Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
The Two-Track Model of Dementia Grief (TTM-DG): The Theoretical and
Clinical Significance of the Continuing Bond in Sickness and in Death
Simon Shimshon Rubin1, Alexander Manevich2, & Israel Issi Doron3
University of Haifa, Haifa, Israel
11,2 International Center for the Study of Loss, Bereavement and Human Resilience and the
School of Psychological Sciences 2
3 Department of Gerontology and the Center for Research and Study of Ageing
1
Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
Abstract
Grief and mourning for family members caring for a dementia patient begin with the initial changes in the
person's cognitive abilities, and intensify with the worsening of his or her condition. The aim of this
article is to propose a Two-Track Model of Dementia Grief (TTM-DG). This model enlarges the
theoretical, research and clinical lenses for dementia, and explores how the illness process as well as the
bereavement responses after death stimulate the reworking of grief and mourning over the beloved family
member. Based on the insights derived from the Two-Track Model of Loss and Bereavement (Rubin,
1981, 1999; Rubin, Malkinson, & Witztum, 2018) and the Continuing Bonds paradigm (Klass, Silverman,
& Nickman, 1996; Klass & Steffen, 2018), we propose that the clinical and research examination of
dementia grief begin in life and continue after the death. The TTM – DG’s Track I focuses on bio-psycho-
social functioning and Track II focuses on the internalized psychological representation of the patient, the
ongoing relational bond and the illness and death story. A case study illustrates how this combined
perspective provides a comprehensive picture of the experience of grief for persons afflicted with
dementia over the course of the disease trajectory. Future clinical and empirical research has an important
role to play in the further development of this model.
2
Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
Bereavement at any age is a painful process that has lifelong impact on the bereaved. When the
physical death is separated from the loss of the psychological identity and personality of the loved one,
the emotional upheaval and adjustments involved are multiplied many times over. Grieving begins
sometime after the recognition of cognitive impairment, and proceeds along various trajectories as the
disease process claims ever-larger swaths of personhood. The purpose of this article is to propose a
comprehensive model for the grief reactions of family members of patients suffering from cognitive
decline. This model, derived from the Two-Track Model of Loss and Bereavement (Rubin, 1981, 1999;
Rubin, Malkinson, & Witztum, 2018) and the Continuing Bonds paradigm (Klass, Silverman, &
Nickman, 1996; Klass & Steffen, 2018), begins with the initial period of cognitive decline and continuous
to the physical death and beyond.
In this paper, we open with a review of the professional literature on close family and caregivers’
response to a family member suffering from cognitive decline. Next, we briefly review prominent models
in the field and their approach to the impact of dementia and decline on family members and caretakers.
In the third section, we turn to Attachment theory and the Continuing Bonds paradigm as approaches that
underscore aspects of the interpersonal attachment bond as highly significant to grief over a family
member suffering from dementia. The following two sections present in some detail the Two-Track
Model of Dementia Grief further illustrated by a description of a case. The final section concludes with a
summary and future directions for the field.
Background
Dementia
Life expectancy in the population is steadily rising, and with the rise of age comes a rise in
chronic or life-endangering diseases (Cox, 2016). Dementia (Major Neurocognitive Disorder; American
Psychiatric Association, 2013) is a progressive syndrome caused by various brain diseases and is
manifested in cognitive and functional impairments, and often accompanied by personality and behavioral
changes. The main cause of dementia is Alzheimer’s disease that is responsible for approximately 60 to
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
80% of dementia cases, and it is the fifth leading cause of death in Americans age ≥ 65 years
(Alzheimer’s Association, 2018).
Gradual impairment of short-term memory is one of the first signs of Alzheimer’s disease, so the
patient may not remember names and events that have occurred recently. Often the patient may exhibit
apathy, seclusion, and may have difficulty performing common and familiar activities. Along with the
progression of the disease, disorders of cognitive function, the ability to orientate in time and space, and
exercise of judgment appear. In addition, severe mental and behavioral symptoms may occur, such as
persecution delusions, hallucinations, restlessness, irritability, aggression, misconduct behavior, crying
outbursts, comorbid depression, eating and sleeping disorders, confusion, and increased difficulties in
language and communication. In the terminally ill stages, patients can no longer care for their needs, and
they need nursing care around the clock (Ghezzi, 2018).
With the rise of age, the prevalence of the disease increases. From 3% at the age of 65-74, this
figure rises to 32% among those aged 85 and over. Due to the aging of the population, it is estimated that
by 2050 the number of diagnosed Alzheimer’s cases in the United States will triple compared to 2010
(Hebert, Weuve, Scherr, & Evans, 2013). The dramatic increase in incidence of the disease will add to the
burden on the country's care systems, the general health system, and upon informal patient support
networks. The latter, mostly spouses and older children, provide a significant portion of the daily care
needed in dementia patients (Langa et al., 2001; Wimo, Jönsson, Bond, Prince, & Winblad, 2013). Given
the increasing number of cases, it is most important to address the impact of caring for a family member
suffering from progressive cognitive impairment, with the goal of improving evidence-based evaluation
and interventions methods.
Family Members and Caregiving for Dementia Patients: Stress, Burden and Grief
Caring for a dementia patient involves the provision of assistance in one or more of the day-to-
day activities (both Activities of Daily Living [ADL] and Instrumental Activities of Daily Living
[IADL]), such as bathing, dressing, cooking, feeding, paying bills, shopping and so on. It is estimated that
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
family members who serve as the primary caregiver4 for the patient spend an average of 27.8 weekly
hours for treatment; about four hours more than those who treat a family member without
dementia (National Alliance for Caregiving, 2017). While there are some positive effects to providing
care, most relatives of dementia patients are at increased risk of physical and mental health decline as a
result of the stress associated with caretaking for the patient (Tzuang & Gallagher-Thompson, 2014). For
example, one community-based study found that about 40% of spouses who treated a patient with
Alzheimer’s disease met a cut-off score for clinical depression, compared to only 5% among older
spouses of people without dementia (Mausbach, Chattillion, Roepke, Patterson, & Grant, 2013).
Moreover, a critical review of 37 studies pointed out the link between dementia patient caretaking and
worsening physical health and cognitive function of the primary caregiver (Fonareva & Oken, 2014).
