Geriatric Nursing
and Importance of Family Care

 

Family Care and Health Care Providers

    Family caregivers are a key link in providing safe and effective transitional care to
frail older adults as they move across levels of care (eg, acute to subacute)
or across settings (eg, hospital to home; Bauer, Fitzgerald, Haesler, &
Manfrin, 2009; Coleman & Boult, 2003; Naylor, 2003). Frail older adults
coping with complex chronic conditions are vulnerable to problems with care as
they typically have multiple providers and move frequently between and among
health care settings. 

    Incomplete communication among providers and across
health care agencies is linked to adverse outcomes and an increased risk of
hospital readmission and or length of hospital stay (Bauer et al., 2009).
Nurses in collaboration with family caregivers can bridge the gap between the care
provided in hospital and other settings and the care needed in the community. 

    Transitional care for friar older people can be improved if interventions
address family inclusion and education, communication between health care
workers and family, and interdisciplinary communication and ongoing support
after the transition.

Helping Role of Caregivers Take On the Care Giving 

    Helping the caregiver with the role acquisition process
is a critical nursing function that facilitates good transitional care.
Indicators of a healthy assumption of the care giving role are those factors
that either indicate a robust and positive role acquisition process or signal
potential difficulty with assuming the caregiver role. 

    When trying to ascertain
what those indicators might be, the following questions about the caregiver
role acquisition process can be posed: “What constitutes health during the role
acquisition process?” “What indicates a positive state of health during this
process?” and “What threats to health may occur as the process unfolds?”
(Schumacher, 1995, p. 219). 

    Because the role transition process unfolds over
time, identifying process indicators that move patient and family members
either in the direction of health or on the way to vulnerability and risk allow
early assessment and intervention to facilitate healthy outcomes of the
care giving role acquisition (Schumacher, 2005 ). If unhealthy role taking
transitions can be identified, then they can either be prevented or
ameliorated.

Who Is Likely to Be or Become a Caregiver?

    Being a family caregiver is a widespread experience in
the United States. Depending on how family care giving is defined, national
surveys estimate that anywhere from 22.4 to 52 million people provide care for
a chronically ill, disabled family member or friend during any given year
(National Alliance for Caregiving [NAC] & American Association for Retired
Persons [ AARP], 2004; Opinion Research Corporation (ORC), 2005; US Department
of Health and Human Services [USDHHS], 1998). 

    Reflecting an increasing trend,
44% of all family caregivers of adults older than age 18 are men, 56% are
women, and the majority is older than the age of 45 (ORC, 2005).Among the
primary family caregivers of older disabled or ill adults older than age 65,
the proportion of male caregivers is lower (about 32%), but this number has
increased from prior years (Wolff & Kasper, 2006). Primary family
caregivers are children (41.3%), spouses (38.4%), and other family or friends
(20.4%; Wolff & Kasper, 2006). 

    The most common caregiver arrangement is
that of an adult female child providing care to an elderly female parent
(USDHHS, 1998). Many caregivers are older and are at risk for chronic illness
themselves. Nearly 45% of all primary caregivers are older than 65 years of
age, with 47.4% of spousal primary caregivers being 75 years or older (Wolff
& Kasper, 2006). 

    National surveys indicate a trend in the United States of
care recipients being older and more disabled, and more caregivers acting as
the primary source of care (an increase from 34.9% on 1989 to 52.8% in 1999)
without help from secondary caregivers (Wolff & Kaspers, 2006). Family and
friends now provide more than 80% of all long-term care services in the
country.

 Impact of Unhealthy Care giving Transitions on Caregiver

    Care giving has documented negative consequences for the
caregiver’s physical and emotional health. Care giving related stress in a
chronically ill spouse results in a 63% higher mortality rate than their
non-care giving peers (Schulz & Beach, 1999). Stress from caring for an
older adult with dementia has been shown to impact the caregiver’s immune
system for up to 3 years after their care giving ends (Kiecolt-Glaser et al.,
2003). 

    Spouse caregivers who provide heavy care (36 or more hours per week) are
six times more likely than non-caregivers to experience symptoms of depression
or anxiety, for child caregivers, the rate is twice as high (Cannuscio et al.,
2002) . 

    In addition to men such health morbidity, family caregivers also
experience physical health deterioration. Family caregivers have chronic
conditions at more than twice the rate of non-caregivers (NAC & AARP, 2004;
USDHHS, 1998). Family caregivers experiencing extreme stress have also been
shown to age prematurely. It is estimated that this stress can take as much as
10 years off a family caregiver’s life (Arno, 2006).

Background And Statement Of Problem

Definitions

    Family care giving is broadly defined and refers to a
broad range of unpaid care provided in response to illness or functional
impairment to a chronically ill or functionally impaired older family member,
partner, friend, or neighbor that exceeds the support usually provided in
family relationships (Arno, 2006).

Care Giving Roles

    Care giving roles can be classified into a hierarchy
according to who takes on the bulk of responsibilities versus only intermittent
supportive assistance. Primary caregivers tend to provide most of the everyday
aspects of care, whereas secondary caregivers help out as needed to fill the
gaps (Cantor & Little, 1985; Pening, 1990; Tennstedt, McKinlay, &
Sullivan, 1989). Among caregivers who live with their care recipients, spouses
account for the bulk of primary caregivers, whereas adult children are more
likely to be secondary caregivers. 

