Received: 21 March 2018 | Revised: 3 January 2019 | Accepted: 11 January 2019

DOI: 10.1111/opn.12227

ORIGINAL ARTICLE

Guilt experienced by caregivers to individuals with dementia: A

concept analysis

Maggie M. Prunty | Karen J. Foli

Purdue University School of Nursing, West

Lafayette, Indiana Abstract
Aim: To create a comprehensive understanding and definition of guilt in caregivers of
Correspondence
Karen J. Foli, Purdue University School of individuals with dementia. Through this concept analysis, we hope to empower
Nursing, West Lafayette, IN. nurses to more accurately identify guilt in caregivers and tailor interventions to spe‐
Email: kfoli@purdue.edu
cifically reduce these symptoms of guilt.
Background: Individuals with dementia are often cared for by relatives, friends and
neighbours. Many caregivers express feelings of guilt, increasing the risk of depres‐
sion and psychological burden. In turn, this impacts their availability to render care.
Design: Concept analysis according to Walker and Avant (Strategies for theory con‐
struction in nursing. Boston, MA: Prentice Hall; 2011).
Method: A literature search was completed utilising the following databases Cumulative
Index to Nursing and Allied Health, PubMed, PsycINFO and Google Scholar for the
years 2003–2017. Common definitions and lay usage were also considered.
Results: The identified critical attributes of guilt experienced by caregivers to indi‐
viduals with dementia include the following: (a) The expectation of a moral responsi‐
bility to care for the individual with dementia; (b) a negative, subjective appraisal of
one’s own caregiving performance, including neglecting other roles and responsibili‐
ties and self‐neglect; and (c) a sense of transgression or violation of a moral standard
as a caregiver to the individual with dementia. These defining attributes were then
applied in three cases: model, borderline and contrary. Pertinent antecedents and
consequences to the concept of guilt in caregivers to individuals with dementia were
identified.
Discussion: As a result of the guilt, the caregiver may experience poor mental and
physical health, symptoms of anxiety and depression, and a greater sense of car‐
egiver burden.
Conclusion: A new, comprehensive conceptual definition of guilt in caregivers to in‐
dividuals with dementia is described.
Implications for practice: A conceptual definition of guilt in caregivers of individuals
with dementia allows nurses to assess and identify caregivers at risk for, or currently
experiencing, guilt and help direct caregivers to appropriate interventions and sup‐
portive services.

KEYWORDS
caregivers, concept analysis, dementia, guilt, nursing

Int J Older People Nurs. 2019;e12227. wileyonlinelibrary.com/journal/opn © 2019 John Wiley & Sons Ltd | 1 of 13
https://doi.org/10.1111/opn.12227
2 of 13 | PRUNTY and FOLI
1 | I NTRO D U C TI O N
Across the globe, the older adult population continues to increase at
an unpreceded rate. He, Goodkind, and Kowal (2016) predicts that
by 2050, the population of persons 65 years and older will encom‐
pass nearly 17% of the world’s population. With this rising popu‐
lation comes the increasing need for caregivers of older adults as
they begin to experience chronic illnesses and functional limitations.
Most commonly, older adults are cared for by familial caregivers.
Familial caregivers typically include one or more of the following:
spouses, children and siblings (Romero‐Moreno et al., 2013). While
often described as rewarding, the position of caregiver has also been
associated with significant distress.
The increase in the older adult population has also led to a
rise in the number of persons with the diagnosis of dementia.
Dementia is a chronic disease of the brain resulting in the pro‐
gressive decline of cognitive functioning affecting memory,
comprehension, judgment and language. Concurrent declines in
emotional control, social behaviour and motivation are common
(Palm et al., 2016). The disease typically affects people over the
age of 65 years, making it the leading cause of disability of older
persons worldwide (Alzheimer’s Association, 2016). Increasingly,
persons with the diagnosis of dementia are cared for by famil‐
ial caregivers, who are at a high risk for experiencing significant
psychological burden (Rosa et al., 2009). Research has identified
that up to 65% of caregivers to individuals with dementia express
feelings of guilt (Gonyea, Paris, & Zerden, 2008; Roach, Laidlaw,
Gillanders, & Quinn, 2013). Guilt is listed as one of the diagnostic
criteria for major depressive disorder according to the American
Psychiatric Association (2013). To our knowledge, no study has
revealed a direct relationship between guilt and depression in
caregivers of individuals with dementia; however, we believe the
potential association between the development of guilt and the
progression of depressive symptoms in this group of caregivers
is of note. The development of familial caregiver guilt may have
negative consequences for both the caregiver and the individual
with the diagnosis of dementia.
Healthcare professionals, especially nurses, frequently find
themselves caring for individuals with the diagnosis of dementia.
In this position, nurses have the unique opportunity to simultane‐
ously assess both the patient’s disease progression and the caregiv‐
er’s psychological health and coping methods. With the expected
increase in the older adult population and those suffering from de‐
mentia, a greater number of persons will be caregivers. Despite the
known association between guilt and depression, the concept of
guilt has been poorly researched and defined within the dementia‐
caregiving context.
Guilt experienced by caregivers to individuals with dementia is
unique as the effects of dementia are significantly different than
other chronic illnesses. For familial caregivers, the gradual course
of dementia can be devastating (Albinsson & Strang, 2003). As the
disease progresses, the individual the caregiver once knew starts
What does this research add to existing knowledge
in gerontology?
• This concept analysis offers a new definition of guilt
within the context of caregivers to individuals with
dementia.
• The authors provide literature from nursing, legal, psy‐
chology and theology that contribute to this definition.
• Three case studies describe the antecedents, attributes
and consequences of the concept of interest.
What are the implications of this new knowledge
for nursing care with older people?
• With an understanding of this concept, nurses can pro‐
vide therapeutic communication to caregivers, thus al‐
lowing expression of caregiver needs and ultimately, the
provision of more holistic, person‐centred care.
• Awareness of guilt in caregivers also allows for focused
education regarding the progression of dementia with
acknowledgement of the challenges.
• The nurse can discuss how guilt may be part of the car‐
egiver’s experience, offering acceptance, resources and
referral as needed.
How could the findings be used to influence policy
or practice or research or education?
• Further exploration of the concept, including empirical
testing of the concept, is indicated.
• In addition to instrumental support, such as respite care,
policy efforts should include mental health support for
caregivers.
• Assessment of depressive symptoms in caregivers, with
early diagnosis, may prevent older adult abuse and
neglect.
• Future research using the Caregiver Guilt Questionnaire,
or a modified version, may be helpful as ways to manage
guilt are explored.
to disappear. The experiences they have shared become less and
less salient to the individual with dementia. The inevitable ero‐
sion of verbal communication, memory and personality can lead
to a metaphorical death of the individual with dementia, before
the physical death actually occurs (Caldas & Berterö, 2018). These
disease characteristics can lead to significant caregiver psycho‐
logical overload and guilt, thereby making guilt experienced by
caregivers to individuals with dementia different from guilt expe‐
rienced by caregivers to individuals with other chronic diseases.
The uniqueness of dementia caregiving is further demonstrated
in the concept analysis regarding facticity and dementia care by
Caldas and Berterö (2018).
PRUNTY and FOLI
Due to the absence of an in‐depth exploration of this area, a con‐
cept analysis approach was used to provide a structured and evi‐
dence‐informed definition of the concept of guilt in caregivers to
individuals with dementia. While a middle‐range theory (Tsai, 2003)
explains caregiver stress and an empirical referent exists to measure
caregiver guilt (Losada, Márquez‐González, Peñacoba, & Romero‐
Moreno, 2010), the concept of caregiver guilt and identified concept
attributes are absent from these sources.
The aim of this concept analysis is to clarify and define the con‐
cept of guilt as it relates to caregivers to individuals with the diagno‐
sis of dementia utilizing Walker and Avant’s (2011) concept analysis
framework. This analysis will illuminate the need for additional ex‐
ploration of the caregiver guilt concept and may guide future re‐
search efforts to further refine the concept and create tailored
screening tools and interventions to assist those caregivers who
may be experiencing guilt. Taking this concept analysis into account,
nurses globally may be empowered to more accurately identify guilt
in caregivers and adapt interventions to reduce these symptoms of
guilt, decreasing the risk of depression development and improving
the quality of life for both the caregiver and the individual with the
diagnosis of dementia.
2 | CO N C E P T A N A LYS I S M E TH O D
2.1 | Walker and Avant approach
To outline attributes by studying the concept uses and definitions,
and thereby provide a definition of guilt within the context of car‐
egiving to those with dementia, we used the Walker and Avant
(2011) approach. In addition to deriving a definition based on evi‐
dence, we also sought to clarify the use of empirical referents as
operational definitions surrounding this concept. The steps of the
Walker and Avant (2011) model are as follows: “(1) select a concept;
(2) determine the aims or purposes of analysis; (3) identify all uses
of the concept that you can discover; (4) determine the defining at‐
tributes; (5) identify a model case; (6) identify borderline, related,
contrary, invented and illegitimate cases; (7) identify antecedents
and consequences; and (8) define empirical referents” (p. 160). As a
modification to the Walker and Avant (2011) approach, we present
the model, borderline and contrary cases.
2.2 | Data selection and analysis
To create a comprehensive understanding the concept of guilt, a lit‐
erature review was completed. The key terms “dementia,” “caregiver,”
and “guilt” were utilised in a literature search of the following data‐
bases: CINAHL, PubMed, PsycINFO and Google Scholar. With birth
rates near historic lows, the baby boomer generation represented
more than 25% of the total United States population in the year 2003
(MetLife, 2003). At this time, significantly more research regarding
the concepts of dementia, caregivers, and guilt became available, and
therefore, only articles published in 2003 or later were included in
this review. The search was limited to only scholarly, peer‐reviewed
| 3 of 13
articles written in English. Of the 156 articles retrieved from these
databases, 130 articles were excluded due to a lack of dementia
focus or inclusion of guilt as solely a component of caregiver burden.
In the end, 26 articles were selected to define and further clarify the
concept of guilt in caregivers to individuals with dementia. Nine ad‐
ditional sources from judicial, religious and psychological disciplines
were also included to strengthen the new conceptual definition. A
summary of the sources used is provided in Table 1.
3 | LITE R AT U R E R E V I E W
Steps 1 and 2 of Walker and Avant’s (2011) approach to concept
analysis were completed above. The third step in this approach is
the literature review. We begin with basic dictionary items.
3.1 | Dictionary definitions of guilt
Guilt is a concept that we hear about often, from the nightly news,
to scientific research, to the latest top‐charting musical hit. Yet, de‐
spite its prevalence in our culture, its meaning can vary greatly from
one source to another. Definitions of guilt can be found within many
disciplines including law, psychology, religion and nursing, and often
range from highly abstract to very concrete. The following definition
for guilt provided by the Merriam‐Webster dictionary (n.d.) is helpful
in highlighting just how variable the concept of guilt can be.
1. Having committed a breach of conduct especially
violating law and involving a penalty, 2. a: the state
of one who has committed an offense especially con‐
sciously, b: feelings of deserving blame especially for
imagined offenses or from a sense of inadequacy, 3. a
feeling of deserving blame for offenses.  (para. 1)
3.2 | Uses of the concept in law, Christianity,
psychology and nursing
Within the judicial discipline, in the concept’s most concrete sense,
guilt is defined by the Cornell School of Law (n.d.) as either the ad‐
mittance of the accused, or the finding by a judge/jury, that the ac‐
cused has indeed committed a crime. In agreement, Hörnle (2016)
states that guilt is the term used to signify blame on the offender
for behaving in an illegal manner when they could have acted in ac‐
cordance with the law. The use of the term guilt within law refers to
an external body that will judge guilt. This concept analysis, and the
follow examples of uses of guilt, will focus on an internal definition of
guilt. Including this external definition of guilt is necessary to create
a comprehensive understanding of the varied uses of the term guilt.
The concept of guilt is also frequently associated with
Christianity. New Testament Christian authors describe guilt as
an emotion born from the personal awareness of sin with ensuing
remorse. Sinners note that they have not lived up to the ideals of
the heavenly moral law and guilt arises (Faiver, O’Brien, & Ingersoll,
4 of 13 | PRUNTY and FOLI

