When Ambiguous Loss Becomes Ambiguous Grief Clinical Work with Bereaved Dementia Caregivers Health Social Work

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When Ambiguous Loss Becomes Ambiguous
Grief: Clinical Work with Bereaved
Dementia Caregivers
Abigail Nathanson and Madeline Rogers
The experience of caring for someone with dementia can be heartbreaking. The losses
inherent to caregiving itself can be difficult to reconcile after the death of a person with
dementia, causing challenges in the bereavement stage. Although there is often significant
social support to help people process the death of someone close to them, clinicians can
struggle to help bereaved dementia caregivers integrate their ambiguous losses from caregiving,
such as loss of roles, functions, and relationships, into a postdeath bereavement process. Many
socioeconomic, personality, and family functioning factors impact an individual caregiver’s
experience, and there are more global influences from the nature of dementia caregiving itself
that must be understood to best support a caregiver. Using the lens of the dementia grief model
and examples from a case study, this article seeks to illustrate the dynamics inherent in
integrating ambiguous losses following the death of a person from dementia, and it proposes
clinical goals for working effectively with this population.
KEY WORDS: ambiguous loss; bereavement; caregiving; dementia; grief
T
he experience of caring for someone
with dementia, of slowly “watching the
deterioration and disintegration” of some-
one once familiar (Dupuis, 2002), can be heartbreak-
ing. The preceding quote represents the experience
of one caregiver. However, it is often the reality for
the 16.1 million people who provide unpaid care to
the 5.7 million people living with dementia in the
United States today (Alzheimer’s Association, 2018).
Maya is one such caregiver. She is a Black, Ca-
ribbean American, cisgender middle-age woman,
and one of several siblings. Her mother had Alz-
heimer’s disease. Maya was the primary informal
caregiver for her mother for more than a decade,
during which much of her own professional and
interpersonal development was put on hold. Sev-
eral months after the death of her mother, Maya
sought out a bereavement group, saying she did
not feel she was grieving “correctly”; she was not
thinking of her mother or crying as frequently as
she had anticipated she would, and she felt like this
meant something was wrong with her. Just as she
did in her caregiving role and now in a new role as
a bereaved adult child, Maya had identified a prob-
lem and tried to find a way to solve it.
Because dementia is considered a terminal ill-
ness, “hundreds of thousands of dementia care-
givers start the bereavement process every year”
(Supiano, Haynes, & Pond, 2017, p. 155). During
the progression of a neurodegenerative dementia
such as Alzheimer’s disease, both the person with
the illness and the caregiver experience losses on
multiple levels and usually over a prolonged pe-
riod. Notably, according to Ross and Dagley
(2009), caregiving for people with dementia results
in nearly double the amount of losses as caregiv-
ing for those with a disease other than dementia.
Many losses occur during the progression of the
disease, even before the death of the person. So,
when does the grieving of losses by caregivers
actually begin in dementia?
Even though death is usually a clear, recognized
concrete loss, the losses of roles, connections, func-
tions, and relationships can cause hidden pain and
distress, too. These losses are called “ambiguous”
because they are not always recognized or named,
and, thus, they are not always allowed to progress
through a natural grief cycle toward integration
(Boss, 2010; Hovland, 2018). For many in the care-
giving dyad, suffering is so intense that death of the
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person with dementia can bring feelings of relief
(Frank, 2008; Waldrop, 2007), which is often unex-
pected and yet another source of distress for the
caregiver.
The experience of caregiving is taxing for many
and is filled with losses for most (Hovland, 2018),
yet some caregivers turn the responsibility inward
and integrate the duties into their sense of self.
Whether this experience is culturally driven or
based on the personality makeup of an individual,
some caregivers seem to thrive under the pressure
and emerge with increased self-esteem, healed
childhood traumas, and a renewed sense of pur-
pose in life. The meanings of the multiple losses
can become an opportunity to expand caregiving
into being considered a desired identity rather than a
source of loss. For many such caregivers, the biggest
loss comes after death: the loss of the caregiving role.