    The range of the family care giving role
includes protective care giving like “keeping an eye on an older adult who is
currently independent but at risk, to full time. round-the-clock care for a
severely impaired family member. Health care providers may fail to assess the
full scope of the family care giving role if they associate family care giving
only with the performance of tasks.

Caregiver Role Transition

    Caregiver role acquisition is a family role transition
that occurs through situated interaction as part of a role-making process
(Schumacher, 2005). This is the process of taking on the care giving role at the
beginning of care giving or when a significant change in the care giving context
occurs. Role transitions occur when a role is added to or deleted from the role
set of a person or when the behavioral expectations for an established role
change significantly. 

    Role transitions involve changes in the behavior
expectations along with the acquisition of new knowledge and skills, Examples
of major role transitions are becoming a new parent, getting a divorce, and
changing careers. The acquisition of the family care giving role is a specific
type of role transition that occurs within families in response to the changes
in health of family member who has suffered a decline in their self-care
ability or health.

Indicators of Healthy Caregiver Role Transitions

The broad categories of indicators of healthy transitions
include subjective well-being. tole mastery, and well-being of relationships.
These are the subjective, behavioral, and interpersonal parameters of health
most likely to be associated with healthy role transitions (Schumacher, 2005).
Subjective well-being is defined as “subjective responses to caregiving role
transition” (Schumacher, 2005, p. 219). Subjective well-being includes any
pattern of subjective reactions that arise from assuming the caregiver role
within the boundary of the caregiving situation. 

    Examples of some of the most
important possible threats to subjective well-being could include role strain and
depression. Role mastery is associated with accomplishment of skilled role
performance and comfort with the behavior required in a new health-related care
situation. Examples of threats to role mastery, which indicate a vulnerability
and risk of unhealthy transitions are role insufficiency and lack of
preparedness. 

    Well-being of relationships refers to the quality of the
relationship between the caregiver and older adult. Examples of threats to
well-being of relationships are family conflict or a poor quality of
relationship with the care receiver.

Family Care Giving Activities

     Family care giving activities include assistance with
day-to-day activities, illness-related care, care management, and invisible
aspects of care. Day-to-day activities include personal care activities
(bathing, eating, dressing, mobility, transferring from bed to chair, and using
the toilet) and instrumental activities of daily living (IADL; meal
preparation, grocery shopping, making telephone calls , and money management:
NAC & AARP, 2004; Walker, Pratt, & Eddy, 1995). 

    Illness-related
activities include managing symptoms, coping with illness behaviors, carrying
out treatments, and performing medical or nursing procedures that include an
array of medical technologies (Smith, 1994). 

    Care management activities include
accessing resources, communicating with and navigating the health care and
social services systems, and acting as an advocate (Schumacher, Stewart,
Archbold, Dodd, & Dibble, 2000). Invisible aspects of care are protective
actions the caregiver takes to ensure the older adults’ safety and well-being
without their knowledge (Bowers, 1987).

Caregiver Assessment

    Care giver assessment refers to an ongoing iterative
process of gathering information that describes a family care giving situation
and identifies the particular issues, needs. resources, and strengths of the
family caregiver.

Risk Factors for Unhealthy Care giving Transitions

Gender

Female caregivers are more likely to provide a higher
level of care than men, which is defined as helping with at least two
activities of daily living (ADL) and providing more than 40 care hours per
week. Male caregivers are more likely to provide care at the lowest level,
which is defined as no ADL and devoting very few hours of care per week (NAC
& AARP, 2004; Pinquart & Sörensen, 2006). 

    A number of studies have found
that female caregivers are more likely than males to suffer from anxiety,
depression, and other symptoms associated with emotional stress caused by
care giving (Mahoney, Regan, Katona, & Livingston, 2005; Yee & Schulz,
2000); lower levels of physical health and subjective well-being than
care giving men (Pinquart & Sörensen, 2006); and are at higher risk for
adverse outcomes (Schulz, Martire, & Klinger, 2005). 

    In the pooled analysis
from the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) trials,
females had higher initial levels of burden and depression (Gitlin et al.,
2003).

Ethnicity

    Rates of care giving vary somewhat by ethnicity. Among the
US adult population older than age 18, 17% of White and 15% of African American
families are providing informal care, whereas a slightly lower percentage of
Asian Americans (14%) and Hispanic Americans (13%) are engaged in care giving
for persons older than the age of 50 (NAC & AARP, 2004). However, in
another national survey, which looked only at people older than 70 years old.
44% of Latinos were found to receive informal home care compared with 34% of
African Americans and 25% of non-Hispanic Whites (Weiss, González, Kabeto,
& Langa, 2005). 

    Ethnic differences are also found regarding the care recipient.
Among people aged older than 70 years who require care, Whites are the most
likely to receive help from their spouses: Hispanics are the most likely to
receive help from their adult children; and African Americans are the most
likely to receive help from a non family member (National Academy on an Aging
Society, 2000).

    Studies show that ethnic minority caregivers provide more
care (Pinquart & Sörenson, 2005) and report worse physical health than
White caregivers (Dilworth-Anderson, Williams, & Gibson, 2002; Pinquart
& Sörenson, 2005), African American caregivers experience less stress and
depression and get more rewards related to caregiving when compared with White
caregivers (Cuellar, 2002; Dilworth-Anderson et al., 2002: Gitlin et al.. 2003:
Haley et al., 2004; l’inquart & Sörenson, 2005). 

