Running head: DEMENTIA AND END-OF-LIFE CARE 1

Dementia and End-of-Life Care

Crystal Parks

Delaware Technical Community College

NUR 340 Nursing Research

April 30, 2020

Abstract

End-of-life care in any situation is a difficult topic to address in nursing. Physicians are

mandated to ask the question to all patients on admission to an acute care hospital about end-of-

life choices, including DNR status and blood transfusion acceptance. Still, they are not mandated

to discuss end-of-life care choices in a primary setting. What is misinterpreted or unknow to the

families and individuals that in an unpredictable time frame, the person diagnosed with dementia

will forget people’s names, how to eat, how to breathe, and eventually die without being able to

make decisions for themselves. Patients are seen placed in advanced care institutions. They have

no palliative care, end-of-life care directions leaving healthcare to treat invasively for conditions

that would only prolong their life without quality improvement. Handling the palliative care

discussion in this manner does not end happily or in the best interest of the patient. Many

families are reacting in the stressed emotional state, making decisions for their loved ones

momentarily before they die, not processing thoughts of what may be best for the patient.
DEMENTIA AND END-OF-LIFE CARE 3

Dementia and End-of-Life Care

Our population nationally is steadily increasing in age. The American College of

Emergency Physicians states there are more than 40 million Americans over the age of 65, and

our population of 85 years of age and older is growing three times the rate of the American

population. With the increase of older adults, many different health care concerns surfaced for

the healthcare team, family members, caregivers, and individuals themselves. Dementia is one of

the top topics of concern. Overall, dementia shows to be decreasing in older generations but is

predicted to increase as the population increases in age. Unfortunately, dementia is a terminal

illness and not addressed with proper education and understanding amongst healthcare teams,

caregivers, family members, and individuals diagnosed. Without adequate knowledge of

dementia, end-of-life care decisions become difficult.

Problem Statement

Elderly patients do not understand what their choices are and how to make sure they are

upheld when asking them to make end-of-life care choices. Many family members do not want to

discuss end-of-life care choices with their loved ones because they do not want to think of losing

their loved ones. When you add a terminal illness into the equation of the discussion, particularly

dementia, the conversations become even more difficult. These tough decisions then fall in the

hands of healthcare workers, especially physicians and nurses. The question then arises, when do

you advocate for the patient who cannot speak, think for themselves, or are aware of what their

surroundings are from dementia. Are we prolonging life with artificial nutrition, ventilation,

CPR, and intensive, invasive treatments? When are the physicians able to make clear cut

decisions for the best interest of the patient verse what the family feels best without having
DEMENTIA AND END-OF-LIFE CARE 4

multiple lawsuits against them? Where can nursing improve the process through implementing

education sessions for family and diagnosed patients from the first diagnosis of dementia?

Review of Literature

Formal education in palliative and end-of-life care to healthcare workers, families,

caregivers, and individuals will improve the process in end-of-life care choices. Terminal illness

of any nature is a difficult topic for anyone to process. When dementia is the diagnosis, aged

individuals and family members of the loved one do not have the best understanding of what that

diagnosis means. As nurses and physicians address end-of-life care with them, it becomes even

more difficult even hostile at times because individuals feel fine while loved ones see them as

"just getting old with a little memory loss."

To identify supporting information and evidence-based practices, a thorough search of

EBSCO Host through the Cumulative Index to Nursing and Allied Health Literature (CINAHL)

database, the Cochrane Collaboration, and PubMed provided credible, peer-reviewed

information to support these issues. According to not many conversations about end-of-life care,

occur before an acute illness or end-of-life care needs to be implemented. While nurses and

doctors in acute care settings find this problematic, primary physician also find it challenging to

have the discussion immediately following the diagnosis of dementia. Patients do not have the

education or understanding of how the disease process affects them, along with family members

not understanding the choices that will be left for them to make at the last minutes of life.