TA B L E 1 Guilt sources and definitions

Source Definition

Dictionary
Merriam‐Webster 1. Having committed a breach of conduct especially violating law and involving a penalty, 2. a:
the state of one who has committed an offense especially consciously, b: feelings of deserving
blame especially for imagined offenses or from a sense of inadequacy, 3. a feeling of deserving
blame for offenses
Psychology
Freud (1962) Unconscious’s need for punishment expressed as self‐torment; a conflict between the superego
and the id
Ortony (1988) A moral transgression in which the person believes they have violated a social norm and
harmed another person
Kugler (1992) The dysphoric feeling associated with the recognition that one has violated a personally
relevant moral or social standard
Tangney (2007) An “adaptive emotion” meant to protect interpersonal relationships by punishing harmful
actions and inspiring the transgressor to repair the relationship
Haidt (2003) A link between the individual and society, stimulating the person to fully consider how their
actions will affect other people
Law
Cornell School of Law (n.d.) Admittance of the accused, or the finding of a judge/jury, that the accused has indeed
committed a crime
Hörnle (2016) Signify blame on the offender for behaving in an illegal manner when they could have acted in
accordance with the law
Christianity
Faiver (2000) An emotion born from the personal awareness of sin with ensuing remorse
Albertsen (2006) Without a personal understanding of your transgressions (guilt), there would be no need for
grace
Nursing
Campbell (1984) A form of anxiety and fear that develops when people feel they have done something wrong
and are likely to be punished
Robertson (1994) A negative feeling resulting from either the contemplation or completion of an act that goes
against one’s personal moral standard
Beck (2002) A mother’s negative appraisal of her own nurturing performance and/or the presence negative
thoughts towards the baby
Additional source information Findings and tools
Albinsson (2003) High levels of guilt are associated with poorer mental health, chronic stress, and increased rates
of depression and anxiety
Alzheimer’s Association (2016) Dementia is the leading cause of disability of older persons worldwide
American Psychiatric Association (2013) Guilt is one of the diagnostic criteria for major depressive disorder
Ankri (2005) Guilt is defined as a sense of inadequacy in the caregiver, closely tying guilt to the concepts of
responsibility and regret
Caldas (2018) Concept analysis on facticity and dementia care, discusses the unique challenges of dementia
caregiving and its resulting effects on the caregiver
Davis (2010) Guilt is associated with chronic stress and increased depressive symptoms in caregivers
Gonyea (2008) Up to 65% of caregivers to individuals with dementia express feelings of severe guilt and guilt
seems to increase as the adult daughters feel they are failing in their expected roles
Graneheim (2013) Caregivers often report that these feelings arise due to the unpredictable behaviors associated
with dementia, feeling as though they have not lived up to their filial or caregiver responsibili‐
ties and sense that they are abandoning their loved ones with placement in an institutional
facility
He (2016) National Institute of Health predicts that by 2050, the population of persons 65 years and
older will encompass nearly 17% of the world’s population

(Continues)
PRUNTY and FOLI | 5 of 13

TA B L E 1 (Continued)