    However, Hispanic and
Asian American caregivers exhibit more depression than White caregivers (Gitlin
et al., 2003; Pinquart & Sorenson, 2005). In addition, formal services are
rarely used by ethnic minorities, which puts them at further risk for negative
outcomes (Dilworth-Anderson et al., 2002: Pinquart & Sörenson, 2005). A
meta-analysis of three qualitative studies examined African American, Chinese,
and Latino caregiver impressions of their clinical encounters around their care
receiver’s diagnosis of Alzheimer’s disease (Mahoney, Cloutterbuck, Neary,
& Zhan, 2005). 

    The primary issues identified in the analysis by Mahoney et
al. (2005) were disrespect for concerns as noted by African American
caregivers, stigmatization of persons with dementia as noted by Chinese
caregivers, and fear that home care would not be supported, were among Latino
caregivers. These findings indicate a need for greater culturally sensitive
communications from health care providers.

Income and Educational Level

    Low income is also related to being an ethnic minority
and being “non-White,” and the latter are risk factors for poorer health
outcomes. Persons who become caregivers may be more likely to have incomes
below the poverty level and be in poorer health, independent of care giving
(Vitaliano, Zhang, & Scanlan, 2003). Usually, educational level has been
combined with income in most care  giving studies, so there is a lack of data on
this variable. 

    One study (Buckwalter et al., 1999) reported that caregivers who
were less educated tended to report slightly more depression than those who
were better educated. This is consistent with the findings from the REACH trial
meta-analysis (Gitlin et al., 2003). In the meta-analysis completed by Schulz
et al (2005), caregivers with low incomes and low levels of education were more
at risk for adverse outcomes.

Relationship (Spouse, Non spouse)

    Past research conducted primarily among non-Hispanic
White samples has shown that care giving outcomes differ between non spouse (who
are mostly adult children) and spouse caregivers (Pinquart & Sörensen,
2004). In some literature reviews, authors noted that spousal caregivers have
reported higher levels of depression than non-spouses (Gitlin, Corcoran, Winter,
Boyce, & Hauck, 2001; Pruchno & Resch, 1989); intervention study found
spouses reported less “upset” with the care receiver’s behavior than
non spouses, who showed no decrease in “upset.” In a meta-analysis of care giving
studies, spousal caregivers benefited less from existing interventions than
adult children (Sörensen, Pinquart, & Duberstein, 2002).

Quality of Caregiver-Care Receiver Relationship

    Disruption in the care giver and care receiver
relationship (Croog, Burleson, Sudilovsky, & Baume, 2006; Flannery, 2002)
and/or a poor quality of relationship ( Archbold, Stewart, Greenlick, &
Harvath, 1990; Archbold, Stewart, Greenlick, & Harvath, 1992) can make
care giving seem more difficult even if the objective care giving situation (eg,
hours devoted to care giving, number of tasks performed) does not seem to be too
demanding. 

    Archbold et al. (1992) reported that the deleterious effects of lack
of preparedness on care giver strain faded after 9 months; however, a poor
relationship with the care receiver remained strongly related to caregiver
strain. Reporting a poorer quality of relationship with the care receiver was
associated with a 23.5% prevalence of anxiety and 10% prevalence of depression
in Mahoney and colleagues (2005) descriptive study.

Lack of Preparedness

    Most caregivers are not prepared for the many
responsibilities they face and receive no formal instruction in care giving
activities (NAC & AARP, 2004). According to a national opinion survey,
Attitudes and Beliefs About Care giving in the United States, 58% of respondents
say they are only somewhat or not at all prepared to handle health insurance
matters for an adult family member or friend, whereas 56% say they feel
unprepared to assist with medications. Furthermore, 64% worry about selling the
home of a loved one and moving that person to another location or setting up a
will or trust for that person (ORC, 2005). 

    Stewart, Archbold, Harvath, and
Nkongho, (1993) reported that although health care professionals were a
caregiver’s main source of information on providing physical care, the
caregiver received no preparation on how to care for the patient emotionally or
deal with the stresses of care giving . Lack of preparedness can greatly
increase the caregiver’s perceptions of strain, especially during times of
transition from hospital to home (Archbold et al., 1990; Archbold et al.,
1992).

Baseline Levels of Burden and Depressive Scores

    In a meta-analysis of 84 care giving studies, Pinquart and
Sörensen (2003) found that caregivers have higher levels of stress and
depression as well as lower levels of subjective well-being, physical health,
and self-efficacy than non-caregivers. The strongest negative effects of
care giving were observed for clinician-rated depression. 

    Differences in
perceived stress and depression between caregivers and non-caregivers were
larger in spouses than in adult children (Pinquart & Sörensen, 2003).
Caregivers of care receivers who have dementia (Pinquart & Sörensen, 2006)
have more problems with symptom management (Butler et al., 2005: Grande,
Farquhar, Barclay, & Todd, 2004) and problematic communication (Tolson,
Swan, & Knussen , 2002) and have also reported increased burden, strain,
and depression across studies.

Physical Health Problems

    Vitaliano and colleagues’ (2003) quantitative review of
23 studies from North America, Europe, and Australia examined relationships of
care giving with several health outcomes. They found that caregivers are at
greater risk for health problems than are non-caregivers. These studies
included 1,594 caregivers of persons with dementia and 1,478 non-caregivers who
were similar in age (mean 65.6 years old) and sex ratio (65% women, 35% men).
In this review, six physiological and five self-reported categories were
examined that are indicators of illness risk and illness.The physiological
categories included level of stress hormones, antibodies, immune
counts/functioning, and cardiovascular and metabolic variables. 