Nursing now can educate patients and families in the decisions for end-of-life care. Advance

directives and living wills are now available through attorneys, online resources, and through

pastoral care. Doctors are now mandated through evidence-based research to ask all individuals

their wishes for end-of-life care upon admission to the hospital, along with nursing homes asking
DEMENTIA AND END-OF-LIFE CARE 5

individuals or family the same. The most unfortunate finding in evidence-based research was the

nursing home decisions on end-of-life care cannot be continued in the hospital.

In the article "End-of-Life Care of Persons with Dementia," life expectancy is compared

between demented and non-demented people using several longitudinal cohort studies. Two

specific areas of dementia used for the study are Alzheimer's disease and Vascular Dementia.

Causes of death, ethical considerations, and suffering of family members/caregivers are included

in this descriptive, non-experimental study. Dementia individuals of all natures have more

comorbidities than non-demented individuals, including skin breakdown, poor nutrition,

infections, hip fractures, and incontinence are a few. These conditions can increase the severity

and speed up the process of other comorbidities that demented people have, such as diabetes,

heart failure, gait dysfunction, and many more. Dementia patients are more likely to have end-

of-life care treatments different from any other patients. In a retrospective study, they compared

demented and metastatic cancer patients reveling 41 % of cancer patients received noninvasive

diagnostic tests versus the 13 % of demented patients. 65 % of demented patients received

enteral tube feeding and antibiotics than the 45% of cancer patients (Michel et al., 2002, p.642).

The most disturbing of findings is most treatments for demented patients versus non-demented

patients like tube feedings, antibiotics for infections, and movement to prevent pressure sores go

unrecognized by the demented patient. Most often, the patients do not understand what is

happening, why the care they are receiving is completed, and suffer from underreported pain.

In a qualitative triangulation interview study of three Danish nursing homes, interview questions

regarding medications, decision making, communication with families, residents, and doctors,

along with education, were asked in a semi-structured approach. Physicians, nurses, patient care

assistants, and family members all included in the interviews. The interviews were transcribed,
DEMENTIA AND END-OF-LIFE CARE 6

then proofread by the authors (Gorlen et al., 2013, p.2). All three nursing homes consisted of

different levels of formal education, including nurses, patient care assistants, and family

members, regarding palliative care. Nurses from all three Danish nursing homes stated protocol

medication orders, mainly for end of life pain control, helped nurses care for their patients more

efficiently versus calling the physician for pain medication orders frequently. Nursing also stated

family members and patients preferred the subcutaneous route of medication delivery versus

suppositories. Education also has a highly common consensus among caregivers and family

members.

Many of the families and caregivers stated with more specific education they received

regarding palliative care and end-of-life choices; they would have been more comfortable to

support their loved one's wishes along with making different choices for them as needed. Two of

the most challenging responses in this study were the questions answered about decision making

and communication. Decision-making results varied among the different groups. Nursing and

nursing assistants voiced that the earlier end-of-life care planned, particularly while the residents

were able to communicate their wishes, the better end-of-life care delivered. Physicians also

stated the earlier they are aware of the resident's or family member's wishes regarding end-of-life

care, the better care plan they can implement for the resident. All end-of-life care wishes must be

in writing for the physicians to implement for the patient's care plan, or the physicians must

follow regulatory laws making them a full resuscitation. Of all the areas inquired,

communication was the leading controversy. Nurses reported communication difficulties among

doctors and family members. Most often, residents want to talk about end-of-life care, but family

members refuse to address or listen to the decisions wanted. They also stated that having

returned phone calls and receiving proper written orders from physicians is frustrating and
DEMENTIA AND END-OF-LIFE CARE 7

challenging. Physicians are reluctant to make clear cut pathways for palliative care in fear of

retaliation involving lawsuits generated from family members. According to Gorlen et al., the

most crucial turning point in improving and understanding end-of-life care for all

multidisciplinary team members, including families and residents, is more knowledge and

education in palliative end-of-life care.