For many years, research literature related almost exclusively to the stress and burden associated
with the role of the primary caregiver, while the study of grief reactions in general and anticipatory grief
in specific experienced by family members was largely neglected (Sanders, Ott, Kelber, & Noonan,
2008). Anticipatory grief relates to the grief response before an actual loss takes place. It is a bio-psycho-
social process people go through as a reaction to the coming death of a meaningful figure in their lives,
especially as a result of a terminal illness (Rando, 1986, 2000). Grief and mourning over the loss of
identity of those suffering from dementia are distinguishable from other responses, such as depression
(Holley & Mast, 2009). They increase the risk for maladaptive coping that may require professional
intervention (Nielsen, Neergaard, Jensen, Bro, & Guldin, 2016).
Studies conducted among family members caring for a relative suffering from dementia indicate
that one of the main issues they face is the grief responses resulting from the interpersonal loss associated
with the disease (e.g. Adams & Sanders, 2004; Farran, Keane-Hagerty, Salloway, Kupferer, & Wilken,
1991; Frank, 2008; Loos & Bowd, 1997; Rankin, Haut, & Keefover, 2001; Sanders, Morano, & Corley,
2003; Silverberg, 2007). For example, Sanders and Corley (2003) analyzed responses from 253 men and 4 Many of the phenomena described will also reflect the impact of the disease on close family members not involved in caregiving.
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
women who were asked: "Do you believe that you are grieving the loss of your loved one even though
he/she is still alive? Please explain." Though the care recipient was still alive, 68% of the caregivers
indicated that they were grieving the loss of their loved ones. Five main themes emerged: a sense of
ambiguity around the disease and relationship, loss of previously established roles, loss of intimacy and
interpersonal relations, feelings of despair and loss of control, and self-awareness of the grief reactions
they experience. Contents of interpersonal loss (e.g. inability to communicate and engage in joint
activities) were more prominent in the advanced stages of the disease.
In addition to the grieving involved, coping with a family member suffering from dementia is
multifaceted and may also stimulate personal and interpersonal growth as well as resilient responses, such
as sense of meaning, competency and self-worth (Lloyd, Patterson, & Muers, 2016; Yu, Cheng, & Wang,
2017). For example, a recent study examined the concept of love among couples in which one suffered
from Alzheimer’s disease. The researchers found that in addition to participants who reported stable or
negative changes in the emotional relationship with the partner from the time of diagnosis, there were also
reports of increased positive emotions (Shavit, BenZe'ev, & Doron, 2017).
Over the years, more studies have documented the progress of the disease and added new insights
into its early effects on family members. Mild Cognitive Impairment (Mild Neurocognitive Disorder;
American Psychiatric Association, 2013) is a condition in which there are minor but visible changes in
cognitive abilities without significant damage in the daily functioning. This condition is a proven risk
factor for developing dementia and it is estimated that over 30% of people diagnosed as suffering from
Mild Cognitive Impairment (MCI) may receive a diagnosis of dementia in the future years (Alzheimer’s
Association, 2018).
Even at the early stage of cognitive impairment, caregivers experience grief. Blieszner, Roberto,
Wilcox, Barham, and Winston’s (2007) research showed that psychological responses to significant
losses were already evident in the early stages of changes in cognition. In another study comparing levels
of anticipatory grief among family members of patients with Alzheimer’s disease and MCI, high levels of
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
grief were observed among all sample participants. The relatives of Alzheimer’s patients, however,
reported more symptoms of grief/dysfunction than those with MCI (Garand et al., 2012).
The Unique Characteristics of Dementia Caregiving and Bereavement
Compared to other incurable diseases, such as non-treatable cancer, dementia has unique characteristics
that may affect the process of coping and accepting the loss. These characteristics include the disruption
of cognitive and communicative abilities already manifest at the early stages of the disease, as well as
severe neuropsychiatric disorders that often occur with the disease’s progression. These last are among
the main causes of distress for caregivers (Georges, Jansen, Jackson, Meyrieux, Sadowska, & Selmes,
2008). In most non-dementia terminal conditions, there is an opportunity for conflict resolution and
emotional dialogue until the moment of death. In dementia, this opportunity is denied the patients and
their family members due to the disease characteristics (Lindauer & Harvath, 2014).
In a study comparing the psychological responses of family members to various diseases,
dementia caregivers reported almost twice as many symptoms of grief before death as caregivers of
cardiac patients (Ross & Dagley, 2009). In a large-scale study comparing health among those bereaved of
spouses with and without dementia, in the year prior to death, the spouses of dementia patients were more
likely to be diagnosed with depression and received more psychotropic medications (Shah, Carey,
DeWilde, Harris, Victor, & Cook, 2016).
Other studies, however, paint a more nuanced picture. For example, a study comparing
psychological distress and burden among family members of cancer patients with those with end-stage
dementia found no significant difference between groups (Costa-Requena, Val, & Cristofol, 2015). Other
research that focused on family members of patients with dementia or cancer showed many similarities in
coping strategies. Nevertheless, spouses of dementia patients reported feelings of a lost relationship due
to the cognitive impairment while spouses of cancer patients reported an improvement in the relationship
(Kristanti, Engels, Effendy, Utarini, & Vernooij-Dassen, 2017). These findings suggest that even when
there are no differences in measures such as depressive symptoms and general functioning, focusing on
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
the nature of the relationship and the changes that apply to it may shed additional light on the experience
of loss prior and after the physical death.
Grieving the loss of a loved one to death is a most difficult and painful experience for those who
shared their life together (Attig, 2011; Parkes & Prigerson, 2013). Grief generally requires time to
reaffirm or reconstruct the matrix of meanings that have been challenged by the death (Neimeyer, 2016).
Studies indicate that the emotional state of the dementia family members deteriorates with the progression
of the disease (see, for example Adams & Sanders, 2004), but there is minimal attention to the study of
the disease’s effects on coping after death (Crespo, Piccini, & Bernaldo-de-Quiros, 2013). While there is
emerging evidence that caregivers may experience the care-recipient’s death as a relief (Chan, Livingston,
Jones, & Sampson, 2013), they still face additional challenges in their grieving that may last well beyond
the first year of bereavement (Corey & McCurry, 2016).