    Caregivers had
a 23% higher level of stress hormones (adrenocorticotropic hormone,
catecholamines, cortisol, etc.) and a 15% lower level of antibodies
(Eipstein-Barr virus, herpes simplex, immunoglobulin G test) than did non
caregivers. Comorbid medical illnesses are important because many caregivers are
middle aged to older adults, and they may be ill before they become caregivers.
Interestingly, the relationship between caregiver status and physiological risk
was stronger for men than women (Vitaliano et al., 2003).

Assessment Of The Problem

    Although systematic assessment of the patient is a
routine element of clinical practice, assessment of the family caregiver is
rarely carried out to determine what help the caregiver may need. Effective
intervention strategies for caregivers should be based on an accurate
assessment of caregiver risk and strengths.

     According to a broad consensus of
researchers and family care giving organizations (Stewart et al., 1993),
assessing the caregiver should involve addressing the following topics. These
are applicable across settings (eg, home, hospital) but may not need to be
measured in every assessment. Specific topics may differ for the following: Initial assessments compared to reassessments (the latter
focus on what has changed over time)

New versus continuing care situations

An acute episode prompting a change in caregiving versus
an ongoing need type of setting and focus of services (Family Caregiver
Alliance [FCA], 2006)

Care Giving Context

    The care giving context includes the background on the
caregiver and the care giving situation. The caregiver’s relationship to the
care recipient (spouse, non spouse). is important because spouse and non spouse
caregivers have different risks and needs (Gitlin et al., 2003; Sörensen et
al., 2002). The caregiver’s various roles and responsibilities can either take
away from or enhance their ability to provide care. For example, working
caregivers may have to develop strategies to juggle family and work
responsibilities, so we need to know what their employment status is
(work/home/volunteer; Pinquart & Sörensen, 2006). 

    The duration of
care giving (Sörensen et al., 2002) can give the clinician clues about how new
care giving is for the caregiver, or alert the clinician to the possibility of
caregiver exhaustion with the role. Questions about household status such as
how many people are in the home (Pinquart & Sörensen, 2006) and the
existence and involvement of extended family and social support (Pinquart &
to Sörensen, 2006) can give the clinician clues about how much support the caregiver
has readily available. 

    Depending upon the type of impairment of the care
receiver. the physical environment of the home, or facility where care takes
place can be very important (Vitaliano et al., 2003). Determine what the
caregiver’s financial status is for example, are they getting by, or are they
short of funds to provide for everyday needs (Vitaliano et al., 2003)? Ask
about potential resources that the caregiver could choose to use and list these
(Pinquart & Sörensen, 2006). Explore the family’s cultural background
(Dilworth-Anderson et al., 2002) and look for clues on how to use this as a
resource.

Caregiver’s Perception of Recipient’s Health and
Functional Status

List activities the care receiver needs help with;
include both ADL and IADL (Pinquart & Sörensen, 2003; Pinquart &
Sörensen, 2006). Determine if there is any cognitive impairment of the care
recipient. If the answer to this question is “yes,” ask if there are any
behavioral problems (Gitlin et al., 2003; Sörensen et al., 2002). The presence
of mobility problems can also make care giving more difficult-assess this by
simply asking if the care recipient has problems with getting around.

Lack of Caregiver Preparedness

Does caregiver have the skills, abilities, or knowledge
to provide care recipient with needed care? To assess preparedness, use
questions from the care giving preparedness scale. The Preparedness for Care giving Scale (PCGS)
was developed by Archbold and colleagues (1990, 1993). The concept of
preparedness was derived from role theory, in which socialization to a role is
assumed to be important for role enactment and performance. 

    The questions
prompt caregivers to rate how well prepared they think they are for care giving
in four perspectives of domain specific preparedness: physical needs, emotional
needs, resources, and stress. The clinician can interview the caregiver or ask
the caregiver to complete the scale like a survey. The responses to the scale
items can also be tallied and averaged for an overall score. If pressed for
time, the clinician can simply ask, overall, how well prepared the caregiver
thinks he or she is to care for a family member, and then follow this with more
specific questions if the response indicates preparedness is low. 

    The PCGS was
evaluated in a longitudinal correlational study of family caregivers (N = 103)
of older patients with chronic diseases (Archbold et al., 1990; Archbold et
al., 1992). The scale has five Likert-type items with possible responses
ranging from 1 (not at all prepared) to 4 (very well prepared). Overall scores
are computed by averaging responses to the five items. Scores range from 1.00
to 4.00-the lowest score correlating with least preparedness. Archbold and
colleagues (1992) reported internal reliability (Cronbach’s alpha) of 0.72 at 6
weeks and 0.71 at the 9-month interview.

Quality of Family Relationships

    The caregiver’s perception of the quality of the
relationship with the care receiver is a key predictor of the presence or lack
of strain from care giving (Archbold et al., 1990). The quality of the
relationship can be assessed using the Mutuality scale (Messecat,
Parker-Walsch. & Lindauer, in press) developed by Archbold and colleagues
(1990, 1992). Mutuality is defined as the caregiver’s perceived quality of the
relationship with the care receiver. Questions include “How close do you feel
to him or her?” and “How much does he or she express feelings of appreciation
for you and the things you do?” 

