A Letter From Home
June. 2015
Working with Family Caregivers
Working in home care, you often don’t have
just one client; you must also work with the
client’s family caregivers. Very often the family
caregiver is an older spouse. Sometimes, the
primary caregiver is an adult child or other
family member. Regardless, statistics show
there are 65.7 million informal caregivers,
which make up 29% of the US adult population
providing care to someone who is ill, disabled,
or aged. The close relationship between the
caregiver and care recipient involves emotions,
experiences, and memories, which can place a
caregiver at higher risk for psychological and
physical illness. Sometimes, these effects may
create a harmful or less than ideal environment
for your client. Not to mention, you may be put
in situations with feuding family members who
don’t agree on the care that is to be provided.
So what are you to do?
First, let’s look at the statistics around informal
caregivers:
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On average, caregivers spend 20.4
hours per week providing care
66% of caregivers are women
Older caregivers who are over 65
provide 31 hours in an average week on
caregiving
17-35% of family caregivers view their
health as fair to poor. 17% of caregivers
say their health has worsened as a
result of caregiving responsibilities
40-70% of family caregivers have
clinically significant symptoms of
depression
As the statistics demonstrate, being an informal
caregiver is difficult. Becoming a caregiver is
often not chosen, but develops as an expected
obligation or because of proximity. Very often,
it is the person who lives closest to the parents
who end up being the primary caregiver. What
starts out as providing a little help with errands
and tasks around the house often develops to
many hours and more intense care needing to
be provided. Family members who provide
care due to duty or obligation have been shown
to have more stress and psychological issues
with caregiving and develop more feelings of
resentment. Caregivers who perceive they have
choices about caregiving will have more success
adapting to the experience than caregivers who
see no choices.
Another major area of conflict for caregivers is a
result of disagreeing family members, often
children. Caregiving lasts a long time. Family
members will be required to contend with
unfamiliar and unpredictable situations. If the
care recipient had been the one who provided
leadership and stability to the family, the family
will be more impacted by the experience.
When a family is dealing with a crisis, very
often, old established roles reemerge. Longstanding resentments or jealousy may
redevelop. The family that grew up in conflict
will often have a similar response to the
caregiving role. Although siblings grow up in
the same household, they each view their
current situation through their own lens. Also,
gender may have an effect on how a family
responds. In many families, the daughter is
expected to take on more of the hands-on
caregiving tasks, while males are expected to
help with the financial and legal aspects of care.
A Letter From Home
June. 2015
Working with Family Caregivers
There is also a difference depending on distance
from the care recipient. The adult child living
closest to the parents or care recipient usually
takes on the hands-on care and tasks. The far
away caregiver assumes that the sibling that is
closest can handle the situation and has no idea
about how much time is involved. When the
distance caregiver does show up, they voice
concerns for the person or lay a guilt trip on the
person doing the majority of caregiving. For out
of town caregivers, they may choose to live in
denial about a parent’s condition as they want
to keep living their own lives.
Whether the denial is the subconscious need to
ignore the fact that a parent is declining or they
want to pretend that caring for a declining
parent isn’t all that big a deal so they don’t have
to get involved, denial is rampant. The absent
sibling acknowledges the parent is ill, but
ignores the fact that caregiving takes a huge toll
on the caregiver. The hands on caregiver can
also experience denial. They may begin to take
on tasks that the care recipient used to do to
cover up the limitations. Denial, an effective
coping mechanism, often protects someone
until they have time to accept the harsh reality.
However, when caregivers remain in a state of
denial, the care recipient may be in danger of
developing stress or undue burden.
Guilt is often a normal reaction for the
caregiver. Guilt that they are not doing enough
or they are not doing things well enough. Much
guilt can arise from family conflicts unresolved
over the years. Family members may dwell on
past regrets, wishing they could only do things
over. It is also not uncommon for family
members to wish that their loved one would die
and then feel guilty about that wish. If the care
recipient has memory loss, as many do, there is
another type of guilt; guilt for not always being
truthful. These “white lies” are sometimes a
source of guilt because family members believe
they are being dishonest with their loved one,
tricking her or lying to them.
Caregiving is associated with conditions that
foster the development of depression and
significant levels of stress. Chronic stress
contributes to the development of depression.
Physical health problems can precipitate or
worsen caregiver depression. Often seriously
depressed people don’t know they are
depressed. Caregiving research indicates that
40-70% of caregivers are affected by
depression. Depression is not determined by
situations alone. And its symptoms go beyond
feeling sad or hurt. Unlike short-lived
symptoms related to upsetting situations,
symptoms of depression persist. Depressed
caregivers may use virtually all of their physical
and emotional reserves to care for loved ones.
Depression stalls problem solving.
Frequently, depressed persons say they don’t
want help because they don’t believe anything
will help or they aren’t worth helping.
Depression causes a collapse in or ability to
think and act. Depressed caregivers that
recognize they are depressed may have
difficulty making the effort needed to get help.
The majority of caregivers become depressed
because of factors associated with the
caregiving situation, chronic stress, and the
same human limitations all of us
A Letter From Home
June. 2015
Working with Family Caregivers
have. Caregiver depression has nothing to do
with physical, emotional, or moral weakness.
Some caregivers try ineffective coping
mechanisms, such as using alcohol and drugs to
feel better. Without treatment, caregiver
depression does not improve
Another family complication that is increasing is
the emergence of step families involved in
caregiving. Nearly half a million Americans over
65 remarry each year, according to the US
census bureau. That number is projected to
keep increasing, meaning more and more family
caregivers will find themselves in situations
where they are either looking after an aging
stepparent or having to discuss and manage a
loved one’s care with stepfamily members.
