Introduction & Paun, 2017, p. 845). Likewise, grief experienced

Introduction

Dementia is an illness characterized by loss of cognitive ability (Mccoyd &Walter,
2009, p. 304). There are other symptoms such as depression and behavioural
symptoms (Warchol-Biedermann et al, 2014, p.

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462). The most prevalent neurodegenerative disease within the dementia umbrella
is Alzheimer’s disease (Warchol-Biedermann et al, 2014, p. 462). There are
many losses experienced within the illness, such as, the loss of oneself, loss
of ability, independence, relationship and identity. It affects not only the
individual with the illness but those around them and the caregiver.

Grief is defined as “psychological (emotional, cognitive, functional and
behavioral responses) response to a loss” (Warchol-Biedermann et al, 2014, p. 463). Grief is
an emotional reaction to actual or perceived losses (Arruda
& Paun, 2017, p. 827). The response to the losses can be physical,
emotional and cognitive. On a societal level, grief and bereavement is normally
associated with the loss of a loved one but looking at different types of
losses and grief can help to expand the understandings of experiences, such as
looking at the losses associated with dementia. The grief and loss associated
with dementia is an unique experience because it can be understood as ambiguous
loss (Arruda & Paun, 2017, p. 826). Caregivers see the
progressive loss of cognition and physical independence before the death of the
individual. Thereby, the grieving begins long before the actual passing of the
individual with dementia and it is experienced all throughout the progression
of the illness (Arruda & Paun, 2017, p. 827). These
prolonged losses can contribute to prolonged grief. Evidence has shown that
effects of grief on the caregiver may last 3 years after the death of the
individual with dementia (Arruda & Paun, 2017, p. 845). Likewise, grief
experienced from losses associated with dementia is unique compared to chronic
disease (Arruda & Paun, 2017, p. 844). The main differences are to do with
the prolonged caregiver demands and needs, the progression of illness, the
eventual need for long term care facilities and likelihood of ineligibility for
hospice services (Arruda & Paun, 2017, p. 844). Thereby, increasing the
need for research to the unique experience of grief associated with dementia
and policy changes that support those involved and fill the gaps on all levels.

Caregivers

Overtime, patients
become dependent on their caregivers for care for support in daily living. This
may cause feelings of grief for caregivers as their loved one progressively
declines. Typically, the caregivers are loved ones such as spouses. Providing
care especially in this situation can be exceedingly difficult and affect the
caregivers psychologically, physically and financially, contributing to
psychosocial issues (Mccoyd & Walter, 2009, p. 306). As the care needs of
the individual increases, caregivers devote more and more time, often
sacrificing other aspects of their lives such as professional career (Warchol-Biedermann et al, 2014, p. 466).

Family caregivers have an increased risk of mental health issues and adverse
impacts on wellbeing such as depression and anxiety (Warchol-Biedermann et al, 2014, p. 462). This
relates to caregiver grief.

Not only does the
burden of care cause caregiver grief but also the loss of the relationship with
the patient. Caregiving grief can influence mourning and adjustment post death
as well. Adaptation and adjustment can relate to sociodemographic factors such as
culture. Likewise, the stage of dementia influences the level of grief (Warchol-Biedermann et al, 2014, p.

466). Research by Warchol-Biedermann et al has found that
caregiver grief scores were higher for individuals with more progressive stages
of dementia. Factors contributing to the higher scores may be the deteriorated
communication between the individuals. Furthermore, another factor can be the
realization that there is currently no cure or treatment, thus loved ones
generally may not have hope (Warchol-Biedermann et al, 2014, p. 466). The
experience of caregiver grief is different for adult children in comparison to
spouses. Thereby, factors related to the experience of grief are familial ties
and stages of progression.

The case presentation
about Hal, within the textbook, can help to understand the complexities within
dementia (Mccoyd & Walter, 2009, p. 303-304). Hal retired and was
transitioning into the new stage of his life, when he began to struggle
cognitively. He developed coping strategies, such as carrying scraps of paper
around but eventually he needed complete care for daily living. The case
presentation shows not only the losses Hal was experiencing but also Rachel,
his wife and her sacrifices to meet his care needs (Mccoyd & Walter, 2009,
p. 303-304). Rachel’s caregiver grief impacted her health and well-being as she
sacrificed more of her identity, freedom and social activities (Mccoyd &
Walter, 2009, p. 306). Overtime, she became increasingly isolated and
contributed to depression.

Overall, research on
the common experiences for individuals with dementia and caregivers can better
inform health policies and care protocols and practice. Policy level supports
such as financial and equipment support can help caregivers continuing to
function without increased stress. Education and training programs,
psychoeducational programs may also provide emotional support for grieving
relatives (Mccoyd & Walter, 2009, p. 303).

Gaps

Long term care is
often a strategy for care as the care needs of the individual with dementia
increases past the capacity of the caregiver/s. Currently,
70 percent of those with Alzheimer’s disease, in the United States, will live
in long term care facilities during the later stages of the disease (Arruda
& Paun, 2017, p. 826). Within long term care facilities, there is limited
bereavement support for family members (Arruda & Paun, 2017, p. 826).

