https://doi.org/10.14528/snr.2024.58.1.3247
2024. Obzornik zdravstvene nege, 58(1), pp. 18–27.
Keywords: advance directive; 
palliative care; empowerment; 
dignity
Ključne besede: vnaprejšnja 
direktiva; paliativna oskrba; 
opolnomočenje; dostojanstvo.
1 Retirement home Šentjur, 
Svetinova ulica 1, 3230 Šentjur, 
Slovenia
2 Alma Mater Europaea-ECM, 
Slovenska 17, 2000 Maribor, 
Slovenia
* Corresponding author/
Korespondenčni avtor:  
suzana.kostomaj@almamater.si
Review article/Pregledni znanstveni članek 
Impact of advance care planning for older adults with dementia in nursing 
homes: A literature review
Učinek vnaprejšnjega načrtovanja oskrbe starejših odraslih z demenco v domovih 
starejših: pregled literature
Suzana Koštomaj1, 2, *
Received/Prejeto: 1. 6. 2023
Accepted/Sprejeto: 21. 10. 2023
© 2024 Avtorji/The Authors. Izdaja Zbornica zdravstvene in babiške nege Slovenije - Zveza strokovnih društev 
medicinskih sester, babic in zdravstvenih tehnikov Slovenije./Published by Nurses and Midwives Association 
of Slovenia. To je članek z odprtim dostopom z licenco CC BY-NC-ND 4.0./This is an open access article 
under the CC BY-NC-ND 4.0 license.
ABSTRACT
Introduction: Advance care planning is a very important challenge in the field of palliative and hospice 
care. The aim of this study was to review empirical evidence on the effectiveness of advance care planning in 
palliative and hospice care for older adults with dementia, focusing on nursing home residents. 
Methods: The literature search was conducted in the PubMed, ScienceDirect and Scopus databases. The 
search terms included "advance care planning," "dementia," "palliative care," and "nursing home." The review 
included quantitative, qualitative and mixed-methods studies focussing on advance care planning for older 
adults with dementia published in English up to 2023. A narrative synthesis approach was used. 
Results: The review included a total of 10 studies. We identified two distinct concepts: advance care planning 
and empowerment of older adults with dementia. 
Discussion and conclusion: Our literature review revealed a clear relationship between the preferences 
expressed by older adults with dementia concerning their end-of-life care, their will to live and desire for less 
emotional distress at the end of life. Future research should employ a multidisciplinary approach to investigate 
the long-term impact and financial aspects of timely implementation of advance care planning, as well as 
appropriate strategies to empower its providers.
IZVLEČEK
Uvod: Vnaprejšnje načrtovanje oskrbe je za področje paliativne in hopsic oskrbe zelo pomemben izziv. Namen 
prispevka je bil pregledati empirične dokaze v zvezi z učinkovitostjo vnaprejšnjega načrtovanja paliativne in 
hospic oskrbe starejših odraslih z demenco s poudarkom na bivanju v domovih starejših.
Metode: Pregled literature je potekal v PubMed, ScienceDirect in Scopus. Iskalni nizi so zajemali: »vnaprejšnje 
načrtovanje oskrbe«, »demenca«, »paliativna oskrba«, »dom starejših«. Pregled vključuje kvantitativne, 
kvalitativne in raziskave mešanih metod o načrtovanju vnaprejšnje oskrbe za starejše odrasle z demenco, 
objavjene do 2023 angleškem jeziku. Uporabljena je bila narativna sinteza.
Rezultati: V analizo je bilo vključenih 10 razsikav. Identificirali smo dva koncepta: koncept načrtovanja 
napredne oskrbe in koncept opolnomočenja starejših odraslih z demenco.
Diskusija in zaključek: Pregled literature kaže na jasno povezavo med izraženimi preferencami starejših 
odraslih z demenco glede zdravljenja ob koncu življenja, volje do življenja in umiranja z manj čustvene stiske. 
Nadaljnje raziskave se bi morale osredotočiti na dolgoročne učinke pravočasnega izvajanja vnaprejšnjega 
načrtovanja oskrbe, opolnomočenje izvajalcev, multidisciplinarni pristop in finančne vidike izvajanja 
vnaprejšnjega načrtovanja oskrbe.
19Koštomaj, S., (2024)/Obzornik zdravstvene nege, 58(1), pp. 18–27.
Introduction
One of the most important issues affecting the 
public health system is the global shift towards an 
ageing population (Fang et al., 2020). As a result, a 
growing number of people will require palliative care 
that adequately addresses and meets their needs (Van 
den Block et al., 2020), thereby improving the quality 
of life for people with chronic or terminal diseases. 
Ageing is undoubtedly the primary contributor to a 
wide range of chronic diseases associated with poorer 
quality of life in older adults (Fang et al., 2020). In 
order to improve the accessibility of palliative care, we 
must first examine and evaluate the level of need in 
society (Etkind et al., 2017). The main challenges many 
countries face in relation to older adults include frailty, 
sarcopenia, neurodegenerative diseases, uncurable 
chronic conditions, cardiovascular diseases, mental 
health disorders, etc. (Fang et al., 2020). 
As a progressive neurodegenerative chronic disease 
with an average survival time of 7–10 years (World Health 
Organisation, 2021), dementia is undoubtedly one of the 
most significant challenges for palliative care in social 
care institutions. Currently, there are approximately 55 
million people living with dementia worldwide and this 
number is projected to increase to 131.5 million by 2050 
(World Health Organisation, 2021). Providing adequate 
care to a growing number of older adults with dementia 
is therefore of immense clinical and public health 
importance (Walsh et al., 2021). 
It should be noted that modern end-of-life care 
is not feasible without high-quality advance care 
planning (ACP), as such planning helps older adults 
with dementia to express their preferences regarding 
treatment and care (Konno et al., 2020). In this context, 
the spiritual aspect of palliative care is equally important. 
Spiritual care or spiritual interaction between the nurse 