Treatment of a family member with dementia is fraught with many difficulties, and may lead to
maladaptive responses requiring professional intervention. The extent to which these circumstances
influence the duration and nature of the grief and mourning process, including complications of grief
broadly defined as well as the DSM-5's Persistent Complex Bereavement Disorder classification, are
important questions for study (American Psychiatric Association, 2013; Prigerson, Vanderwerker, &
Maciejewski, 2008; Rubin, Malkinson, & Witztum, 2008). It has been estimated that approximately 20%
of bereaved family caregivers of dementia patients would qualify for classification of maladaptive and
prolonged grief (Schulz, Boerner, Shear, Zhang, & Gitlin, 2006). The main predictors for maladaptive
response that were found in this research included: reporting of positive features related to the role of the
caregiver, high levels of pre-death depression and burden, and poor cognitive function of the patient. (See
also: Aneshensel, Botticello, & Yamamoto-Mitani, 2004; Zhang, Mitchell, Bambauer, Jones, &
Prigerson, 2008).
Existing Models
Dementia Grief Models
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
To date, three main models specifically address the experience of grief in the context of dementia
(Blandin & Pepin, 2017; Meuser & Marwit, 2001; Noyes et al., 2010). The model by Meuser and Marwit
(2001) describes the psychological processes that occur in family members of the dementia patient
depending on the severity of the symptoms (i.e. as a stage process). This model argues that grief
responses begin long before physical death has occurred and are associated with the patient’s intellectual,
emotional, and behavioural deterioration. The researchers found that children’s grief responses were
characterized by an inverted U-shape function; such that the grief responses at the mild stage of the
disease were low, intensified sharply in the moderate stage and subsided at the severe stage. The grief
responses for the spouses were characterized by a more linear rise, so that their intensity increased with
the progression of the disease. After the death of the family member, both the children and the spouses
reported relief from the grief reactions, but the levels of grief remain fairly high over time.
The model by Noyes and his colleagues (2010) is based on the Stress-Process Model of
Caregiving (Pearlin, Mullan, Semple, & Skaff, 1990), and extends it by incorporating a focus on the grief
associated with caregiving a dementia patient. The researchers describe three main domains associated
with the role of the caregiver: background and context of the individual and the situation (e.g. age,
gender, ethnicity, etc.), primary stressors and outcomes related to loss. The primary stressors are
expressed as related to both interpersonal loss (such as loss of communication, support and intimacy), and
caregiving losses (e.g. loss of freedom, health, employment, and so on). Similarly, the outcomes
associated with loss are described related to both grief responses (loneliness, regret, hopelessness , etc.),
alongside stress and burden. Noyes et al. (2010) argue that the psychological outcome will depend on
cognitive appraisal of the significance of the loss as well of coping resources, so that those who
experience losses due to the unavailability of the previous form of relationship are more likely to
experience grief, while those who perceive caregiving losses are more likely to experience stress
reactions.
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
The model by Blandin and Pepin (2017) describes the unique characteristics of the dementia
caregiver grief process. These include: (a) dealing with the compounded serial losses of the disease in
such areas as memory, communication and self-care; (b) the ambiguity rooted in the slow and unstable
course of the disease; and (c) the changes in the personality of the patient described also as the "receding
of the known self”. They conceptualize coping with the reality of dementia caregiving as filtered through
three psychological states, each with a dynamic mechanism that may facilitate or hinder the process of
mourning -- separation, liminality and re-emergence. Separation involves recognizing the many losses
that have occurred. Liminality is a psychological state characterized by a lack of clarity of the current
situation, as well as the future yet to come, and requires tolerance and acceptance of difficult emotions
due to this matrix. Re-emergence refers to the behavioral adaptation to the changing circumstances and
the reality of loss that reflect adaptation to the life they now live. In this model, coping is a circular
process mobilized anew as the disease progresses.
Evaluation of Existing Models
Despite the significant and valuable contribution of the existing models described above, the
overt and especially covert dimensions of the mental and emotional map vis-a-vis the patient and the
relationship to him or her have not received sufficient attention. Coping with the illness or death of a
loved one is not only a process of coping with the stressors involved in the caregiving and assessing the
deprivations and deficits in the life experience of the caregiver who is no longer benefitting from the
relationship as it once was. Prior to death, the psychological experience of those who have strong
emotional bonds to the patient requires dealing with dissonance. There is a separation between the
physical body of the person who lives on and the psychological experience of the person undergoing a
process of cognitive, emotional and personality changes (Boss, 2010). The various ways in which this
split is handled are no longer required after death. A central feature involved in both the progression of
dementia and in the experience of the death of a loved one extends beyond how one lives at any one point
in time to address the way the experience is processed over time.
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
It is important to include in our focus the contribution of the emotional connection to the
dementia patient and the way that the relationship is experienced. The loved one organizes and re-
organizes the psychological relationship with the living dementia patient over the course of the illness, as
well as with him or her after death has occurred. Discussing the grief reactions and their duration without
paying special attention to the changes that have occurred in the representation of the thoughts, memories
and feelings toward the loved one risks missing one of the most basic characteristics of this interpersonal
loss (Rubin, Malkinson, & Witztum, 2012).
Moreover, since the major current models of dementia grief described above focus predominantly
on the period in which the patient is still alive, the experience and life course after the patient’s death and
its impact remain largely unknown. As will be further elaborated in the sections below, there is a growing
understanding that the connection and the on-going dialogue with the significant other never ends, but
continues to exist and develop in the inner world of the bereaved. Due to the unique characteristics of
caring for a loved one with dementia, it is important to consider how these experiences influence the
course of grief and mourning following bereavement. When the physical death of the loved one occurs, a
new stage presents itself. Here the grieving family members have an opportunity to reconnect and re-
grieve for the person they knew who is no more. This can be unencumbered, or heavily encumbered, by
the disease progression prior to death. Understanding what family members with strong attachments to
patients go through, therefore, should include both the time before and after death. As we will further
elaborate, death provides an opportunity to reach a new modus vivendi with the loss of their beloved,
whose physical death now allows for a reconsolidation of the relationship. To address these issues, we
turn to attachment theory followed by current conceptualizations of bereavement.
