EVALUATING ADAPTED KUBLER-ROSS AND RANDO GRIEF MODELS AS THEY
APPLY TO ALZHEIMERS CAREGIVERS GRIEF AMONG SUPPORT GROUP
Tarah Amber-Ellis Keech
B.A., University of South Alabama, 2005
A thesis submitted to the
University of Colorado Denver
in partial fulfillment
of the requirements for the degree of
Master of Arts
This thesis for the Psychology Master of Arts
Tarah Amber-Ellis Keech
has been approved
Allison Bashe, DCT
Keech, Tarah A. (M.A., Clinical Psychology)
Investigating a Model of Alzheimers Caregiver Grief
Thesis directed by Associate Professor Kevin Everhart, Ph.D.
Many studies have examined the Alzheimers caregiver experience and looked at their
emotional experiences. It is well understood that grief is a component of a caregivers
experiences but the purpose of this study is to evaluate which adapted model of grief these
dementia caregivers experience, the K(jbler-Ross Five Stages or the Rando 6 Rs Stages.
Also, this study examined whether the grief experience co-varied in intensity to the
perceived decrement in functioning of the patient. This study includes interviews of 16
participants who were active spousal or adult-child caregivers to Alzheimers disease
patients. Quantitative analyses included basic demographics, administration of a modified
Clinical Dementia Rating Scale (CDR), and administration of the Meuser-Marwit Caregiver
Grief Inventory (MM-CGI). Qualitative analysis included thematic coding and constant
comparison of the interview content. The findings indicate that both models fit the grief
experiences of Alzheimers caregivers but there are several weaknesses to both models
and two new themes which should be accounted for in future research and model
development. Based on a simple regression analysis, there was no correlation discovered
between the CDR scores and MM-CGI ratings, indicating that the grief experience does not
co-vary with patient functioning.
This abstract accurately represents the content of the candidates thesis. I recommend its
TABLE OF CONTENTS
2. LITERATURE REVIEW....................................................5
Concepts of Grief to Examine..................................5
The KObler-Ross Five Stages Model...........................6
The Rando Six Rs Model....................................10
Alzheimers Caregiver Grief................................16
Non-Alzheimers Caregiver Grief............................20
3. METHODS ............................................................21
Design and Procedures........................................23
4. RESULTS ............................................................30
Limitations and Future Directions.....................46
A. QUALITATIVE QUESTIONS FOR SEMI-STRUCTURED INTERVIEW......51
WORKS CITED .....................................................52
1 FREQUENCIES AND OVERLAP FOR RANDO MODEL STAGE
2 FREQUENCIES AND OVERLAP FOR KOBLER-ROSS MODEL STAGE
1 CODING SPECIFICATIONS AND EXAMPLES OF EACH CODED STAGE.....28
2 DEMOGRAPHIC CHARACTERISTICS OF CAREGIVERS..................31
3 CDR AND MM-CGI SCORES......................................32
4 INCIDENT OCCURANCE COMPARISON BETWEEN GRIEF MODELS.........43
The number of individuals who are taking on the burden of caregiving is increasing
exponentially as the U.S. population of baby boomers is reaching senior citizen status.
Currently, people over the age of 85 are the fastest growing population and more than half
of them need some form of care assistance (Family Caregiver Alliance, 2008). It is
estimated that since 2007 over 25% of today's adult population has provided care for a
loved one who is chronically ill, disabled, or aging (2008). Such caregiving is a task that
presents its provider with a number of intense stressors in nearly all areas of their lives
including financial, social, physical, and emotional.
Of the patients who require care, it is estimated that over 5 million of them are living with
Alzheimers disease and other Alzheimers disease related dementias (ADRD)
(Alzheimers Association, 2008). For the purposes of this study, all of the ADRDs will be
referred to solely as Alzheimers disease because their disease progressions and the care
required are very similar to that of Alzheimer's. Caregivers of Alzheimers patients, who
are most commonly the patient's loved ones and relatives, face their own exceptional
challenges in addition to the unormal stressors of caregiving; specifically, the patient's
uncertain disease track and prognosis, behavior problems, progressive memory loss, and
communication skill decrements. Frank (2008) describes that, Alzheimer's is a brain
disease that not only results in loss of cognitive function, but as the disease advances, it
frequently causes changes in personality or mood as well, (p.520). Because Alzheimers
patients are losing their personalities and connections to the world and their loved ones,
their caregivers are faced with a unique pre-death grief which can strongly affect their life
and overall wellbeing (Marwitt, & Meuser, 2005).
Grief as it is classically conceptualized, is the multifaceted response to death and losses
of all kinds, including emotional (affective), psychological (cognitive and behavioral), social,
and physical reactions (Stroebe, Hansson, Stroebe, & Schut, 2001, as cited in Waldrop,
2007, p.196). Any observer of a dementia caregiver would likely say intuitively that the
caregiver is going through a grief of sorts and recent statistics indicate that the majority of
caregivers of Alzheimers patients experience feelings of grief (Collins, Liken, King, &
Kokinakis, 1993; Sanders & Saltz Corley, 2003). According to Waldrop (2007) it is normal
for caregivers to misinterpret grief experiences as simple distress as they are frequently
consumed with the responsibilities of providing intense daily care and unable to attend to
their distinct emotional experiences. We now know grief is one of the primary emotional
conditions that drives secondary reactions of burden and stress in caregivers and it can go
largely unrecognized and unaddressed potentially resulting in traumatic emotional,
psychological, and physical harm to the care provider (Marwit, Chibnall, Dougherty,
Jenkins, & Shawgo, 2008). These devastating secondary manifestations of grief can
include: despair, anger, loneliness, fatigue, feelings of helplessness and hopelessness,
sleep disturbances, exhaustion, and susceptibility to illness (Rando, 2000; Waldrop, 2007).
Caregiver grief, as it has been described by Meuser and Marwit (2001) is the intellectual,
affective, and existential elements of changing care demands and expectations, (p.658).
In other words, as Alzheimers disease progresses, the care demands and the relationship
between the patient and the caregiver change. Any individuals experience of grief may
vary completely from that of anyone else. Just as one person has hundreds of different
relationships, their experience of grief for any one individual will be unique in its strength,
duration, and presentation. Even though no two people will ever experience grief the same
way, there are likely to be similarities in the experience and process of spousal and adult-
child Alzheimers caregiver grief.
Caregivers of Alzheimers patients are present during the diminishment of their loved ones
personality, abilities, independence, and memory, while maintaining an active care provider
role and relationship. It is the investigators hope to deepen the understanding of the
Alzheimers caregivers grief and the patterns therein. By doing so, helping professionals
and caregivers themselves will be better equipped in facing the emotional and practical
challenges of this population. It will also be beneficial for practitioners and individuals to
have a framework and normalization for their experiences, a guide of what to expect and a
model on which to build their coping strategies. It is the aim of this study to discover a
model of grief which encompasses the unique stages and dynamics of Alzheimers
caregivers pre-death grief by evaluating the efficacy of two leading grief models as they
can be applied to the experiences of these caregivers. Although the caregivers may not
have critically assessed their own emotional experiences and grief, the author believes that
they do express the patterns and symptomologies of grief when they are interviewed in a
semi-structured interview with open-ended questions about their experiences and the
changes in their relationship with the patient. Additionally, it is the aim of this study to
investigate whether the experiences of adult-child and spousal caregivers who are caring
for an Alzheimers patient co-vary in intensity or perceived loss with every perceived
decrement in the patients functioning as it was alluded to in Meuser and Marwit's definition
of caregiver grief (2001).
The research questions which will be addressed in this study include whether or not the
pre-death emotional experiences of familial or spousal Alzheimers disease caregivers
match an existing adapted model of the grieving process, either the KCibler Ross Model or
the Rando Six Rs Model and whether or not the emotional experiences of familial or
spousal Alzheimers disease caregivers positively co-vary in intensity or perception of loss
to the actual disease severity and decrement in functioning.
Concepts of Grief to Examine
There are two models of grief which have been chosen as bases for comparison in this
study on Alzheimer caregiver grief: The Kubler-Ross Five Stage Model and the Rando Six
Rs Model. The Kubler-Ross model was selected for its prominence in popular literature
and because it is the most culturally popular accepted formula for the grief process. The
Rando model was selected from a plethora of other lesser known grief models because it
stood out as an intuitive match for what the investigator, a former Alzheimer patient
caregiver, experienced. Both models are published as frameworks for post-death grief and
as such, will be moderately altered to fit the scenario of pre-death grief. These adaptations
will be made only when necessary and their applicability and goodness of fit to the
Alzheimer caregiver experience will be evaluated and discussed. In order to limit the
scope of this study, there is no examination of abnormal or complicated grief with regard to
either of the primary grief models or their possible affects with Alzheimer caregiver grief.