and the older adult with dementia hinges on the nurse's 
ability to listen and build a quality relationship with the 
nursing home resident, i.e. to recognise and nurture the 
true essence of their experience, a skill that is central to 
advance care planning palliative care (Haugan, 2022).
Although the beginnings of advance care planning 
can be traced back to 1960, an extremely important 
turning point occurred in 1990 when the Patient Self-
Determination Act was passed in the USA (Brown, 
2003). Advance care planning makes it possible to 
document the wishes of a person with dementia 
regarding their treatment and care for the time when 
they may no longer be able to express such wishes 
or make decisions. We can therefore define advance 
care planning as an ongoing process that enables 
individuals to make decisions about their future 
health care before they lose the capacity to do so. 
This includes various measures such as discussing 
end-of-life care with relatives or healthcare providers, 
appointing a proxy decision-maker and completing or 
revising an advance directive (Rietjens et al., 2017).
The benefits of advance care planning, underpinned 
by rigorous formal training, are recognised as a 
foundation for end-of-life care (Fulmer et al., 2018). 
A systematic review of 113 studies conducted by 
Brinkman-Stoppelenburg et al. in 2014 outlines the 
outcomes of effective advance care planning. These 
include consistency between the wishes of terminally 
ill older adults and the end-of-life care provided, 
the appropriateness of medical care, the location of 
end-of-life care, and the place of death (hospital, 
hospice, nursing home, home). The use of advance 
care planning improves end-of-life care (O'Halloran 
et al., 2020). However, refining advance care planning 
for older people with dementia requires additional 
knowledge and skills on the part of its implementers.
For this reason, lack of formal knowledge or 
educational preparation for advance care planning 
represents an extremely important barrier (Fulmer et 
al., 2018). Among health professionals, understanding 
of dementia as a palliative condition and cause of death 
remains limited, as does awareness of advance care 
planning (Tilburgs et al., 2018). Compared to palliative 
care for older cancer patients, the provision of services 
(including advance care planning) for older adults with 
dementia in social care institutions worldwide is notably 
inadequate (Walsh et al., 2021).
Advance care planning presents a significant 
challenge for palliative care, particularly for older 
adults with dementia who are anticipated to experience 
significant cognitive decline and difficulty or inability 
to express their will and decisions regarding end-of-
life care. One of the greatest challenges in advance care 
planning is the difficulty to accurately predict disease 
progression and end-of-life care needs. Moreover, 
communication barriers that may arise between older 
adults with dementia and their caregivers or healthcare 
providers add to the complexity of the situation.
Aims and objectives
The objective of this literature review was to analyse 
empirical evidence on the barriers, facilitators, and 
effectiveness of advance care planning in palliative 
care for older adults with dementia, focusing on 
nursing home residents. 
Research questions:
− What is the impact of advance care planning on end-
of-life outcomes for older adults with dementia?
− What are the barriers and facilitators of advance 
care planning for older adults with dementia, their 
families and caregivers?
Methods
Review methods
We adopted a literature review approach to elucidate 
the effectiveness of advance care planning in palliative 
20 Koštomaj, S., (2024)/Obzornik zdravstvene nege, 58(1), pp. 18–27.
and hospice care for older adults with dementia, focusing 
specifically on nursing home residents. Our method 
of analysis involved a detailed examination of sources, 
and our method of compilation entailed a synthesis and 
summary of findings from a broader body of literature. 
The literature review followed the PRISMA (Preferred 
Reporting Items for Systematic Reviews and Meta-
Analyses) guidelines as specified by Page et al. (2021).
In order to identify papers that would be beneficial 
for answering our research question, we developed 
a careful search strategy using both direct and 
indirect synonyms for our target terms. The search 
terms included "advance care planning," "dementia," 
"palliative care," and "nursing home." The Boolean 
operators "AND" and "OR" were used to construct 
the search string so as to ensure precise and inclusive 
retrieval of relevant studies. The search strings or 
keywords used are listed in Table 1.
The search was conducted in international 
databases, namely PubMed, Scopus and ScienceDirect 
(Elsevier). In addition, certain search limitations were 
implemented, specifically targeting research papers 
published in English up to 2023.
The inclusion criteria for this literature review 
were as follows: 1) Studies involving older adults 
over 65 years of age conducted within nursing home 
settings. 2) Studies specifically addressing advance 
care planning in the context of older adults living 
with dementia (encompassing different types of 
dementia, such as Alzheimer's disease, dementia with 
Lewy bodies, vascular dementia, and frontotemporal 
dementia, etc.). 3) Studies exploring interventions or 
strategies aimed at improving the understanding of 
the barriers and facilitators of advance care planning.
The exclusion criteria were: 1) Studies involving 
individuals under 65 years of age and conducted in 
settings other than nursing homes. 2) Studies not 
specifically addressing advance care planning in the 
context of palliative and hospice care for older adults 
with dementia. 3) Studies focusing exclusively on non-