Grief and Bereavement in Dementia from Attachment Theory and Continuing Bonds Perspectives
Interpersonal relationships span a wide gamut and their significance varies greatly.
Understanding the impact of the death of a significant other has benefited greatly from Bowlby’s
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
formulations. We begin the section on bereavement with a brief summary of his attachment framework
before moving on to discuss the nature of the emotional bonds in the realm of bereavement.
Attachment Theory
One of the main theories addressing the nature of significant interpersonal relationships is John
Bowlby's attachment theory (Bowlby, 1969, 1973, 1980). This theory emphasizes the importance of
relationships to human development and socio-emotional functioning throughout life. Bowlby argued that
humans, like primates and other mammals, are born with a psycho-biological system. This system
motivates them to seek proximity to a significant figure, usually the mother, as a way to provide for
themselves protection from environmental threats and to reduce feelings of distress. Over time, people
become emotionally attached to the main caregivers with whom they interact and they shift from physical
proximity to the ability to maintain psychological proximity even when physically separated (Bretherton,
1992).
The experience of caregiving interactions and the ways in which the infant perceives the
availability and the responses of these figures create mental representations that Bowlby called Internal
Working Models (IWM). These models are central to the way the individual perceives self and other. They
influence the interpretation of the interpersonal environment as well as contributing to the dynamic
shaping of the individual personality and the manner of personal relationships (Fonagy, 2018). The
mental representations of the individual’s most significant others continue to evolve over time, and to
respond to changes in the life circumstance of the individual as well as the significant other (Blatt &
Levy, 2003).
The dual aspect of attachment phenomena, relating to the cognitive and affect laden internal
models of self and other on the one hand, and assessing the cognitive, affective and behavioral patterns of
approach and avoidance on the other, have been addressed in clinical and research literature (Cassidy &
Shaver, 2016). Attachment theory is highly relevant to the understanding of grief both for the general
coping style of the bereaved as well as for particular relationship with the deceased. The massive
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
challenges to the previously constituted representational matrices of the particular relationship and
attachment to that individual are considered by some to be the essence of the experience in grief and
bereavement (Rubin et al., 2012). At the same time, the attachment styles of the person responding to the
losses have the potential to mediate, assist or complicate the response to loss. They make a significant
contribution to facilitating or impeding emotional adjustment throughout the process of mourning (Burke
& Neimeyer, 2013). Those with insecure attachment styles, in comparison to secure attachment, are often
at higher risk for coping difficulties and have less access to social support sources (Mikulincer & Shaver,
2008). Therefore, attachment styles are among the recommended factors to consider when formulating
professional intervention following bereavement (Kosminsky & Jordan, 2016).
For the most significant attachment relationships (such as with parent, spouse and child),
attachment theory can assist in understanding the challenges faced by the dementia caretakers and loving
family members. For example, the psychological representation of the other, affectively linking the
memories, emotions and experiences with that person, are whipsawed by the knowledge of the physical
and psychological unavailability of the other. Moreover, for many, the process of coping with dementia
involves experiencing loss occurring in the context of separation from an attachment figure that is no
longer what he or she once was. This brings with it feelings of insecurity and threatens the very basis of
what had once been a secure relationship to anchor oneself.
Surprisingly, it is quite rare to find in the literature a reference to the processes undergone by
family members who treat a dementia patient that are framed in this theory (Monin, Schulz, & Kershaw,
2013). Nonetheless, empirical evidence is accruing demonstrating that attachment style prior to the
disease may be related to the behavioral and emotional expression during the disease. For example, secure
attachment has been shown to impact the well-being of the caregiver and is associated with a
psychological basis that promotes the ability to provide support and care to others (Nelis, Clare, &
Whitaker, 2014). At the same time, the psychological representations of the dementia patient in the hearts
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
and minds of family members, both during the disease progression and after death, have received far less
attention. To better understand these aspects, we turn to the literature on grief and bereavement.
Continuing Bonds
The complex interactions between grief and attachment associated with caring about a person
suffering from dementia do not end when the patient dies. “Till death do us part” describes a reality of
physical separation following death, but this is not enough to end the connection with the deceased. As
long as there is someone who remembers, the connection with the significant other does not end (Rubin,
1999).
This understanding is central to the ‘Continuing Bonds’ (CB) paradigm emphasizing that the
relationship and ongoing dialogue with the beloved continue to exist and develop in the inner world of the
bereaved across the life cycle (Klass et al., 1996; Klass & Steffen, 2018). The CB paradigm triggered a
major shift in the field of loss and bereavement, replacing the idea that the bereavement process results in
a severance of the attachment bond to the deceased (Freud, 1917/1957; Lindemann, 1944). At the same
time, grief and mourning continue to be seen as involving interpersonal as well as intrapersonal processes
which include engagement with the memories and representations of the deceased as well as adaptation to
one's changed life circumstances. The strong dysphoric affects and cognitions that typically characterize
the grief and mourning processes generally subside over time.
While the scientific and professional acceptance of the CB paradigm is relatively new, the idea
that continued attachment to the deceased is a response to be viewed as maladaptive and pathological is
actually quite surprising in and of itself. Throughout human history, many cultures have tended to
preserve their connection to their deceased and have devised elaborate ritual and sanctioned emotional
ties with the loved one. Actually, it is the Western individual focused viewpoint of the 20 th century that
has tended to ignore the broad cultural, political, religious and community contexts of connections. Set
aside was how these continuing connections and bonds serve to organize the beliefs and behavioral norms
for the socially sanctioned construction of the grief and mourning process. The acceptance and attention
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
to the idea of a continuing relationship to the deceased provide a consensual framework for communities,
families and individuals to approach grief and mourning as well as to put together a vision of what is a
socially constructed outcome of this mourning (Klass, 2006; Oyebode & Owens, 2013).