Analysis

Each area of research utilized for this review seemed to have a general place in common.

The lack of formal education of dementia to individuals diagnosed with the terminal disease

while including family members leaves most to belief, they have plenty of time to think about

their choices. Undereducation in palliative care for physicians, nurses, family members, and

individuals allows for the end-of-life care process addressed during an acute exacerbation of

dementia. Physicians, nurses, and family members agreed the end-of-life process needs to be

addressed from the beginning of the disease and include formal education.

Recommendations

End-of-life care discussions need to happen directly in the office with the physician and

family support to the individual at first diagnosis. Stricter laws protecting physicians from

carrying out the last wishes of terminally ill patients with dementia who present with a legal

living will and not have to confer with the family to protect their license. When a patient has

taken the time to implement their dying wishes, healthcare workers should be able to help the

patient die with dignity and to their specifications as listed in the living will. Nursing will be

available to help direct family members and patients to the proper resources to obtain living wills

and will be available to hold educational sessions in palliative care. Nursing should be able to
DEMENTIA AND END-OF-LIFE CARE 8

advocate for their patients and have end-of-life care protocol orders from physicians to treat

patients appropriately to their wishes.

Conclusion

The purpose of this paper is to identify ways that nursing care and interventions directly

impact dementia patients in end-of-life care. In identifying areas where nursing staff directly are

involved with dementia patients and end-of-life care, we can directly have an impact on

improving the process. Offering formal educational sessions to individuals diagnoses with

dementia along with family members, including palliative care choices, will help the families

make better-informed decisions. While the focus has been mainly on the families, nursing and

physicians also improve their understanding of end-of-life laws, guidelines, and information by

attending formal educational seminars improving the process for all involved. Obtaining and

upholding the individual's end-of-life care wishes is the most important in nursing, helping our

patients die with dignity and respect.

References

Armstrong, M. J., Alliance, S., Taylor, A., Corsentino, P., & Galvin, J. E. (2019). End-of-

life experiences in dementia with Lewy bodies: Qualitative interviews with former

caregivers. PLOS ONE, 14(5), e0217039. doi: 10.1371/journal.pone.0217039

Cohen, C. J., Auslander, G., & Chen, Y. (2010). Family caregiving to hospitalized end-of-

life and acutely ill geriatric patients. Journal of Gerontological Nursing, 36(8), 42-

50. doi:10.3928/00989134-20100330-03

Davies, N., Mathew, R., Wilcock, J., Manthorpe, J., Sampson, E. L., Lamahewa, K., &

Iliffe, S. (2016). A Co-design process developing heuristics for practitioners

providing end of life care for people with dementia. BMC Palliative Care, 15(1).

doi:10.1186/s12904-016-0146-z

Langford, R., & Young, A. (2013). Making a difference with nursing research. Prentice

Hall.

Martinsson, L., Lundström, S., & Sundelöf, J. (2018). Quality of end-of-life care in

patients with dementia compared to patients with cancer: A population-based

register study. PLOS ONE, 13(7), e0201051. doi: 10.1371/journal.pone.0201051

Moore, K. J., Candy, B., Davis, S., Gola, A., Harrington, J., Kupeli, N., … Vickerstaff, V.

(2017). Implementing the compassion intervention, a model for integrated care for

people with advanced dementia towards the end of life in nursing homes: A

naturalistic feasibility study. BMJ Open, 7(6), e015515. doi:10.1136/bmjopen-

2016-015515

(n.d.). Retrieved from https://www.nationalcoalitionhpc.org/wp-

content/uploads/2018/10/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf
DEMENTIA AND END-OF-LIFE CARE 10

Tan, T., & Cheang, F. (2016). A single-center retrospective analysis of interventions

provided to geriatric inpatients receiving end-of-life care. Progress in Palliative

Care, 24(6), 332-338. doi:10.1080/09699260.2016.1188521