dementia-related conditions. 4) Studies not addressing 
advance care planning interventions or strategies, or 
barriers or facilitators of advance care planning.
Results of the review
Our literature search included a review of the 
PubMed (117), Scopus (133) and ScienceDirect (87) 
databases. After the search, all relevant articles were 
imported into the Zotero application, and all duplicates 
were removed. The results of our search are shown in 
the PRISMA diagram (Page et al., 2021) in Figure 1.
Quality assessment of the review and description 
of data processing
Each published study was reviewed by the author for 
methodological quality. The Mixed Methods Appraisal 
Tool (MMAT) was used to evaluate the quality of the 
studies. The MMAT comprises methodological quality 
criteria for the evaluation of quantitative, qualitative 
and mixed methods studies. These criteria are scored 
on a nominal scale (Yes, No, Can't tell) and allow 
the assessment of five main types of studies, namely 
qualitative studies, randomised controlled trials, 
non-randomised quantitative studies, quantitative 
descriptive studies, and mixed-method research (Hong 
et al., 2018). The MMAT classification generates five 
levels of methodological quality, as proposed by Hong 
et al. (2018). The criteria for methodological quality of 
the different types of studies are listed in Table 2.
In the first phase, the author performed data 
extraction from the selected papers, following a 
predetermined set of data extraction criteria. These 
criteria included essential elements such as author's 
name, year of publication, country, research design, 
research aims and objectives, sample characteristics, 
and main findings. During the data collection and 
synthesis phase, the author followed the guidelines for 
narrative synthesis proposed by Popay et al. (2006). 
Results
A total of 10 studies that met the inclusion and 
exclusion criteria were selected for review Mitchell et 
al., 2003; Gozalo et al., 2011; Livingston et al., 2013; 
Nicholas et al., 2014; Vandervoort et al., 2014; Garden 
Table 1: Search terms
Tabela 1: Iskalni nizi
Database/Baza podatkov Search terms/Ključne besede
Scopus "advance care plan*" OR "advance directive" OR "advance decision*" OR "living will" OR "end 
of life decision*" OR "end-of-life decision*") AND (dementia OR “cognitive impairment" OR 
Alzheimer* AND "palliative care*" AND dignity AND "nursing home*"
PubMed ("palliative care"[MeSH Terms] OR (palliative[All Fields] AND care[All Fields]) OR "palliative care"[All 
Fields]) AND (("advance care planning"[MeSH Terms] OR (advance[All Fields] AND care[All Fields] 
AND planning[All Fields]) OR "advance care planning"[All Fields]) AND (dementia[MeSH Terms] 
OR dementia[All Fields] OR dementias[All Fields] OR "dementia s"[All Fields]) AND ("nursing 
homes"[MeSH Terms] OR (nursing[All Fields] AND homes[All Fields]) OR "nursing homes"[All Fields] 
OR (nursing[All Fields] AND home[All Fields]) OR "nursing home"[All Fields]))
ScienceDirect ("advance care plan" OR "advance directive") AND (dementia OR "cognitive impairment") AND 
"palliative care" AND "nursing home" AND dignity
21Koštomaj, S., (2024)/Obzornik zdravstvene nege, 58(1), pp. 18–27.
et al., 2016; Brazil et al., 2018; Cohen et al., 2019; Lall 
et al., 2021; Handley et al., 2022). The majority of 
these studies were conducted in the United States of 
America (USA) (4), followed by the United Kingdom 
(UK) (2), Belgium (1), Asia (1), UK & Australia (1) 
and Ireland (1). 
The selected studies focused on the following:
‒ the effectiveness of advance care planning (healthcare 
utilisation, quality of life, economic outcomes, and 
satisfaction with nursing and care), and 
‒ the facilitators and barriers to advance care planning 
(time constraints, knowledge gaps).
The characteristics of the studies included in the 
review are presented in Table 2. The studies examined a 
range of advance care planning interventions, including 
written advance planning, different types of end-of-life 
discussions, and different staff training interventions. Six 
studies examined advance care planning implemented 
with an older adult with dementia prior to the loss 
of agency or decision-making capacity (Livingston 
et al., 2013; Nicholas et al., 2014; Vandervoort et al., 
2014; Brazil et al., 2018; Cohen et al., 2019; Lall et al., 
2021). Three studies focused on advance care planning 
in the context of best interest (Gozalo et al., 2011; 
Garden et al., 2016;  Handley et al., 2022). The studies 
showed consistency between the chosen methodology 
and the research question, the methods used and the 
interpretation of the results. 
All studies evaluate the effectiveness of advance 
care planning. Five studies additionally define the 
Identification of studies via databases and registers Identification of studies via other 
methods 
Records identified from*: 
Databases (n = 337)
PubMed (n = 117)
Scopus (n = 133)
Science direct (n = 87)
Records removed before 
screening:
Duplicate records removed  
(n = 48)
Records marked as ineligible 
by automation tools (n = 0)
Records removed for other 
reasons (n = 0)
Records screened 
(n = 289)
Records excluded** 
(n = 178)
Reports sought for retrieval 
(n = 111)
Reports not retrieved 
(n = 86)
Reports assessed for 
eligibility 
(n = 25)
Reports excluded: 
not on ACP (n = 8) not on
dementia after 65 (n = 6),
not in English (n = 2)
Studies included in the 
review 
(n = 10)
Studies included in 
the review after 
hand searching 
reference lists 
(n = 1)
Id
en
tif
ic
at
io
n
Sc
re
en
in
g
In
cl
ud
ed
Figure 1: PRISMA flow chart diagram (Page et al., 2021)
Slika 1: PRISMA diagram poteka (Page et al., 2021)
22 Koštomaj, S., (2024)/Obzornik zdravstvene nege, 58(1), pp. 18–27.
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e 
tr
an
sit
io
ns
Bu
rd
en
so
m
e 
tr
an
sit
io
ns
 →
 la
st
 th
re
e 
da
ys
 