Source Definition

Jennings (2015) Caregiver education can be provided to manage increasing behavioral disturbances, personality
changes, and changes in communication as dementia progresses
Losada (2010) Feelings of caregiver guilt may be related to resentment towards others who do not participate
in caregiving duties, when caregivers engage in self, when they neglect their own families, and
when they are failing in their expected roles
Maeve (2013) Guilt as noted in Cheryl Beck’s theory of postpartum depression
Martin (2006) Feelings of caregiver guilt increase as dementia progresses
Martz (2017) Theoretical model of caregiver guilt that situates caregiver guilt within the transitions of care
necessitated by the older adult’s decline and ultimate passing
MetLife (2003) The baby boomer generation represented more than 25% of the total United States population
in the year 2003
Orfila (2018) Caregivers of moderate to severely dependent older adults who reported higher caregiver
burden, anxiety and depression were at higher risk of abusing those under their care
Palm (2016) Concurrent declines in emotional control, social behavior, and motivation are common
Park (2004) Many caregivers feel they are abandoning their loved ones with placement in an institutional
facility. The goal of caregiver services is to increase understanding and coping ability of those
with feelings of guilt
Pe’rez‐Rojo (2015) Data were collected from caregivers using the Caregiver Abuse Screen to examine elder abuse
in individuals with dementia
Razani (2007) Caregivers frequently report feeling guilty for having negative emotions towards the individual
with dementia
Reis (1995) Development of the Caregiver Abuse Screen
Roach (2013) The majority of caregivers report experiencing guilt. High levels of guilt can cause poorer
mental health, chronic stress, and increased rates of depression
Romero‐Moreno (2013) Familial caregivers typically include spouses, children, and siblings. Guilt may develop when
caregivers feel they are neglecting their other roles
Rosa (2009) Persons with dementia are often cared for by familial caregivers, who are at a high risk for
experiencing significant psychological burden
Samuelsson (2001) Caregiver guilt can occur when the caregiver negatively assesses their caregiving performance
Sanders (2008) The unpredictable behaviors associated with dementia can cause caregiver burden and may
lead to placement in a long term care facility igniting feels of guilt in the caregiver
Sherko (2013) Therapeutic communication techniques for nurses to employ
Spigelmyer (2017) Many caregivers report feeling deceitful as they place family members in long term care,
feeling as though they have failed in their familial duties
Sury (2013) Familial caregivers express feeling guilty when placing family members in institutional settings
due to increasing behaviors and needs. This can lead to depressive symptoms in caregivers
Tsai (2003) Developed a middle‐range theory to explain caregiver stress
Tracy (2006) Caregiver guilt occurs when the caregiver identifies an actual or perceived event or feeling that
injuries their moral standards during the caregiving experience
Walker and Avant (2011) Concept analysis framework
WHO iSupport (2018) Online training tool providing guidance and support related to caregiving to an individual with
dementia
Wu (2009) Familial caregivers experience guilt as they place loved ones in a long term care facility

2000). Albertsen, O’Connor, and Berry (2006) go so far as to suggest
that guilt is central to Christianity, indicating that without a personal
understanding of your transgressions (guilt), there would be no need
for grace. Therefore, the concept of guilt is necessary for the exis‐
tence of grace, a fundamental ideal of many Christian teachings.
Guilt has long been a popular subject within psychological liter‐
ature and research. Freud is often credited with beginning the mod‐
ern discussion on guilt in the 1930s, stating it was the unconscious’s
need for punishment expressed as self‐torment; a conflict between
the superego and the id which results in feelings of guilt (Freud,
1962). Ortony, Clore, and Collins (1988) later define guilt as a moral
transgression in which the person believes they have violated a
social norm and harmed another person. This negative self‐evalu‐
ation causes tension, regret and preoccupation on the harmful act.
Similarly, Kugler and Jones (1992) state guilt is “the dysphoric feeling
associated with the recognition that one has violated a personally
6 of 13 | PRUNTY and FOLI
relevant moral or social standard” (p. 318). More recently Tangney,
Stuewig, and Mashek (2007) describe guilt as an “adaptive emotion”
(p. 26) meant to protect interpersonal relationships by punishing
harmful actions and inspiring the transgressor to repair the relation‐
ship. Haidt (2003) labels feelings of guilt as a link between the indi‐
vidual and society, stimulating the person to fully consider how their
actions will affect other people.
Similarly, guilt has also been studied within the nursing discipline.
Campbell (1984) suggests guilt is a form of anxiety and fear that de‐
velops when people feel they have done something wrong and are
likely to be punished. Robertson (1994) defines guilt as a negative
feeling resulting from either the contemplation or completion of an
act that goes against one’s personal moral standard. Action to repair
the wrongdoing is needed before feelings of guilt can be resolved.
More specifically, guilt is also discussed by Cheryl Beck (2002) in the
context of postpartum depression. Beck indicates that one facet of
postpartum depression is a mother’s negative appraisal of her own
nurturing performance and/or the presence negative thoughts to‐
wards the baby, which often results in feelings of guilt (as cited in
Maeve, 2013).
3.3 | Guilt in caregivers rendering care to individuals
with dementia
While the concept of guilt is frequently used in the literature sur‐
rounding caregivers to those individuals with dementia in a variety
of disciplines, it is rarely defined. Instead, guilt is typically reported
with several other related terms and emotions including shame, re‐
gret, distress, frustration and sadness as a component of caregiver
burden (Park, Butcher, & Maas, 2004). The only definition obtained
from the literature search specific to this caregiver context was that
of Ankri, Andrieu, Beaufils, Grand, and Henrard (2005), who related
the concept of guilt to a sense of inadequacy in the caregiver, closely
tying guilt to the concepts of responsibility and regret. The following
examples of guilt in caregivers within the dementia context are from
multidisciplinary sources.
Within the literature, caregivers to individuals with dementia
often cite four major sources for their guilt. First, caregivers fre‐
quently report feeling guilty for having negative emotions towards
the individual with dementia. They feel badly about becoming easily
angered with the individual and feeling resentful towards their role
as the caregiver. Caregivers often report that these feelings arise due
to the unpredictable behaviours associated with dementia and the
individual’s resistance to care (Graneheim, Johansson, & Lindgren,
2013; Losada et al., 2010; Razani et al., 2007; Sanders, Ott, Kelber,
& Noonan, 2008; Spigelmyer, Hupcey, Smith, Loeb, & Kitko, 2017).
Secondly, caregivers often express guilt while negatively view‐
ing their performance as a caregiver, remarking that they could
likely be doing a better job and feeling as though they have failed
to meet society’s expected standards of care. Many caregivers ex‐
press feeling that they have not adequately met the challenges
of the caregiving role. These feelings of guilt appear to increase
as the disease state progresses (Ankri et al., 2005; Gonyea et
al., 2008; Martin, Gilbert, Mcewan, & Irons, 2006; Samuelsson,
Annerstedt, Elmstahl, Samuelsson, & Grafstrom, 2001; Spigelmyer
et al., 2017). Some caregivers also note the development of guilt
related to resentment towards others who do not participate in
caring for the individual with dementia (Losada et al., 2010; Park
et al., 2004).
Caregivers describe feeling guilt when they engage in self‐care
and leisure activities and are not present to care for the individual
with dementia (Gonyea et al., 2008; Losada et al., 2010; Romero‐
Moreno et al., 2013; Samuelsson et al., 2001). Similarly, caregivers
also express guilt about neglecting their own families to care for
the individual with dementia (Gonyea et al., 2008; Losada et al.,
2010). Many adult daughters report feeling an expectation that
they will remain selfless in caring for their ageing parents, sacrific‐
ing their own needs to become the primary caregiver. Role strain
occurs as they attempt to balance being a devoted daughter and
caregiver, mother, partner and friend. Guilt increases as the adult
daughters feel they are failing in their expected roles (Gonyea et
al., 2008; Losada et al., 2010; Romero‐Moreno et al., 2013).
Finally, caregivers respond with guilt when placing the indi‐
vidual with dementia in a long‐term care facility. The caregivers
often report feeling as though they have not lived up to their filial
or caregiver responsibilities (Graneheim et al., 2013). Many sense
they have poorly performed their caregiving duties in the home
and that they are abandoning their loved ones with placement in
an institutional facility (Graneheim et al., 2013; Park et al., 2004;
Sanders et al., 2008; Sury, Burns, & Brodaty, 2013; Wu, Low,
Xiao, & Brodaty, 2009). Many caregivers report feeling deceit‐
ful throughout the nursing home placement process (Spigelmyer
et al., 2017). These combined factors result in intense caregiver
guilt.
A recent publication by Martz and Morse (2017) describe a the‐
oretical model of the guilt experienced by caregivers. The authors
again emphasise the lack of a conceptual definition of guilt (Martz
& Morse, 2017, p. 1007); however, this model situates caregiver
guilt within the transitions of care necessitated by the older adult’s
decline and ultimate passing. The findings of this grounded theory
study include that guilt was experienced by the family member
throughout the transition of care processes; yet justification of the
care transition after death was used to resolve lingering guilt (Martz
& Morse, 2017).
3.4 | Existing nursing theory
While a theory related to caregiver stress exists (Tsai, 2003), the
theorist does not link this to feelings of guilt in caregivers. In 2003,
Tsai articulated a middle‐range theory of caregiver stress based
on the Roy adaptation model. In this model, Tsai (2003) does not
discuss guilt; however, depression is part of the control process
leading to various outputs, which include self‐esteem and role en‐
joyment (p. 139). While caregiver roles, burden, stressful life events
and perceptions are discussed, Tsai (2003) does not specify car‐
egiver guilt as part of the stress perceived in this adaptation model.
PRUNTY and FOLI | 7 of 13

