1. viewpoint
IF Kai Tiaki Nursing New Zealand * vol 20 no 10 * November 201428
Integrating care for caregivers
By Noel Daniel
Family caregiving can be stressful and exhausting. One nurse has
developed a model designed to help caregivers protect their own
physical and mental well-being, so they can care for others safely.
A
caregiver is anyone who shares respon-
sibility for another person’s health,
well-being and safety over time. Family
and other carers expend tremendous amounts
of physical, mental, emotional and spiritual
energy while caring for someone with a life-
limiting illness. Inadequate knowledge and
skills can make caregivers unfamiliar with the
type of care they must provide or the amount
of care needed. As a result, caregivers often
neglect their own needs to assist the person
who is unwell, causing deterioration in their
own health and well-being. Health profes-
sionals have a responsibility to support family
and other caregivers by providing education
and counselling to promote their well-being.
This, in turn, brings benefits, not only to the
caregiver, but also to the patient and the
health-care team.
Most patients have families who provide
some level of care and support. In the case
of older adults and people with chronic dis-
abilities of all ages, this “informal care” can
be substantial in scope, intensity and dura-
tion. Family caregiving raises safety issues
in two ways that should concern all nurses.
Firstly, caregivers are sometimes referred to as
“secondary patients”, who need and deserve
protection and guidance – their caregiving
demands place them at high risk for injury and
adverse events. Secondly, family caregivers are
unpaid providers who often need help to learn
how to become competent, safe, volunteer
workers who can better protect their family
members – the care recipients – from harm.
I have developed a model of integrated care
which I hope will help nurses and other health
professionals guide caregivers, whether family,
friends or care staff, to protect and enhance
their own physical, emotional, mental and
spiritual well-being. Taking care of self is one
of the most important things a caregiver can
do for themselves.
The nine domains of my integrated care
model are illustrated in the diagram oppo-
site: education, recreation, nutrition, sleep,
exercise, emotional and psychological support,
spirituality, communication and counselling.
This model operates through the four distinct
levels of maintaining well-being – physi-
cal, emotional, mental and spiritual – and
promotes balance, harmony and health to the
individual carer.
Education: Training and education are vital
to ensure the aged-care workforce has the re-
quired skills and knowledge to be safe in their
practice, able to follow career and professional
development pathways, and to meet national
and contract standards, and the changes and
challenges of the future.1
Family caregivers often feel unprepared to
provide care, have inadequate knowledge to
deliver proper care, and receive little guidance
from formal health-care providers. Nurses and
family caregivers sometimes disagree about
specific needs or problems during hospital
admission or discharge, in part because
nurses are often unaware of the strengths and
weaknesses of both the patient and caregiver.
Family caregivers may not know when they
need community resources, and then may not
know how to access and best use available
resources. As a result, caregivers will often
ignore their own needs to assist their family
member, compromising their own health and
well-being.
Caregivers can place their family members at
risk in two ways, and both situations are pre-
ventable. First, if caregivers do not have the
knowledge and skills to perform their work,
they may unintentionally harm their loved
one. This lack of knowledge and competence
can be improved through caregiver education
and support. A second concern is that the de-
manding work of caregiving can put caregivers
at risk of harming those they are caring for,
particularly caregivers of persons with cogni-
tive impairments. Caregivers who are at risk of
depression while caring for spouses with sig-
nificant cognitive or physical impairments are
more likely to engage in neglectful or abusive
behaviours, such as screaming and yelling,
threatening to abandon or use physical force,
withholding food, hitting or handling roughly.
An important example of the potential for
harm is in administration of medications.1
Caregivers need education to recognise both
classic and atypical adverse drug effects they
may see as their family member’s condition
changes. Education can help them develop
the critical-thinking skills to enable them to
manage these potential problems. Nurses can
assist caregivers by providing education and
skills training. They can also offer support
through home visits, special clinic sessions,
telephone access for questions and reassur-
ance, innovative strategies such as telephone/
computer or “chat groups”, and opportunities
for respite care.
Those receiving care can also benefit from
education and information. If they understand
the burden and distress experienced by their
caregiver, they can work with their caregiver
to improve their mental health. Care recipients
can also be educated about interventions
specifically for depression, anxiety and stress,
and encourage their caregiver to participate
in these.
Recreation: Recreation can improve caregiv-
ers’ physical and emotional health. Stud-
ies have linked caregiver stress specifically
to reduced recreation time, so it is vitally
important caregivers’ recreational needs are
explored.2
The basic elements of recreation are: enjoy-
ment, relaxation, freedom of choice, intrinsic
motivation, control and challenge. Recreation
offers opportunities to develop or enhance
social relationships, to be self-expressive,
develop skills and to become self-actualised.
The key elements of recreation promote mental
health, in particular psychological and social
harmony and integration, quality of life, gen-
eral well-being, individual empowerment and
effective personal adaptation. Recreational
activities can offer a break from a stressful
situation; they can also enhance a person’s
positive mood or reduce their negative mood.3
The ability to relax and find time to partici-
pate in activities that bring joy and satisfac-
tion can decrease stress and depression, and
promote increased psychological well-being.
spirituality
Noel Daniel de-
veloped his model
earlier this year after
experience working
as a caregiver and
completing a demen-
tia care course.