When discussing pre-death grief it is necessary to mention the concept of anticipatory
grief and address its potential relevancy to Alzheimer caregiver grief. These models and
their histories are examined further in the next section.
The KQbler-Ross Five Stages Model
On Death and Dying in 1973 was Elizabeth KQbler-Ross's first book and was the vehicle
for laying out her five stage model of grief which is widely recognized today both in popular
culture and in grief literature. Since then, KQbler-Ross has expanded her theory and in the
last work before her death, On Grief and Grieving (2005) which was written from her death
bed, she delved further into her original five stages, refining their roles, rules and purposes.
Because these stages have been re-illuminated and further polished by her life
experiences, they can be assumed to be a more accurate and precise reflection of her
theory. As such, the author has chosen to use this most recent work, On Grief and
Grieving, (2005) as the text book on which to base this studys construction of the KQbler-
Ross Five Stage Model of Grief.
KQbler-Ross begins explaining her model by noting that these stages, as they are
presented, are reactions that many people have to loss and they are by no means
applicable to everyone as everyone experiences loss differently (2005). She states that
her intentions are to provide tools to help us frame and identify what we may be feeling,"
which will endow us with the resources to healthfully process the circumstances of life and
of loss (2005, p.7). The five stages are denial, anger, bargaining, depression, and
acceptance and although they are presented as a stage model, there are several
exceptions to that structure. Fundamental rules for the five stages which Kubler-Ross
slightly adapted over the years include that the experience of one stage is neither
necessary nor dependant on the experience of another, they do not have to be followed
orderly or fully, they can be revisited, and they are different in appearance and experience
for every individual (2005). She notes a rudimentary principle of her theory, Stages are
responses to feelings that can last for minutes or hours as we flip in and out of one and
then another, (2005, p.18).
Denial is KObler-Ross first stage of grief and is meant to encapsulate the experience of
shock or numbness after first learning of the loss (2005). As it is explained in On Grief and
Grieving, denial serves an adaptive and protective purpose by giving the griever an escape
from the reality of the loss and accompanying emotional pain and it helps to pace our
feelings of grief, (2005, p.10). Symptoms of this stage can include a sense that the world
is meaningless and overwhelming, and that the life of the griever no longer makes sense
as it used to (2005, p.10). Grievers in denial often repeat the story of the loss to others
and question the reality of the loss (2005). This questioning is a channeling which can
facilitate the transition into the second stage, anger.
Anger is a very powerful stage in the Klibler-Ross model. It is the grievers introduction to
the full knowledge of the loss as the denial begins to recede. According to KObler-Ross,
grievers in this stage give themselves a pass from the rules of logic or rationality as anger
is a natural human reaction to the unfairness of loss, (2005, p.16). Because of the nature
of anger, other negative emotions (sadness, anxiety, loneliness, distress) are typically
concurrently amplified (2005). KObler-Ross adds that for a healthy processing of grief,
anger is necessary and, In the process of grief and grieving, you will have many
subsequent visits with anger in its many forms, (2005, p.12). Through many narrative
examples, KObler-Ross develops her idea that anger is a strength to the griever in that it
adds structure to the previously experienced confusion of the loss (2005). As much of a
tool as the anger stage is, in the KObler-Ross model it eventually gives way to the third
stage which is more emotionally reactive, bargaining.
Bargaining is traditionally paired with the emotion of guilt (2005). This stage is defined by
the symptomatic questionings, What if? and, If only... as the griever begins to analyze
what different paths could have been taken to avoid this loss (2005, p. 17). In the
bargaining stage the griever is again protected or at least distracted from full acceptance of
the reality of the loss by mentally exploring alternate outcomes (2005). For the Alzheimers
caregiver, the bargaining stage likely includes all of these questions. These imagined
alternatives in the bargaining stage will eventually dissolve leaving only the truth of the loss
to be further realized and incorporated into the grievers reality.
In the depression stage, KObler-Ross invites the griever to, Allow the sadness and
emptiness to cleanse you and help you explore your loss in its entirety, (2005, p.22). She
is not discussing clinical depression, but a milder version, more closely related to an
emotional withdrawal and sadness. According to this KUbler-Ross model, the depression
stage should only last for the duration of its purpose in the grievers grief process and will
leave as soon as it has served its purpose in [the] loss, (2005, p.22). She claims that
even as the griever grows stronger and further separated from their loss, depression may
return. In the narrative of an adult-child caregiver Kubler-Ross acknowledges the
existence and differences between pre-death and post-death depression stages.
When she [the caregivers mother] was fighting for her life, my depression had
walls, a structure within which fights had to be fought. But after she died, the
depression that returned felt like being hit with a punching bag. I was knocked
down over and over, with no desire to get up again, (2005, p.22).
This highlights a point of potential applicability of this model to Alzheimers caregiver grief.
When caregivers are actively caregiving, there are so many tasks to be done, their
depression will seem like a part of their routine until another decrement is experienced in
the patient's status. Assuming there is a departure of depression, the next stage,
acceptance, begins to settle and the new reality post-loss is fully lived.
Acceptance is not described as liking the new reality but rather learning to live within it
(KQbler-Ross, 2005). From all of the grieving, bits and pieces of the new reality have
begun to accumulate and now there is a realization that this loss and the consequent
changes are forever. Kubler-Ross acceptance is "acknowledging all that has been lost
and learning to live with that loss, (2005, p.26). As her theory is originally explained
acceptance may be recognized by "having more good days than bad, (2005, p.26). For
Alzheimers caregivers, the pre-death acceptance stage of grief will likely look like a new
plateau of adaptation to the most recent decrement in the patients functioning or well
In review of Kubler-Ross Five Stages Model of Grief, she occasionally uses emotional
words and descriptions which are huge variables among the human experience and
interpretation, and therefore they are a weakness to her theory. Her depression stage is
the most incongruent with the pre-death grief of Alzheimers caregivers. There is a
sadness that is intimately connected with the role and experiences of caregivers and each
of the stages KQbler-Ross presents. Her theory lacks a differentiation between the
sadness that may accompany the entire Kubler-Ross grief experience and the reality of
on-going grief. However, for the original theory to apply to pre-death grief, it is essential to
acknowledge that depression, as KQbler-Ross defines it, will never fully leave. Likewise,
post-death acceptance, as it is set in the five stage theory, is a completely different
experience from that of pre-death acceptance. Pre-death acceptance is acknowledging
and adapting to the loss, but with the constant downward trajectory of the patients
disease, having more good days than bad, as a caregiver is rarely possible (2005, P-26).
The caregivers acceptance of a pre-death loss, or decrement in functioning, is more
readily identifiable in their routine adaptations to the loss such as changes in
communication, health care, hygiene routines, or daily living.
KObler-Ross, in On Grief and Grieving, designates a section of her book to Alzheimers
caregivers and because it is such a typically long-term disease she notes that there is
ample time to experience grief fully before the actual death (2005). In reflections on her
Five Stage Model, it is easy to see that the thread which runs between all of the grief
stages is the process of realizing each new reality after each perceived loss. In this way,
the KGbler-Ross model fits seamlessly with the pre-death grief of an Alzheimers caregiver.
When each new decrement in the patient's functioning is recognized, there is the process
of realizing and incorporating that loss into a new reality of everyday functioning and
Randos Six Rs Model
Therese Rando is a clinical psychologist who works primarily in private practice and has
dedicated her career to working, teaching and writing in the areas of grief and loss. In her
1993 book, Treatment of Complicated Mourning, Rando further expounds on her previous
work and describes her theory of grief as the Six Rs Process of Mourning. The R
processes are recognition of the loss, reaction to the separation, recollection and re-
experiencing the deceased and the relationship, relinquishing old attachments to the
deceased and old assumptions, readjusting to the new world, and reinvesting. Although
Treatment of Complicated Mourning (1993) is a textbook designed to teach professionals
how to work with traumatic and complicated grief, she created the Six R Process to outline
healthy grieving as a basis for contrast to dysfunctional grieving. She describes the six
processes as a refinement of the processes necessary in order to resolve grief and
mourning," (1993, p.43).