Jewish, Christian and Muslim traditions emphasize the continuity of the soul after death, thus
blurring the finality of death for the believer (Rubin et al., 2012; Rubin & Yasien-Esmael, 2004). These
traditions, as well as those of almost all religions and cultures, outline sensitive and structured paths that
help the bereaved assimilate the reality of loss into their new life. In the Jewish tradition, for example, a
variety of stages and behaviors required of the bereaved begins with the announcement of death and
continues to change across the days, months, and years following loss. The trajectory can be seen as
combining the imperative of continued investment in life alongside maintaining a relationship with the
loved one now deceased (Rubin, 2015).
As mentioned earlier, despite the centrality of the ongoing relationship between the living and the
dead throughout history, these have been widely recognized in the clinical and academic approach to
bereavement only with the publication of the “Continuing bonds: New understandings of grief” by Klass,
Silverman, and Nickman (1996). This volume brought together the work of theoreticians, researchers and
clinicians, who had been publishing articles that described what became the CB paradigm (e.g. Rubin,
1981; Stroebe, Gergen, Gergen & Stroebe, 1992; Walter, 1996 etc.). It is worth noting that parental loss
of children and child loss of parents were central to demonstrating an ongoing and life-long bond between
the living and the dead. This stood in contrast to other views of severing bonds that typically used the
model of spouse and partner death.
Today, there is a growing recognition that bereavement is not a linear process, and that ongoing
relationships remain alive long after the death of one of the partners to that relationship occurs. These
relationships can be expressed in various aspects in the mourner’s life. Among the examples of this are:
dreaming of the deceased, speaking and consulting with him or her, feelings of supervision and guidance,
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
preserving objects belonging to the deceased, looking at pictures and telling stories, visiting the grave,
thinking and remembering etc. (e.g. Silverman & Worden, 1993).
At the same time, the over-simplification of what is meant by ongoing relationships and its
adoption as a uni-dimensional concept that predicts positive adjustment should be avoided. A clearer
understanding of the varieties of continued involvement with relationships to the deceased and the various
characteristics that may promote or hinder adaptation to loss continue to be open to further study (Field,
2008). There is some empirical evidence suggesting that the ongoing relationship’s positive contribution
may depend on an acceptance of the reality of the death, as well as the experience of the deceased as a
“safe-base” and/or as positive role model. By way of contrast, the inability to accept the reality of death,
and/or the experience of the connection to the deceased as a highly conflictual and negative continuing
bond are typically indicative of complications in the grief process (Field & Filanosky, 2009; Scholtes &
Browne, 2015). Grief and mourning across the dementia trajectory represent a very particular form of
grieving. However, despite significant advances in understanding the characteristics of CB over the past
decades, to our knowledge, no research has addressed this topic in the context of attachment and
caregiving for a loved one suffering from cognitive decline. After reviewing both attachment theory and
Continuing Bonds, we turn now to a model that can assist in the clarification of the dementia grief
trajectory.
The Two-Track Model of Loss and Bereavement
The Two-Track Model of Loss and Bereavement )TTM( emphasizes the ongoing relationship to
the deceased, alongside a perspective associated with stress, trauma and change in life (Rubin, 1981,
1999). The TTM provides a framework that directs research attention and helps formulate clinical
interventions in crises related to interpersonal loss (Malkinson & Bar-Tur, 2014). This model has
influenced the understanding in the field of loss and bereavement, and proven itself for four decades as a
comprehensive theoretical framework useful for assessing the response to a variety interpersonal losses,
such as parental response to child loss across the life cycle, spousal bereavement, loss due to parent’s
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
divorce, losses due to suicide and other traumatic events, etc. (See: Hoy, 2016; Neimeyer & Holland,
2015; Pearlman, Wortman, Feuer, Farber, & Rando, 2014; Stroebe & Schut, 1999; Tedeschi & Calhoun,
2004; Worden, 2018).
The TTM describes the response to loss and the process of adaptation to it as related to two multi-
dimensional and interrelated tracks: the first track focuses on the impact of loss on everyday
biopsychosocial functioning, while the second focuses on the ongoing internalized level of the
relationship with the deceased and processing the ‘death story’ (Rubin et al., 2018). Track I refers to loss
as a potentially traumatic event with physical (e.g. changes in appetite, sleep, sexual drive, etc.),
psychological (anxiety, depression, self-image, etc.) and social (family, friends, colleagues and so on)
implications. On the other hand, Track II refers to the fracture that may occur in the ongoing internalized
representations of the deceased among his or her loved ones, such as the degree of emotional closeness,
longing and yearning, conflictual aspects of the relationship and preoccupation.
Rubin and his colleagues (2012) have shown how the relationship with the deceased may itself be
a focal point for traumatic grief. For example, deaths occurring under conditions of physically
overwhelming circumstances involving mutilation witnessed or imagined by the bereaved are recognized
as one type of potentially traumatizing loss (Rynearson, 2001). While the death of a loved one
necessitates reorganization of the relationship with him or her, the objective circumstances of the death
event are not the only source of trauma in bereavement. Situations where the representations of the loved
one are shaken to the core by circumstances related to who that person has become may also traumatize
survivors. This includes other situations where the personal experience of the mourner in response to the
loss itself or to information obtained after the death of the deceased serve to buffet the relationship and
representations of the deceased. Thus it is possible to receive new and highly negative information that is
revealed only after the death that may be the traumatizing factor. For example, information regarding
sexual or economic betrayal may lead to fragmentation of the internalized representations of the loved
one and the relationship with him or her, thus disrupting the ability to integrate the 'death story' into the
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
personal narrative. This issue is highly relevant for the current topic, since caregiving for a person with
dementia is a potential source of damage to the caregiver’s representation of the patient's image. The
ongoing deterioration in his or her identity and behavior throughout the disease, as well as the objective
circumstances of the caregiving role and the demands involved, are powerful factors affecting those
closest to the patient. The extent to which they complicate, derail or serve as traumatizing features of the
loss are important areas of inquiry.
The Proposed Model and its Advantages
In light of the above, it appears that despite the valuable contributions of the existing models and
theories, they do not provide a sufficiently comprehensive perspective for the unique phenomenon with
which the family of dementia patients must cope. Accordingly, we propose a more comprehensive
approach specifically attuned to the dementia experience -- the Two-Track Model of Dementia Grief
(TTM-DG). In our view, this provides an appropriate conceptual framework whose purview is
particularly well suited to the family experience of loss, grief and mourning as a result of the unique
characteristics of this illness.