4 | C R ITI C A L AT TR I B U TE S and dementia caregiver research findings, a new conceptual defini‐

Critical attributes, as defined by Walker and Avant (2011), are essen‐
tial components of a concept seen repeatedly in the literature that
help distinguish the concept in question from other related concepts.
The critical attributes to the concept of guilt in caregivers to indi‐
viduals with dementia are as follows: (a) the expectation of a moral
responsibility to care for the individual with dementia (Graneheim
et al., 2013; Losada et al., 2010; Razani et al., 2007; Sanders et al.,
2008; Spigelmyer et al., 2017); (b) a negative, subjective appraisal of
one’s own caregiving performance, including neglecting other roles
and responsibilities and self‐neglect (Gonyea et al., 2008; Losada et
al., 2010; Romero‐Moreno et al., 2013); and (c) a sense of transgres‐
sion or violation of a moral standard as a caregiver to the individual
with dementia (Ankri et al., 2005; Gonyea et al., 2008; Graneheim
et al., 2013; Martin et al., 2006; Park et al., 2004; Samuelsson et
al., 2001; Spigelmyer et al., 2017; Sury et al., 2013; Wu et al., 2009).
In order to experience guilt, caregivers must feel a sense of moral
responsibility to care for the individual with dementia. This sense of
moral responsibility is often a result of cultural beliefs, gender expec‐
tations, and the relationship of the caregiver to the care receiver before
the diagnosis of dementia is made (e.g., child, spouse, sibling, friend).
The caregiver must then subjectively appraise their own caregiving per‐
formance, fulfilment of role functioning with others and self‐care nega‐
tively. In doing so, the caregiver is not focusing on the objective tasks of
caregiving, but the appraisal of their caregiving experience in compari‐
son with an ideal. Finally, the caregiver must feel they have committed
a transgression against the individual with dementia or violated a moral
standard as the caregiver with their behaviour and/or thoughts. These
three critical attributes, when experienced, result in the development of
guilt in caregivers to individuals with dementia (see Table 2).
tion for guilt has been developed:
Guilt emerges when the caregiver believes they have
a moral responsibility to care for the individual with
dementia, but have violated a moral standard of care
through their behaviours and/or thoughts (Graneheim et
al., 2013; Losada et al., 2010; Razani et al., 2007; Sanders
et al., 2008; Spigelmyer et al., 2017). Subsequently, the
individual negatively assesses their caregiving and role
performances, feeling as though they have transgressed
against the individual (Ankri et al., 2005; Gonyea et al.,
2008; Graneheim et al., 2013; Martin et al., 2006; Park
et al., 2004; Samuelsson et al., 2001; Spigelmyer et al.,
2017; Sury et al., 2013; Wu et al., 2009). Through their
caregiving efforts, the individual neglects themselves
and others in their personal environment (Gonyea et al.,
2008; Losada et al., 2010; Romero‐Moreno et al., 2013).
6 | CASES STUDIES
The following section contains three case studies that further clarify
the concept of guilt in caregivers to individuals with dementia. First,
a model case will be presented. A model case emphasises all of the
antecedents and critical attributes of the concept in question, cre‐
ating a comprehensive depiction of the concept (Walker & Avant,
2011). Second, a borderline case will be presented. A borderline case
utilises only a select number of the aforementioned critical attrib‐
utes (Walker & Avant, 2011). Finally, a contrary case will be present,
which contains none of the critical attributes that define the concept
(Walker & Avant, 2011).

5 | CO N C E P T UA L D E FI N ITI O N
6.1 | Model Case
Based on the synthesis of information as provided above, including Jane is a 55‐year‐old woman living in a small town in rural Indiana
the common usages and definitions of guilt found in the literature with her husband. She is the mother of three adult children and

TA B L E 2 Conceptual components of guilt in caregivers to individuals with dementia

