A Literature Review on Healthcare Decisions for Patients with Dementia

This literature review synthesizes scholarly works from 2014-2019 to address the question of whether dementia patients should be involved in healthcare decisions. It analyzes arguments for and against patient inclusion, considering factors like cognitive capacity, potential for improved outcomes, and ethical considerations. The review examines studies by Darby and Dickerson (2017), Hamdy, Depelteau, and Kendal-Wilson (2017), Hauserer et al. (2015), Miller, Whitlatch, and Lyons (2016), and others, to explore the impact of dementia on decision-making abilities. While some research suggests that involving patients can improve outcomes and reduce costs, other studies highlight the challenges posed by cognitive impairment and the potential for confusion. The review concludes that, as the disease progresses, the responsibility for healthcare decisions should primarily rest with caregivers and families, although patient mental ability should be assessed.

Running head: HEALTHCARE DECISIONS 1
Healthcare Decisions for Patients with Dementia
Student’s Name
Institutional Affiliation

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Healthcare Decisions for Patients with Dementia
This literature review is a synthesis of previous scholarly works on the topic. This
literature review takes into consideration several articles which seek to answer the question,
"Should a person living with dementia be involved in decision making regarding their
healthcare?" The journal articles chosen for this purpose have been written from 2014 – 2019.
Overall, this literature review provides detailed and well-synthesized arguments that seek to
answer the question.
Darby and Dickerson (2017) assessed the decision-making capacity of dementia patients
in their study. They found out that Dementia is a medical and clinical condition characterized by
a gradual memory loss leading to the inability of the patient to take care of themselves. They
determined the adverse effects Dementia has on an individual's cognitive processes like
behavior, language, memory, executive functions, and decision making. Therefore, the
deterioration of their mental capacity significantly affects their personality in a great way.
According to Hamdy, Depelteau, and Kendal-Wilson (2017), "dementia patients are
unpredictable in a way that they are not aware when catastrophic reactions occur."
Following the adverse mental issues affecting the personality of dementia patients,
numerous laws have been enacted to incorporate dementia patients in making decisions
concerning their healthcare. However, substantial proof links patients with Dementia to their
non-involvement in making decisions. Smebye, Kirkevold, and Engedal (2012) observed that
while some patient does not wish to be part of making decisions, others have the will but are
denied opportunities to participate. This review analyses the current literature regarding the

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arguments for or against the inclusion of dementia patients concerning decision making and
comes up with a valid conclusion on whether or not they should be included in decision making.
A study by Hauserer et al. (2015) determined the significance of involving patients with
Dementia in making decisions, especially concerning their healthcare. According to the study,
the involvement of the patients in decision making significantly improves outcomes by
enhancing the confidence of the patient on the decisions arrived at. Inclusive decision making is
essential for the treatment of chronic infections like Dementia, and the decisions made are
significant to the patient’s life. The findings of this study correspond to Smebye et al. (2012),
who asserts that even though dementia patients are viewed incompetent in making their own
decisions. However, involving them is crucial. The study explains that these patients might have
some "retained cognitive abilities which can enable them to make some informed decisions."
According to Miller, Whitlatch, and Lyons (2016), physicians have a significant role in assessing
the extent of the symptoms such as language difficulties, memory loss, diminished mental
ability, and slow processing speed, before determining whether or not the patient can cooperate
in decision making.
Vahdat et al. (2014) investigated the relationship between shared decision making and
patient outcomes. The found out that the inclusion of dementia patients in the decision in shared
decision making improved not only patient outcomes but also reduced medical costs.
Traditionally, it has been known for a fact that decision-making processes incur high costs and
contribute to poor patient outcomes because patients may be misdiagnosed (Rozzini et al., 2010).
Therefore, the values and preferences of patients will help cut down unnecessary costs, thereby
improve outcomes.

