clbhr.haifa.ac.ilclbhr.haifa.ac.il/images/Rubin_Manevich_and_Doron_20… · Web viewStudies...

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


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


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

3


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

4


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.

5


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

6


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

7


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

8


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.

9


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.

10


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

11


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

12


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

13


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

14


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,

15


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

16


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

17


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

18


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).

19


Table 1: Dimensions of Patient and Caring / Caregiving Family Member (CCFM) Relevant for Assessment of Impact of Disease Trajectory

20


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.),

21


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

22


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)

23


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".

24


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

25


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

26


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

27


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

28


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

29


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.

30


Bibliography

Adams, K. B., & Sanders, S. (2004). Alzheimer’s caregiver differences in experience of loss, grief reactions and depressive symptoms across stage of disease: A mixed-method analysis. Dementia, 3(2), 195-210. doi:10.1177/1471301204042337

Alzheimer's Association. (2018). 2018 Alzheimer's disease facts and figures. Alzheimer's and Dementia, 14(3), 367-429. doi:10.1016/j.jalz.2018.02.001

American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th Ed.). Arlington: American Psychiatric Association.

Aneshensel, C. S., Botticello, A. L., & Yamamoto-Mitani, N. (2004). When caregiving ends: The course of depressive symptoms after bereavement. Journal of Health and Social Behavior, 45(4), 422-440. doi:10.1177/002214650404500405

Antonovsky, A. (1998). The sense of coherence: An historical and future perspective. In H. I. McCubbin, E. A. Thompson, A. I. Thompson, & J. E. Fromer (Eds.), Resiliency in families series, Vol. 1. Stress, coping, and health in families: Sense of coherence and resiliency (pp. 3-20). Thousand Oaks, CA, US: Sage Publications, Inc.

Arruda, E. H., & Paun, O. (2017). Dementia caregiver grief and bereavement: An integrative review. Western Journal of Nursing Research, 39(6), 825-851. doi:10.1177/0193945916658881

Attig, T. (2011). How we grieve: Relearning the world. New York: Oxford University Press.

Ayaz, P. T., Karanci, P. A. N., & Aker, A. T. (2013). The reliability and validity study of the Turkish version of two track model of bereavement questionnaire. Turkish Journal of Psychiatry, 25(4), 1-11.

Blandin, K., & Pepin, R. (2017). Dementia grief: A theoretical model of a unique grief experience. Dementia, 16(1), 67-78. doi:10.1177/1471301215581081

Blatt, S. J., & Levy, K. N. (2003). Attachment theory, psychoanalysis, personality development, and psychopathology. Psychoanalytic Inquiry, 23(1), 102-150. doi:10.1080/07351692309349028

Blieszner, R., Roberto, K. A., Wilcox, K. L., Barham, E. J., & Winston, B. L. (2007). Dimensions of ambiguous loss in couples coping with mild cognitive impairment. Family Relations, 56(2), 196-209. doi:10.1111/j.1741-3729.2007.00452.x

Boss, P. (2010). The trauma and complicated grief of ambiguous loss. Pastoral Psychology, 59(2), 137-145. doi:10.1007/s11089-009-0264-0

Bowlby, J. (1969). Attachment and loss: Vol. 1. Attachment. New York: Basic Books.

Bowlby, J. (1973). Attachment and loss: Vol. 2. Separation, anxiety and anger. New York: Basic Books.

Bowlby, J. (1980). Attachment and loss: Vol. 3. Loss, sadness and depression. New York: Basic Books.

Bretherton, I. (1992). The origins of attachment theory: John Bowlby and Mary Ainsworth. Developmental Psychology, 28(5), 759-775. doi:10.1037/0012-1649.28.5.759

Burke, L. A., & Neimeyer, R. A. (2013). Prospective risk factors for complicated grief: A review of the empirical literature. In M. Stroebe, H. Schut, P. Boelen, & J. Van den Bout (Eds.), Complicated grief: Scientific foundations for health care professionals (pp. 145-161). Washington, DC: American Psychological Association.

31


Cassidy, J., & Shaver, P. R. (Eds.). (2016). Handbook of attachment, third edition: Theory, research, and clinical applications. New York: Guilford Press.