of
 li
fe
 a
nd
 m
ul
tip
le
, f
re
qu
en
t h
os
pi
ta
l 
ad
m
iss
io
ns
 (l
as
t t
hr
ee
 m
on
th
s)
Po
or
 fr
om
 th
e 
fin
an
ci
al
 p
oi
nt
 o
f v
ie
w,
 p
oo
r 
fo
r t
he
 p
er
so
n 
liv
in
g 
w
ith
 d
em
en
tia
, ↓
 Q
O
L
3*
H
an
dl
ey
 e
t a
l.,
 2
02
2
U
ni
te
d 
K
in
gd
om
 o
f 
G
re
at
 B
rit
ai
n 
an
d 
N
or
th
er
n 
Ir
el
an
d,
 
Au
st
ra
lia
Q
ua
lit
at
iv
e 
st
ud
y 
– 
fo
cu
s g
ro
up
 st
ud
y
To
 re
se
ar
ch
 th
e 
vi
ew
s a
nd
 
ex
pe
rie
nc
es
 o
f n
ur
sin
g 
st
aff
 
an
d 
pa
lli
at
iv
e 
ca
re
 sp
ec
ia
lis
ts
 
an
d 
un
de
rs
ta
nd
 h
ow
 el
em
en
ts
 
of
 th
e 
or
ga
ni
sa
tio
na
l s
tr
uc
tu
re
 
ha
ve
 in
flu
en
ce
d 
th
e 
pr
ov
isi
on
 
of
 p
al
lia
tiv
e 
ca
re
 in
 th
e 
U
ni
te
d 
K
in
gd
om
 a
nd
 A
us
tr
al
ia
.
n 
= 
49
 p
ro
vi
de
rs
 –
 2
8 
ba
sic
 c
ar
e, 
21
 p
al
lia
tiv
e 
ca
re
 sp
ec
ia
lis
ts
, e
ig
ht
 
fo
cu
s g
ro
up
s
Bu
ild
in
g 
an
 o
rg
an
isa
tio
na
l c
ul
tu
re
 →
 h
ig
h-
qu
al
ity
 p
al
lia
tiv
e 
ca
re
 w
ith
 a
dv
an
ce
 c
ar
e 
pl
an
ni
ng
 →
 C
oo
pe
ra
tio
n
↑ 
th
e 
or
ga
ni
sa
tio
n 
of
 c
ar
e 
an
d 
ro
ut
in
e 
m
et
ho
ds
 o
f w
or
k 
↑ 
co
nt
in
ui
ty
 o
f c
ar
e
↑ 
pe
rs
on
al
ise
d 
ho
lis
tic
 e
nd
-o
f-
lif
e 
ca
re
↑ 
do
cu
m
en
ta
tio
n
↑ 
pr
io
rit
y 
as
pe
ct
s o
f e
nd
-o
f-
lif
e 
ca
re
 –
 li
fe
 
st
or
y 
↑ 
st
aff
 e
xp
ec
ta
tio
ns
 w
he
n 
pr
ov
id
in
g 
en
d-
of
-
lif
e 
ca
re
, s
up
po
rt
 fo
r p
ro
ce
ss
in
g 
gr
ie
f a
nd
 
be
re
av
em
en
t
5*
Co
nt
in
ue
s/
Se
 n
ad
al
ju
je
23Koštomaj, S., (2024)/Obzornik zdravstvene nege, 58(1), pp. 18–27.
Au
th
or
, y
ea
r, 
an
d 
co
un
tr
y/
Av
to
r, 
le
to
 in
 
dr
ža
va
Re
se
ar
ch
 d
es
ig
n/
 
Vr
st
a 
ra
zi
sk
av
e
Ai
m
s a
nd
 o
bj
ec
tiv
es
 o
f r
es
ea
rc
h/
 
N
am
en
 in
 ci
lji
 ra
zi
sk
av
e
Ch
ar
ac
te
ri
st
ic
s o
f t
he
 
sa
m
pl
e/
Zn
ač
iln
os
ti 
vz
or
ca
K
ey
 fi
nd
in
gs
/ 
G
la
vn
i r
ez
ul
ta
ti
M
M
AT
 