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A study by Coulter et al. (2012) investigated the effect of excluding dementia patients
from decision making about their health. The findings of the study showed increased distress,
anger, and frustration among the excluded patients, ultimately worsening their health conditions.
Furthermore, Smebye, Kirkeyold, and Engedal (2012) in their investigation determined that the
exclusion increased “distress, anger, and frustration thereby worsening the condition of the
patient and rendering them more incapacitated." Frustration and anger are natural, and almost
automatic responses elicited by individuals following ejection or loss. This is true with dementia
patients who always express their denial or anger through their actions. Often, anger manifests as
a result of rejection (Miller, Whitlatch & Lyons, 2016). However, this can be curbed. Coulter et
al. (2012) recommend that decisions regarding management packages, treatment methods, and
support should incorporate patients and caregivers. Incorporating people living with a condition
in choices is viewed as an ethical practice.
Hamdy (2017) studied the effect of incorporating dementia patients in decision making.
According to their study, dementia patients get much confused with many decisions resulting in
poor decisions making. Further, the study determines that “dementia affects one’s ability to
retain enough information in their working memory." As a result, such patients become
overwhelmed when faced with many decisions to make, resulting in uninformed decisions.
Capacity Australia (2016) recommends that a thorough capacity assessment should be conducted
on dementia patients to determine their ability to make decisions and meet the inclusion criteria.
Dementia adversely affects impacts the capacity of patients to make and communicate a
decision. The report, therefore, suggests that their capacity cannot be generalized from one
decision to another. Given Dementia slowly reduces the speed at which information is processed;
every decision varies depending on its complexity. For this reason, it is safe to allow them to

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make decisions they can manage within short periods. The family and caregivers should only be
limited to making decisions concerning their healthcare.
Increasing patient involvement in making decisions on their healthcare escalates medical
costs. A study by Hedge and Ellajosyula (2016) found out that involving patients in making
decisions increases unnecessary procedures which only increases costs. With the many financial
constraints facing healthcare institutions, this becomes an impossibility. Further, the study
determined that apart from rising costs, it wastes a lot of time before decisions are arrived at.
This study agrees with an investigation by Rozzini et al. (2010) which highlighted the mental
incapacity of dementia patients rendering them unable to make quick decisions. Capacity
Australia (2016) recommends cognitive testing to determine the patient’s mental state before
making decisions. This involves cognitive testing of patients for executive decisions which takes
time. Although Hedge and Ellajosyula’s (2016) research delved on hospital costs, it could not
link decisions which are shared with escalated medical costs for dementia patients in homes and
care shelters. Hedge and Ellajosyula’s conclusions do not agree with Vahdat et al. (2014)
conclusions that involving patients in making decisions reduces costs. Also, the outcomes
disagree with Armstrong et al. (2016), whose conclusions linked shared decision making and
reduced medical expenses.
Patients with Dementia cannot be trusted to make medical decisions (Scheurer,
2013). This is because they lack a significant capacity to make decisions due
to mental loss. Much as it is uncommon for patients to be completely unable
to make decisions, healthcare decisions need high mental capacity patients
with dementia lack. Scheurer (2013), in his study, likened dementia patients
to those in a coma because of their lower cognitive abilities. For them to

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qualify to get involved in decision making, a thorough assessment should be
conducted on their ability to make critical decisions. However, most patients
fail cognitive assessment tests (Scheurer, 2013). This is in tandem with
conclusions from Capacity Australia (2016) report which saw the significance
of capacity assessment of patients. Such decisions include decisions on
personal health, finance, and family. Since families living with dementia
patients may lack the necessary assessment skills, the patients must be
excluded in decision making.
Tible, Riese, Savaskan, and Von Gunten (2017) studied the best practices to manage
psychological disorders. In their research, they realized the need to assist dementia patients with
decision making regarding their health. Their study determined that each dementia stage has
symptoms which incapacitate the patient. The findings of this study correspond to Rozzini et al.
(2010) study, which also highlighted several signs at different stages. For instance, they link
hallucinations, depression, agitation, and delusions to varying stages of Dementia. Therefore,
patients with Dementia don't even understand themselves. Thus, involving them in making
decisions may not help. Instead, it will trigger them to produce a more volatile response.
Conclusion
This review of literature has shown that dementia patients should get involved in making
decisions concerning their healthcare. Their involvement improves their outcomes, as seen in a
study by Hauser et al. (2015). It also enhances the satisfaction of patients and levels of
confidence in the type of decisions arrived at (Coulter et al., 2011). Further, victims and
caregivers have the potential of increased living status.

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Despite clear evidence, other works strongly oppose the credibility of these conclusions.
Tible et al. (2017) have shown that mental incapacity of dementia patients, and the level of
inability increases with the stage of the disorder. Further, it is difficult to trust dementia patients
to come up with well-thought decisions concerning their health (Scheurer, 2013). Finally,
Hamdy (2017) asserts that many decisions confuse dementia patients; thus, they can make poor
decisions. However, Hamdy's findings fail to explain whether the decisions he talks about
regarding to medical or life choices.
Overall, I opine that dementia patients should be relieved from making significant
deliberations about their healthcare. As the disease advances, so does their ability to make
important decisions. Therefore, the responsibility to make such important decisions should
remain with caregivers and the family. However, patients should be tested to determine their
mental ability.

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