The Two-Track Model of Dementia Grief (TTM – DG)
The proposed TTM - DG model is an approach that addresses the limitations of existing models
and expands the field of vision typically brought to bear in dementia caregiving and grief. We include
first and foremost the focus on the changes in the ongoing emotional attachment and relationship to the
family member who suffers from cognitive decline. Secondly, we extend the timeline of relevance to
begin prior to the illness and to continue well into the period of bereavement. Building on the theoretical
and empirical knowledge we have reviewed, the proposed model includes four categories that describe
the requirements for coping with a family member suffering from cognitive decline and its implications
on caring/caregiving family members (CCFM). These are: characteristics of family member suffering
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
from cognitive decline; the objective circumstances of caring/caregiving; characteristics and resources of
the CCFM, and a two-track assessment of responses of the CCFM (see Table 1).
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
Table 1: Dimensions of Patient and Caring / Caregiving Family Member (CCFM) Relevant for Assessment of Impact of Disease Trajectory
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
The Family Member Suffering from Cognitive Decline
With regard to the characteristics of the family member suffering from cognitive decline, at least
three aspects should be considered: medical diagnosis, severity of the cognitive and functional decline,
and the particular pattern of the symptoms. Dementia is a common name for various syndromes
characterized by cognitive and functional decline, such as Alzheimer's disease, vascular dementia,
frontotemporal dementia and so on. Therefore, we believe that in every attempt to describe the course of
coping with the dementia patient, attention must be paid to the heterogeneity of expressions of changes in
behavior, function and personality among the different types of dementia syndromes, which may
significantly affect the experience of the family members. Similarly, the severity of the cognitive and
functional decline of the patient (i.e. mild cognitive impairment, moderate stage dementia, and severe
stage dementia) is a significant factor to be addressed in research and clinical evaluation, as well as the
period of bereavement and time that elapsed since the patient died. Based on the last two factors, changes
in the patient’s identity and personality must be examined, as well as the intensity and frequency of
physical and neuropsychiatric symptoms (e.g. verbal, physical and sexual aggression, delusions,
hallucinations, pain management etc.).
Objective Circumstances of Caring / Caregiving
This category is closely related to the patient’s condition as described in the previous section, and
can be conceptualized through three aspects: caregiving requirements, generalized losses, and losses
specifically associated to the interpersonal relationship with the patient. Caregiving requirements relate to
the objective burden of providing assistance to the patient in daily activities (ADL and IADL), financial
requirements, and where the patient resides (home-care vs. nursing home). Generalized losses associated
with coping with a family member suffering from dementia are manifested, among other things, in the
loss of personal freedom, the reduction of external involvement (e.g. employment, leisure activities, etc.),
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
and shrinkage of the social world. Losses vis-a-vis the impaired family member are expressed in loss of
communication, intimacy, ambiguity around the relationship and illness, future plans, and so on.
Caring / Caregiving Family Member Characteristics
This category includes the background and contextual factors, as well as the psychological
resources (or deficits) of the CCFM. This constitutes a variable that moderates between the personal
resources of kin and the caregiving requirements with their cognitive, behavioral, and emotional
challenges. Background and contextual factors include culture, ethnicity, age, gender, education, financial
status, physical health, social support (emotional, informational and tangible), and kinship (spouse, adult
child, grandchild, etc.). Psychological resources are expressed in such personality characteristics as
attachment style, meaning structures (secular and religious belief systems), psychiatric history, coping
styles and strategies, and a variety of factors that assist in coping with adversity (e.g. Antonovsky, 1998),
etc.
Assessment Domains of the Two-Track Model of Dementia Grief
In this section we extend and adapt the Two-Track Model of Loss and Bereavement (Rubin,
1981, 1999; Rubin et al., 2018), to the specific situation of dementia grief in what we call the Two-Track
Model of Dementia Grief (TTM-DG). Common to both models is the need to focus research and clinical
assessment over two tracks: Track I focusing on the impact of the kin/caregiver’s role on bio-psycho-
social functioning, while Track II focuses on the psychological organization of the ongoing relationship
with the patient and the degree to which the disease process has been assimilated. The potentially
traumatic experience of the illness can have physical, behavioral, cognitive and emotional implications of
deleterious impact operating as an acute stressor such as found in Post-Traumatic Stress Disorder
(American Psychiatric Association, 2013). In common with the stressors and challenges of major life
changing events, responses to the experience of a family member's illness and death may stimulate
growth as well as impact negatively for the individual. Typically, there is variation in what areas are
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
affected, in which direction and to what degree. The responses can be expressed along a number of
dimensions involving the domains of: (a) anxiety affect and cognitions; (b) changes in mood and related
cognitions; (c) somatic expressions (e.g. changes in appetite, sleep, sexual drive and general health
issues); (d) signs of a traumatic response; (e) changes in other family relationships; (f) changes in the
nature of broad interpersonal relations (friends, neighbors, and colleagues); (g) self-esteem and self-
system; (h) functioning in required life tasks such as employment; (i) the impact upon meaning in life;
and also (j) the degree to which personal growth, positive change and resilience are experienced. During
the assessment process, the intensity, duration, frequency, and characteristics that trigger or assist in
alleviating these reactions should be taken into consideration, and accordingly, whether and where to
intervene. As can be seen, existing models thus far have focused mostly on these reactions of the
caregivers.
The second track addresses the experience of loss as a major shock to the mental representations
and internal working model of the loved one during the disease process as well as after death. Addressing
the relationship of the CCFM includes a number of key domains beginning with the unfolding of the
cognitive impairment process and continuing to evolve and change during the long course of the illness,
at death, and in the years that follow the death. These include: (a) yearning and longing for the person as
they were before the illness; (b) the ability to access memories and the nature of the images, memories
and experiences involving the family member; (c) degree of emotional involvement and closeness
associated with him or her; (d) intensity and frequency of positive memories and feelings (and/or
idealization); (e) intensity and frequency of negative memories (and/or devaluation); (f) the extent of
preoccupation (and/or avoidance) vis a vis the loved one; (g) the extent of disorganized traumatic-like
experiences focused on the personhood of the ill family member; (h) conflictual aspects vis a vis the other
and the relationship; (i) the predominance of loss relevant cognitions and emotions reflecting aspects of
shock and numbness, heightened search for cues related to the person, the degree of psychological
disorganization and the extent of re-organization achieved in the response to the experience; (j)
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
impairment in self-esteem with regard to the other; and (k) the nature and extent to which formal and
informal memorialization are involved and their evolution over time. Whether discussed post-death or
during the illness, reviewing the “story of the illness” or the “story of the death” allows for assessment of
the degree to which the potentially traumatizing experience has been assimilated or continues to interfere
with the relationship to the cognitive emotional representations and bond with the living or deceased
patient. In the next section we examine a clinical case to illustrate the use of the TTM-DG.