Chan, D., Livingston, G., Jones, L., & Sampson, E. L. (2013). Grief reactions in dementia carers: A systematic review. International Journal of Geriatric Psychiatry, 28(1), 1-17. doi:10.1002/gps.3795

Corey, K. L., & McCurry, M. K. (2016). When caregiving ends: The experiences of former family caregivers of people with dementia. The Gerontologist, 00(00), 1–10. doi:10.1093/geront/gnw205

Costa-Requena, G., Val, M. E., & Cristòfol, R. (2015). Caregiver burden in end-of-life care: Advanced cancer and final stage of dementia. Palliative and Supportive Care, 13(3), 583-589. doi:10.1017/S1478951513001259

Cox, H. G. (2016). Later life: The realities of aging. New York: Routledge.

Crespo, M., Piccini, A. T., & Bernaldo-de-Quirós, M. (2013). When the care ends: Emotional state of Spanish bereaved caregivers of persons with dementia. The Spanish Journal of Psychology, 16(e97), 1-8. doi:10.1017/sjp.2013.97

Doka, K. J. (2008). Disenfranchised grief in historical and cultural perspective. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (pp. 223-240). Washington, DC: American Psychological Association.

Doka, K. J. (2010). Grief, multiple loss and dementia. Bereavement Care, 29(3), 15-20. doi:10.1080/02682621.2010.522374

Farran, C. J., Keane-Hagerty, E., Salloway, S., Kupferer, S., & Wilken, C. S. (1991). Finding meaning: An alternative paradigm for Alzheimer's disease family caregivers. The Gerontologist, 31(4), 483-489. doi:10.1093/geront/31.4.483

Field, N. P. (2008). Whether to relinquish or maintain a bond with the deceased. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (pp. 113-132). Washington, DC: American Psychological Association.

Field, N., & Filanosky, C. (2009) Continuing bonds, risk factors for complicated grief, and adjustment to bereavement. Death Studies, 34(1), 1-29, doi:10.1080/07481180903372269

Fonagy, P. (2018). Attachment theory and psychoanalysis. New York: Routledge.

Fonareva, I., & Oken, B. S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International Psychogeriatrics, 26(5), 725-747. doi:10.1017/S1041610214000039

Frank, J. B. (2008). Evidence for grief as the major barrier faced by Alzheimer caregivers: A qualitative analysis. American Journal of Alzheimer's Disease and Other Dementias, 22(6), 516-527. doi:10.1177/1533317507307787

Freud, S. (1917/1957). Mourning and melancholia. Standard edition of the complete psychological works of Sigmund Freud. London, UK: Hogarth.

Garand, L., Lingler, J. H., Deardorf, K. E., DeKosky, S. T., Schulz, R., Reynolds III, C. F., & Dew, M. A. (2012). Anticipatory grief in new family caregivers of persons with mild cognitive impairment and dementia. Alzheimer Disease and Associated Disorders, 26(2), 159-165. doi:10.1097/WAD.0b013e31822f9051

32


Georges, J., Jansen, S., Jackson, J., Meyrieux, A., Sadowska, A., & Selmes, M. (2008). Alzheimer's disease in real life–the dementia carer's survey. International Journal of Geriatric Psychiatry, 23(5), 546-551. doi:10.1002/gps.1984

Ghezzi L. (2018). Diagnosis of Alzheimer’s disease typical and atypical forms. In: D. Galimberti & E. Scarpini (Eds.), Neurodegenerative Diseases (pp. 21-28). New York: Springer. doi:10.1007/978-3-319-72938-1_2

Hebert, L. E., Weuve, J., Scherr, P. A., & Evans, D. A. (2013). Alzheimer disease in the United States (2010–2050) estimated using the 2010 census. Neurology, 80(19), 1778-1783. doi:10.1212/WNL.0b013e31828726f5

Holley, C. K., & Mast, B. T. (2009). The impact of anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist, 49(3), 388-396. doi:10.1093/geront/gnp061

Hoy, W. G. (2016). Bereavement groups and the role of social support: Integrating theory, research, and practice. New York: Routledge.

Klass, D. (2006). Continuing conversation about continuing bonds. Death Studies, 30(9), 843-858. doi:10.1080/07481180600886959

Klass, D., Silverman, P., & Nickman, S. (Eds.). (1996). Continuing bonds: New understandings of grief. Washington, DC: Taylor & Francis.

Klass, D., & Steffen, E. M. (Eds.). (2018). Continuing bonds in bereavement: New directions for research and practice. Taylor & Francis. New York: Routledge.

Kosminsky, P. S., & Jordan, J. R. (2016). Attachment-informed grief therapy: The clinician’s guide to foundations and applications. New York: Routledge.