Rando lays out the six Rs on a broader foundation of three primary phases of grief and
mourning: avoidance, confrontation and accommodation (1993). The avoidance phase is
the first experience after the news of the loss is received and is most recognized by the
grievers desire to avoid the news or to deny the reality of the loss. Confrontation is when
the griever becomes acutely aware of the loss and typically experiences the strongest
emotional reactions. Accommodation is the phase when the griever begins to experience
less intense emotions and then is able to gradually reenter their social and everyday world.
As a basis for the rules of her processes Rando notes the importance of the construct of a
process as it is separate from a mere outcome, processes are correlated and interrelated
(1993). According to Rando, these processes are able to occur simultaneously with
elements of one process possibly appearing in more than one phase, and the experience
of the phases can repeat or occur in a non-linear fashion (1993). She notes as KObler-
Ross did, that these processes are not the rule of grieving, more so a general reflection of
a typical and healthy grief (1993).
In the avoidance phase, the first R is recognizing the loss. This is the process after the
griever learns of the loss, when they begin to acknowledge and understand it (Rando,
1993). The acknowledgement is not a full acceptance of all of the implications of the death
and loss but rather a cursory concession that the loss has occurred. In this recognition
process, denial can be used to buffer the intense emotionality of the situation. When
explaining the process of recognizing and denying the loss, Rando points out that if there is
a lack of sufficient evidence, the griever may hold out hope that the loss has not actually
occurred (1993). From the viewpoint of an Alzheimers caregiver, if the caregiver has yet
to receive confirmation that Alzheimers disease is the diagnosis, they will be unable to
acknowledge the inevitable and encroaching loss of the patients personality, memory, and
functioning. A further complication can happen when the Alzheimers patient, after
demonstrating memory loss or inability to function on at their previous capacity, has a brief
experience of lucidity and to some degree their previous levels of functioning are
demonstrated again. This may be misinterpreted by the caregiver as evidence that there is
nothing seriously wrong with the patient and that life, as it was known before can be
possibly regained. However, Rando notes that sometimes all it takes to recognize the loss
is a small piece of substantiating evidence (1993). In the case of an Alzheimer's patient
this evidence is presented with every new decrement of functioning and the caregiver is
forced to acknowledge the new loss. Understanding the loss, according to Rando, is when
the griever understands the practical, physical reasons for it (1993). For the Alzheimers
caregiver this could be a stage of information gathering about the disease, heritability, and
prevention as this is also a time when the griever begins to consider the potential for
something happening to them (1993).
The second R is the beginning of the confrontation phase and is the grievers reaction to
the separation. These reactions typically follow recognition of the loss and are
experienced as an emotional pain that affects every aspect of the grievers human
functioning (Rando, 1993). Rando makes a point of emphasizing that it is essential to
healthy mourning for the griever to identify, label, and express these reactions (1993).
The third R is a combination of recollecting and re-experiencing the deceased and the
relationship that the griever had with them (Rando, 1993). Rando's theory states that the
mourner will have to make many changes to adapt to the loved one's physical absence,"
and, "Over time, the mourner must discover new ways of relating to the deceased, (p.48).
This recollection and re-experiencing may occur in co-variation of intensity and level of
adaptation with Alzheimers caregivers after every decrement in the patients functioning.
The caregiver has to make changes to the way they emotionally, verbally, and physically
relate to the patient and the relationship between patient and caregiver essentially morphs
into a new relationship separate from the relationship they both previously knew. Rando
acknowledges that this phase requires a modification of what used to be rather than a
complete emotional withdrawal, and this is exactly what the caregiver must do (1993). In
this stage of recollecting and re-experiencing, Rando states that the healthy griever will be
able to realistically remember the way the deceased was and likewise, an Alzheimers
caregiver will be able to recall the way the patient was before the disease.
The fourth R is relinquishing old attachments to the deceased and to the old assumptive
world (Rando, 1993). By relinquishing old attachments Rando means that the griever
should reform their relationship with the deceased into one that matches more closely the
new reality and prunes away the attachments to the once full and physical being (1993).
Rando states that both global and specific assumptions will need to change. With the new
reality of each loss and the increased absence of the patients personality, the grievers
assumptions about the world and mortality will likely be at the very least questioned. To
reduce the resulting cognitive dissonance, the griever must readjust their global
assumptions (1993). The specific assumptions that will change in the grievers life include
their self-view, the view of their role in the life of the deceased and the role of the deceased
in their life. Rando states, "With the loss of the person comes the loss of unique
gratification, resources, and meaning, and, The mourner must learn to be without the
particular interaction, validation, reinforcement, and role-fulfilling behaviors previously
existing in the relationship," (p.51). These same relinquishments are experienced by
Alzheimers caregivers when they must learn to be without the previously established and
reciprocal relationship they had with the patient.
The fifth R is the beginning of the accommodation phase and is readjusting to move
adaptively into the new world without forgetting the old, (p.52). As the old assumptions
are removed in the phase of relinquishing, new assumptions must be created. The extent
of the readjustment is dependent upon the importance and emotional connection the
deceased had in the grievers life. This phase also contains the development of a new
relationship with the deceased. Rando makes a strong argument against putting the past
behind you and instead encourages the griever to find ways to remember the deceased
and incorporate the memories of past experiences they shared into their new life (p.53).
This readjustment is a formation of a new identity just as Alzheimers caregivers are forced
to assume new roles and new identities within their relationship with the patient; children
and spouses become the caretakers and providers. In this readjusting phase, Alzheimers
caregivers also have a unique perspective and opportunity to allow the memory of their
loved one to be carried with them in this new relationship with the demented patient.
Reinvestment is the sixth and final phase of the Rando model. It is meant to define the
time when the griever begins to spend their emotional and mental energy towards forming
new relationships, not as a replacement for the deceased but rather as a supplement to the
experiences and relationship they once had (Rando, 1993). Rando notes that the new
reinvestments do not have to be in relationships that fill the same role as the deceased
once occupied (1993). For instance, a spouse does not have to remarry to constitute a
reinvestment, rather they can create new friendships or begin new activities for their own
benefit (1993). This phase of Randos model may not fit completely with the experiences
of the Alzheimers caregiver as caregiving, in and of itself, is a very consuming role and
change from which caregivers may not be able to separate themselves before the patient
passes away. Also, reinvestment may not accompany each decrements grief cycle but
may occur randomly or when the opportunities are presented.
In her examination of loss, Rando points out that, A mourner may sustain a psychological
loss without an accompanying or consequent physical loss," (1993, p.21). This is the
backbone of the mystery that is the grief experience for Alzheimers caregivers who are
grieving their patient while they are still physically present.
Anticipation in any context, heightens human awareness of their present state and sends
the mind reeling with imaginations of situations to come. Kubler-Ross noted that naturally,
in anticipation of grief, we occupy ourselves with the loss ahead, (2005, p.2). The
Meuser and Marwit (2001) study claims that, Anticipatory grief in dementia caregiving is
real grief, equivalent in intensity and breadth to death-related grief, (p.658). As the term
was originally used in psychological literature, it represented the anticipation of the death of
a loved one and the emotional responses which ensued. Anticipatory grief was first used
as a coping tool to practice the grief that would follow a death (Christopherson, 1976;
Carey, 1977; Sanders & Kardinal, 1977; Powers, 1977; Carey, 1979). The term then
expanded to account for past, present, and future losses as some losses and grieving had
uncertain trajectories (Boss, 1999). As it is presently connoted in our everyday lexicon and
reflected in literature, anticipatory grief is future-focused, as the long goodbye," or, the
goodbye without leaving (1999). There is growing research to support that anticipatory
grief is a normal function of the caregiving role (Sanders & Saltz Corley, 2003). With
regard to anticipatory grief and Alzheimer's disease caregivers, KCibler-Ross notes, The
limbo of loss is in itself a loss to be mourned, (2005, p.4). In accordance with her five
stage model, KUbler-Ross allows that in the experience of anticipatory grief her Five
Stages Model of Grief may be followed but that the anticipatory grief itself is the first true
stage of grief (only for those who can foresee the ultimate and impending loss of a
someone; not in the event of sudden loss), (2005). Rando (2000) supports that normal
anticipatory mourning is typically in conjunction with an imminent loss, but only expounds
to note that it is parallel to the patient's deterioration. The future focus of anticipatory grief
does not allow an accounting of the losses being currently experienced by the Alzheimers
caregiver and therefore, is incomplete and inadequate in this application.