What happens when, instead of relief, death yields
an identity crisis for the former caregiver?
This article proposes clinical goals for working
with bereaved caregivers as they integrate ambigu-
ous losses following the death of a person with
dementia. It uses a case example to illustrate the
multiple social, psychological, and emotional factors
that affect successful grief integration.
BEREAVEMENT OF THE DEMENTIA CAREGIVER
Why Does Ambiguity Matter?
The nature of the ambiguous losses from dementia
grief differs from a more typical grief process. To
work successfully with the bereavement of a de-
mentia caregiver, it is important to first understand
how these processes are different. Typical grief can
be understood as progressing from a premorbid
state to a loss and then an adaptation to that loss.
The adaptation often requires the support of nor-
mative social rituals to assist in adaptive integration
to a postloss stage (Waldrop, 2007) and is consid-
ered a normal part of the human experience.
The grieving process of a dementia caregiver,
however, is shaped by their experience of the person
with dementia’s struggle with neurodegeneration
over time (Frank, 2008; Hovland, 2018). There are
multiple losses within an experience of decline. A
caregiver’s grief in a dementia process typically con-
sists of a premorbid state, followed by the onset of
dementia that precipitates multiple, unnamed am-
biguous losses that, in turn, can lead to difficulties
in grief adaptation (van Wijngaarden, van der Wed-
den, Henning, & Komen, 2018).
In a typical grieving process, there is time
following a loss to focus on integrating it into a
postmorbid stage. But with the progression of de-
mentia, the postmorbid stage of one loss becomes
the premorbid stage for the next, often in rapid
and overlapping succession. The time normally
spent acknowledging and adapting to one loss
now must be spent preparing for or experiencing
the next. Each loss requires the caregiver to adapt
to an ever-changing “new normal.” To compli-
cate matters, the losses are not linear: One day, the
person with dementia may not recognize the care-
giver, but the next day, they might. The caregiver
is left not knowing what has been lost or when to
start grieving it. “Difficulty accommodating to these
changes and the eventual death of the care recipient
contributes to risk of ineffective post-death integra-
tion of grief” (Supiano et al., 2017, p. 156). Ambig-
uous losses easily become ambiguous grief. Maya
struggled with knowing how to grieve correctly be-
cause her grief was as unclear as her losses had been.
Best practices for work with dementia caregivers
must consider how the experience of ambiguous
losses affects their experience of grief integration af-
ter a death (Frank, 2008; Hovland, 2018). It is also
important to consider how psychological and social
forces affect an individual’s experience with demen-
tia grief integration.
The Dementia Grief Model
Blandin and Pepin (2017) developed the dementia
grief model (DGM), which consists of three stages:
separation, liminality, and reemergence. It buildson
the theories of ambiguous loss to present a frame-
work for understanding how dementia caregivers
cope with loss. It speaks to their specific difficulties
within the process of bereavement integration. This
model illustrates how “the dementia grief process
is vulnerable to being stalled through a failure of
the dynamic mechanisms: acknowledging loss, tol-
erating difficult feelings, and adapting to the new life
circumstances or reality of the loss” (Blandin &
Pepin, 2017, p. 72).
Within the stage of separation, Blandin and
Pepin (2017) described how “each loss invites a
state of separation from the person with dementia,
from the life one has lived in the past, and from
an anticipated future” (p. 73). Maya experienced
these separations during and after the decade spent
being her mother’s informal caregiver. Although
her mother’s death was a concrete loss, there were
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numerous ambiguous losses along her mother’s
disease trajectory: her mother’s ability to speak,
recognize Maya, eat, and move independently.
Each of these losses invited further departure from
Maya’s concept of whom she knew her mother to
be.
In addition, Maya put personal relationships on
hold while caregiving; her anticipated future of
having a partner and a family was suspended. She
became disconnected from her career aspirations
in the corporate world. She described a disillusion-
ment in which she no longer identified with her
professional goals and instead focused on working
with older adults as a professional health coach.