    An overall score can be obtained by calculating
the mean across all items or the questions can be used in an open-ended
interview format where the clinician then probes for more information and
history about the relationship. This scale can also be completed via
self-administration and then reviewed by the clinician with the caregiver
(interview the caregiver apart from the care receiver). For this scale, there
is no item that asks about the relationship overall; instead, the items explore
several key features of the relationship such as conflict, shared positive past
memories, felt positive regard, and positive reciprocity between the caregiver
and care receiver. 

    The questions open the door for the clinician to probe in a
gentle way the quality of the relationship. Caregivers rate how they feel about
the care recipient with possible responses ranging from 0 (not at all) to 4 (a
great deal). The caregiver’s mutuality score is computed by taking the average
of the scores on the 15 items. Internal reliability and consistency (Cronbach’s
alpha) of the scale was 0.91 at both 6 weeks and 9 months from discharge from
the hospital (Archbold et al., 1990).

Indicators of Problems With Quality of Care

     Indicators of problems with the quality of care can
include the following: evidence of an unhealthy environment, inappropriate
management of finances, and demonstration of a lack of respect for older
adults. The nurse’s observations can be guided by The Elder Mistreatment
Assessment (Fulmer, 2002), which helps the nurse identify elder abuse and
neglect issues (see Elder Mistreatment Assessment instrument at
http://consulterirn.org/resources). 

    This assessment instrument comprised seven
sections that reviews signs, symptoms, and subjective complaints of elder
abuse, neglect, exploitation, and abandonment (Fulmer, Paveza, Abraham, &
Fairchild, 2000; Fulmer, Street, & Carr, 1984; Fulmer & Wetle, 1986).
There is no “score,” but the older adult should be referred to social services
if there is evidence of mistreatment, a complaint by the older adult, or if
there is high risk or probable abuse, neglect, exploitation, or abandonment of
the older adult. Please also refer to Chapter 27, Mistreatment Detection.

Caregiver’s Physical and Mental Health Status

    The caregiver’s perception of their own health (Pinquart
& Sorensen, 2006) is one of the most reliable indicators of a physical
health problem. Depression or other emotional distress (eg, anxiety) can be
assessed using the Center for Epidemiological Studies-Depression Scale (CED-S:
see http://www.cher.brown.edu/pcoc/cesdscale.pdf. Pinquart & Sorensen,
2006; Sörensen et al., 2002). The CES-D was initially designated as a screen
for the community dwelling at risk for developing major depressive symptomatology.
It has been used widely in intervention studies with family caregivers where it
has been self-administered. 

    The Brown University Center for Gerontology and
Healthcare Research created a set of end-of-life care toolkit instruments,
which are available for use on their site at no charge. For each of the 20
items, participants rate their frequency of occurrence during the past week on
a 4-point scale from 0 (rarely) to 3 (most of the time). Scores range from 0 to
60, with a higher score indicating the presence of a greater number and
frequency of depressive symptoms. A score of 16 or higher has been identified
as discriminatory between groups with clinically relevant and nonrelevant
depressive symptoms (Fulmer et al., 2000; Radloff, 1977).

    Burden or strain can be assessed using the modified
Caregiver Strain Index (CSI; see http://consultgerirn.org/resources Family
Caregiving: Sullivan, 2002). Pre-existing burden or strain places caregivers at
greater risk and may prevent them from benefiting from interventions (Schulz
& Beach, 1999; Sullivan, 2002: Vitaliano et al., 2003). The modified CSI is
a tool that can be used to quickly identify families with potential caregiving
concerns. It is a 13-question tool that measures strain related to care
provision. 

       There is at least one item for each of the following major domains:
employment, financial, physical, social, and time. Positive responses to seven
or more items on the index indicate a greater level of strain. Internal
consistency reliability is high (Cronbach’s a = 0.86) and construct validity is
supported by correlations with the physical and emotional health of the
caregiver and with subjective views of the care giving situation. A positive
screen (7 or more items positive) on the CSI indicates a need for more in-depth
assessment to facilitate appropriate intervention.

Rewards of Care Giving

    Although early family care giving research focused almost
exclusively on negative outcomes of care giving, clearly, there are many
positive aspects of providing care. Spouses can be drawn closer together by
care giving, which can act as an expression of love. Child caregivers can feel a
sense of accomplishment from helping their adult parents. Caregivers should be
encouraged to explore and list their perceived benefits of care giving (Archbold
et al., 1995). These can include the satisfaction of helping family members,
developing new skills and competencies, and/or improved family relationships.

Self-Care Activities for Caregiver

    Self-care activities can include things like setting
aside time to exercise, getting time for oneself, and getting respect. Even if
the caregiver does not use this strategy, ask them to think about strategies
that would work for them. Caregivers need to be reminded that self-care is not
a luxury; it is a necessity. At a minimum, caregivers need to learn how to put
themselves first, manage stress, socialize, and get help.

Interventions and Care Strategies

Definitions
Psycho Educational Interventions

    Psycho educational interventions involve a structured
program geared toward providing information about the care receiver’s disease
process and about resources and services, and training caregivers to respond
effectively to disease-related problems, such as memory and behavior problems
in patients with dementia or depression and anger in patients with cancer. Use
of lectures, group discussions, and written materials are always led by a
trained leader. Support may be part of a psycho educational group, but it is secondary
to the educational content.