Antecedents Attributes Consequences Empirical referents

The existence of an
individual with dementia
Individual with dementia
must have value to the
caregiver
Caregiver must have a
moral conscience
Caregiver must recognise
that the individual with
dementia needs to be
cared for
Caregiver must then
identify an actual or
perceived negative
experience or event
Expectations of a moral responsibility
to care for the individual with
dementia
A negative, subjective appraisal of
one’s own caregiving performance,
including self‐neglect and neglecting
other roles and responsibilities,
Sense of transgression, or violation of
a moral standard, as a caregiver to the
individual with dementia
Poor mental health Caregiver Guilt Questionnaire
Poor physical health (CGQ; Losada et al., 2010;
Chronic stress Roach et al., 2013)
Symptoms of anxiety and
depression
Low participation in leisure
activities
Greater sense of caregiver burden
Negative impact on other familial
and social relationships
8 of 13 | PRUNTY and FOLI
works full‐time as special education teacher in the local public school
system. Her 95‐year‐old father, Tom, lives roughly an hour away.
Several years ago, Jane’s father was diagnosed with Parkinson’s
disease, which has evolved with symptoms of dementia. Jane has
always maintained a loving and supportive relationship with her fa‐
ther and believes she owes it to Tom to take care of him, especially
as his independence has decreased. Jane tries to visit Tom as often
as she can, regularly making the 2‐hr round trip up to three times
a week. Despite the frequency of her visits, Jane still feels like she
should be doing more for Tom. She has often arrived to find him
looking dishevelled and the house a mess. Due to the increased time
spent travelling, Jane rarely sees her husband anymore. She senses
that her caregiving role is putting a strain on their marriage. When
she is home, Jane is exhausted and stressed. During her last trip,
Jane found Tom with a badly bruised eye and the stove burner left
on. Jane could not help but feel like a failure, knowing she could no
longer keep Tom safe by herself. Jane knew her father had always
said he did not want to live in a nursing home but she felt she had no
other choice. Jane felt immense guilt as she set up an appointment to
meet with the local nursing home staff for the following day.
In this model case, we see all three critical attributes of guilt in
caregivers to individuals with dementia represented in Jane. It is
clear that Jane feels a moral responsibility to care for her father.
Despite how it may appear to others, Jane negatively assesses her
performance as a caregiver to Tom. Jane feels her caregiving respon‐
sibilities for Tom are causing her to neglect not only her role as a
wife, but also to neglect caring for herself. When Jane sees Tom’s
injury and understands the significant safety concerns, she feels in‐
adequate as a daughter and caregiver, knowing she cannot keep Tom
safe. Finally, when Jane makes the decision to place Tom in nursing
home care, she feels she has betrayed Tom (sense of transgression).
6.2 | Borderline Case
Terry is a 67‐year‐old African American women working part‐time
as a receptionist in a dental office. Her twin sister and best friend,
Mary, was diagnosed with early onset dementia at 65 years of age.
Terry knew that she would always be there to care for her sister. For
the past year, Terry has managed to rearrange her work schedule so
that she is able to spend long weekends with Mary. Occasionally,
Terry finds herself getting frustrated with Mary as she often has to
repeat the same instructions several times before Mary understands
them. In these instances, Terry reminds herself that the forgetful‐
ness is a symptom of the dementia. Despite her occasional frustra‐
tions, Terry knows she is doing the best she can, as she is able to visit
every weekend, and Mary generally seems happy and content.
In this case, we see that Terry exhibits two of the three critical
attributes for guilt in caregivers to individuals with dementia. First,
Terry feels a moral responsibility to care for her sister, as the two have
had a strong connection their entire lives. Second, occasionally Terry
feels a sense of transgression when she gets frustrated with Mary.
Despite this, Terry positively appraises her caregiving performance;
therefore, the concept is guilt is largely absent in this case example.
6.3 | Contrary Case
David is a 45‐year‐old man, father of two children, who works full‐
time managing a local grocery store. David recently learned that his
estranged father, John, was diagnosed with Alzheimer’s disease.
David has never felt close to his father, who was an alcoholic and
verbally abusive to his mother. David has only seen his father a hand
full of times since his mother divorced John and moved the two chil‐
dren to a different city, 4 hours away. Monthly, David sends money
to his sister to help pay for the nursing home apartment John lives
in, but David feels no need to be any more involved in the caregiv‐
ing process. He feels no desire to see or contact his father, who was
rarely present in his own life.
While David realises John needs to be cared for, he does not feel
any moral obligation towards being personally responsible for the
care of his father. Instead, David sends money to his sister to ensure
John receives the care he needs. Consequently, David does not neg‐
atively view his caregiving performance nor does he feel a sense of
transgression against John. In this case study, there is a total absence
of all three critical attributes of guilt in caregivers to individuals with
dementia.
7 | A NTEC E D E NT S A N D CO N S EQ U E N C E S
Antecedents are elements and events that must be present before
a concept can occur (Walker & Avant, 2011). Prior to the develop‐
ment of guilt in the context of caregivers to individuals with demen‐
tia, there must first exist an individual with dementia. Second, the
caregiver must associate some emotional value to the individual with
dementia. The caregiver must be someone who maintains a moral
conscience, and recognises that the individual with dementia needs
to be cared for. Other roles and responsibilities must exist outside
of the caregiving rendered to the individual with dementia. Finally,
the caregiver must identify an actual or perceived event or feeling
that injuries their moral standards during the caregiving experience
(Tracy & Robins, 2006).
Consequences are defined as events that arise as a result of the
concept occurring (Walker & Avant, 2011). Research indicates that
guilt can have both positive and negative consequences. Low levels
of guilt may be beneficial in that it may prevent or mitigate abnor‐
mal behaviour, inspire a transgressor to seek forgiveness and repair
a relationship, or help deter abusive actions towards the individual
with dementia (Gonyea et al., 2008). Alternately, excessive guilt can
lead to depressive symptoms (Gonyea et al., 2008). Up to 65% of
caregivers to individuals with dementia experience guilt (Roach et
al., 2013). For some caregivers, guilt manifests as frustration, anger,
decreased energy, low participation in leisure activities and a greater
sense of caregiver burden (Gonyea et al., 2008). High levels of guilt
may also be associated with poorer mental health, chronic stress
and increased rates of depression and anxiety seen in many caregiv‐
ers to individuals with dementia (Albinsson & Strang, 2003; Davis,
Tremont, Bishop, & Fortinsky, 2010; Losada et al., 2010; Roach et
PRUNTY and FOLI
al., 2013; Romero‐Moreno et al., 2013; Sury et al., 2013; Wu et al.,
2009).
8 | E M PI R I C A L R E FE R E NT S
Empirical referents are validated techniques used to measure that
a concept is actually occurring, often employed for research pur‐
poses (Walker & Avant, 2011). Several empirical referents have
been developed to measure guilt; however, few have been designed
specifically to assess guilt within the caregiving context. The tools
described below do not measure the attributes identified in this
concept analysis and, therefore, do not reflect the definition of guilt
experienced by caregivers of individuals with dementia as derived
from the evidence.
Noting that there was a relative absence of tools developed
to directly assess guilt in the context of dementia care, Losada
et al. (2010) created the Caregiver Guilt Questionnaire (CGQ).
This questionnaire includes 22 items, sorted into five factors,
each addressing a different component of caregiver guilt. The
five sections are as follows: “(1) Guilt about doing wrong by the
care recipient, (2) Guilt about not rising to the occasion as care‐
givers, (3) Guilt about self‐care, (4) Guilt about neglecting other
relatives, and (5) Guilt about negative feelings towards other peo‐
ple” (p. 650). Caregivers are asked to identify how frequently they
experience each emotion or event on a 5‐point Likert scale with
responses ranging from 0 (never) to 4 (always). Examples of ques‐
tions asked in the questionnaire include the following: “I have felt
bad for not having more patience for the person I am caring for” (p.
654) and “I have felt bad about not being able to devote more time
to my family due to my caregiving” (p. 654). At the completion of
the questionnaire, scores are totalled with higher scores reflecting
greater levels of guilt (Losada et al., 2010).
The psychometric properties of the CGQ were studied in an
English‐speaking sample (Roach et al., 2013). The original tool had
been used with Spanish‐speaking individuals (Losada et al., 2010).
Roach et al. (2013) found acceptable reliability and convergent valid‐
ity of the scale in this new sample of 221 British caregivers.
The CGQ (Losada et al., 2010) directly measures two of the three
identified critical attributes of caregiver guilt in the dementia care
context. The negative, subjective appraisal of one’s own caregiving
performance, including neglecting other roles and responsibilities is
highlighted in the questions addressing guilt about not rising to the
occasion as caregivers, and guilt about neglecting other relatives. A
sense of transgression or violation of a moral standard as a caregiver
to the individual with dementia is addressed in the section focused
on guilt about doing wrong by the care recipient. The third critical
attribute of the expectation of a moral responsibility to care for the
individual with dementia is less distinctly measured by this tool.
Healthcare professionals should be aware that the CGQ (Losada
et al., 2010) was not constructed using a conceptual analysis or the‐
oretical basis. Rather the tool was created using clinical experience
and in consultation with experts. Therefore, it is not an inclusive
| 9 of 13
assessment of caregiver guilt due to the lack of direct measurement
of all three critical attributes of the concept (see Table 3). This anal‐
ysis supports the need for empirical measurement of caregiver guilt
that would test the addition of items to the CGQ to reflect the to‐
tality of caregiver guilt, or the development of a new, more compre‐
hensive assessment tool.
9 | I M PLI C ATI O N S FO R PR AC TI C E
As the older adult population continues to increase, so too will the
number of individuals diagnosed with dementia; this will require
that more people assume the role of caregiver. As previously noted,
caregivers to individuals with dementia may experience significant
psychological burden (Rosa et al., 2009), frequently including feel‐
ings of intense guilt (Gonyea et al., 2008; Roach et al., 2013), which
has a known association with depression (American Psychiatric
Association, 2013). Nurses in many healthcare settings, from the
bedside to advanced practice roles, will find themselves caring for
individuals with dementia and interacting with their caregivers. This
uniquely positions nurses to not only provide symptom management
and medical care for the individual with dementia, but also assess
the health and well‐being of the caregivers. Identifying caregiver
guilt in the early stages is essential to effectively intervening and
mitigating these feelings, potentially mitigating the development of
depression. The following practice considerations are based on the
concept analysis results.
A thorough understanding of the concept of guilt in caregivers
to individuals with dementia and the use of the aforementioned em‐
pirical referent will allow nurses, and other healthcare professionals,
to assess and identify dementia caregivers at risk for, or currently
experiencing, guilt and help direct these caregivers to appropriate
interventions and supportive services to reduce their guilt. These
interventions may include education on appropriate coping strate‐
gies, techniques for self‐forgiveness, participation in caregiver sup‐
port groups, individual counselling and referral to community social
services, such as respite care if available (Gonyea et al., 2008; Rosa
et al., 2009; Sander et al., 2008). The goal of these services is to
assist caregivers in understanding and coping with their guilt and
easing the caregiver burden (Graneheim et al., 2013; Park et al.,
2004). More importantly, nurses need to utilise therapeutic commu‐
nication to normalise feelings of guilt that caregivers may be expe‐
riencing. Important therapeutic communication techniques include
normalising, clarifying, focusing and summarising. Employing these
techniques and utilising open‐ended questions will help create a
therapeutic relationship in which the caregiver can express their
personal experiences and concerns. The following are suggested
statements a nurse may use to begin a conversation regarding care‐
giver guilt: “Being a caregiver can be very difficult. Many caregiv‐
ers have mentioned feeling guilty regarding their caregiving duties.
Have you experienced this?” “It sounds as if you have experienced
some difficulties in caring for your father/mother, would you like to
discuss these further?” or “How have you been feeling regarding
10 of 13 | PRUNTY and FOLI