Alzheimer Caregiver Grief
The emotional challenges faced by the Alzheimers caregiver are neither simple nor
absolute. The 36-Hour Day, by Mace and Rabins (1981), was one of the first resources to
reference these challenges and explain the emotional experiences of caring for a loved
one with Alzheimers disease. They wrote,
As the person's illness progresses and the person changes, you may experience
the loss of a companion and a relationship that was important to you. You may
grieve the way she used to be. We usually think of grief as an emotional
experience that follows a death. However, grief is a natural emotional response to
loss and so it is a normal experience for people who love a person with a chronic
illness, (1981, p. 209).
Mace and Rabins (1981) also explained that, Grief associated with a death may be an
overwhelming experience in the beginning, and gradually lessen. Grief associated with a
chronic illness seems to go on and on, (p.164). During the decline of dementia, there is
never a resting place or a feeling of completion as the diseases uncertain trajectory means
each new day could be as wonderful as though nothing were wrong or as devastating as if
the patient had already died yet with no end in sight.
As mentioned before, caregivers of any type are at an increased risk for negative physical
and mental repercussions and caregivers of Alzheimers disease patients are at an even
more elevated risk (Haley, Levine, Brown, Berry, & Hughes, 1987; Lorensini & Bates,
1997; Sanders & Adams, 2005). Sanderson and Adams (2005) conducted a study to
specifically evaluate the Alzheimers caregivers vulnerability and susceptibility for
experiencing clinically significant depression. They found that the grief of Alzheimers
caregiving is a significant predictor of depressive symptoms as the ongoing actual and
anticipated losses that caregivers experience create a situation which can promote and
incite grieving and depression (2005). Their findings support previous research which
documented that caregivers of Alzheimers patients had consistently elevated levels of
depressive symptoms compared to controls (Adkins, 1999; Baumgarten, Infante-Rivard,
Hanley, Becker, & Gauthier, 1992; Sanders & Adams, 2005; Staight & Harvey, 1990).
Given the typical course of the disease, Alzheimer's patients could require care for 12 or
more years, indicating that their caregivers could be experiencing chronic depressive
symptoms for the duration of a decade or more (Alzheimers Association, 2008). Sanders
and Adams (2005) concluded from their research that depression and grief often co-occur
during the caregiving for Alzheimers patients, and historically depression has precluded
potentially necessary attention to the caregivers grief experience.
Waldrop (2007) found more intense grief reactions in the caregivers of non-Alzheimers
patients as the disease worsens and begins to reach the final stages (Ponder & Pomeroy,
1996). Waldrop's (2007) study linked the patients symptom exacerbation to increased
caregiver worry and guilt. Adams and Sanders (2004) did find that Alzheimers caregivers
report substantially more symptoms of grief during the final stages of the disease.
Likewise, Jones and Martin (1992) found that grief is noticeably more intense when the
patient is no longer able to recognize the caregiver, a symptom typical for the middle and
late stages of Alzheimers disease. These findings support the authors hypothesis that the
emotional experiences of caregivers co-vary with the patients perceived decrements in
Meuser and Marwit (2001) looked to assess the experience of grief for Alzheimers
caregivers and were able to analyze the quantitative and qualitative aspects of the grief
process across the disease stages. They retrieved 87 questionnaires from current
Alzheimers caregivers which included demographic information, the Clinical Dementia
Rating interview (CDR) to determine the patients disease stage, the Anticipatory Grief
Scale (AGS), an alternative grief questionnaire which was adapted solely for the purposes
of their study, and a semi-structured interview whose contents they analyzed to determine
the nature and themes within the caregiver experience (2001). Meuser and Marwit (2001)
asked six open ended questions and provided the caregivers the opportunity to respond
with essay-type answers:
(1) Tell us something about yourselfyour family, work, and interests; (2) What
was your parent/spouse like before he or she became ill with dementiawork,
interests, role in your life? (3) What were your reactions to the early recognition of
dementia (to early cognitive changes, to the diagnosis)? (4) How has your life
changed as a result of caregiving? What have been the major losses? (5) Would
you characterize your experience as a grief experience? How have your grief
reactions changed over time? And, (6) What do you expect will be (or has been)
the impact of early grieving on later adjustment to death? (p.660-661).
The data they received was processed by a group of trained professional coders and then
the reviewers provided narratives of the responses whose themes were then delegated
into subsets and themes (2001). Their analysis indicated that there were significant
differences between the experiences of spousal and adult-child caregivers and that the
perceptions of grief and loss were closely linked to the perceived care demands (2001).
The Meuser and Marwit (2001) analysis resulted in a comprehensive list of the various
experiences of the caregivers (spousal and adult-child separately) across the three main
Alzheimers disease stages but they did not match those themes to a concise and specific
model of grief.
Frank (2008) discovered that grief experienced during Alzheimers caregiving is the
primary barrier to the caregivers personal well being and their effectiveness in providing
care. Frank used a mixed-methods approach and explored 353 open-ended survey
responses from spousal, adult-child, and relative caregivers who were currently providing
care or who had lost their patient within the past six months (2008). The only question that
Frank analyzed for this article was, What would you say is the biggest barrier you have
faced as a caregiver? (2008, p.519). The data received was processed to systematically
analyze, sort, and arrange the content according to themes, trends, and common words.
From the analyzed data Frank was able to tease the responses into five major categories,
each with subcategories (2008). The categories are: caregiver role versus personal life,
patient-related challenges caused by the disease, personal grief and loss, lack of support,
and communication, (2008, p.519). Frank goes on to describe the quality of the
responses for the categories and attempts to draw direct links between the categories and
grief, either anticipatory or ambiguous (2008). Some of the arguments she makes are
directly relevant to the experience of anticipatory grief and ambiguous loss but others lack
a clear and convincing argument. Another limitation to the Frank (2008) article is the lack
of a specific construct for the term barrier. As this is the term that is being investigated
and the question that was posed to the caregivers, there is substantial need to define and
operationalize the term, its applications, and implications within the realm of caregiving.
Non-Alzheimer Caregiver Grief
Using a mixed-methods, two stage approach Waldrop looked at the grief experience of
caregivers of non-ADRD terminal patients and found that caregiver grief is a sensitive state
of heightened responsiveness emotionally, psychologically, and physically (2004, p.197).
Losses experienced by the terminal patient are mirrored in the intensity of the physical,
social, and mental losses of the patient (Loscalzo & Brintzenhofeszoc, 1998; Waldrop,
2007). However, this is unlike Alzheimers disease as patients most often (depending on
disease stage) lack insight into their condition. Waldrop also found that as terminal
patients continue to incrementally decline, the losses experienced by the caregiver are
compounded and there is a correlation between the later stages of disease progression
and increased experiences of caregiver grief (2004).
Participants were all English-speaking adults over the age of 18 and self-reported to be
actively providing primary care to an Alzheimers disease parent or spouse. There were 19
participants recruited and 16 completed participation of the study. The three recruits who
did not complete the study failed to return a series of three follow-up contact attempts.
Caregivers were recruited from Alzheimers Association support groups and were asked to
participate in a one-time interview focusing on their emotional experiences since
caregiving. Their participation was completely voluntary and had no potential impact on
their relationship with their support group. Participants did not receive incentives or
remuneration. After receiving express and written permission from the Alzheimers
Associations Colorado Chapter, the investigator contacted the support group leaders by
calling their association published contact phone numbers. The studys purposes and
intents were disclosed to the leaders and they were given the opportunity to agree to
participation or not. For those leaders willing to share the study opportunity with their
group, recruitment flyers were emailed digitally or mailed directly. The leaders were also
given a script to use when presenting the study opportunity and to answer any common
questions they may have. The study information and researchers contact information was
distributed to any interested participants at the beginning of their regularly held group
meetings. The participants then contacted the recruiter directly, via email or phone, at
which point their interest in participating was reassessed and a meeting time and place for
the interview was selected.
Each caregiver participant is considered a primary subject and was asked to read and sign
a consent form before participating in the study. Potential risks to the primary subject
included distress or discomfort associated with discussing their emotional experiences and
their relatives disease progression. The consent form informed the participant of these
possible emotional reactions to the interview. Participants had the option to stop
conducting the interview at any time, not answer a question if they feel uncomfortable
doing so, and request that their interview be removed from the studys data. All measures
were taken by the investigator to ensure that the potential for risks to the subjects were
Each caregivers patient is considered a secondary subject because it is their health
information and disease progression which sets the stage for the caregiver's experiences
and therefore it must be discussed and recorded. Due to the nature of their disease, the
secondary subjects were not asked to consent to the study but as with primary subjects, all
measures were taken to minimize any risks to all subjects. All surnames and other
identifying information from both subject sets were deleted from the audio recordings and
were not entered in the transcriptions.