Supportive Interventions

    This category subsumes both professionally led and
peer-led unstructured support groups focused on building rapport among
participants and creating a space in which to discuss problems, successes, and
feelings regarding care giving

Respite or Adult Day Care

    Respite care is either in-home or site-specific
supervision, assistance with ADL, or skilled nursing care designed to give the
caregiver time off.

Psychotherapy

    This type of intervention involves a therapeutic
relationship between the caregiver and a trained professional. Most
psycho therapeutic interventions with caregivers follow a cognitive behavioral
approach.

Interventions to Improve Care Receiver Competence

    These interventions include memory clinics for patients
with dementia and activity therapy programs designed to improve affect and
everyday competence.

Multi Component Interventions

    Interventions in this group included various combinations
of educational interventions, support, psychotherapy, and respite in Sorensen
et al.’s (2002) meta-analysis. Individual studies included after the 2002
meta-analysis include nursing management and interdisciplinary care
interventions and REACH II

Nursing Care in a single View

    Past reviews of caregiver interventions, such as support
groups, individual counselling. and education confirm that there is no single,
easily implemented, and consistently effective method for eliminating the
stresses and/or strain of being a caregiver (Knight. Lutzky, &
Macofsky-Urban, 1993: Toseland & Rossiter, 1989). Sorensen and colleagues
(2002) performed a more recent meta-analysis on the effects of a second
generation of 78 caregiver intervention studies. 

    The most consistent
significant improvements in all outcome domains (burden, depression, well-being,
ability and knowledge, care receiver symptoms) assessed in the meta-analysis
resulted from psychotherapy and caregiver psycho educational interventions aimed
at improving caregiver knowledge and abilities. 

    Multi component interventions,
which combined features of psychotherapy and knowledge or skill building, had
the largest effect on burden and in addition, were effective for improving
well-being, ability, and knowledge. The effects of different types of
interventions on selected indicators of unhealthy caregiver transitions from
the meta-analysis and studies completed since 2002 are presented in Table 1.

    Other studies of psychotherapy and psycho educational
interventions fit the same pattern of results (Akkerman & Ostwald, 2004;
Burns et al., 2005; Coon. Thompson, Steffen, Sorocco, & Gallagher-Thompson,
2003; Hébert et al., 2003; Hepburn et al., 2005; Mittelman, Roth, Coon, &
Haley, 2004; Mittelman, Roth, Haley, & Zarit, 2004). All of these
interventions address key negative aspects of care giving: being overwhelmed
with the physical demands of care, feeling isolated, not having time for
oneself, having difficulties with the care recipient’s behavior, and dealing
with one’s own negative responses.

    There are several characteristics across interventions
that seem to have a moderating effect on caregiving outcomes. Focusing the
caregiver training exclusively on the care receiver to alter their symptoms has
almost no effect on the caregiver (Sörensen et al., 2002). In the Sorensen
(2002) meta-analysis, group interventions were less effective at improving
caregiver burden than individual and mixed interventions, which is consistent
with Knight et al. (1993) but inconsistent with the meta-analysis performed by
Yin, Zhou, and Bashford (2002). 

    Length of an intervention appears to be
important in alleviating caregiver depression and care receiver symptoms.
Caregivers do less well with shorter interventions regarding depression because
they lose the supportive aspects of prolonged contact with a group or a
professional before they can benefit.

    Characteristics of the caregiver are also associated with
intervention effectiveness. Some caregivers benefit less from interventions
than others do. For example, Sörensen (2002) found that spouse caregivers
benefited less from interventions than did adult children. Table 2 presents
caregiver characteristics associated with various indicators of unhealthy
caregiver transitions.

Interventions With Little Effect

    Some intervention approaches have been consistently
disappointing, showing either no significant effects or limited responses. In
Lee and Cameron’s (2004) update of the Cochrane database review, re-analysis of
three trials of respite care found no significant effects of respite on any
outcome variable. Interventions focused on medication management of the care
receiver’s dementia condition (Lingler, Martire, & Schulz, 2005) and/or
targeted to managing problematic behavior (Livingston, Johnston, Katona, Paton,
& Lyketsos, 2005) were similarly disappointing. 

    A meta-analysis of habit
training for the management of urinary incontinence interventions showed that
not only were there no significant differences in incontinence between the
intervention and control groups, but that caregivers found the intervention
labor intensive (Ostaszkiewicz, Johnston, & Roc, 2004) .

In Acton and Winter’s (2002) meta-analysis of dementia,
care giving studies, small. various samples; lack of intervention specificity;
diversity in the length, duration, and intensity of the intervention
strategies; and problematic outcome measures led to non-significant results for
many tested interventions (Cooke, McNally, Mulligan, Harrison, & Newman,
2001). They also reported that two thirds of the interventions they examined
did not show any improvement in any outcome measures. 

    Their analysis was
hampered by a lack of detailed description of the interventions in the studies
they examined. Study limitations have also been a factor leading to
disappointing results for some innovative care giving interventions for
caregivers of care receivers with other long-term, debilitating illnesses. 

    For
example, interventions designed to teach arthritis management as a couple
(Martire et al., 2003), to decrease the gap between caregiver’s expectations
and care receiver’s actual functional abilities with skill-building and
nurse-coached pain management, all had disappointing results because of either
small sample sizes or the complexity of the problems they were designed to
address (Martin-Cook, Davis, Hynan, & Weiner, 2005; Schumacher et al.,
2002). 

