End-of-Life Dementia Care: A Literature Review and Summary Table

This literature review presents a summary table analyzing various studies related to end-of-life dementia care and family perceptions. It examines research articles employing RCTs, non-randomized controlled trials, mixed-method approaches, and prospective studies conducted in nursing homes and palliative care settings. The review highlights key findings, such as the effectiveness of facilitated case conferencing and the Capabilities Model of Dementia Care, the importance of trust in nursing staff, and the impact of understanding dementia's terminal nature on patient comfort. Observable measures, limitations, and evidence quality levels are also discussed, providing a comprehensive overview of the current understanding of family perspectives in end-of-life dementia care.

Running head: SUMMARY TABLE
Dementia
Name of the Student
Name of the University
Author Note

1SUMMARY TABLE
EBP Question: How does the family perceive end-of-life dementia care?
Student:
Article Number Author and Date Evidence Type Sample, Sample
Size, Setting
Findings That Help
Answer the EBP
Question
Observable Measures Limitations Evidence Level,
Quality
1 Agar et al., (2017) RCT n=10, 20 Australian
nursing homes,
palliative care
setting
Facilitated case
conferencing (FCC)
proves better
effective in palliative
care for advanced
dementia patients.
Family-rated quality of
end-of-life care (End-
of-Life Dementia
[EOLD] Scales);
resident quality of life
(Quality of Life in
Late-stage Dementia
[QUALID]); nurse-
rated EOLD scales;
quality of care
Low mortality rate of
46%; no distinction
between mortality due to
any comorbid condition
and dementia
Level I
2. Moyle et al., (2016) Non-randomised
controlled trial
81 staff, 48 family
members; 4 long-
term care centres
CMDC (Capabilities
Model of Dementia
Care) was proved as
an operative
approach of
dementia care, in
comparison to usual
long-term services
Quality of Life –
Alzheimer’s Disease
questionnaire (QOL-
AD), Staff Experiences
of Working with
Demented Residents
questionnaire
(SEWDR)
Small sample size; Lack
of representativeness of
the sample; assessment
via proxy accounts; no
measurement of possible
covariates
Level II
3. Powers & Watson,
(2008)
Mixed method
(qualitative field
research and
quantitative
retrospective chart
analysis)
3 nonprofit urban
NHs located in New
York upstate
(bedsize 150-500).
Course of the
residents varied
between comfort and
curative care, with
an obvious upsurge
in symptoms before
their death
Symptoms
experienced;
interventions; factors
affecting EOL care
Inadequate sample size;
high quality NH selection
Level II-2
4. Rosemond, Hanson
& Zimmerman,
(2017)
Qualitative study n= 16; NH residents
aged more than 65
years
Amid family
members of
individuals who
lately died due to
dementia in the NHs,
words of trust in the
nursing staff were
intensely associated
to acuities of choice
making about care
goals
Interview focused on
experiences with the
goals of care related
decision making
Small sample size Level III
5. Van der Steen et al.,
(2013)
Prospective cohort
study
372 nursing homes
patients; 28
healthcare facilities
in the Netherlands
Awareness on
terminal type of
dementia improves
comfort of patients
at end of their life
comprehension of
complications;
perception of
dementia; prognosis
understanding;
counselling
Based on earlier
prospective research;
perception measured
before patient comfort;
quality of relationship not
measured
Level II-2
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2SUMMARY TABLE
References
Agar, M., Luckett, T., Luscombe, G., Phillips, J., Beattie, E., Pond, D., et al. (2017) Effects of facilitated family case conferencing for
advanced dementia: A cluster randomized clinical trial. PLoSONE 12(8): e0181020.
Moyle, W., Venturato, L., Cooke, M., Murfield, J., Griffiths, S., Hughes, J., & Wolf, N. (2016). Evaluating the capabilities model of
dementia care: A non-randomized controlled trial exploring resident quality of life and care staff attitudes and experiences.
International Psychogeriatrics, 28(7), 1091–1100.
Powers, B.A. & Watson, N.M. (2008). Meaning and practice of palliative care for nursing home residents with dementia at end of life.
American Journal of Alzheimer’s Disease & Other Dementias, 23(4), 319-325.
Rosemond, C., Hanson, L.C., & Zimmerman, S. (2017). Goals of Care or Goals of Trust? How Family Members Perceive Goals for
Dying Nursing Home Residents. Journal of Palliative Medicine, 20(4), 360-365.
Van der Steen, J.T., Onwuteaka-Philipsen, B.D., Knol, D.L., Ribbe, M.W., & Deliens,L. (2013). Caregivers’ understanding of
dementia predicts patients’ comfort at death: A prospective observational study. BMC Medicine, 11: 105.
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