Naturally, the eventual death of her mother also
invited a state of separation in which, among other
losses, Maya’s identity of “caregiver” was lost.
Within the grief process of each loss there is
liminality. Blandin and Pepin (2017) explain the
stage of liminality as “being in-between a previous
situation and an emerging situation” (p. 73). This
process is characterized by ambiguity and unpre-
dictability; a caregiver is both coming from where
they were and figuring out where they are going
next. The losses, sacrifices, compromises, and accom-
modations necessary for dementia caregiving now
must be readjusted as caregivers learn to meet their
own needs again (Hovland, 2018; Waldrop, 2007).
Tolerating the loss of someone is also tolerating the
loss of who you were to them; for some caregivers,
finding a way to hold on to that identity is a way of
coping with the uncertainty of the identity transition.
Maya was thrust into a liminal state upon the
death of her mother. She came to the bereavement
group in the midst of a career overhaul, having left
her corporate position to work with older adults.
She was, in essence, looking to be a professional
caregiver. Maya’s diligent efforts to maintain the
identity she had built over a decade could be inter-
preted as integrating and tolerating the liminality
of the meaning and identity she had constructed
in the wake of her mother’s death.
Within the stage of reemergence, Blandin and
Pepin (2017) explained that “the loss has been rec-
ognized, accepted, and the new reality has been in-
corporated into daily life” (p. 74). Maya originally
struggled with reemergence, feeling that because
she was not “grieving correctly,” she could not
successfully move into the next phase of her life.
Maya’s reemergence was facilitated by the be-
reavement group she attended; she became able to
reframe and accept the losses and changes in her
life (Dupuis, 2002). It became less about “grieving
correctly” and more about how she would incor-
porate her experience of caregiving into this next
stage of her life.
The Dynamic Experiences of Caregiving in
Bereavement
Understanding the dynamics of the ambiguous
losses experienced during caregiving inform the spe-
cific psychological processes that dementia care-
givers endure in their bereavement. As Boss (2010)
described, although traditional grief work has a focus
of adapting to a complete absence, losses associated
with dementia are more complex; thus, in bereave-
ment, processing these losses can be more complex,
too.
A person with dementia is physically present but
understood to be at least somewhat psychologically
absent. Specifically, when the person with demen-
tia is rendered emotionally absent by the illness
progression, often, the “caregiver, feeling ineffec-
tive, becomes less mastery-oriented, and often
depressed” (Cutillo-Schmitter, 1996, p. 35). The
disconnect between caregiver and the person with
dementia can result in relational disruption in
which the caregiver is still interacting with part of
the person, while part is gone. Successfully adapt-
ing to the parts that are gone is made difficult by
the parts still present (Rolland, 2017).
When caregivers have to redefine their own
sense of self and relationship to the person with
dementia, this process can create instability and
disconnect. In some caregivers, the dynamic mecha-
nism that seeks stability in chaos can turn inward. It
is an attempt to make the incomprehensible com-
prehensible, to internalize a locus of control in a sit-
uation that can feel out of control. Ambiguity in
caregiving can be replaced by a certainty of purpose;
when caregiving ambiguity ends at death, the ambi-
guity itself does not end, it merely shifts form. Ulti-
mately, the interaction of ambiguity and continuous
loss inherent in dementia yields worse mental health
outcomes for dementia caregivers, compared with
other caregivers. These can include heightened risk
for depression, low self-esteem, social isolation, anx-
iety, increased anger, and guilt (Arruda & Paun,
2017).
Additional factors contribute to the psychological
experience of dementia caregivers during caregiving
and bereavement including lack of communication
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from the person with dementia in their final days,
length of illness, likelihood of skilled-nursing facility
placement, and the unlikelihood of hospice use
(Arruda & Paun, 2017). Each of these scenarios pre-
cipitates its own set of circumstances to which the
caregiver must adapt. Given these challenges, care-
givers with pre-loss grief and low preparedness re-
quire additional support (Nielsen, Neergaard, Jensen,
Bro, & Guldin, 2016).