Case Illustration
On the front door hangs a sign bearing two names -- that of Rachel, a widow in her late seventies,
and that of Thomas, the husband she lost four years ago. Married for more than five decades, in the last
12 years of his life Thomas suffered from Alzheimer’s dementia. As part of her participation in a research
study, Rachel welcomed me (A.M.) at the door. She had a pleasant and well-groomed appearance but
most noticeable was the sadness in her eyes. She began our interview by describing Tom and their
relationship over the years. "Good is all I can think of him; loyal, honest, kind and smart... It was just
love at first sight, and we couldn't live one without the other...”.
Later, Rachel described the period shortly before the illness was diagnosed. At that time, Tom
began to ask questions repeatedly and tended to forget the names of acquaintances and family members.
These early signs of the disease she attributed to normative aging processes. The first time she became
seriously concerned about a deterioration of his cognitive health ocurred during a walk home from a joint
activity when he spoke to her in a highly aggressive manner that was out of character. Sparked by this
unusual behavior, they sought out a neurological evaluation that confirmed that Tom was suffering from
cognitive decline. Rachel described this time as witnessing how his personality gradually changed and all
the time, her hoping that things would not get any worse. "From a gentle person he slowly became vulgar
and rude; I was gradually losing my partner and my best friend... I didn't know what to expect and how to
prepare for the future to come. I prayed, in vain, that it won’t get worse than it is now".
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
Rachel described their early life together where Tom was responsible for providing and for
handling financial affairs, while she was in charge of household management and of raising the children.
She spoke of how during the illness period, for the first time in her life, she had to take on Tom's previous
responsibilities and to learn them from the ground up. Rachel went on to say, casually but with great pain,
that "No one understood what I was going through, and I had no one to talk to and share my sorrow. All
my dreams and plans for our future together were shattered and I had to keep it deep in myself... I felt
like I don’t even have the right to be sad…". As the disease progressed, Tom's condition worsened
significantly, while Rachel continued to nurse him without any assistance. She suffered the effect of his
severe neuro-psychiatric symptoms, including his casting doubt on her loyalty, physical and verbal
violence, wandering, fecal incontinence and so on.
After approximately five years, in consultation with medical officials, Rachel decided to place
Tom in a nursing home located halfway between her and their children. The adult children, however,
were gradually distancing themselves from her in such a way that she was left all alone. "The children
couldn't handle it and just abandoned me…". In describing the hardship involved in her visitng daily Tom
by bus every day for seven years that took an hour and a half in each direction, the anger in her voice was
pronounced. She blamed Tom for objecting to her getting a driver's license years earlier. Subsequently,
her descriptions were accompanied by confusion that included feelings of guilt and shame: "I didn't know
who and what I was - married or widowed? My husband physically existed, but that was it. There was no
trace of the man that I knew before.... Until this day, I feel like I abandoned him in that nursing home. He
was always so kind to me, and I just left him there to die. I keep thinking about not having the chance to
say goodbye to him and not being there when he needed me most. Furthermore, I'm ashamed to say that
sometimes I even hoped for him to die and to get rid of the awful situation I was caught in…”.
After a short respite dedicated to eating cake and drinking coffee, Rachel went on to talk about
the emptiness that filled her life after his passing: "Since Tom passed away, I’ve lost meaning in my life.
When he was alive, I always had something to do and to worry about, and today I am completely alone
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
and worthless without him… suddenly there are far too many hours in a day." Her descriptions conveyed
how her life now was experienced as one without pleasure or sense of meaning, with much sadness,
emotional overflow, anxiety, social withdrawal, loneliness, and occassional thoughts and wishes for her
own death. Nevertheless, despite these feelings and this outlook on life, she tried her best to stay active:
"I fill the day with various activities like swimming, bead making, going to the movies and so on.
Otherwise, at home, I just keep on crying". In addition to her descriptions of her own life at this time,
Rachel reported difficulty in coming to terms with the reality of Tom's illness and death. She continued to
reminisce -- thinking, dreaming and longing on a daily basis for the Tom she knew before the illness.
"His presence is lacking for me... So, I constantly look at our old albums to remember who and what he
was before this illness came into our lives... It may sound a little strange, but many times I actually talk to
him...".
Toward the end of the meeting, Rachel was asked to fill out the Two-Track Bereavement
Questionnaire for Complicated Grief (TTBQ-CG) (Rubin & Bar-Nadav, 2016) and the short form of the
Experiences in Close Relationship Scale (ECR-S) (Wei, Russel, Mallinckrodt, & Vogel, 2007). On the
TTBQ-CG her overall score was significantly high and placed her in the clinical range indicating a high
level of bio-psycho-social dysfunction and trauma, along with difficulties in factors related to the ongoing
relationship with the deceased (active relational grief, conflict and a positive and close relationship).
Moreover, in the ECR-S measure of attachment, Rachel had an insecure attachment pattern with the
avoidance index particularly elevated.
Formulation based on the Two-Track Model of Dementia Grief
The case study above has a number of key themes emerging from the story of Rachel's coping
and mourning over the years. Present were: the loss of intimacy, communication and the sense of control
over the life she once knew; ambiguity around the situation she was faced with (Boss, 2010); lack of
social recognition of her distress and and her grieving process (Doka, 2008, 2010); loss of meaning in her
life (Neimeyer, 2011); abandonment by family and friends; changes in roles and responsibilities; stress
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
and burden related to the caretaker's role even after her husband's placement in a nursing home; and
difficulty in accepting the reality of loss.