    According to Price, Hermans, and Grimley Evans (2000) modification
interventions for wandering have never been adequately tested because of the
many flaws identified in the existing published research; outcome measurement
has also been problematic. More distal outcomes, such as depression, perceived
stress, caregiver strain, and self-efficacy that are less directly related to
the actual intervention are less likely to change significantly (Bourgeois,
Schulz, Burgio, & Beach. 2002; Burgio, Stevens, Guy , Roth, & Haley,
2003) than outcomes that are more specific to the intervention (Hebert et al.,
2003).

    Caregivers caring for care receivers who have conditions
that worsen substantially over time (dementia, Parkinson’s disease, stroke)
have reported either less improvement. no improvement, or increased strain
after intervention (Sörensen et al., 2002; Forster et al., 2001; Wright,
Litaker, Laraia, &DeAndrade, 2001). Across many studies, Sörensen et al.
(2002) reported that interventions with caregivers of dementia patients are
less successful than for other caregivers. 

    They also noted that if levels of
care giving are relatively high and cannot be reduced, as is the case for
dementia caregivers, then burden and depression are less amenable to change as
well. A multidisciplinary rehabilitation program for patients with Parkinson’s
disease resulted in no improvement in depression for caregivers after treatment
(Trend, Kaye, Gage, Owen, & Wade, 2002). A meta-analysis of
hospital-at-home care for patients with stroke reported no evidence from
clinical trials to support a radical shift in the care of patients with acute
stroke from hospital-based care (Langhorne et al., 2000). 

    Individual studies
that examined other psycho educational and/or support and counseling
interventions for stroke caregivers (albeit with relatively small samples)
found no significant changes between the intervention and control groups
(Clark, Rubenack, & Winsor, 2003; Gräsel, Biehler, Schimdt, & Schupp,
2005; Larson et al., 2005). Only an intensive, multicomponent skills training
intervention significantly decreased burden anxiety and depression for this
category of caregivers (Kalra et al., 2004). 

    A number of family-based and
symptom management interventions for patients with cancer have also found no
significant intervention effects (Hudson, Aranda, & Hayman-White, 2005;
Kozachik et al., 2001; Kurtz, Kurtz, Given, & Given 2005; Northhouse,
Kershaw, Mood, & Schafenacker, 2005; Wells, Hepworth, Murphy, Wujcik, &
Johnson, 2003). In several of these studies, there was a large dropout rate
among the intervention participants because of the rapidly deteriorating
condition of the care receivers.

Resources for Enhancing Alzheimer’s Caregiver Health

    The REACH project was designed to test promising
interventions for enhancing family care giving for people with dementia and
overcome several of the limitations of prior research (Schulz et al., 2003).
More than 1,200 caregivers participated at six sites nationwide. The sample was
more diverse than most care giving studies because of the multi site design:
participants were 56% White, 24% African American, and 19% Latino (Wisniewski
et al., 2003). Five sites participated in this trial nationwide. The following
five interventions were tested:

1. A 12-month, computer-mediated automated interactive
voice response intervention designed to assist family caregivers managing care
receivers with dementia (Mahoney, Tarlow, & Jones, 2003).

2. A psychoeducational (skill-building) approach modeled
after community-based support groups tailored to be sensitive to ethnic groups
tested (Gallagher-Thompson et al., 2003). 

3. A manual-guided
care-recipient-focused behavior management skill training and
caregiver-focused, problem-solving training intervention tailored on cultural
preferences of White and African American caregivers (Burgio et al., 2003).

4. A
family therapy intervention designed to enhance communication between
caregivers and other family members by identifying existing problems in
communication and facilitating changes in interaction patterns (Eisdorfer et
al., 2003).

5. Two primary care interventions delivered more than a
period of 24 months, which included patient behavior management only and
patient behavior management plus caregiver stress and coping (Burns, Nichols,
Martindale-Adams, Graney, & Lummus. 2003).

6. In-home occupational therapy visits designed to help
families modify the environment to reduce caregiver burden (Gitlin, Hauck,
Dennis, & Winter, 2005).

    When the results from the REACH interventions were
pooled, overall interventions decreased burden significantly compared to the
control conditions (Gitlin et al., 2003). Only the family therapy with computer
technology intervention was effective for reducing depressive symptoms.
Interventions were superior to control conditions on burden for women and
caregivers with lower education; on depression, Hispanics, nonspouses, and
caregivers with lower education had bigger responses.

    REACH II followed up on REACH I, but unlike the first set
of studies, which implemented a variety of interventions at six sites, REACH II
implemented the same two interventions at each of five participating sites.
Reach II specifically implemented a multicomponent intervention and tested new
tools for assessing caregivers at risk for adverse outcomes. Intervention
participants received individual risk profiles and the REACH intervention
through nine in-home and three telephone sessions for more than 6 months. 

    Caregivers receiving REACH II reported better self-rated health, sleep quality,
physical health, and emotional health than for those caregivers not receiving
the intervention. Findings supported using a structured, multicomponent skills
training intervention that targeted caregiver self-care behaviors as one of
five target areas. Over-all, REACH II improved self-reported health status and
decreased burden and bother in racially and ethnically diverse caregivers of
people with dementia (Elliott, Burgio, & Decoster, 2010). 