2. 29Kai Tiaki Nursing New Zealand * vol 20 no 10 * November 2014
viewpoint
cal and mental well-being. Everyday physical
activities help caregivers maintain, or at least
partly restore, endurance, balance, strength
and flexibility. Exercise promotes better sleep,
reduces tension and depression, increases
energy and alertness, maintains and improves
physical strength and fitness, and helps pre-
vent and manage chronic diseases.
Emotional and psychological support:
Having positive social interactions can help
psychological adjustment. Caregivers who lack
good social support from family and friends
are often under heightened stress. Family
conflicts, isolation and loneliness further
exacerbate caregivers’ stress. A caregiving role
can decrease one’s social support and social
networks, resulting in loss of one’s social
life, which may lead to depression. Feel-
as advocates and/or mediators. Nurses need to
communicate effectively with caregivers to de-
velop cost-effective plans of care and achieve
positive client outcomes.
Communication is crucial across all health
settings. The emergency department, hospital
discharge planning, assisted living facility
admission, skilled nursing facility discharge,
and home health-care admission and discharge
processes are all critical points of interaction.
During these interactions, health profession-
als, patients and family caregivers can benefit
from respectful, high-quality communication.
In the managed care environment, provid-
ing specific care information, along with
emotional support, can help spouses of frail
older adults better manage their caregiving
situation.
Counselling: Counselling and ongoing support
for the caregiver and family members, includ-
ing both individual and family counselling,
can be very useful.7
Nurses can encourage
caregivers to join support groups or get tele-
phone counselling when needed. Understand-
ing the need for counselling, when necessary,
helps caregivers maintain quality of care
and positive outlooks. Counselling helps the
caregiver improve his/her communication and
problem-solving techniques, and learn various
behavioural management strategies.
Helping caregivers thrive
Caregivers are in a unique position to provide
care for the physical, mental and spiritual
needs of parents and other loved ones. Howev-
er, who cares for the caregiver’s needs? Care-
giving is a mentally and physically demanding
(and often thankless) task that takes its toll,
not only in aching muscles and bones, but
also in the psyche and spirit. Even though
caregivers go through periods of burnout,
depression, and frustration, most continue to
give their utmost to their care recipients.
My integrated model of care is designed to
remind caregivers of the tools they need to in-
crease their self-care and confidence to handle
difficult situations, emotions and decisions.
These tools may not eliminate the challenges
of caregiving, but they may help caregivers
minimise the negative impact caregiving can
have on their lives, help them seek and find
resources, and show them how to thrive as
individuals. •
The integrated care for caregivers model, developed by Noel Daniel.
Noel Daniel, RN, BScNurs (Manipal University,
India), works at Oakland Life Care Rest Home and
Hospital in Tauranga. This article is based on a pre-
sentation he gave at the NZNO national gerontolgy
conference in Auckland earlier this month.
• References for this article are on p41.
As they assume this night-time supervisory
role, caregivers experience more worry, a loss
of personal space and sleep disruptions. These,
in turn, contribute to loss of energy, changes
in mood, decreased desire to connect with
others, and decreased motivation to carry out
routine tasks or self-care.
Teaching caregivers how to manage specific
patient problems can improve the caregivers’
well-being, eg teaching them how to improve
their family members’ night-time insomnia
through daily walks and exposure to light can
benefit both the caregiver and care recipient.4
Exercise: Physical activity plays an essential
role in ensuring health and well-being. Exer-
cise is one of the basic components of good
health, which minimises the likelihood of
excessive stress.5
Finding time for regular
exercise is very important for overall physi-
tion in social leisure activities is a good way
to meet new people, providing psychological
benefits at the same time.
Spirituality: Spiritual well-being may provide
a buffer against stress for caregivers. Higher
levels of spirituality are associated with lower
psychological distress and improved well-
being for caregivers.7
In addition, maintaining
faith and finding meaning have been shown
to mitigate the adverse effects of caregiv-
ing stress on mental health.8
Spirituality can
fortify caregivers against hopelessness, help
caregivers derive meaning from their family
member’s illness, and provide an existential
perspective on hope and suffering.
Communication: Good communication skills
are essential to successful caregiving. Care
providers who understand and practise the art
of good communication can play a pivotal role
ing supported by family
and friends can improve
psychological responses to
stress and boost the care-
giver’s sense of well-
being.6
Encouraging caregiv-
ers to network with other
families and linking them
with formal resources can
help augment informal
sources of social support.
Caregivers can be encour-
aged to search for national
caregiver groups and dis-
ease-specific organisations
online. Caregivers with a
large number of friends
and close relationships
report greater satisfaction
with their social networks
and higher levels of overall
life satisfaction.6
Participa-
physical
emotional
spiritual
Care for caregivers
Enhancing health and well-being
mental
Nutrition: Eating nutritious food is the
most basic way to care for your health and
well-being and, ultimately, to be a better
caregiver. Deterioration in caregivers’ health
and nutritional status may put caregivers at
risk for chronic disease, diminish their ability
to provide care, and impair the quality of life
of both caregivers and care recipients. Food
affects mood, overall health and the immune
system. Nutrition education may help reduce
stress and maintain caregivers’ health and
well-being.
Sleep: Caregivers may suffer severe fluctua-
tions in sleep patterns over time, which may
exacerbate depression and symptoms of
chronic illnesses. Night-time wandering by
people with cognitive disabilities present
unique safety challenges for family caregivers.
education
recreation
nutrition
sleep
exercise
support
communication
counselling
spirituality