Design and Procedures
This study was designed to elicit detailed qualitative descriptions of the Alzheimers
caregivers emotional experiences during their caregiving journey which could then be
analyzed and compared to the two proposed models of grief. Also, this study was
designed to compare the patients dementia severity as measured on a modified version of
the CDR (Berg, 1988) scale to the caregivers grief levels as they are measured through
the Meuser-Marwit Caregiver Grief Inventory (MM-CGI) (Meuser & Marwit, 2002). After
initial recruitment, once the caregivers contacted the investigator, they met for their
interview at a private location of their choice (either their home, the Alzheimers Association
Colorado Chapter headquarters, or a public establishment). To prevent any exacerbation
of responses or uncomfortable emotional reactivilty, the study was not conducted during
any traditional holidays which might have been emotionally heightened times for
caregivers. The entire interview consisted of: the consent process; brief, basic
demographic questions; a brief and adapted version of the CDR (Berg, 1988) designed to
gain full understanding of the Alzheimers patients disease progression; eleven qualitative,
open-ended interview questions (see Appendix A for the list of questions); participant self-
administration of the MM-CGI (2002); and debriefing. To fully analyze the content of the
data, voice recordings and transcription of the interviews were necessary and all data was
collected and stored using methods which ensured participants maximum anonymity.
There was no tangible incentive for participating in this research so in order to obtain
enough subjects and to ensure more honest answers, a short interview was necessary,
and all of the interviews were completed in 45-120 minutes. There will be no post-
interview follow-up or questioning. At the close of the interview, pamphlets were offered to
participants including information about free community Alzheimers caregiver support and
resources which are available to them through the Alzheimers Associations Colorado
Chapter. Participants were free to decline participation at any point during the interview or
after the interviews completion.
Participants verbally reported the patient's and their gender, age, and ethnicity, as
well as their relationship and duration of their relationship to the patient, history and
intensity of their caregiving activities, perceived external caregiving help, list of life
changes since becoming a caregiver, list of perceived social support, and the
patients Alzheimers diagnosis and treatment history.
To determine the severity of the disease progression of the patient for whom the participant
is providing care a brief assessment of the patients disease status is necessary. The
original CDR is a standardized semi-structured interview which serves to determine the
cognitive status of dementia patients (Berg, 1988). The format of the questions has been
modified solely for the purposes of this study so it could be verbally administered to the
caregiver. The adaptations have only been made when necessary to prompt the retrieval
of the most accurate information. There are six areas of cognitive functioning which are
addressed by the CDR including: memory, orientation, judgment, social relations, home
life, and personal relations (1988). The researcher used their best clinical judgment when
rating the participants patients.
The MM-CGI is a standardized indicator of the nature and extent of the grief
experience of a caregiver who is currently providing care (Meuser & Marwit, 2002).
This was administered at the close of the interview, prior to debriefing so as to
prevent its wording from interfering with potential interview question response
wording. It is a self-report inventory, which uses a Likert-type scale and it has
demonstrated consistency reliability alpha scores ranging from .90 to .96 which
speak to the inventorys content validity (2002). The MM-CGI also demonstrated
high validity when compared to the existing related inventories (2002). In addition to
the Total Grief score that the MM-CGI provides, the three factors of the 50 items are
Personal Sacrifice Burden, Heartfelt Sadness and Longing, and Worry and Felt
Isolation (2002). All of these factors have face value relevance to the grieving
experience, share similarities to the grief related factors of depression, strain, and
support, and retain distinctive grief-specific attributes (2002).
The key constructs that were assessed during the interview include: the perception of
the relationship before the AD diagnosis; perception of the relationship immediately
after the diagnosis; perception of the relationship since the diagnosis; and the
emotional processes related to each perceived loss. The questions selected for the
interview were based on Part III of Rando's Grief and Mourning Status Interview and
Inventory (GAMSII) (1993). The GAMSII is a clinical guideline she developed to
facilitate comprehensive assessments of grief and mourning and is not a scientific
measure or instrument but rather a structure used to illicit full responses from the
grieved and to draw out a complete history of their relationship with the deceased
and their functioning since the loss. Part III of the GAMSII is the structured interview
section and deals with ten topic areas, of which three were adapted to pre-death
circumstances and used for this study's adaptations of interview questions: Nature
and meaning of what has been lost; Mourner's reactions to the death and coping
attempts; and, Mourners relationship to the deceased and stimuli associated with the
deceased. Appendix A contains these adapted questions which were used for the
qualitative data collection in the semi-structured interview. The questions were asked
in order and the interviewer was allowed to ask clarification questions if an answer
provided seemed off topic, vague, or incongruent with previous answers. Also, if the
participant answered a question in conversation before it had been asked, in turn the
interviewer restated what the participant had said previously and requested any
The quantitative analysis was run on SPSS 16.0 for MS Windows and includes basic
statistics, such as descriptives and means for the demographics, CDR ratings, and
MM-CGI ratings. To assess the findings related to the first research question,
percentages of each grief model's stage occurrences are compared and evaluated.
To evaluate the findings related to the second research question, the CDR and MM-
CGI Total Grief scores are compared using a simple regression analysis. Data was
examined for outliers, normality, skewness, and kurtosis.
The interviews were directly transcribed from the tape recordings by the researcher.
A constant comparison method of qualitative research was used to begin coding the
data in addition to coding thoughts and phrases which were either direct
representations or allusions to experiences of the grief models specific stages.
Table 1 represents the phrasing and ideology used as guidelines for coding each
stage in the KQbler-Ross and Rando models along with examples of those coded
comments. Constant comparison is a way to develop grounded theory, which
consists of categories, properties, and hypotheses that link between properties and
categories (Merriam, 1998). When using constant comparison, the investigator
started off with an incident from the interview and compared it with another incident
from the same data set. The incidents which did not fit into either of the grief models,
lead to additional stages which were compared to each other and the grief models.
The relationships between the coded variables and occurrences of each stage were
examined and comparatively analyzed to ensure that all applicable content was
captured in each appropriate category. These results and codings were completed in
entirety two separate times by the investigator and then compared against each other
in an effort to increase validity. In addition, theoretical notes were made throughout
the coding process to identify and potentially question, expound, and clarify the
previously specified grief models.
Coding Specifications and Examples of Each Coded Stage
Model / Theme Coded For Example Statements (Participant Number)
Denial Overwhelming, Shock, Numbness, Questioning reality of loss, Statements of denial -1 was numb, 1 was mainly like, What do you do?" (15) -1 just was so overwhelmed, 1 thought, How could this be happening?" (2) -1 don't want to see him declining." (8)
Anger ll-logical, Unfairness, Amplified emotions, Angry or hostile expressions -My reaction was mostly anger." (5) -"To me it was the hardest thing in the world to learn not to get angry." (8) -Pure terror. Pure terror. For losing everything." (3)
Bargaining Guilt, "What if?", "If only..., Imagined alternatives, Not deserving -If she had a physical disease, at least we could talk about it." (15) -It isn't fair. He's been working hard all of his life, he deserved a little time." (2) -It's not like he's some mean guy where you say, 'Good riddance." (2)
Depression Sadness, Depression symptoms, Emotional reactions, Entirety of loss -Tm just sad, very sad (crying)." (8) -1 go in and out of that empty sick feeling." (4) -1 tend to get emotional (crying)." (1) -I wasnt sleeping and still, I can't concentrate." (9)
Acceptance Living with loss, New tactics, Changes in functioning and relating, Best possible -Then I got to thinking, I dont have to deal with all of that today. Kind of a warmth washed over me." (4) -It has to be done and you just do the best you can." (13) -Take them from where they are." (14)
Recognize Beginning to acknowledge, Denial, Worry for self for AD -I remember it was August and he hadnt really been watching baseball, which is one of his passions." (4) -I dont want to deal with this." (8) -She'll lash out and its bizarre because shes not that way." (20)
Reaction Emotional reactions and pain, Confrontation of AD logistically and emotionally -I thought, 'I need to get him to a doctor." (4) -You are still alone, that's the worst (crying). (5) -I felt like a failure." (14)
Recollect/ Re- Experience Reflections from pre-AD, Relationship changes -Now he's just a sweet, cooperative guy." (4) -Sometimes 1 will talk to her...We used to do all kinds of stuff together." (13) -I look back at all the stuff we did together and Ive been lucky. (8)
Relinquish Get rid of old assumptions, New self-view, Loss of relationship, New reality -1 have my health and my work and more activities to make it easier." (9) -1 no longer have a partner. 1 am just his caregiver." (10)
Readjust Moving adaptively into future (for self and patient) -Clinical studies [are] almost therapeutic because you feel like you're doing something for the future."(4)
-This is my job." (12)
-"We'll get through this, knowing what the end result will be."