Blended families can cause discord because
step relatives haven’t’ had decades to bond
with one another. Research shows that women
who remarried and were caring for a husband
often experienced increased strain from
uncooperative or unhelpful stepchildren. Very
often, there is disagreement between the stepparent and the care recipient’s children and
how to provide the care that is needed.
Elderly spouse caregivers who experience
caregiving related stress have a 63% higher
mortality rate than non-caregivers of the same
age. Female caregivers average three times as
many stress symptoms, take more tranquilizers
and antidepressants, and report substantially
less participation in social and recreational
activities. A recent study found that older men
living with wives with dementia had an almost
12 found increased risk for developing
dementia; and elderly women whose husbands
developed dementia had a 4 fold increased risk.
The development of dementia is thought to be
a factor related to the stress of caregiving.
Over half of caregivers indicate that their
decline in health comprises their ability to
provide care. Studies demonstrate that
caregivers have diminished immune response,
which leads to frequent infection and increased
risk of cancers. Caregivers have a 23% higher
level of stress hormones and a 15% lower level
of antibody responses. Caregivers also suffer
from slower wound healing. Caregiver’s exhibit
exaggerated cardiovascular responses to
stressful conditions which put them at greater
risk than non-caregivers for the development of
cardiovascular syndromes, such as high blood
pressure or heart disease.
With all the stress caregivers often experience,
why don’t they ask for help? Often, they don’t
want to be a burden and many may feel it is
their “cross to bear”. Caregivers may also not
know how to ask to get help or may expect
others to offer. What we know with most
caregiving journeys is that it is a long and lonely
one. Very often, friends and family are helpful
and supportive in the crisis phase. But as
caregiving goes on, the amount of support
diminishes. Also, the caregiver’s primary
support person may have been the care
recipient. With the act of caregiving, very often
this relationship may change and the caregiver
loses their source of support.
Other barriers to family caregivers receiving
support include a lack of education. Many of
caregiving tasks are not intuitive for caregivers.
They don’t know the best way to assist in
providing the tasks of ADL’s or how to handle
A Letter From Home
June. 2015
Working with Family Caregivers
difficult behaviors as a result of cognitive
impairment. Research has demonstrated that
caregiver education in these areas significantly
reduces the stress level of caregivers. Another
barrier is financial. It is an economic burden to
provide care to a family member. If finances
are tight, in-home care may not be able to be
offered in the amounts required. This forces
the caregiver to take on more tasks than they
may be able to provide.
So, with all the guilt, family dynamics, and
physical and psychosocial toll that caregiving
often creates, it is no wonder that we find
family caregivers difficult. They may lash out at
you or find fault at the way you are helping in
the home. While this is hard to take, try to
keep in mind all that the family caregivers are
often dealing with. Recognize the stress, grief
and possible depression they may be
experiencing.
To recognize caregiver stress, there is a tool
that can be given to the family caregiver as a
self-report. This tool is found at:
http://www.healthinaging.org/files/documents
/caregiver.self_assessment.pdf
This assessment tool can be provided to family
caregivers if you are concerned about their
health and well-being as a result of their care
responsibilities. It contains 18 questions and
they are to be answered with a yes/no. Scoring
for the tool helps the caregiver understand if
they are experiencing stress. Some of the next
steps that may be indicated by the tool include:
recommending seeing a doctor for a check-up,
having some relief from caregiving or joining a
support group for caregivers. This
questionnaire was originally developed and
tested by the American Medical Association.
Some of the questions on the tool include:
During the past week, I have:
1. Had trouble keeping my mind on what I
was doing
2. Felt that I couldn’t leave my relative
alone
3. Had difficulty making decisions
4. Felt useful and needed
5. Felt lonely
6. Been upset that my relative has
changed so much from his/her former
self
7. Felt a loss of privacy and or personal
time
8. Been edgey or irritable
9. Had sleep disturbed because of caring
for my relative
10. Had a crying spell
So, what can you do to assist the family
caregiver? Most importantly, you can listen.
Caregivers need to have their feelings validated.
You may say something such as, “I know it is
hard to keep this up, what is hardest for you
now? This may get the caregiver to express
what they may need help with and perhaps you
can assist. It is important though, to offer
suggestions only when asked. If you make
suggestions without being directly asked for
your input, it is often taken as criticism. Finally,
you can be patient with the caregiver. When
someone is stressed, they often are irritable
and quick to anger. By recognizing this, you can
remain calm and compassionate rather than
reacting in a negative manner.
A Letter From Home
Working with Family Caregivers
Family Caregiver Quiz:
Answer True or False:
1.Family caregivers experience more depression
as a group than non-caregivers
True
or
False
2. Caregivers who perceive they have a choice
in performing caregiving duties have less stress
then those performing these duties out of a
perceived obligation
True
or
False
3.Denial is a coping mechanism used by many
family caregivers
True
or
False
4. Caregivers often ask for help when they are
over-stressed
True
or
False
5.Elderly spouse caregivers who experience
caregiving related stress have a 63% increased
mortality rate than non-caregivers of the same
age
True
or
False
June. 2015
A Letter From Home
Working with Family Caregivers
Quiz Answers:
1.
2.
3.
4.
5.
True
True
True
False
True
June. 2015