Social Intersectionality: Race, Culture,
Gender, and Family Constructs
As noted previously, Maya is a Black woman and
cisgender caregiver who is one of several siblings.
Each of these characteristics contributes to her ex-
perience as a dementia caregiver and bereaved
adult child. Maya was not the only available care-
giver; her siblings could have taken on this respon-
sibility. However, Maya was the daughter living
nearest her mother. And although several of her
siblings lived nearby, our health care system usually
demands one person assume most caregiving re-
sponsibility. The primary caregiver is generally fe-
male (Rolland, 2017). Maya’s brother lived nearby
and although her mother lived in his home, he was
less involved in the hands-on caregiving. Instead,
the revolving door of a visiting nurse service and
Maya, traveling between her own home and that
of her brother, took on the mantle of care. This ar-
rangement was culturally congruent to Maya, who
felt her role and range of acceptable emotional
responses was well defined within her family’s
Afro-Caribbean community.
Maya’s race also informs her perception and ex-
perience of the caregiver role. Fulfillment charac-
terized this; caregiving enabled her to “pay back”
her mother for raising her and her siblings. Care-
givers like Maya are morelikely to provide a
greater number of care hours and to engage in
more demanding caregiving tasks, while simulta-
neously being more likely to find caregiving to be
rewarding (Wells et al., 2016). This approach to
caregiving means that Black women who are care-
givers are less likely to have their stressors recog-
nized and aided; they perceive their experience as
normal and find it is gratifying. Consequently, in
their bereavement, Black caregivers are less likely
to view death as a relief and more likely to report a
great perception of loss (Owen, Goode, & Haley,
2001). They are less likely to be prepared for the
death of the person with dementia, increasing risk
for depression and anxiety and symptoms of com-
plicated grief after death (Hebert, Dang, & Schulz,
2006).
The family’s structure and functioning further
contributes to how caregiving is understood. If a
family is disjointed in its emotional connectedness,
members are more likely to minimize illness, and
consequently, the role of caregiving. By contrast, if
the family has particularly strong emotional ties,
they are more likely to be “exclusively attentive to
the ill member, and neglecting self and others’
needs within the family” (Cutillo-Schmitter, 1996,
pp. 33–34). Maya’s family was defined as her mother;
she raised Maya and her siblings as a single mother
with a hands-on parenting style, and Maya felt a
strong emotional tie to her.
Maya’s mother had been a consistent, depend-
able presence in her life, in stark contrast to the in-
consistent presence of her father during Maya’s
childhood. The perceived partial abandonment of
her father in comparison with her ever-present
mother formed the construct of traits Maya valued
in self and others. The importance of the loyal
caregiver role was internalized, and Maya devel-
oped a strong sense of self-efficacy. She perceived
that her goals were achievable as long as she put in
the necessary work. She did not, however, develop
a high level of confidence and trust in others, and
believed that others would eventually let her down.
Maya’s impression of the importance of caregiving,
combined with these factors, provided the founda-
tion for her role.
CLINICAL PRACTICE WITH DEMENTIA
CAREGIVER BEREAVEMENT
Establishing Clinical Goals for
Interventions
Addressing ambiguous losses in clinical settings can
prove challenging. The losses are often unnamed,
and the demands of years of caregiving have less-
ened emotional reserves and the ability to handle
new emotional challenges. Understanding demen-
tia caregiver grief as normative and nonpathologi-
cal despite its difference from concrete loss grief is
crucial. As Blandin and Pepin (2017) illustrated,
building resilience through the stages of the DGM
entails understanding the importance of addressing
earlier caregiving ambiguity in grief integration.