TA B L E 3 Comparison of concept
Critical attributes of caregiver guilt in the dementia
attributes and Caregiver Guilt
context CGQ factors of caregiver guilt
Questionnaire (CGQ)
1) The expectation of a moral responsibility to care for No items
the individual with dementia
2) A negative, subjective appraisal of one’s own Guilt about not rising to the occasion
caregiving performance, including neglecting other as caregivers
roles and responsibilities and self‐neglect Guilt about self‐care
Guilt about neglecting other
relatives
3) A sense of transgression or violation of a moral Guilt about doing wrong by the care
standard as a caregiver to the individual with recipient
dementia

Note. CGQ: Caregiver Guilt Questionnaire Losada et al., (2010).

these caregiving challenges?” (Sherko, Sotiri, & Lika, 2013). By com‐
municating early and often with these caregivers, acknowledging
that they have a difficult role, opening up channels for conversation,
and allowing caregivers to freely express their struggles and needs,
nurses will better be able to identify and mitigate guilt in caregivers
to individuals with dementia. As individuals are able to express their
feelings, this allows for the provision of more holistic, person‐cen‐
tred care.
An additional aspect of nursing practice implications is to in‐
form the caregiver about the course that dementia may take, and
how challenging the symptoms may be to manage. Guilt, depressive
symptoms and lower quality of life are often reported when care‐
givers feel inadequate in managing dementia‐related behaviours.
Support to caregivers can be provided in the form of education and
strategies to manage increasing behavioural disturbances, personal‐
ity changes and changes in communication as dementia progresses
(Jennings et al., 2015). In this same manner, family members may
be educated; which in turn, may stimulate support for the primary
caregiver, encouraging their self‐care as the older adult’s symptom
management becomes increasingly challenging.
While the previously discussed practice implications have been
directed at caregivers, it is important that we also consider the well‐
being of the individual with dementia. At the core of the interest,
surrounding caregiver guilt is concern regarding the effect that the
caregiver’s mental health has on the individual with the diagnosis
of dementia. The prevalence of older adult abuse and neglect is
difficult to estimate due to the barriers of reporting, which include
those older adults with dementia who are unable to communicate
such abuse (Bond & Butler, 2013). As healthcare professionals and
members of the nursing profession, it is our duty to advocate for all
patients, with particular emphasis on those who may not be able to
advocate for themselves, such as individuals with a diagnosis of de‐
mentia. The health, well‐being and safety of these individuals should
be regularly examined.
Although there is no direct correlation between guilt and older
adult maltreatment located in the empirical literature, the issues
of caregiver mental wellness, including issues of guilt, and the vul‐
nerabilities of the individual with dementia, create dynamics for
nurses to consider. Vaidyanathan et al. (2018) describe the higher
risk for older adult abuse when cognition and degree of burden are
considered. These two factors for older adult abuse increase in risk
within the context of individuals with dementia. In the context of
neglect, the caregiver’s “guilt, pride, or shame might prevent him
or her from seeking help….” (Bond & Butler, 2013, p. 262). Thus,
caregivers may be hesitant to request assistance as the individual’s
needs increase.
The DSM‐V (APA, 2013) lists guilt as a potential symptom of
depression and, as has been previously noted, often negative care‐
giver emotions, including guilt, are not addressed until depression
develops. Caregiver depressive symptoms have been linked to elder
abuse. This is a particularly salient topic as individuals diagnosed with
dementia may be unable to report abuse. Accordingly, Pe’rez‐Rojo,
Nuevo, Sancho, and Penhale (2015) collected data from caregivers
using the Caregiver Abuse Screen (CASE; Reis & Nahmiash, 1995) to
examine elder abuse in individuals with dementia. Caregiver depres‐
sive symptoms, the frequency and reactions to problem behaviours,
and burden were significantly associated with CASE scores. Similar
findings, also using CASE (Reis & Nahmiash, 1995), were revealed by
Orfila et al. (2018). Caregivers of moderate to severely dependent
older adults who reported higher caregiver burden, anxiety and de‐
pression were at higher risk of abusing those under their care (Orfila
et al., 2018).
If excessive caregiver guilt develops, health professionals should
assess for potential abuse or neglect of the patient with dementia.
By identifying and addressing the development of guilt early and
employing the previously discussed interventions targeted specifi‐
cally at guilt, healthcare practitioners may be able to reduce the risk
of depression development in these caregivers and in certain cases,
prevent older adult abuse and neglect (Roach et al., 2013; Romero‐
Moreno et al., 2013; Rosa et al., 2009). This may ultimately lead to a
higher quality of life for individuals with the diagnosis of dementia.
10 | LI M ITATI O N S
Using the Walker and Avant (2011) approach, a historical review of
the literature did not extend past 2003. Although we have provided
a detailed accounting of our search methods, it is possible we have
PRUNTY and FOLI
neglected to include attributes of the concept that were embedded
in early literature. Last, the analysis was performed within the clini‐
cal context of individuals diagnosed with dementia; however, a small
sample of the background information, which was reviewed, inter‐
twined general characteristics of caregiver burden with caregiver
guilt.
11 | D I S CU S S I O N
In this concept analysis, we have provided a comprehensive defini‐
tion of guilt experienced by caregivers to individuals with the diag‐
nosis of dementia using the approach outlined by Walker and Avant
(2011). The creation of such a comprehensive definition for caregiver
guilt in the dementia context was necessary as it is unique from guilt
experienced with other chronic diseases. As dementia progresses,
the individual the caregiver once knew starts to disappear, and car‐
egiving is made more complicated as it may be met with resistance
from the individual with dementia (Caldas & Berterö, 2018). Further,
the inescapable deterioration of verbal communication, memory and
personality often leads to the loss of the essence of the individual
before the physical death actually occurs (Caldas & Berterö, 2018).
The described gradual disease progression of dementia can be dev‐
astating for familial caregivers (Albinsson & Strang, 2003), leading to
significant caregiver psychological overload and guilt, thereby mak‐
ing guilt experienced by caregivers to individuals with dementia dis‐
tinct from guilt experienced by caregivers to individuals with other
chronic diseases.