From the way Rachel shared her memories and her current situation, it was noticeable how the
story of her life alongside Tom before the disease took hold tended to a relatively vague and idealized
picture of his character and the relationship, while when chronicling the illness Rachel swung to the
opposite pole characterized by a vivid depitction of more recent memories of her husband and his illness
accompanied by negative and unsettled emotional tones. Reporting the initial stages of the disease, she
expressed feelings of helplessness and uncertainty, while in describing the progressive deterioration she
described her frustration, anger and guilt. Following Tom's death, she described a state of ambivalence
and confusion in her feelings and thoughts. Rachel found it difficult to integrate these stories -- the before,
the illness, and the following the death -- into a coherent and progressive personal narrative. This was
expressed, among other things, in her reports of how she was doing everything she could in order to avoid
recalling memories of the years that Tom was ill due to the pain that this caused, although in her words:
"These constantly jump into my head without invitation, insist on staying and will not let go".
Based on the TTM-DG presented in the present article, we understand Rachel as experiencing
difficulties in many areas of bio-psycho-social functioning on Track I of the model. Rachel expresses
depressive symptoms, anxiety, signs of traumatic reaction, lack of sufficient and close family and social
interactions, along with impairment in self-image and system of meanings in her life. At the same time,
she is committed to maintaining involvement in life activities in many different areas of interest which
reflect Rachel’s emotional strenghts.
As for Track II, the nature of the ongoing relationship and the death story, we have many
indications of difficulty as well. Rachel experienced frequent and intense longing for renewed contact
with the Tom that she knew before the illness and demonstrates searching behaviors for external
reminders of him. Tom's image manifests itself in two unintegreated polarities, so that Rachel did all that
she could to create and maintain an ideal and unrealistic memory of him before the illness separate from
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
the conflictual negative mirror-image of him reflected in the illness narrative. From time to time, this
separation faltered, as for example in her description of aspects of their earlier relationship that had
compounded her difficulties during the illness (the denied opportunity to take driving lessons and his
decision not to involve her in their finances). We understood Rachel as holding on to a pre-occupation
with Tom in the years preceding the illness while trying, stubbornly and futilely, to avoid recalling how
Tom deteriorated and changed during the years of his illness, which caused almost unbearable dysphoria
and pain for her. Rachel reported a feeling of impaired self-worth without Tom by her side. It is our
understanding that Rachel had reached a stalemate in her mourning characteristic of complicated grief
that is manifest on both tracks of the Two-Track Model. The "story of the death" here began with the
dementia, and colors Racedel's experience of caring for her husband Thomas as the desease progressed.
Caring for and caring about a spouse deteriorating and changing due to dementia had compounded the
challenge of grief and mourning for this woman.
Summary and Future Directions
Although knowledge about the consequences of caregiving for a relative with dementia and its
associated losses is increasing, the focus on the grief and bereavement associated with the progression of
the disease unto death and beyond is vastly underrepresented. In particular, there has been scant attention
to the experience of caring for those affected, the gradual loss of identity and memory involved, and the
impact of these processes on the overt and especially covert aspects of the relationship with the patient
before the physical loss. The models in the field, despite their relevance, have focused almost exclusively
on the bio-psycho-social responses of the caregiver. This results in minimal attention to the interpersonal
relationship with the beloved one suffering from cognitive decline and the changes affecting the way in
which he or she is perceived. In the language of the TTM-DG, we emphasize the significance of the
continuing bond and the illness / death story (Track II).
In addition, because these models focus predominantly on the time when the patient is still alive,
the acute and chronic responses to the death are not a focus of attention. So much of the grief of dementia
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
loss involves the challenges of responding to the demands of caregiving and the heartbreaking changes
and evaporation of the personal identity of the beloved. The “personhood” and the physical existence of
the other are no longer in synch and it may be challenging for family members to integrate these disparate
features. Therefore, when the physical death of the "body" of the loved one occurs, a new stage presents
itself. Here the grieving family member has now an opportunity to reconnect and re-grieve for the person
they knew who is no more. This can be unencumbered, or heavily encumbered, by the disease progression
prior to death. Understanding what the caregivers go through, therefore, logically should include the time
after death as they have the opportunity to reach a new modus vivendi with the loss of their beloved,
whose physical death allows for a reconsolidation of the relationship as well of the experience of the
illness.
In this article, we proposed a comprehensive model that strives to integrate existing knowledge
and to provide answers to the limitations of the models described above. The Two-Track Model of
Dementia Grief builds on the well-established TTM paradigm that has proven to be effective for
empirical research and clinical intervention over the years. The TTM-DG provides a theoretical, research
and clinical framework for the assessment of grief responses across cultures and languages (e.g. Ayaz,
Karanci, & Aker, 2013; Rubin & Bar-Nadav, 2016; Rubin, Bar-Nadav, Malkinson, Koren, Gofer-
Shnarch, & Michaeli, 2009; Yasien-Esmael, Eshel, & Rubin, 2018, etc.). These are most relevant in light
of recent criticisms of research examining dementia caregiver grief and bereavement, with emphasis on
limited use of valid instruments and a lack of ethnic and cultural diversity (e.g. Arruda & Paun, 2017).
We believe that this proposed model is particularly suited for assessing the grief and mourning
accompanying the trajectory from cognitive impairment, to dementia and finally to death. Equally
important, the model is well suited as a base for conceptualizing resilience and its implications for
targeting intervention when needed. Evidence-based research has a role to play in the evolution of the
approach advocated here. Incorporating the insights of the model at the clinical and research interface
with those dealing with the trajectory of cognitive decline and death will allow us to build on a larger
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
body of knowledge for the future. Ultimately, it is that future literature that will determine the theoretical,
clinical and research potentials of the model proposed here.
Acknowledgements
The authors thank Robert A. Neimeyer for his valuable and thoughtful comments.
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Rubin, S. S., Manevich, A., & Doron, I., I. (2019). The Two-Track Model of Dementia Grief (TTM-DG): The theoretical and clinical significance of the continuing bond in sickness and in death. Death Studies. doi:10.1080/07481187.2019.1688014
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