Using a DGM lens involves helping people rec-
ognize ambiguity and learn to accept its inevitabil-
ity. Knowledge is power, and by providing both
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caregivers and clinicians with a framework through
which to understand the underlying process of
loss, ambiguity, and reemergence that is inherent
in dementia caregiving means empowering both
groups. Ideally, utilizing this lens means increasing
understanding and awareness of an emotional
experience that can seem nonsensical and unpredict-
able. Even if losses are not labeled as being ambigu-
ous, efforts to identify, tolerate, and normalize
unspoken thoughts can be helpful (Boss, 2010). For
example, many caregivers report feeling relief on the
death of a person with dementia, even though they
often have devoted many years to caring for this per-
son and their well-being. There is both a desire for
them to live and a desire for them to die (Hovland,
2018) so that they no longer suffer. A new aspect of
the person’s personality often may emerge from the
degenerating brain. Parts of the caregiver’s sense of
self may remain or emerge through the process,
whereas once familiar parts may recede. There is an-
ger and rage at the multiple losses, and there is often
love and connection with the vulnerability of care-
taking. Caregivers must learn new ways of attaching
to the parts of self and other that are still present,
grieve the parts that are gone, and realize that life can
continue in a new way (Boss, 2010; Rolland, 2017;
van Wijngaarden et al., 2018).
Helping people realize that life can continue in a
new way involves tapping into the universality of
grief integration and the knowledge that “most
grieving people manage well with coping skills,
support and time” (Supiano et al., 2017, p. 156).
Coping skills and support need to be specific to the
needs of dementia caregivers, both present and for-
mer. An appreciation for the resiliency of dementia
caregivers is essential so that interventions are de-
livered with the knowledge that “the majority of
bereaved dementia caregivers do realize a positive
and adaptive grief process, and return to prior lev-
els of function and socialization” (Supiano et al.,
2017, p. 156). Most caregivers report significantly
fewer depressive symptoms one year after death
than during caregiving (Schulz et al., 2003). Much
as caregivers’ emotional responses to bereavement
are linked to their experiences as caregivers (Anes-
hensel, Botticello, & Yamamoto-Mitani, 2004),
interventions should be connected to these experi-
ences as well.
Scholars have referenced eight possible clinical
goals appropriate for practice when dementia care-
givers experience distress or blocking of grief energy
during the bereavement process: developing new
rituals, supporting normative affirmation, encourag-
ing social support, learning to tolerate ambiguity,
learning about the grief trajectory, understanding
grief in a family context, instilling hope, and discov-
ering meaning and dignity (Aneshensel et al., 2004;
Arruda & Paun, 2017; Boss, 2010; Cutillo-Schmit-
ter, 1996; Dupuis, 2002; Hovland, 2018; Rolland,
2017; Supiano et al., 2017; van Wijngaarden et al.,
2018; Waldrop, 2007). These goals, along with the
intervention of a bereavement support group, mir-
ror the needs of typical, concrete grief integration
but are adapted to the unique experiences of demen-
tia caregivers consistent with the framework of the
DGM.
Developing New Rituals
All cultures have rituals around death, and societies
have long recognized the need to direct the energy
of grief in an adaptive way. Because ambiguous
losses are unnamed and often unacknowledged,
the development of new rituals can be helpful
for grief integration (Boss, 2010; Rolland, 2017).
Providing a normative process in a unique situa-
tion supports the natural resiliency of the mourner.
For example, part of Maya’s routine when she left
work each Friday evening was to go see her
mother and prepare her for the weekend. This act
was one of love and care, and now there was
nowhere to send her unspent love. After her
mother’s death, she found it difficult to not engage
in this activity and felt distressed on Fridays as the
evening approached.
As a bereaved caregiver, Maya was encouraged
to develop a new ritual that acknowledged both
this love and her mother. Rather than focus on her
mother’s environment and on activities to pro-
mote well-being and relaxation in the context of
dementia, Maya began focusing on her own in the
context of grief and her need for comfort and con-
nection. She lit a scented candle that had a positive
sensory memory for her, set aside a particularly soft
blanket that made her feel cozy, and had a weekly
movie night with girlfriends on her couch. Although
these activities were not particularly new to her sepa-
rately, she understood them together in the frame
of directingloving energy toward herself as she had
done for her mother and her mother had done for
her.
