interactions
with family caregivers i was engaged
with them in
my assessments and implementation of
recommendations
it was 2013 that i had an awakening for
two major reasons
but then my parents had immigrated to
canada and i found myself providing
considerable support to them
even though it was my mom who was the
primary caregiver
i found myself supporting them in a
myriad of ways
taking them to medical appointments
taking them to specialists getting
various tests done
picking up medications trips to
community physio addressing equipment
needs
and then running errands and taking
multiple calls from them during the day
i became frustrated particularly when
navigating the healthcare system
i became angry and i regretfully
directed my anger towards my mother
i was stressed and recognized that i was
failing to come at about the same time i
became the medical leader for home care
and in edmonton zone
and started to get a better idea of how
much we depended on family caregivers
to provide care i began to work with
fine community organizations such as
alzheimer’s society and caregivers
alberta
in how we could prepare family
caregivers to provide and sustain care
till one day i was asked
what are you doing for family caregiver
caregivers themselves
by the director of caregivers alberta i
was giving my usual feed
that i collaborate with them set up my
recommendation lay out my expectations
when i was pushed backwards have you
ever asked a family caregiver how are
they doing
i was completely nonplussed i realized
that i was purely
using the family caregivers
to care for my patients and i was not
thinking of the fair family caregivers
in that moment everything fell into
place my own experience my way of work
and it darned upon me that we have to do
a
much better job of supporting family
caregivers from within
the healthcare system that was 2013
and fortunately because of tremendous
support from
400 stakeholders
many of them family caregivers
themselves
healthcare professionals managers
policymakers researchers community
organizations
and government ministries we’ve explored
the role of healthcare systems
to support family caregivers we
recognize
that family caregivers are
unintentionally marginalized in our
healthcare system
which is mostly focused on patient care
we learned
throughout the clear project trajectory
the healthcare providers
underestimate the caregiver role in
stress and miss opportunities to prevent
and reduce that stress we uncovered
that there was a gap between what family
caregivers report they need from us and
in the preparation of the health
workforce
to meet those needs the overwhelming
voice was that we have a duty and a
responsibility from within
the healthcare system to support family
caregivers there was universal agreement
that we need to prepare our health
workforce to recognize and support
family care gurus
we point to term caregiver centered care
which is basically
person-centered care for family
caregivers and validating the core
competencies to train the health
workforce
to support family caregivers let me
share these with you
they begin with recognizing the
caregiver role identifying the family
caregivers their contributions and
consequences of caregiving
communicating with them in a timely and
respectful manner
partnering with them establishing
collaborative relationships and
including them
in care planning and decision making
fostering resilience in family
caregivers
is about identifying caregiver needs
from the airlines
facilitated by the healthcare providers
having identified their needs
then helping them with navigating their
health
and social systems of care accessing
supports
and overcoming barriers finally
enhancing the culture and context of
care which is about
role modeling and engaging in
self-reflection to build
meaningful relationships with family
caregivers we are very excited as we are
about to release the education
modalities and resources that will serve
to provide foundational education
to healthcare providers based on these
core competencies
these are going to be tested in all
healthcare settings primary care acute
care
home care supportive living long-term
care and training institutions
we are quite ambitious we are setting
the stage for all healthcare providers
in our healthcare system to be educated
as we recognize each and
everyone has a role to play in
conclusion
i would like to say that our ultimate
success
will be measured by family caregivers
when they feel supported
by us throughout their caregiving
journey