Usually, the bereavement formal supports within long term care facilities is a
sympathy card and staff coming to the funeral. There are two types of supports-
formal (health care treatment and intervention) and informal (family, friends) (Arruda & Paun, 2017, p. 843). Lack of support can increase
the likelihood of adverse reactions such as social isolation and loneliness (Arruda & Paun, 2017, p. 844). Studies have shown that
caregivers of individual with dementia that receive support during and after
the illness decreases the likelihood of adverse effects on mental health (Arruda & Paun, 2017, p. 844). This gap shows an area
where institutions and systems can improve to better support caregivers and
family.  

Current gaps within
literature and research are lack of cultural diversity of caregivers
researched, limited use of valid instruments within research, no substantive
research on grieving caregivers whose families pass away in long term care
settings, lack of research on effects of hospice services for caregiver grief
and lack of interventions for caregivers whose family die in long term care (Arruda & Paun, 2017, p. 825). Thereby, further research
could help to inform future micro, mezzo and macro level policy. Along with,
increased research could provide increased knowledge and information on the
caregiver grief phenomenon.

Macro Level- Refining
Ageism to Improve Treatment and Intervention for Patients with Dementia and
Caregivers

The case presentation about Hal touches on how grief associated with
dementia can be described as disenfranchised grief because it is psychic loss (Mccoyd & Walter, 2009,
p. 307). Psychic loss as described earlier as ambiguous loss is the loss of
cognition and physical independence while the individual is still physically
there (Mccoyd & Walter, 2009, p. 307). This disenfranchised grief can added
with societal perspectives that devalue older adults (Mccoyd & Walter, 2009,
p. 307). The additional layer to the losses can create barriers for supports
and services contributing to difficulty treating grief. In this way, dementia can relate to ageism. Ageism refers to the socially
constructed way of thinking about an age group in a stereotyped or negative way
(Iversen, Larsen & Solem, 2009, p.6). Stereotyping the aging process can be
diminishing and led to marginalization of older adults. Old age within the
western context, is a time when an individual loses their independency,
financial stability, health and respect. Issues within
ageism include natural aging, natural memory loss, physical function being lost
and psycho-social issues such as depression and isolation. Older adults are
vulnerable to abuse, and there are ethical dilemmas relating to death, and
ability to decide for self. The experience of dementia with the sense of loss and burden can be
paralleled to the experience of aging within Western society. Likewise, as
macro level improvement occur as does intervention and treatment for those with
dementia and their caregivers.  Although,
there is often decline in many areas, the experience of aging cannot be
generalized or stereotyped.

The societal perspective of
dementia often focuses on the loss and burden but the strengths approach,
family systems and use of self-re-evaluates that perspective by focusing on new
outcomes and growth (McGovern, 2015, p. 409). 
The strength based approach is a way to empower
the client. It is a perspective that suggests that each person has resources to
foster growth regardless of their situation or condition. The client shows
resilience and copes with their circumstance (Lietz, 2009, p. 85). This
approach in social work practice can be used in partnership with other models
to help develop self-confidence. McGovern’s article uses the social work models
of family systems, strengths approach and the use of self to mobilize the
family and the individual affected with dementia to increase the well-being and
quality of life for all those affected (McGovern, 2015, p. 409). The societal
perspective of dementia often focuses on the loss and burden but the strengths
approach re-evaluates that perspective by focusing on new outcomes and
growth. 

New outcomes for the family include personal growth, skill building,
a stronger sense of purpose, and deepened intimacy (McGovern, 2015, p. 415).

The treatments explored by the article include psychosocial therapies such as
support groups, cognitive behaviour treatment and life review. Psychosocial
therapies allow the individual and family system to reach their goals through
their own initiative with collaboration. Essentially, the individual makes
sense of their situation and decides what they want from treatment and how they
will apply it (Lietz, 2009, 85). It is an entirely client based approach. The
strength based approach increases the quality of life and wellbeing of the
family and the individual affected with dementia.

The liberation lens would look towards preservation of dignity when
declining capacity for decision making. Thereby, each service user should be
assessed within their context and not based on a preconceived notion of their
experiences. McGovern’s article directly relates how a social worker can apply
a liberation lens to the social work practice as an individual is faced with
decreasing cognitive capacity. McGovern’s article uses the social work models
of family systems, strengths approach and the use of self to mobilize the
family and the individual affected with dementia to increase the well-being and
quality of life for all those affected (McGovern, 2015, p. 409). Using the
strengths based approach with dementia care can redefine the illness by
suggesting the positive outcomes are obtainable despite difficult circumstances
(McGovern, 2015, p. 418). The approach impacts how dementia is experienced. The
main focus is the present and what remains rather than what is lost.