This comprehensive definition allows for future work in empirical
testing and accurate assessment in nursing practice. The new defi‐
nition was developed through extensive searching of nursing, psy‐
chology, religious and judicial literature for common usages of guilt,
extracting essential attributes, antecedents and consequences from
relevant research, and presenting this information through narrative
case examples. By doing so, efforts from healthcare practitioners to
identify and utilise this knowledge in patient care interactions are
facilitated.
Dementia is also a disease experienced by persons internation‐
ally. The World Health Organization (WHO, 2018) estimates that
there are currently more than 50 million people with the diagnosis
of dementia worldwide, the majority of whom are cared for by fa‐
milial caregivers. As importantly, caregiver guilt has the potential to
affect millions of additional lives. The WHO has echoed this concern,
indicating that caregiving to individuals with dementia can cause a
significant emotional toll on the caregiver. Research regarding this
topic has spurred the creation of WHO iSupport: E‐programme for
Carers of People Living with Dementia (2018). This online training
tool provides guidance and support on a variety of topics related
to caregiving to an individual with dementia, including: strategies to
deal with challenging behaviours, education on the provision of qual‐
ity care and the importance of self‐care for the caregiver. The cre‐
ation of such a training tool is reflective of the international impact
of dementia and caregiving to individuals with dementia. The WHO’s
| 11 of 13
emphasis on this specific population of caregivers further highlights
the need for a more comprehensive understanding of caregiver guilt
in the dementia context. The far‐reaching effects of dementia and
caregiver guilt make this conceptual definition increasingly appli‐
cable to the international community of nurses who care for older
adults.
12 | CO N C LU S I O N
Nurses working with individuals with dementia and their caregiv‐
ers should apply this definition of guilt and note that the presence
of guilt has potential negative effects on caregiver mental health.
In recognising feelings of guilt as they emerge, health professionals
can direct caregivers to appropriate supportive services, potentially
decreasing the risk for the development of depression and in select
cases, older adult abuse and neglect. Health professionals need to
remain educated on what community services currently exist, cul‐
tural norms for familial caregivers, and support the development of
new educational resources. Finally, nurses need to ensure open, non‐
judgmental communication with caregivers about their experiences
as many individuals may be reluctant to express feelings of guilt. In
this manner, nurses may be able to render holistic and comprehen‐
sive care for both the individuals with dementia and their caregivers.
Implications for Practice
• Nurses interface with individuals who are caring for those
with dementia in multiple settings, including acute, primary,
and community settings.
• These interactions are opportunities, through therapeutic
communication and education, to determine the presence
of guilt that may be unique to those whose caregiving is
complicated by the symptoms and trajectory of dementia.
• If guilt is assessed, normalizing this emotion, interviewing
for depressive symptoms, and directing caregivers to ap‐
propriate support services are important nursing interven‐
tions to help mitigate these feelings of guilt and ensure
quality care is being provided for the individual with
dementia.
ORCID
Karen J. Foli https://orcid.org/0000-0002-9510-4800
REFERENCES
Albertsen, E. J., O’Connor, L. E., & Berry, J. W. (2006). Religion and in‐
terpersonal guilt: Variations across ethnicity and spirituality, mental
health, religion & culture. Mental Health, Religion, and Culture, 9(1),
67–84. https://doi.org/10.1080/13694670500040484
12 of 13 | PRUNTY and FOLI
Albinsson, L., & Strang, P. (2003). Differences in supporting fam‐
ilies of dementia patients and cancer patients: A palliative
perspective. Palliative Medicine, 17(4), 359–367. https://doi.
org/10.1191/0269216303pm669oa
Alzheimer’s Association (2016). 2016 Alzheimer’s disease facts and figures.
Retrieved from https://www.alz.org/documents_custom/2016-
facts-and-figures.pdf
American Psychiatric Association (2013). Diagnostic and statistical man‐
ual of mental disorders (5th ed.). Arlington, VA: American Psychiatric
Publishing.
Ankri, J., Andrieu, S., Beaufils, B., Grand, A., & Henrard, J. (2005). Beyond
the global score of the Zarit Burden interview: Useful dimensions for
clinicians. International Journal of Geriatric Psychiatry, 20(3), 254–260.
https://doi.org/10.1002/gps.1275
Beck, C. T. (2002). Postpartum depression: A metasynthe‐
sis. Qualitative Health Research, 12(4), 453–472. https://doi.
org/10.1177/104973202129120016
Bond, M. C., & Butler, K. H. (2013). Elder abuse and neglect: Definitions,
epidemiology, and approaches to emergency department screenings.
Clinical Geriatric Medicine, 29, 257–273. https://doi.org/10.1016/j.
cger.2012.09.004
Caldas, C. P., & Berterö, C. (2018). Taking the responsibility in dementia
care: A concept analysis about facticity. Nursing Open, 5(3), 310–316.
https://doi.org/10.1002/nop2.162
Campbell, C. (1984). Nursing diagnosis and intervention in nursing practice
(2nd ed.). New York, NY: Wiley.
Cornell School of Law. (n.d.). Guilty. Legal Information Institute. Retrieved
from https://www.law.cornell.edu/wex/guilty.
Davis, J. D., Tremont, G., Bishop, D. S., & Fortinsky, R. H. (2010). A
telephone‐delivered psychosocial intervention improves de‐
mentia caregiver adjustment following nursing home placement.
International Journal of Geriatric Psychiatry, 26(4), 380–387. https://
doi.org/10.1002/gps.2537
Faiver, C., O’Brien, E., & Ingersoll, R. (2000). Religion, guilt, and men‐
tal health. Journal of Counseling and Development, 78(2), 155–161.
https://doi.org/10.1002/j.1556-6676.2000.tb02573.x
Freud, S. (1962). Civilization and its discontents. New York, NY: W.W.
Norton & Co.
Gonyea, J. G., Paris, R., & Zerden, L. D. (2008). Adult daughters
and aging mothers: The role of guilt in the experience of care‐
giver burden. Aging & Mental Health, 12(5), 559–567. https://doi.
org/10.1080/13607860802343027
Graneheim, U. H., Johansson, A., & Lindgren, B. (2013). Family caregiv‐
ers’ experiences of relinquishing the care of a person with demen‐
tia to a nursing home: Insights from a meta‐ethnographic study.
Scandinavian Journal of Caring Sciences, 28(2), 215–224. https://doi.
org/10.1111/scs.12046
Guilt (n.d.). In Merriam‐Webster online. Retrieved from https://www.mer‐
riam-webster.com/dictionary/guilt
Haidt, J. (2003). The moral emotions. In R. J. Davidson, K. R. Scherer &
H. H. Goldsmith (Eds.), Handbook of affective sciences (pp. 852–870).
Oxford, UK: Oxford University Press.
He, W., Goodkind, D., & Kowal, P. (2016). U.S. Census Bureau,
International Population Reports, P95/16-1, An Aging World: 2015.
Washington, DC: U.S. Government Publishing Office.