Table 1 (Cont.)
Model / Theme Coded For Example Statements (Participant Number)
Reinvest Spending energy else- where, New roles and activities -This has been so fulfilling for me. (13) -I have met people who will be my friends for the rest of my life." (4) -I plan little trips for myself. (13) -l got a cat and it has been good and kept me company. (9)
Additional Found Themes:
Information Gathering Seeking professional advice, Gathering resources -l bought all kinds of books and tried to read up on it and learn as much as 1 could. (6) -Support groups are really informative because you hear how some of them handle it and what they do. (9)
Validation Statements Location specific, Benefits of decisions and actions taken -Its just a wonderful place. It's such a relief to know that hes being well looked after. (9) -l am doing the best 1 can. (3) -l haven't had anyone say to me, '1 dont think youre doing a good job. (11)
Table 2 summarizes demographic information on the 16 participants included in the study.
As Table 2 demonstrates, caregivers were predominately female but there was a near split
in spousal caregivers and adult-child caregivers. There is also a greater percentage of
early onset Alzheimers patients than occurs in the natural population for reasons which will
be addressed in the discussion section of this paper.
Table 3 summarizes the CDR and MM-CGI three factor and Total Grief scores for each
participant. For the CDR, scores can be between 0 and 3; 0 represents no impairment, 0.5
represents questionable impairment, 1 represents mild impairment, 2 represents moderate
impairment, and 3 represents severe impairment. All of the patients represented by their
caregivers scored between 1 and 3. The MM-CGI factors are: A, personal sacrifice and
burden; B, heartfelt sadness and longing; and C, worry and felt isolation. In the Total Grief
scores, only four of the participants scored in the high range (1 SD above the mean, SD =
31.6, M = 144.0), all other participants were within the normal range.
Regarding the parametric assumptions of the CDR and MM-CGI Total Grief data, the initial
analysis of the data displayed in histograms indicated that normality was met. Levine's test
indicated that the assumption of homogeneity of variance was not met so in order to
normalize the data, a log-linear and a 1 /square root transformations were conducted on all
Demographic Characteristics of Caregivers (N = 16)
Female N = 12 (75%)
Male N = 4 (25%)
Caregiver Relation to Patient
Spouse N = 9 (56%)
Adult-Child N = 7 (44%)
Range 30 78 years
Mean 59.38 years
Range 54 86 years
Mean 71.25 years
Age of Patient at Diagnosis
50 65 (Young Onset) N = 8 (50%)
65 Up (Traditional Onset) N = 8 (50%)
Caucasian N = 13 (81 %)
Hispanic N = 2 (13%)
African American N = 1 (6%)
Caucasian N = 13 (81%)
Hispanic N = 2 (13%)
African American N = 1 (6%)
Range 16-62 years
Mean 34.56 years
Range 30 64 years
Mean 55.86 years
In-Home Not With Caregiver N = 4 (25%)
In-Home With Caregiver N = 5 (31%
Out of Home (Nursing Home) N = 7 (44%)
Highest Education Completed
High School N = 0
Four Year College Degree N = 7 (44%)
Post Graduate Degree N = 3 (19%)
Information Not Obtained N = 6 (38%)
High School N = 2 (13%)
Four Year College Degree N = 5 (31%)
Post Graduate Degree N = 2 (31%)
Information Not Obtained N = 7 (44%)
CDR and MM-CGI Scores
Participant CDR A B C Total
1 3 56 69" 35 160
2 3 51 52 25* 128
3 3 72** 56 48 176"
4 1 71 46 47 164
5 1 61 25* 39 125
6 1 35* 53 36 124
7 3 75** 48 43 166
8 2 42 46 28* 116
9 2 70** 62" 50 182"
10 3 73** 49 45 167
11 2 50 51 45 146
12 2 36* 51 33 120
13 3 68" 26* 37 131
14 2 43 43 28* 114
15 2 73" 69" 59" 201
16 1 77" 43 59" 179
Range 1-3 35-77 25-69 25-59 116-201
Mean 2.13 59.56 49.31 41.06 149.94
Scores are at least one SD below the mean.
"Scores are at least one SD above the mean.
the variable data. These transformations did not help the normalization so all data was run
in its original form. Simple regression analysis showed that the CDR scores were not
significantly correlated with the MM-CGI Total Grief scores, F(1,14) = 0.17, p = >.05.
Overall, this model only accounts for 1% of the variance in MM-CGI Total Grief.
Additionally, the adjusted R2 value (-0.59) shows shrinkage from the unadjusted R value
(0.12) indicating that the model will not cross-generalize well. Based on these statistical
findings, this study failed to reject the null for the question of whether or not the emotional
experiences of familial or spousal Alzheimer's disease caregivers positively co-varies in
intensity or perception of loss to the patients actual disease severity and decrement in
QSR NVivo 8 for MS Windows was used to qualitatively code and analyze the content of
the interviews. Each interview was read and coded by the investigator with the content
separated by incidents of thoughts or phrases and then constantly compared to all
previous content. The incidents were also coded as they represented evidence of the grief
models stages. Figure 1 and 2 demonstrate the frequencies of incident representation for
the models stages in the data. The furthest row of columns labeled Total indicates the
total number of times each stage was represented. The row of Single incidents indicates
the number of statements which were unique within each model to that stage, compared to
the number of Shared incidents. It is presumable that the number of single incidents
indicates how strong, or representative each of the stages is to the Alzheimers caregiver
grief experience. From the constant comparison, two additional themes arose from all
interviews which were not able to wholly be accommodated into either of the grief models:
an information gathering stage, and statements of validation. Table 1 includes the coding
guidelines and examples of these themes. The information gathering theme was
Rando Stage Representation Frequency
Frequencies and Overlap for Rando Model Stage Representations
Kubler Ross Stage Representation Frequency
Frequencies and Overlap for Kubler-Ross Model Stage Representations
present at least once in all 16 interviews with 32 incidents total and validation statements
were present in 12 of the interviews with 41 incidents total.
All of the stages of both of the adapted grief models were represented in the qualitative
data from this study indicating that they both have applicability when considering
Alzheimers caregiver grief.
KObler-Ross denial was apparent in statements of feeling overwhelmed and shocked as
Participant 2 stated, 1 was just so overwhelmed. I thought, 'How could this be happening,
why is this happening to [him]. I wanted an explanation. Participant 13 remembered the
time immediately after her mothers diagnosis, During that time I was at the Alzheimers
Association and got all kinds of information and was feeling really overwhelmed and
struggling with the decision to retire and take care of her and [wondering] what I was
getting myself into. Denial was also admitted flatly. When the interviewer asked
Participant 13 if she and her mother ever talked about the diagnosis she responded, No,
because I was in denial. Participant 1 simply reflected, I dont think the reality really set in
[after the diagnosis] and I dont think it set in for several years.
Anger from Kubler-Ross model was found in statements of unfairness and strong negative
emotions such as resentment. Participant 8 said, It doesnt do any good to argue. But I
had to learn that because at first it was just resentment I couldnt understand why he
didn't want to talk to us and then it clicked, he doesnt know how. It was the hardest thing
in the world to learn not to get angry. Participant 6 stated,
My [siblings] and I laugh about it. [Mom] didnt do anything wrong. She has no
high blood pressure, she never smoked, she never drank, she exercised. Its just
not fair. Shes getting this damn disease and its just not fair. There is nothing
wrong with her except shes got Alzheimers disease. That's the good news and
In this statement of anger the participant is lamenting the fact that there is seemingly
nothing that could have been done to prevent the disease. If this patient had done the
behaviors mentioned (drinking, smoking, not exercising) then this statement would be more
in line with KObler-Ross bargaining.
Bargaining was found in statements of guilt and imagined alternatives. Participant 2 said,
It's hard too for the age we are. It's hard because you see other people our age and
they're still living their lives." This is the imagined alternative of being disease free, which
is different from imagining that you had reacted sooner or differently to the disease like
Participant 12, I remember years ago that he had trouble remembering things and I feel
that we could have done something. I still feel that if he had acknowledged it and been
honest with himself and me we could have worked on it and it would have come years
Depression within the Kubler-Ross model was seen in instances of negative emotion
reactivity, namely crying or tearing up. Also, statement of sadness or other primary
depression symptoms were included. Participant 4 noted, I go in and out of that empty
sick feeling. Participant 5 said, I know where this is going and Im not happy... I had a
breakdown. I wasn't sleeping... I still feel it come and go.