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Supporting Normative Affirmation
Social rituals help individuals understand the uni-
versality of grief; in that moment of separation, a
connection to a larger human experience is help-
ful. Normative affirmation can entail providing
supportive reinforcement of an experience as being
expected, reasonable, and similar to the experience
of peers. This is regularly used in most grief work.
People experiencing ambiguous losses benefit from
the same universality but often are unable to find it
in their daily lives. In viewing this through the lens
of the DGM, it can be understood that these norma-
tive affirmations might be of particular importance
when the caregiver is within a liminal state, which
requires tolerating ambiguity. Interventions should
support the idea that it is normal to have difficulty
integrating ambiguous losses. In doing so, clinicians
can assist caregivers move toward a point of reemer-
gence. This was Maya’s experience when she felt
palpable relief after looking around the room and
realizing that no one else knew how to grieve
“correctly” either. In this way, normative affirma-
tion supports grief integration, particularly when
using the lens of the DGM (Boss, 2010; Cutillo-
Schmitter, 1996; Dupuis, 2002; Rolland, 2017).
Encouraging Social Support
Much like normative affirmation, the need for so-
cial support is an extension of a need for connec-
tion following a separation. Most humans are
naturally proximity seeking under distress, and
interventions encouraging adaptive social support
can be highly beneficial. Because the losses of care-
giving are often unnamed, finding one’s peers and
connecting around similar experiences require in-
tention. Just by being in the bereavement group,
the members found their peers and created their
own social connections around shared experien-
ces. Literature supports the idea that social support
is essential in dementia caregiver grief and not only
in concrete grief integration (Aneshensel et al.,
2004; Arruda & Paun, 2017; Boss, 2010; Cutillo-
Schmitter, 1996; Dupuis, 2002; Rolland, 2017;
van Wijngaarden et al., 2018).
Learning to Tolerate Ambiguity
Learning to tolerate the ambiguity itself is a sepa-
rate process (Boss, 2010; Cutillo-Schmitter, 1996;
Rolland, 2017) from understanding the nature of
ambiguous loss. Under stress, people often revert
to a less adaptive method of coping in which the
world, people, or a situation can be understood as
all good or all bad, or feelings are singular rather
than multidimensional. Feelings of anxiety can arise
when both the emotional state and the losses are am-
biguous (Hovland, 2018). Maya learned to tolerate
ambiguity in her realization that, like those of her
peers, her siblings were not all “bad” for being less
involved, and her grief was not “wrong” because it
was not all-encompassing. She realized that when
her mother was alive, she had to focus so heavily on
her mother’s physical care that it made sense that
some of the less clearly defined psychological losses
of connection and relationship were not consciously
processed. Helping caregivers to tolerate ambiguity
and hold the paradox of the person with dementia
being both absent and present is another useful clini-
cal goal (Boss, 2010).
Learning about the Grief Trajectory
Although significant literature supports the need
for psychoeducation in grief, generally greater need
emerges when the grief is ambiguous or related to
dementia caregiving because the trajectories can be
unexpected (Dupuis, 2002; Rolland, 2017). The
more Maya learned about grief and cleared up her
own misperceptions, the more she saw herself as be-
ing part of a larger, more typical human process.
This realization alleviated a great deal of her distress.
Some former caregivers experience feelings of relief
on the death of the person with dementia, whereas
others experience a delayed grief reaction (Waldrop,
2007), so helping caregivers understand what to ex-
pect is crucial in helping them cope.
Understanding Grief in a Family Context
Throughout the experience of dementia caregiv-
ing, family roles often shift, and resentments and
feelings about perceived contributions and emo-
tions of other family members commonly arise.