ev
al
ua
tio
ns
co
re
/ 
oc
en
a 
ka
ko
vo
st
i
La
ll 
et
 a
l.,
 2
02
1
A
sia
Q
ua
lit
at
iv
e 
co
m
po
ne
nt
 o
f m
ix
ed
 
m
et
ho
ds
, q
ua
lit
at
iv
e 
st
ud
y 
To
 q
ua
lit
at
iv
el
y 
st
ud
y 
th
e 
ex
pe
rie
nc
es
 o
f p
at
ie
nt
s a
nd
 
ca
re
gi
ve
rs
 w
ith
 th
e 
ad
va
nc
e 
ca
re
 
pl
an
ni
ng
 p
ro
gr
am
m
e.
n 
= 
28
 p
ar
tic
ip
an
ts
13
 h
ea
lth
ca
re
 w
or
ke
rs
 
in
vo
lv
ed
 in
 p
at
ie
nt
 
de
ci
sio
n-
m
ak
in
g 
(P
D
M
), 
ot
he
r p
eo
pl
e 
w
ith
 d
em
en
tia
 a
ge
d 
≥ 
65
A
 co
nc
ep
tu
al
 fr
am
ew
or
k 
fo
r a
dv
an
ce
 c
ar
e 
pl
an
ni
ng
 ta
ki
ng
 in
to
 a
cc
ou
nt
 p
re
fe
re
nc
es
 –
  
↑ 
re
la
tiv
es
' f
ee
lin
gs
C
ho
ic
e 
of
 P
D
M
,  
↑ 
Im
pa
ct
 o
f a
dv
an
ce
 c
ar
e 
pl
an
ni
ng
 o
n 
be
re
av
em
en
t o
ut
co
m
es
 in
 re
la
tiv
es
, ↑
 q
ua
lit
y 
of
 li
fe
 o
f r
el
at
iv
es
 a
fte
r t
he
 d
ea
th
 o
f a
 lo
ve
d 
on
e.
Pa
tie
nt
 au
to
no
m
y 
ca
n 
be
 in
co
m
pa
tib
le
 w
ith
 
th
e 
co
nc
ep
t o
f a
ut
on
om
y 
in
 A
sia
n 
cu
ltu
re
s, 
w
he
re
 fa
m
ili
es
 m
ak
e 
de
ci
sio
ns
 to
ge
th
er
.
4*
Li
vi
ng
st
on
 e
t a
l.,
 2
01
3
U
ni
te
d 
K
in
gd
om
 o
f 
G
re
at
 B
rit
ai
n 
an
d 
N
or
th
er
n 
Ir
el
an
d
In
te
rv
en
tio
n 
st
ud
y
To
 im
pr
ov
e 
th
e 
en
d-
of
-li
fe
 c
ar
e 
fo
r 
in
di
vi
du
al
s w
ith
 d
em
en
tia
, t
ak
in
g 
in
to
 a
cc
ou
nt
 th
ei
r s
pe
ci
fic
 w
ish
es
n 
= 
56
 in
di
vi
du
al
s 
w
ith
 d
em
en
tia
 b
ef
or
e 
in
te
rv
en
tio
n 
an
d 
42
 
aft
er
 th
e 
in
te
rv
en
tio
n,
 
ei
gh
t r
el
at
iv
es
 
↑ 
D
oc
um
en
ta
tio
n 
of
 d
es
ire
 fo
r a
dv
an
ce
 
ca
re
 p
la
nn
in
g,
 re
su
sc
ita
tio
n,
 d
yi
ng
 at
 h
om
e 
ra
th
er
 th
an
 at
 th
e 
ho
sp
ita
l, 
↑ 
th
e 
sa
tis
fa
ct
io
n 
of
 re
la
tiv
es
,  
↑C
on
sis
te
nc
y 
of
 e
nd
-o
f-
lif
e 
ca
re
 w
ith
 
pa
tie
nt
's 
w
ish
es
, a
nd
 d
ec
isi
on
s. 
↓ 
H
os
pi
ta
lis
at
io
ns
 in
 th
e 
la
st
 th
re
e 
m
on
th
s o
f 
lif
e, 
↑ 
th
e 
se
lf-
co
nfi
de
nc
e 
of
 st
aff
.
4*
M
itc
he
ll 
et
 a
l.,
 2
00
3
U
ni
te
d 
St
at
es
 o
f A
m
er
ic
a
C
or
re
la
tio
n 
st
ud
y
To
 e
xa
m
in
e 
th
e 
eff
ec
tiv
en
es
s o
f 
ad
va
nc
e 
ca
re
 p
la
nn
in
g 
fr
om
 th
e 
po
in
t o
f v
ie
w
 o
f t
he
 re
fu
sa
l o
f 
m
ed
ic
al
 in
te
rv
en
tio
n.
n 
= 
18
6,
83
5 
re
sid
en
ts
 
w
ith
 a
dv
an
ce
d 
de
m
en
tia
 
ag
ed
 6
5 
or
 o
ve
r, 
w
ith
 
N
G
 tu
be
 in
 p
la
ce
 fo
r 
on
e 
ye
ar
 o
r m
or
e 
↓Q
O
L.
 F
ee
di
ng
 v
ia
 N
G
 tu
be
 ↓
 p
os
iti
ve
 
eff
ec
ts
 o
n 
a 
pe
rs
on
 w
ith
 d
em
en
tia
. 
Pe
op
le
 w
ith
ou
t a
dv
an
ce
 c
ar
e 
pl
an
ni
ng
, w
ith
 