Kubler-Ross acceptance stage was found in statements of fact regarding the patients
current status or that of the caregivers role and tasks at hand. Participant 5 said, I have
the day to day duties, which is fine. Participant 5 also said, I understand its not her fault,"
such statements of new understanding or Now I know," and new tactics or approaches are
also forms of acceptance as they represent the caregiver living with the new status quo.
Participant 6 shared, I used to think I could teach her how to do things, like push a wheel
chair, now I know its her brain she can not learn anything. I used to think she was mad
at me or trying to make me mad when she didnt answer but now I know.
Randos first stage, recognition of the loss, was represented by statements of the first
acknowledgements of changes in the patient and also included the direct and allusive
statements of denial from Kubler-Rosss first stage. Participant 4 remembers some of the
first signs of dementia, 1 had been helping with his [work]. It was just that he couldnt get a
forward perspective his planning was just not there.
Randos reaction stage included emotional reactions, like KObler-Ross depression stage,
but also statements of action which immediately followed recognizing a loss or decrement
in functioning. Participant 2, when asked what she felt after a particularly harrowing
incident of her husbands wandering, she said, I knew I had to get him to a doctor. This is
a statement of reacting to the recognized change of wandering behavior. Similarly,
Participant 15 was describing the challenges of their new morning routine and he said,
Then I suddenly realized, 'I have to dress her now.
Randos recollecting and re-experiencing was the most highly represented stage of this
study. It included incidents of retelling memories or old stories as well as incidents
describing new ways of relating to the patient or relationship changes. Participant 6 said, "I
really have to watch myself so I don't push her too hard or question her all of the time but
its not like Im interrogating her. They are just everyday questions because I am trying to
respect and include her like I always have. This caregiver is remembering the relationship
of respect she had with her mother and is now re-experiencing it in a modified way, being
mindful of the patients diminished capacity to relate back.
Relinquishing old attachments is a transitional stage which was seen in statements of the
caregivers new self-view and recognition of the loss of the previous relationship status
quo. Participant 15 noted, I am a single-married person... The person I love is not there
anymore. Twenty percent of her is there and we still laugh and joke, we make fun but
there is no such thing as a serious conversation.
Rando's readjusting and moving on was found in statements of adaptation to new
circumstances and any tactical approaches to dealing with disease-progression
challenges. Participant 13 was caring for her mother in one household while still managing
all of the responsibilities of her own home. See, I plan ahead because I have to leave
about the time mom is eating. So I dont have to cook twice every day I cook here and
then take dinner home to my husband. Participant 1 when talking about visiting his wife in
a nursing home said, You just dont go over very much because you cant imagine the
emotions. Participant 14 described a recent living change they had to make:
It was making me so nervous and stressed and I just couldnt rest and I couldn't
take it anymore. He would be constantly moving in bed and if I was asleep, I
would be woken up when he came to bed... I was constantly worrying about doors
being shut and lights being turned off. Thats when I decided he needed to go [to
another bedroom]... Now Im sleeping.
Rando's reinvestment stage was found in statements of the caregivers spending their
energy elsewhere or in new ventures as well as in their own new roles. Participant 4
reflected, Its a strange blessing in this whole thing that Ive met people who will be friends
for the rest of my life. Participant 13 noted, Ive learned in these [Alzheimers
Association] classes that you have to take care of the caregiver before you do the
caregiving... So I joined Curves and I go in the mornings before I come here. Ive been
doing it for two years and I feel so much better.
A statement from Participant 16 represents the full cycle of Rando's model:
I realized that my normal way of interacting with her as I always had our same
old mother-daughter relationship that was kind of funny where we would get on
each others nerves but we loved each other -1 realized that was really stressing
her out because if I got annoyed or frustrated with her then she would feel really
awful and that would just increase her anxiety and depression which makes
everything worse... So I realized that I have to come from a different place and
that I really just need to be there to help her now.
She recognized that the communication patterns were not working as they used to and
reacted to this loss initially by getting frustrated and then by changing her approach. The
relationship she had with her mother had to be altered and she still recalls the previous
relationship with her mother but has begun to re-experience her role as needing to be the
helper. The attachments to that old mother-daughter relationship had to be relinquished
and this participant now sees herself filling the need for a caregiver when she used to be
solely in the daughter role. The tactical adaptation of her new communication methods
represents Randos readjusting and the new energy which is being spent in this new role
and adaptive communication pattern represents reinvestment.
As seen in this statement, and demonstrated in Figure 1 and 2 by the Shared columns,
there is a lot of overlap within both models' stage representations. The nature of this study
only allowed for a one-time interview with the caregiver meaning that their statements
represent past and present emotions and reactions. Because these statements which
often include past and present reflections in one thought, each full thought often
represented more than one stage. For example, Participant 2 said, I remember going to
one of the many meetings at the Alzheimers Association. I had no hope at all for the
future. There were other people saying, you have a beautiful day, appreciate your life for
what it is and I can do that now but not then." Because they are referring to despair
and sad feelings as well as a new outlook as the best of the possible, this statement was
coded in depression and acceptance for the KUbler Ross model and reaction and
reinvestment of the Rando model. Also, due to the limited time of the interviews, these
statements are not to be considered exhaustive representations of each loss and the
entirety of the caregivers' resulting emotional experiences. Additionally, this study was not
able to more fully assess the order of emotions as they related to occurrences of loss, and
therefore it is not possible to confirm the order of the KObler-Ross and Rando models
stages as they relate to Alzheimers caregiver grief.
In the KGbler-Ross model the stages were all well represented by the incidents from this
study and they had relatively less overlap or shared incidents than the Rando model (see
the Shared row of columns in Figure 2 compared to that of Figure 1) indicating that the
constructs for each stage were well defined and representative of more independent grief
stage experiences. However, as you can see in Table 4, the Kubler-Ross model in end
calculations only had 211 coded incidents compared to the Rando model which had 477.
There are two possible contributors to this fact. Because the Kubler-Ross model indicated
less overlap and better stage construction, it is possible that its constructs were too limited
and did not allow for additional caregiver grief experiences to be considered. Alternatively,
Incident Occurrence Comparison Between Grief Models
Model / Theme Frequency Mean Incident / Participant
Kiibler-Ross Denial 33 2.06
Anger 26 1.63
Bargaining 19 1.19
Depression 46 2.88
Acceptance 86 5.38
Rando Recognize 95 5.94
Reaction 90 5.63
Recollect/ Re-Experience 124 7.75
Relinquish 71 4.44
Readjust 65 4.06
Reinvest 32 2.00
it is possible that the Rando model was too open or vague with the stage construction,
allowing more incidents to be considered in multiple stages, thus elevating the occurrence
level but also possibly allowing for a fuller understanding of the grief experiences.
In analyzing and comparing the data from both models several differentiating themes
emerge. As clear as the stages were for the KQbler-Ross model, they only dealt with the
emotions of the griever where the Rando model allowed for cognitive, emotional, and
logistical processes which often, if not always, co-exist within the caregivers role. For
example, the caregivers recounted memories of the patient during the interview and those
remembrances led to other statements of changed relations or perceived role changes.
This was allowed in Randos model at the recollection stage but not in any of the KQbler-
Rando's recognition stage did include information gathering but the investigator found its
function as prescribed by Rando did not match with the information gathering incidents
observed in the data. Rando's proposed information gathering, as it occurs post-death, is
primarily understanding the physicality of the death. With the Alzheimers caregiver the
information they are getting is less precise and happens after the symptoms have been
recognized or the diagnosis has been issued. There were eight incidents of information
gathering following the participants experiences of initially questioning their loved ones
behaviors and noticing their symptoms (25% of total information gathering incidents) and
14 incidents immediately after receiving the Alzheimers diagnosis (44%). The remaining
comments were reflections on maintaining awareness such as Participant 4 noted, I try
and stay informed and read up on the latest books. If information gathering is a stage of
the grief model or a component of another stage as it appears to be based on this study, it
will be important in future research to explore the antecedent links. There were two
incidents when Participant 4 noted that information gathering was a coping mechanism for
them, I had a lot to learn. I had fear because I didnt know anything, and, I think
powerlessness has to do with a lack of education. Additionally, among the population of
this study, there were seven participants who had been caregivers before, five of which
had cared specifically for Alzheimers patients. Those participants were able to draw on
their previous experiences as resources and coping tools. It is the opinion of the
investigator that those previous experiences should be included as information gathering
incidents in any and all future caregiving grief evaluations. Participant 6 noted, If [I] had
not worked with Alzheimers disease before, I would have been clueless. It would have
been a lot harder. Participant 5, who had previously cared for his mother-in-law with
Alzheimers said, Because of my own experiences with [his wifes] mom, no matter what is
going on, I have a better understanding of what kind of things will work. Taking these
factors into account, information gathering is closely related to both models of grief. For
Alzheimers caregiver grief, it should be incorporated into the Klibler-Rosss acceptance
stage where the griever is able to state facts and that they have learned or realized" new
facts about their patient and how they must relate differently, and also into the Rando stage
of readjusting where they must move adaptively into their future.