    An analysis of
the findings by social demographic groups indicated that caregiver’s age and
religious coping moderated the effects of the intervention for Hispanics and
Blacks. The older Hispanic and Black caregivers who received the intervention
reported a decrease in caregiver burden from baseline to follow-up (Lee, Czaja,
& Schulz, 2010). Findings from the REACH studies support use of
multi component interventions tailored for specific care giving characteristics.

Aspects of Interventions That Improve Effectiveness

    A key conclusion of the REACH trial and several of the
meta-analyses (Gitlin et al.. 2003; Schulz et al., 2005; Sörensen et al., 2002)
reviewed in this chapter was that family caregiver interventions need to be
multi component and tailored. Multi component interventions have the potential to
include a repertoire of various strategies that target different aspects of the
care giving experience. In focus groups conducted during a care giving clinical
trial.    

    Farran and colleagues (2004) identified and cataloged the information
and skills caregivers reported they needed to respond to their own needs or the
care giving process. This included care receiver issues such as managing
difficult behaviors, worrisome symptoms, personal care problems, and caregiver
concerns such as managing competing responsibilities and stressors, finding and
using resources, and handling their emotional and physical responses to care
(Farran et al., 20 04 ). 

    Tailored interventions are interventions that are
crafted to match a specific target population, for example, spouse caregivers
of patients with Alzheimer’s disease and their specific caregiving issues and
concerns identified through assessment (Archbold et al., 1995; Horton-Deutsch,
Farran, Choi, & Fogg, 2002). Interventions that are individualized or
tailored in combination with skill building demonstrated the best evidence of
effectiveness (Pusey & Richards, 2001). 

    Among the psychoeducation
interventions, some of the most effective were predicated on a skills building
approach (Gallagher-Thompson et al., 2003; Hepburn, Tornatore, Center, &
Ostwald, 2001). Collaboration or a partnership model with the caregiver is also
a key component of making the tailoring process more effective (Harvath et al.,
1994). Programs that work collaboratively with care receivers and their
families and are more intensive and modified to the caregiver’s needs are also
more successful (Brodaty, Green, & Koschera, 2003).

Nursing Care Strategies

1. Identify content and skills needed to increase
preparedness for care giving. Psycho educational skill-building interventions
include information about the care needed by the care receiver and how to
provide it, as well as coaching on how to manage the care giving role. Tasks
associated with taking on the care giving role include dealing with change,
juggling competing responsibilities and stressors, providing and managing care,
finding and using resources, and managing the physical and emotional responses
to care (Acton & Winter, 2002; Farran, Loukissa , Perraud, & Paun, 2003;
Farran et al., 2004; Gitlin et al., 2003; Sörensen et al., 2002).

2. Form a partnership with the caregiver prior to
generate strategies to address issues and concerns.The goal of this partnership is blending the nurse’s
knowledge and expertise in health care with the caregiver’s knowledge of the
family member and the care giving situation. Each party brings essential
knowledge to the process of mutual negotiation between the family and the
nurse. 

    Together, they develop ideas to address the issues and concerns that are
most salient for the caregiver and care receiver. One strategy that can be used
in the hospital setting is to interview the caregiver using the Family
Preferences Index developed by Li to assess family member’s preferences to
participate in care while the older adult is hospitalized (Brodary et al.,
2003; Gitlin et al. , 2005; Harvath et al., 1994; Nolan, 2001).

3. Identify the care giving issues and concerns on which
the caregiver wants to work and generate strategies.Multiple strategies should be generated for each
care giving issue and concern. One of the most important findings from the
review of literature on care giving is that multi component interventions are
superior to narrow, single-approach problem solving (Acton & Winter, 2002;
Gitlin et al., 2005; Sörensen et al., 2002) .

4. Assist the caregiver in identifying strengths in the
care giving situation. Not all outcomes from care giving are negative, and
care giving can be rewarding for some caregivers who derive pride and
satisfaction from the important role they are filling. Incorporating pleasant
activities into the daily routine or incorporating into some care giving task
something that is either fun or meaningful are ways of enhancing care giving.
Even in really difficult situations, there may be some positive benefit derived
such as satisfaction in meeting an important commitment and/or recognition of
personal growth (Archbold et al., 1995).

5. Assist the caregiver in finding and
using resources.Navigating the health care system is one of the most
difficult skills caregivers have to master (Archbold et al., 1995; Farran et
al., 2004; Schumacher et al., 2002). Caregivers rarely know how to translate a
need that they have into a request for help from the health care system.
Learning how to speak to health care providers, how to negotiate billing, and
how to request help with transportation-all of these tasks can be overwhelming.
For some caregivers, the Internet and other online sources of support and
information can be helpful.

6. Help caregivers identify and manage their physical and
emotional responses to care giving.We know that care giving is sometimes associated with
deterioration of the caregiver’s health or significant depression (Schulz et
al., 2005). Generating strategies to take care of the caregiver is just as
important as the strategies for caring for the care recipient.

7. Use an interdisciplinary approach when working with
family caregivers. Multi component interventions have the strongest record in
terms of alleviating some of the global negative consequences of care giving.
Involving a team of other health professionals helps the nurse and family
generate new ideas for strategies and brings a fresh perspective to the idea-generating
process (Acton & Winter, 2002; Farran et al., 2003; Farran et al., 2004;
Gitlin et al., 2003; Sorensen et al., 2002).