N
G
 tu
be
  
↑ 
pr
es
su
re
 so
re
s, 
 
↑ 
as
pi
ra
tio
n 
pn
eu
m
on
ia
3*
N
ic
ho
la
s e
t a
l.,
 2
01
4
U
ni
te
d 
St
at
es
 o
f A
m
er
ic
a
Re
tr
os
pe
ct
iv
e 
co
ho
rt
 
st
ud
y
To
 st
ud
y 
th
e 
di
ffe
re
nc
es
 in
 th
e 
us
e 
of
 a
dv
an
ce
 c
ar
e 
pl
an
ni
ng
 re
la
te
d 
to
 tr
ea
tm
en
t, 
ex
pe
nd
itu
re
 o
n 
m
ed
ic
in
es
, a
nd
 u
se
 o
f i
nt
en
siv
e 
tr
ea
tm
en
ts
.
n 
= 
3,
30
2 
de
ce
as
ed
 
de
m
en
tia
 su
ffe
re
rs
 a
ge
d 
ov
er
 6
5
ad
va
nc
e 
ca
re
 p
la
nn
in
g 
– 
lim
ita
tio
ns
 o
f e
nd
-
of
-li
fe
 c
ar
e;
 ↓
 co
ns
um
pt
io
n 
of
 m
ed
ic
in
es
, ↓
 
th
e 
lik
el
ih
oo
d 
of
 d
ea
th
 in
 th
e 
ho
sp
ita
l, 
↑ 
us
e 
of
 c
ar
e 
in
 re
gi
on
s c
ha
ra
ct
er
ise
d 
by
 h
ig
he
r 
le
ve
ls 
of
 e
nd
-o
f-
lif
e 
ex
pe
nd
itu
re
, ↓
 in
te
ns
iv
e 
tr
ea
tm
en
ts
4*
Va
nd
er
vo
or
t e
t a
l.,
 2
01
4
Be
lg
iu
m
C
or
re
la
tio
n 
st
ud
y
Re
tr
os
pe
ct
iv
e 
co
ho
rt
 
st
ud
y
To
 st
ud
y 
th
e 
ex
te
nt
 to
 w
hi
ch
 
ad
va
nc
e 
ca
re
 p
la
nn
in
g 
in
 th
e 
fo
rm
 
of
 a
 w
rit
te
n 
co
m
m
un
ic
at
io
n 
pl
an
 b
y 
th
e 
pe
rs
on
 w
ith
 d
em
en
tia
 a
nd
 th
ei
r 
re
la
tiv
es
 is
 li
nk
ed
 to
 th
e 
qu
al
ity
 o
f 
dy
in
g 
in
 a
 n
ur
sin
g 
ho
m
e.
n 
= 
10
1 
pe
op
le
 li
vi
ng
 
w
ith
 d
em
en
tia
 a
dv
an
ce
 
ca
re
 p
la
nn
in
g 
(1
7%
)
A
 st
ra
tifi
ed
 ra
nd
om
 
sa
m
pl
e 
of
 n
ur
sin
g 
ho
m
es
 6
3%
 (8
5+
), 
15
%
 
(8
5)
.
ad
va
nc
e 
ca
re
 p
la
nn
in
g 
↑ 
qu
al
ity
 o
f l
ife
 a
nd
 
dy
in
g 
↓ 
st
re
ss
 le
ve
ls.
 a
dv
an
ce
 c
ar
e 
pl
an
ni
ng
 
↓ 
fe
ar
 a
nd
 a
nx
ie
ty
 –
 b
ut
 n
ot
 p
hy
sic
al
 
di
st
re
ss
. C
on
ve
rs
at
io
ns
 in
 th
e 
co
nt
ex
t o
f 
ad
va
nc
e 
ca
re
 p
la
nn
in
g 
– 
ex
cl
us
io
n 
of
 ti
m
e 
lim
it,
 e
ffe
ct
iv
en
es
s, 
ea
rly
 st
ar
ts
; a
dv
an
ce
 
ca
re
 p
la
nn
in
g 
– 
re
la
tiv
es
 –
 e
qu
al
 p
ar
tn
er
s.
4*
Le
ge
nd
/L
eg
en
da
: A
dv
an
ce
 ca
re
 p
la
nn
in
g –
 a
dv
an
ce
 ca
re
 p
la
nn
in
g/
vn
ap
re
jšn
je
 n
ač
rt
ov
an
je
 o
sk
rb
e; 
IC
U
 –
 in
te
ns
iv
e c
ar
e u
ni
t/e
no
ta
 za
 in
te
nz
iv
no
 n
eg
o;
 D
N
R 
– 
do
 n
ot
 re
su
sc
ita
te
/n
e o
ži
vl
ja
j; 
N
H
 