Hörnle, T. (2016). Guilt and choice in criminal law theory – A critical as‐
sessment. Bergen Journal of Criminal Law & Criminal Justice, 4(1), 1–24.
https://doi.org/10.15845/bjclcj.v4i1.1023
Jennings, L. A., Reuben, D. B., Chang Evertson, L., Serrano, K. S., Ercoli,
L., Grill, J., … Wenger, N. S. (2015). Unmet needs of caregivers of indi‐
viduals referred to a dementia care program. Journal of the American
Geriatrics Society, 63(2), 282–289. https://doi.org/10.1111/jgs.13251
Kugler, K., & Jones, W. H. (1992). On conceptualizing and assessing guilt.
Journal of Personality and Social Psychology, 62, 318–327. https://doi.
org/10.1037/0022-3514.62.2.318
Losada, A., Márquez‐González, M., Peñacoba, C., & Romero‐Moreno,
R. (2010). Development and validation of the Caregiver Guilt
Questionnaire. International Psychogeriatrics, 22(04), 650–660.
https://doi.org/10.1017/s1041610210000074
Maeve, M. (2013). Postpartum depression theory. In M. R. Alligood (Ed.),
Nursing theorists and their works (8th ed., pp. 672–687). St. Louis, MO:
Mosby Inc.
Martin, Y., Gilbert, P., Mcewan, K., & Irons, C. (2006). The relation of
entrapment, shame and guilt to depression, in carers of people
with dementia. Aging & Mental Health, 10(2), 101–106. https://doi.
org/10.1080/13607860500311953
Martz, K., & Morse, J. M. (2017). The changing nature of guilt in fam‐
ily caregivers: Living through care transitions of parents at the end
of life. Qualitative Health Research, 27(7), 1006–1022. https://doi.
org/10.1177/1049732316649352
MetLife (2003). A profile of American Baby Boomers (Rep.). Westport, CT:
MetLife Mature Market Institute.
Orfila, F., Coma‐Solé, M., Cabanas, M., Cegri‐Lombardo, F., Moleras‐
Serra, A., & Pujol‐Ribera, E. (2018). Family caregiver mistreatment
of the elderly: Relevance of risk and associated factors. BMC Public
Health, 18, 167. https://doi.org/10.1186/s12889-018-5067-8
Ortony, A., Clore, G. L., & Collins, A. (1988). The cognitive structure of
emotions. New York, NY: Cambridge University Press.
Palm, R., Jünger, S., Reuther, S., Schwab, C. G., Dichter, M. N., Holle, B.,
& Halek, M. (2016). People with dementia in nursing home research:
A methodological review of the definition and identification of the
study population. BMC Geriatrics, 16(1), 78. https://doi.org/10.1186/
s12877-016-0249-7
Park, M., Butcher, H. K., & Maas, M. L. (2004). A thematic analysis of
Korean family caregivers experiences in making the decision to place
a family member with dementia in a long‐term care facility. Research in
Nursing & Health, 27(5), 345–356. https://doi.org/10.1002/nur.20031
Pe’rez‐Rojo, G., Nuevo, R., Sancho, M., & Penhale, B. (2015). Validity
and reliability of the Spanish version of the Caregiver Abuse
Screen (CASE). Research on Aging, 37(1), 63–81. https://doi.
org/10.1177/0164027514522275
Razani, J., Kakos, B., Orieta‐Barbalace, C., Wong, J. T., Casas, R., Lu,
P. o., … Josephson, K. (2007). Predicting caregiver burden from
daily functional abilities of patients with mild dementia. Journal
of the American Geriatrics Society, 55(9), 1415–1420. https://doi.
org/10.1111/j.1532-5415.2007.01307.x
Reis, M., & Nahmiash, D. (1995). Validation of the caregiver abuse
screen (CASE). Canadian Journal of Aging, 14, 45–60. https://doi.
org/10.1017/S0714980800005584
Roach, L., Laidlaw, K., Gillanders, D., & Quinn, K. (2013). Validation of the
Caregiver Guilt Questionnaire (CGQ) in a sample of British dementia
caregivers. International Psychogeriatrics, 25(12), 2001–2010. https://
doi.org/10.1017/s1041610213001506
Robertson, J. (1994). The concept of guilt. Journal of Psychosocial Nursing
& Mental Health Services, 32(1), 15–18.
Romero‐Moreno, R., Losada, A., Marquez, M., Laidlaw, K., Fernandez‐
Fernandez, V., Nogales‐Gonzalez, C., & Lopez, J. (2013). Leisure,
gender, and kinship in dementia caregiving: Psychological vulnera‐
bility of caregiving daughters with feelings of guilt. The Journals of
Gerontology Series B: Psychological Sciences and Social Sciences, 69(4),
502–513. https://doi.org/10.1093/geronb/gbt027
Rosa, E., Lussignoli, G., Chitò, E., Kuffenschin, G., Lamanna, L., Cesare,
S. D., & Zanetti, O. (2009). Needs of caregivers of the patients
with dementia. Alzheimers & Dementia, 5(4), 54–58. https://doi.
org/10.1016/j.jalz.2009.04.193
Samuelsson, A. M., Annerstedt, L., Elmstahl, S., Samuelsson,
S., & Grafstrom, M. (2001). Burden of responsibility expe‐
rienced by family caregivers of elderly dementia sufferers.
Scandinavian Journal of Caring Sciences, 15(1), 25–33. https://doi.
org/10.1046/j.1471-6712.2001.1510025.x
PRUNTY and FOLI
Sanders, S., Ott, C. H., Kelber, S. T., & Noonan, P. (2008). The experi‐
ence of high levels of grief in caregivers of persons with Alzheimer’s
disease and related dementia. Death Studies, 32(6), 495–523. https://
doi.org/10.1080/07481180802138845
Sherko, E., Sotiri, E., & Lika, E. (2013). Therapeutic communication. JAHR
– European Journal of Bioethics, 4(7), 457–466.
Spigelmyer, P. C., Hupcey, J. E., Smith, C. A., Loeb, S. J., & Kitko, L. (2017).
Resistiveness to care as experienced by family caregivers providing
care for someone with dementia. Journal of Nursing Scholarship, 50(1),
36–46. https://doi.org/10.1111/jnu.12345
Sury, L., Burns, K., & Brodaty, H. (2013). Moving in: Adjustment of peo‐
ple living with dementia going into a nursing home and their fam‐
ilies. International Psychogeriatrics, 25(06), 867–876. https://doi.
org/10.1017/S1041610213000057
Tangney, J. P., Stuewig, J., & Mashek, D. J. (2007). What’s moral about the
self‐conscious emotions? In J. L. Tracy, R. W. Robins & J. P. Tangney
(Eds.), The self‐conscious emotions: Theory and research (pp. 21–37).
New York, NY: Guilford Press.
Tracy, J. L., & Robins, R. W. (2006). Appraisal antecedents of
shame and guilt: Support for a theoretical model. Personality
and Social Psychology Bulletin, 32(10), 1339–1351. https://doi.
org/10.1177/0146167206290212
Tsai, P.‐F. (2003). A middle‐range theory of caregiver stress. Nursing Science
Quarterly, 16(2), 137–145. https://doi.org/10.1177/0894318403251789
| 13 of 13
Vaidyanathan, S., Rupesh, E., Subramanyam, A. A., Trivedi, S., Pinto, C.,
& Kamath, R. (2018). Disability and caregiver burden: Relation to
elder abuse. Journal of Geriatric Mental Health, 5(1), 30. https://doi.
org/10.4103/jgmh.jgmh_8_17
Walker, L. O., & Avant, K. C. (2011). Strategies for theory construction in
nursing (5th ed.). Boston, MA: Prentice Hall.
WHO iSupport (2018). WHO iSupport: E‐programme for carers of peo‐
ple living with dementia. Retrieved from http://www.who.int/
mental_health/neurology/dementia/isupport/en/
Wu, H. Z., Low, L., Xiao, S., & Brodaty, H. (2009). Differences in psy‐
chological morbidity among Australian and Chinese caregivers of
persons with dementia in residential care. International Journal of
Geriatric Psychiatry, 24(12), 1343–1351. https://doi.org/10.1002/
gps.2264
How to cite this article: Prunty MM, Foli KJ. Guilt
experienced by caregivers to individuals with dementia: A
concept analysis. Int J Older People Nurs. 2019;e12227.
https://doi.org/10.1111/opn.12227