Kristanti, M. S., Engels, Y., Effendy, C., Utarini, A., & Vernooij-Dassen, M. (2017). Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia. International Psychogeriatrics, 1-12. doi:10.1017/S1041610217001508

Langa, K. M., Chernew, M. E., Kabeto, M. U., Regula Herzog, A., Beth Ofstedal, M., Willis, R. J., Wallace, R. B., Mucha, L. M., Straus, W. L., & Fendrick, A. M. (2001). National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 16(11), 770-778. doi:10.1111/j.1525-1497.2001.10123.x

Lindauer, A., & Harvath, T. A. (2014). Pre-death grief in the context of dementia caregiving: A concept analysis. Journal of Advanced Nursing, 70(10), 2196-2207. doi:10.1111/jan.12411

Lindemann, E. (1944). Symptomatology and management of acute grief. American Journal of Psychiatry, 101(2), 141-148.

Lloyd, J., Patterson, T., & Muers, J. (2016). The positive aspects of caregiving in dementia: A critical review of the qualitative literature. Dementia, 15(6), 1534-1561. doi:10.1177/1471301214564792

Loos, C. & Bowd, A. (1997). Caregivers of persons with Alzheimer's disease: Some neglected implications of the experience of personal loss and grief. Death Studies, 21(5), 501-514. doi:10.1080/074811897201840

Malkinson, R., & Bar-Tur, L. (2014). Cognitive grief therapy: Coping with the inevitability of loss and grief in later life. In N.A. Pachana & D. K. Laidlaw (Eds.), The Oxford Handbook of Clinical Geropsychology (pp. 837-855). London: Oxford Press.

33


Mausbach, B. T., Chattillion, E. A., Roepke, S. K., Patterson, T. L., & Grant, I. (2013). A comparison of psychosocial outcomes in elderly Alzheimer caregivers and noncaregivers. The American Journal of Geriatric Psychiatry, 21(1), 5-13. doi:10.1016/j.jagp.2012.10.001

Meuser, T. M., & Marwit, S. J. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist, 41(5), 658-670. doi:10.1093/geront/41.5.658

Mikulincer, M., & Shaver, P. R. (2008). An attachment perspective on bereavement. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (pp. 87-112). Washington, DC: American Psychological Association.

Monin, J. K., Schulz, R., & Kershaw, T. S. (2013). Caregiving spouses’ attachment orientations and the physical and psychological health of individuals with Alzheimer's disease. Aging and Mental Health, 17(4), 508-516. doi:10.1080/13607863.2012.747080

National Alliance for Caregiving. (2017). Research report: Dementia caregiving in the U.S. National Alliance for Caregiving, in partnership with the Alzheimer's Association. Retrieved from: http://www.caregiving.org/wp-content/uploads/2017/02/DementiaCaregivingFINAL_WEB.pdf

Neimeyer, R. A. (2011). Reconstructing meaning in bereavement. In W. Watson & D. Kissane (Eds.), Handbook of psychotherapies in cancer care. New York: Wiley.

Neimeyer, R. A. (2016). Meaning reconstruction in the wake of loss: Evolution of a research program. Behaviour Change, 33(2), 65-79. doi:10.1017/bec.2016.4

Neimeyer, R. A., & Holland, J. M. (2015). Bereavement in later life: Theory, assessment and intervention. In B. T. Mast & P. A. Lichtenberg (Eds.), Handbook of Clinical Geropsychology. Washington, DC: American Psychological Association.

Nelis, S. M., Clare, L., & Whitaker, C. J. (2014). Attachment in people with dementia and their caregivers: A systematic review. Dementia, 13(6), 747-767. doi:10.1177/1471301213485232

Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Bro, F., & Guldin, M. B. (2016). Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clinical Psychology Review, 44, 75-93. doi:10.1016/j.cpr.2016.01.002

Noyes, B. B., Hill, R. D., Hicken, B. L., Luptak, M., Rupper, R., Dailey, N. K., & Bair, B. D. (2010). The role of grief in dementia caregiving. American Journal of Alzheimer's Disease and Other Dementias, 25(1), 9-17. doi:10.1177/1533317509333902

Oyebode, J. R., & Owens, R. G. (2013). Bereavement and the role of religious and cultural factors. Bereavement Care, 32(2), 60-64. doi:10.1080/02682621.2013.812828

Parkes, C. M., & Prigerson, H. G. (2013). Bereavement: Studies of grief in adult life. New York: Routledge.

Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583-594. doi:10.1093/geront/30.5.583

Pearlman, L. A., Wortman, C. B., Feuer, C. A., Farber, C. H., & Rando, T. A. (2014). Treating traumatic bereavement: A practitioner's guide. New York: Guilford Press.

Prigerson, H. G., Vanderwerker, L. C., & Maciejewski, P. K. (2008). A case for inclusion of prolonged grief disorder in DSM-V. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of

34


bereavement research and practice: Advances in theory and intervention (pp. 165-186). Washington, DC: American Psychological Association.

Rando, T. A. (1986). Loss and anticipatory grief. Lexington, MA: Lexington Books.

Rando, T. A. (Ed.). (2000). Clinical dimensions of anticipatory mourning: Theory and practice in working with the dying, their loved ones, and their caregivers. Champaign, IL, US: Research Press.

Rankin, E. D., Haut, M. W., & Keefover, R. W. (2001). Current marital functioning as a mediating factor in depression among spouse caregivers in dementia. Clinical Gerontologist, 23(3-4), 27-44. doi:10.1300/J018v23n03_04

Ross, A., & Dagley, J. C. (2009). An assessment of anticipatory grief as experienced by family caregivers of individuals with dementia. Alzheimer's Care Today, 10(1), 8-21. doi:10.1097/ACQ.0b013e318197427a

Rubin, S. (1981). A two-track model of bereavement: Theory and application in research. American Journal of Orthopsychiatry, 51(1), 101-109. doi:10.1111/j.19390025.1981.tb01352.x

Rubin, S. S. (1999). The Two-Track Model of Bereavement: Overview, retrospect, and prospect. Death studies, 23(8), 681-714. doi:10.1080/074811899200731

Rubin, S. S. (2015). Loss and mourning in the Jewish tradition. Omega: Journal of Death and Dying, 70(1), 79-98. doi:10.2190/OM.70.1.h

Rubin, S. S., & Bar-Nadav, O. (2016). The Two-Track Model of Bereavement Questionnaire for Complicated Grief (TTBQ-CG31). In R. A. Neimeyer (Ed.), Techniques of Grief Therapy: Assessment and Intervention (pp. 87-98). New York: Routledge.

Rubin, S. S., Bar-Nadav, O., Malkinson, R., Koren, D., Gofer-Shnarch, M., & Michaeli, E. (2009). The Two-Track Model of Bereavement Questionnaire (TTBQ): Development and findings of a relational measure. Death Studies, 33, 1-29. doi:10.1080/07481180802705668

Rubin, S. S., Malkinson, R., & Witztum, E. (2008). Clinical aspects of DSM complicated grief diagnosis: Challenges, dilemmas, and opportunities. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (pp. 187-206). Washington, DC: American Psychological Association.

Rubin, S. S., Malkinson, R., & Witztum, E. (2012). Working with the bereaved: Multiple lenses on loss and mourning. Taylor & Francis. New York: Routledge.

Rubin, S. S., Malkinson, R., & Witztum, E. (2018). The Two-Track Model of Bereavement and Continuing Bonds. In D. Klass, & E. M. Steffen (Eds.), Continuing bonds in bereavement: New directions for research and practice (pp. 17-30). Taylor & Francis. New York: Routledge.

Rubin, S. S., & Yasien-Esmael, H. (2004). Loss and bereavement among Israel's Muslims: Acceptance of God's will, grief, and the relationship to the deceased. Omega: Journal of Death and Dying, 49(2), 149-162. doi:10.2190/5UNJ-BNBF-6PVT-L4RE

Rynearson, E. K. (2001). Retelling violent death. Taylor & Francis. New York: Routledge.

Sanders, S., & Corley, C. S. (2003). Are they grieving? A qualitative analysis examining grief in caregivers of individuals with Alzheimer's disease. Social Work in Health Care, 37(3), 35-53. doi:10.1300/J010v37n03_03

35


Sanders, S., Morano, C., & Corley, C. S. (2003). The expressions of loss and grief among male caregivers of individuals with Alzheimer's disease. Journal of Gerontological Social Work, 39(4), 3-18. doi:10.1300/ J083v39n04_02

Sanders, S., Ott, C. H., Kelber, S. T., & Noonan, P. (2008). The experience of high levels of grief in caregivers of persons with Alzheimer's disease and related dementia. Death Studies, 32(6), 495-523. doi:10.1080/07481180802138845