– 
nu
rs
in
g 
ho
m
e/
do
m
 st
ar
ej
ših
; N
G
 tu
be
 –
 a
 n
as
og
as
tr
ic 
tu
be
/n
az
og
as
tr
ičn
a 
so
nd
a;
 I 
– 
in
te
rv
en
tio
n 
gr
ou
p/
in
te
rv
en
cij
sk
a 
sk
up
in
a;
 C
 –
 co
nt
ro
l g
ro
up
/k
on
tro
ln
a 
sk
up
in
a;
 P
D
M
 –
 p
at
ie
nt
 d
ec
isi
on
 
-m
ak
in
g/
od
lo
ča
nj
e 
pa
cie
nt
a;
 F
AS
T 
7C
 –
 fu
nc
tio
na
l a
ss
es
sm
en
t s
ta
gi
ng
 te
st 
fo
r p
eo
pl
e 
liv
in
g 
w
ith
 d
em
en
tia
/o
ce
na
 fu
nc
ijs
ke
ga
 st
an
ja
 o
se
b 
z 
de
m
en
co
; D
N
I –
 d
o 
no
t i
nt
ub
at
e/
ne
 in
tu
bi
ra
j; 
Q
O
L 
– 
th
e 
qu
al
ity
 o
f l
ife
/k
ak
ov
os
t ž
iv
lje
nj
a;
 H
C 
– 
he
al
th
ca
re
/z
dr
av
stv
en
a 
os
kr
ba
; ↑
 in
cr
ea
se
/p
ov
eč
an
je
; ↓
 d
ec
re
as
e/
zm
an
jša
nj
e; 
→
 le
ad
s t
o/
vo
di
 v
; n
 –
 n
um
be
r/
šte
vi
lo
; M
M
AT
 –
 q
ua
lit
y 
sc
or
e/
oc
en
a 
ka
ko
vo
sti
; 1
* –
 2
0%
 q
ua
lit
y c
rit
er
ia
 m
et
/2
0 
%
 k
rit
er
ije
v k
ak
ov
os
ti;
 2
*–
 4
0%
 q
ua
lit
y c
rit
er
ia
 m
et
/4
0 
%
 k
rit
er
ije
v k
ak
ov
os
ti;
 3
*–
 6
0%
 q
ua
lit
y c
rit
er
ia
 m
et
/6
0 
%
 k
rit
er
ije
v k
ak
ov
os
ti;
 4
*–
 8
0%
 q
ua
lit
y 
cr
ite
ria
 m
et
/8
0 
%
 k
rit
er
ije
v 
ka
ko
vo
sti
; 5
*–
 1
00
%
 q
ua
lit
y 
cr
ite
ria
 m
et
/1
00
 %
 k
rit
er
ije
v 
ka
ko
vo
sti
24 Koštomaj, S., (2024)/Obzornik zdravstvene nege, 58(1), pp. 18–27.
outcomes related to health care utilisation, including 
determination of place of death, level of care, and 
details of treatment procedures (Gozalo et al., 2011; 
Livingston et al., 2013; Nicholas et al., 2014; Garden et 
al., 2016;  Cohen et al., 2019). Four studies link their key 
findings to the quality of life (Livingston et al., 2013; 
Vandervoort et al., 2014; Brazil et al., 2018; Lall et al., 
2021), while satisfaction with nursing and care related 
to advance care planning is defined by by Livingston 
et al., (2013), Garden et al., (2016), Brazil et al., (2018) 
and Lall et al., (2021). Barriers and facilitators of 
advance care planning are defined by Livingston et al., 
(2013), Garden et al., (2016), Brazil et al., (2018) and 
Lall et al., (2021). None of the studies address the costs 
associated with implementing advance care planning 
within the institution, whether financial, material, or 
in terms of human resources.
The key topics identified through the literature review 
can be synthesised into two common interpretation 
sets and condensed into two primary concepts: 1) 
advance care planning, and 2) empowerment for 
people with dementia (Figure 2).
Advance care planning can improve end-of-life 
outcomes by reducing hospitalisations and increasing 
the likelihood of dying in the preferred place. 
Satisfaction with nursing care is an important outcome 
to consider when developing advance care planning 
for older adults with dementia. Effective advance 
care planning for older adults with dementia should 
involve open communication and collaboration 
between healthcare providers and family members.
The concept of empowerment for people with 
dementia  (Livingston et al., 2013; Garden et al., 
2016; Brazil et al., 2018; Lall et al., 2021) is based on 
the preferences of older adults with dementia, their 
will and wishes, and the possibility of involving their 
families. This concept relies on a person-centred 
approach, which means that care should be tailored to 
individual preferences, needs and values. Empowering 
older adults with dementia through advance care 
planning can help ensure that they receive care that is 
in line with their values and preferences, and that they 
can maintain a sense of control and agency over their 
lives even as their condition progresses.
Discussion
This study sought to review the empirical evidence 
related to the effectiveness of advance planning in the 
palliative care of older adults with dementia, focusing 
on those living in social care institutions. We found that 
advance care planning, which defines the boundaries 
for end-of-life care, is associated with significantly 
lower rates of medication use, lower likelihood of in-
hospital death and increased utilisation of care in regions 
characterised by higher funding for end-of-life care 
(Gozalo et al., 2011; Nicholas et al., 2014). Consequently, 
this can lead to a significantly higher quality of life. The 
patterns of hospital transitions incompatible with the 
goals of advance care planning place an extremely high 
burden on the entire health system. At the same time, 
they have been shown to degrade the quality of life when 
they occur in the last 90 days of life (Gozalo et al., 2011).
Research shows that the level of advance care planning 
providers' training impacts both family satisfaction 
and staff confidence, resulting in improved quality of 
care for older adults with dementia (Livingston et al., 
2013). Adequately responding to the wishes, needs and 
capabilities of the terminally ill older adults is extremely 
important. Health and social care for older adults with 
advanced dementia should be based on managing 
symptoms, offering psychosocial support and addressing 
their spiritual needs (Rietjens et al., 2016). The preferences 
of older people with dementia regarding specific 
THE CONCEPT OF ACP (ACP and end-of-life 
outcomes – identification of desired phase at the end of 
life, utilisation of health care, transitions (Nicholas et 
