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