The societal perspective of dementia often focuses on the loss and
burden but the strengths approach re-evaluates that perspective by focusing on
new outcomes and growth.  New outcomes
for the family include personal growth, skill building, a stronger sense of
purpose, and deepened intimacy (McGovern, 2015, p. 415). The treatments
explored by the article include psychosocial therapies such as support groups,
cognitive behavior treatment and life review. Psychosocial therapies allow the
individual and family system to reach their goals through their own initiative
with collaboration. Essentially, the individual makes sense of their situation
and decides what they want from treatment and how they will apply it (Lietz,
2009, p. 85). It is an entirely client based approach where the client and
family make meaning within their situation. The strength based approach
increases the quality of life and wellbeing of the family and the individual
affected with dementia. Overall, this initiative directly addresses the institutional,
interpersonal and internalized oppression. The initiative addresses the
institutional oppression by addressing the way an agency and a social worker
assesses and would treat dementia, the whole definition of the illness is
challenged. The interpersonal oppression is challenged within the family
structure. The family reinforces the strengths of the service user rather than
making the individual feel they are a burden or helpless. Finally, the
internalized oppression is addressed by building confidence of the individual.

The psychosocial therapies discussed for working with individuals
with dementia and their families are similar to grief theories. There are
similarities around the focus of making meaning within a new reality and
empowerment. This type of intervention for individuals and families with
dementia is commonly seen as grief management for caregivers. It is a grief intervention
focused on empowerment, coping and resilience (MacCourt et al, 2017, p.

230). The grief management theory is developed based from the unique
progression of dementia where caregivers and families are constantly adapting
and coping to new realities (MacCourt et al, 2017, p. 231). Coaching is a
method within grief management theory, where practitioners build on the
capacity of caregivers through education, problem solving and counseling (MacCourt
et al, 2017, p. 233). Caregivers are often grieving while still caring for the
individual with dementia.

Ethics and Social Work Practice

Within the Code of Ethics, ageism can relate to value 1: Respect for
Inherent Dignity and Worth of Persons (CASW, 2005, p.4). Value 1 has to do with
the respect for a client’s self-determination and their worth and
individuality. Thereby, a social worker respects a service user’s right to make
decisions within their capacity and diversity. Within this situation of
cognitive loss, decisions could be made with the service user and the family of
the service user. Treatment within this context would be collaborative,
holistic and contextual to allow the service user to feel liberation from
oppression.

The standards of practice and code of ethics are a general framework
to help guide an ethical practice. Both documents provide standards from which
a social worker would use their informed and sound judgement within the
practice. Sound and informed judgement would require a social worker to look
within themselves to understand their own bias and negative assumptions to
ensure it does not come into their practice in an unethical and inappropriate
way. The overall practice of social work needs an individual to self-reflect.

Furthermore, the entirety of the code of ethics and standards of practice goes
against ageism and isms as a whole. Both advocate for social justice within the
field of social work. In the standards of practice the section “dignity of
clients’ directly relates to ageism (ACSW, 2003, p.26). This section writes
that a social worker will not let stereotypes come into their practice. It is
the responsibility of the social worker to not let their bias or assumptions
interfere with their judgement. A liberation practice is based on equality
where the social worker believes in the inherent dignity of the service user.

The relationship is not hierarchical but where the interests and needs of the
service user are addressed. It is a practice for and by the service user. This
type of practice would go against ageism because ageism disrespects and
diminishes the humanity of a specific age group.

Looking at the social work practice and dementia can parallel a
practice which respects the dignity of older adults and challenge ageism. Not
all older adults will experience cognitive loss but dementia can be
symbolically paralleled to the experience of aging within the western context.

There is a notion that as one ages they are more dependent and less capable but
it is important for an anti-oppressive practice that a social worker looks at
the service user within the context of their situation rather than stereotyping
based on negative bias or assumptions. As well as, if a service user is
experiencing cognitive loss, ethics surrounding self-determination can come
into the practice and the involvement of those close to the service user may be
required. The involvement of the family within the strength based model, family
systems and use of self can help to challenge the institutional, interpersonal
and internalized levels of oppression and led to liberation for the service
user. The use of family can also help decrease the isolation of the service
user by increasing social networks. Overall, ethics within the social work
practice are complex and complicated but the Code of Ethics and Standards of
Practice offer a framework. Ethics require sound and informed judgement, there
is often no clear right or wrong but a social worker should self-reflect and be
aware that negative stereotypes and bias should not come into their practice.

Conclusion

Looking at the topic of grief and loss with individuals with
dementia is an increasingly complex subject. Ageism within society, psychic
loss, disenfranchised loss and ambiguous loss all contribute to the unique
nature of grief and loss for individuals with dementia and caregivers. There is
grief in reaction to many of the losses experienced. Furthermore, not only do
the losses affect the individual with dementia but also the caregiver,
resulting in caregiver grief. As there are gaps within research and long-term
care for grief and loss topics, systemic level ethical foundations and
frameworks can be beneficial. From a macro perspective, looking at ageism and
the societal understanding of aging can help to better inform the overall
systems and thus positively contribute to anti-oppressive care for families and
individuals with dementia. Social work ethics can also be an area to focus on
to help guide and inform interventions.