Scholtes, D., & Browne, M. (2015). Internalized and externalized continuing bonds in bereaved parents: Their relationship with grief intensity and personal growth. Death Studies, 39(2), 75-83. doi:10.1080/07481187.2014.890680

Schulz, R., Boerner, K., Shear, K., Zhang, S., & Gitlin, L. N. (2006). Predictors of complicated grief among dementia caregivers: A prospective study of bereavement. The American Journal of Geriatric Psychiatry, 14(8), 650-658. doi:10.1097/01.JGP.0000203178.44894.db

Shah, S. M., Carey, I. M., Harris, T., DeWilde, S., Victor, C. R., & Cook, D. G. (2016). The mental health and mortality impact of death of a partner with dementia. International Journal of Geriatric Psychiatry, 31(8), 929-937. doi:10.1002/gps.4411

Shavit, O., Ben-Ze'ev, A., & Doron, I. (2017). Love between couples living with Alzheimer's disease: Narratives of spouse care-givers. Ageing and Society, 1-30. doi:10.1017/S0144686X1700109X

Silverberg, E. (2007). Introducing the 3-A grief intervention model for dementia caregivers: Acknowledge, assess and assist. Omega: Journal of Death and Dying, 54(3), 215-235. doi:10.2190/D1R5-0473-1922-4N70

Silverman, P. R., & Worden, J. W. (1993). Children's reactions to the death of a parent. In M. S. Stroebe, W. Stroebe, & R. O. Hansson (Eds.), Handbook of bereavement: Theory, research, and intervention (pp. 300-316). New York: Cambridge University Press. doi:10.1017/CBO9780511664076.021

Stroebe, M., Gergen, M. M., Gergen, K. J., & Stroebe, W. (1992). Broken hearts or broken bonds: Love and death in historical perspective. American Psychologist, 47(10), 1205-1212. doi:10.1037/0003-066X.47.10.1205

Stroebe, M., & Schut, H. (1999). The dual process model of coping with bereavement: Rationale and description. Death Studies, 23(3), 197-224. doi:10.1080/074811899201046

Tedeschi, R. G., & Calhoun, L. G. (2004). Helping bereaved parents: A clinician's guide. New York: Routledge.

Tzuang, M., & Gallagher-Thompson, D. (2014). Caring for care-givers of a person with dementia. In N. A. Pachana, & K. Laidlaw (Eds.), The Oxford Handbook of Clinical Geropsychology (pp. 797-836). Oxford: Oxford University Press.

Walter, T. (1996). A new model of grief: Bereavement and biography. Mortality, 1(1), 7-25. doi: 10.1080/713685822

Wei, M., Russell, D. W., Mallinckrodt, B., & Vogel, D. L. (2007). The Experiences in Close Relationship Scale (ECR)-short form: Reliability, validity, and factor structure. Journal of Personality Assessment, 88(2), 187-204. doi:10.1080/00223890701268041

Wimo, A., Jönsson, L., Bond, J., Prince, M., & Winblad, B. (2013). The worldwide economic impact of dementia 2010. Alzheimer's & Dementia, 9(1), 1-11. doi:10.1016/j.jalz.2012.11.006

36


Worden, J. W. (2018). Grief counseling and grief therapy: A handbook for the mental health practitioner. New York: Springer.

Yasien-Esmael, H., Eshel, Y., & Rubin, S. S. (2018). Bereavement of Israeli Arab Muslim widows: Determinants of adjustment and supporting attributes. Death Studies, 42(1), 52-62. doi:10.1080/07481187.2017.1326542

Yu, D. S. F., Cheng, S. T., & Wang, J. (2017). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1-26. doi:10.1016/j.ijnurstu.2017.10.008

Zhang, B., Mitchell, S. L., Bambauer, K. Z., Jones, R., & Prigerson, H. G. (2008). Depressive symptom trajectories and associated risks among bereaved Alzheimer disease caregivers. The American Journal of Geriatric Psychiatry, 16(2), 145-155. doi:10.1097/JGP.0b013e318157caec

37

clbhr.haifa.ac.ilclbhr.haifa.ac.il/images/Rubin_Manevich_and_Doron_20… · Web viewStudies...

Documents

Transcript of clbhr.haifa.ac.ilclbhr.haifa.ac.il/images/Rubin_Manevich_and_Doron_20… · Web viewStudies...