These shifts and complications continue into the
bereavement period; helping caregivers under-
stand the different ways in which people grieve
and experience the integration of ambiguous losses
can aid in coping with family tensions (Dupuis,
2002; Rolland, 2017). It was meaningful for Maya
to be heavily involved in her mother’s care and diffi-
cult for her to understand why her siblings did not
make the same choice. Similarly, she struggled with
not knowing how to connect to her siblings in their
grief because they did not seem to want to talk and
share stories about their mother as much as she did.
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She used her own lens to try to understand her sib-
lings, and they fell short of her expectations. The
more she learned from the group about the impact
of a family context on grief and different grieving
styles, the better she understood how her siblings
might grieve differently, too.
Instilling Hope
In the context of a terminal illness like dementia
for which there is no cure or even reasonable expec-
tation of stability, caregivers’ experience of hope
may be difficult to achieve. In bereavement, the in-
stillation of hope is related to both the uniqueness
of the grief situation for which there is often limited
social support available and the varying trajectories
of the grief itself. Instilling hope involves a mirroring
intervention so that the person feels “seen” and also
the communication that distress can be lessened so
that the person can cope and know that, like other
bereaved dementia caregivers, they, too, will be OK
(Cutillo-Schmitter, 1996).
Discovering Meaning and Dignity
Particularly for those caregivers like Maya who
have internalized a sense of self-esteem and identity
in the caregiving process, loss of role can mean the
loss of personal meaning and dignity. Bereaved
caregivers often need to discover other ways to at-
tain meaning and dignity following an intense pe-
riod of caregiving as they navigate their own
shifted identities and relationships (Boss, 2010; van
Wijngaarden et al., 2018). This process can be
both painful and empowering. Maya chose to re-
spond to this shift by continuing her identity as a
caregiver in a new way by becoming professionally
involved with older adults and those with demen-
tia.
Using Bereavement Groups as a Clinical
Intervention
Although these goals may be implemented in a va-
riety of settings, bereavement groups specific to
dementia caregivers provide a unique opportunity
to incorporate most or all of them. Groups func-
tion to “facilitate a normal grief process that leads
to integrated grief” (Supiano et al., 2017, p. 157).
People see their own experiences reflected in the
experiences of others, see their own experiences
named and normalized, and develop an adaptive
meaning reconstruction of their experience. Social
ties that help the caregiver to feel cared for are also
important because such support may differentiate
people who improve over time from those who
continue to be distressed (Aneshensel et al., 2004).
Maya’s experience in the bereavement group
involved several of these clinical goals. Coming
to the group itself became a ritual of love and care
for her becauseshe saw it as a way to appropriately
honor her mother by “grieving correctly.” In pur-
suing the group, she also engaged in meaning mak-
ing, redefining the sense of purpose and dignity
stemming from her caregiving. In seeing her own
experience reflected in other group members,
Maya received normative affirmation, social sup-
port, and greater understanding of the grief trajec-
tory. Maya’s relief was palpable the first day that
others in the group reported the same experiences
that she did. In the group process, she became
hopeful that she would be “OK” and whole again
like others with whom she identified, and she also
became hopeful that she could use this growth to
help others like her.
CONCLUSION
No one emerges from the experience of dementia
caregiving exactly as they were before. Whether
their experiences were straightforward or compli-
cated, and whether their relationships were peace-
ful or conflicted, caregivers must go through the
transformative process of adapting to a new reality
and often a shifted identity after caregiving. In
working with this transitioning population, clini-
cians would benefit from an improved understand-
ing of the unique nature of dementia caregiver
bereavement. When ambiguous losses become am-
biguous grief, utilizing specific clinical goals can bet-
ter assist bereaved caregivers in adapting during a
complex process. In doing so, clinicians have the
potential to meaningfully improve the mental health
and quality of life of some of the 15 million family
caregivers in the United States each year (Hovland,
2018). HSW
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ver School of Social Work, New York University, 1 Washing-
ton Square North, New York, NY 10003; e-mail: an768@
nyu.edu. Madeline Rogers, MSW, is assistant research coor-
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Original manuscript received February 20, 2019
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Editorial decision June 18, 2019
Accepted October 29, 2019
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