The incidents of validation statements occurred in the interviews without prompting by the
investigator and frequently represented reflections on the quality of care that the patient
was receiving specific to their out of home location (N=16, 42%), or the fact that the
caregiver felt emotionally validated in their caregiving actions and decisions (A/= 19, 50%).
Using this form of benefit finding with regard to the patients care environment and their
own decisions likely serves as a coping mechanism for the caregiver when they are
progressing through the Kubier-Ross stages of anger and bargaining or the Rando stages
of recollecting and readjusting. With these results, it is implied that benefit finding as self-
validations should be incorporated into both grief models.
Addressing the first research question and based on these results this study found that
both modified grief models, the Kubler-Ross Five Stages and the Rando Six Rs, do
account for aspects of the Alzheimers caregiver grief experience. Understanding that both
models can be used as a preliminary template for the emotional experiences of caregivers,
helping professionals can provide this population with a template to help them better
understand what they have been experiencing and will continue to experience. It will allow
the grievers insight into their own thoughts and emotions as well as a sense of
normalization. The two additional themes should be further evaluated and considered with
relation to a model for Alzheimer's caregiver grief. It will be left to future research to further
understand the order of the processes and to refine, and or combine, these models and
themes to present a model which wholly represents the Alzheimer's grief process.
Limitations and Future Directions
A limitation to the validity of these results is the lack of an additional qualitative coder.
Although the investigator took every possible measure to protect the integrity of the validity,
if the study and funding had been available, or perhaps in future evaluations of this data,
the opportunity for inter-rater agreement would make these and future findings more valid
Another scientific problem, which will hopefully be remedied in the foreseeable future,
affects all dementia and Alzheimers disease research: the lack of a conclusive pre-death
confirmation of the Alzheimer's disease diagnosis. The symptoms of Alzheimers disease
can mimic a number of other dementias and can hide the symptoms of other non-dementia
health disorders which have symptoms similar to dementia. Although there are several
measures that physicians and neurologists take to substantiate their diagnoses, there is
not yet any scientific control for the diagnosis of Alzheimers disease specifically. This
study was only be able to control for the diagnosis of Alzheimers disease or ADRDs in as
much as there has been a physician or neurologist administered diagnosis.
An unintended and rare consequence of the study could have been intense emotional
reaction to the interview. This was unlikely due to the fact that risks to the participants
were no more than the risks involved with their participation in the support groups they are
already attending. Also, since these participants were all Alzheimers Association
consumers, it may have biased the data as support group participants typically have more
insight into their own emotions, experiences, and what is to be expected in their situation.
This likely impacted their willingness to disclose emotions, their preparedness to address
the issues which are related to grief, and may have provided them with a fuller awareness
of the extent of their existing emotional losses and expected future losses. As the mean
MM-CGI scores on all factors including Total Grief were in within the average score range,
it is likely that this limitation did not significantly effect the data results.
Historically, the caregivers of most patients have been women, however the most recent
statistics indicate that men make up 40% of the Alzheimers caregiver population (Family
Caregiver Alliance, 2008). This studys participant population had a male caregiver
representation at 25%, which is lower than our national average. This fact may be
attributable to several factors. First, male caregivers keep their careers three times as
often as female caregivers and this may have made it more difficult for male caregivers to
find time away from work and caregiving to participate in a study of this nature (2008).
Also, based on the investigator's personal experiences as a support group leader and
volunteer, the typical group ratio of women to men is on average four to one. With a
disproportionate ratio of men attending groups, a representative recruitment was not
possible. Perhaps in future studies with larger numbers of participants, there can be a
male quota established based on a representative census so that the male caregiver grief
experience can be more fully understood and incorporated into a new model.
The most recent statistics from the Alzheimers Association indicate that up to ten percent
of the global population of Alzheimers disease patients have early or young-onset
Alzheimers disease, meaning they have been affected by the disease before they reach
the age of 65 (Alzheimers Association, 2008). As indicated in Table 2, 50% of this study's
population has young-onset Alzheimers, which is five times what would be expected for a
truly representative sample. Several factors are probable contributors to this anomaly.
There is a young-onset specific support group and during recruitment their leader was very
active in communicating with the investigator, learning more about the research, and
relaying her personal experiences as a caregiver because, as she stated to the
investigator, she wanted to help others who had gone through what she and the members
of her group were going through. This support group leaders enthusiasm was no doubt a
motivating factor in that groups willingness to participate in this research. Additionally, it is
possible that the young-onset caregivers were more open and available to participate in
the research. Of the eight participants who were caregivers for young-onset patients,
seven of them were spouses and one was an adult-child and all of them were under the
age of 67. The factors which should be addressed in future research include whether or
not this younger generation is more open-minded about participating in and contributing to
psychological research and whether or not there is age-related connectedness (to the
community, to their careers, to other social support) which influences their capability of
giving their time to research.
This study lacks complete socio-economic status and education level data for the
caregivers and patients. These factors are well known contributors to coping and burden
among caregivers and may also affect the quality of care provided by the caregiver, and
their ability to self-analyze and process their emotions. Other controls that this study could
not exercise include controlling for the participant's history as a caregiver (for the present
Alzheimers patient or for any caregiving in the past). Similarly, in the constraints of this
study it was impossible to control for the caregivers quality of relationship with the patient
before Alzheimers, whether it was positive or negative, intense or distant. Such
experiences were noted in as a narrative but were not statistically evaluated as N would
have been too small to run the necessary analyses. To focus the findings and applicability
of this study, relationships of the caregivers to the patients had to be limited to those most
common spousal and adult children. Certainly there are a myriad of different caregiver
relationships and family structures and it would be interesting to better understand those
dynamics and how the grief processes are similarly and differently relevant to those
In addition to the 16 participants who were actively caregiving, there were three members
of the Alzheimers Association community who were previous caregivers who sought out
the opportunity to be interviewed about their experiences. They all separately stated that
they wanted to learn more about this study and they were interviewed by the researcher
but their conversations were not transcribed or analyzed for the purposes of these
analyses. Their perspectives on post-death grief and reflections on pre-death grief were
rich with statements representing Kubler-Ross acceptance stage and Randos reinvesting
stage. The willingness that these participants demonstrated to be studied, to have their
experiences be understood, and to be helpful to future caregivers is indicative of a need for
further research in the area of Alzheimers caregivers' grief experiences.
The nature of Alzheimers disease is worthy of grief and the people who care most for the
patient are the ones who become their caregivers and in turn suffer the most. In better
understanding the grief process of these caregivers, as a culture and a community, we can
better support their efforts and promote their healthy grieving and functioning.
APPENDIX A. QUALITATIVE QUESTIONS FOR SEMI-STRUCTURED INTERVIEW
1. Can you tell me about your history or the story of your relationship to (the patient)?
2. What was your emotional or mental process when you learned of their diagnosis?
3. How did that relationship change when you first found out about their diagnosis?
4. Compared to before the diagnosis, how would you now describe your relationship?
5. What has specifically changed about your relationship? (List or one specific.)
6. How does that make you feel can you describe your emotional and mental
process when you consider that question?
7. When do first remember recognizing that change? (Reference one at a time at
least one specific recollected change.)
8. What did you feel? What did the patient feel or how did they react? What actions
did you take?
9. What are your most recently perceived changes in your loved one?
10. How do you think you reacted when you observed this change? What was your
emotional or mental process when you observed this change?
11. What would you tell a couple / family who just found out their loved one was
diagnosed with AD? What are the worst things that they can expect? What are
the best things? What should they do to prepare?
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