al., 2014), experiences and positions, satisfaction with 
nursing and care (Livingston et al., 2013; Garden et al., 
2016; Brazil et al., 2018; Lall et al., 2021).
THE CONCEPT OF EMPOWERMENT FOR PEOPLE 
WITH DEMENTIA (Livingston et al., 2013; Garden et 
al., 2016; Brazil et al., 2018; Lall et al., 2021). This concept 
is based on the preferences of older adults' with dementia, 
their will and wishes, and the possibility of inclusion of 
their families. 
Figure 2: Identified concepts
Slika 2: Identificirana koncepta
25Koštomaj, S., (2024)/Obzornik zdravstvene nege, 58(1), pp. 18–27.
advance care planning structures should be prioritised. 
Aggressive treatments aimed primarily at prolonging life 
often outweigh care that focuses on treating distressing 
symptoms, alleviating suffering and improving quality of 
life (Rietjens et al., 2016).
Significant barriers to advance care planning 
identified in our study include uncertainty regarding 
advance care planning timing, planning for an 
uncertain future, lack of knowledge about dementia, 
difficulty in assessing the urgency of decision making, 
and changing preferences (Livingston et al., 2013; 
Vandervoort et al., 2014). Facilitators for advance 
care planning included starting early when cognitive 
decline is still mild, involving all interested parties, 
and addressing social and health issues aimed at 
maintaining a normal life (Vandervoort et al., 2014).
While implementing advance care planning for older 
adults with dementia can be extremely demanding, 
it is important to note that it requires well-equipped 
staff, a point also emphasised by the studies reviewed. 
This approach allows older adults with dementia to 
express their wishes about where they would like to 
be treated, what the goals of their treatment should be 
and what procedures they would like to avoid. 
This literature review has certain limitations that 
must be taken into account when interpreting its 
findings. These include the involvement of a single 
author at all stages of the review, limited scope 
of literature, limited diversity of sources, limited 
perspective, limited experience, potential bias, 
heterogeneity, language limitations (only English-
language publications), and limited transparency. Our 
literature review offers only a partial view of this very 
important topic.
Nevertheless, this review shows that the use of 
advance care planning is extremely important for older 
adults with dementia, as well as for their families and 
those who provide formal and informal care in social 
care institutions. Older adults with dementia develop 
different care needs at different stages of disease 
progression towards the end of life, requiring integrated 
services with effective components of a person-centred 
approach to palliative care (Chen et al., 2022).
Our review helps to identify and bridge the gaps in 
empirical and practical experience. It highlights the 
critical importance of timely initiation of advance care 
planning and the collaboration between stakeholders. 
It also outlines the key aspects of advance care planning 
discussions and the preconditions for advance care 
planning. The review concludes by identifying two 
key concepts, the concept of advance care planning 
and the concept of empowering people with dementia.
Conclusion
Our literature review establishes a clear link between 
the preferences expressed by older adults with dementia 
regarding end-of-life care, their living will, and desire 
to die with less emotional distress. Regardless of the 
specific mechanisms, it is crucial to initiate advance 
care planning sufficiently early enough. The evidence 
supporting the advantages of advance care planning 
highlights the need for further work in this area to ensure 
that advance care planning practices are appropriately 
developed and recognised as a strategic demographic 
initiative. In the context of clinical practice and the 
formulation of national strategies, emphasis should 
be placed on the impact of advance care planning, 
multidisciplinary approaches, the integration of health 
and social care, and the essential coordination of 
primary, secondary and tertiary levels of health care, 
including ensuring the provision of integrated and 
systemically regulated palliative care.
Many studies focus on specific populations or settings, 
which may limit the generalisability of findings to a 
broader context. There is an urgent need for research 
that includes diverse populations of older adults with 
dementia, including people from different cultural and 
socioeconomic backgrounds and care settings.
Conflict of interest/Nasprotje interesov
The author declares that no conflict of interest 
exists./Avtorica izjavlja, da ni nasprotja interesov.
Funding/Financiranje
The study recived no funding./Raziskava ni bila 
finančno podprta.
Ethical approval/Etika raziskovanja 
No approval by the Ethics Committee was necessary 
to conduct the study due to the selected research 
methodology./Za izvedbo raziskave glede na izbrano 
metologijo raziskovanja soglasje Komisije za etiko ni 
bilo potrebno.
Author contributions/Prispevek avtorjev
The author carried out all the phases of the research 
process, performed the search, reviewed the literature, 
assessed the quality of the selected sources and wrote 
the article./Avtorica je izvedla vse faze raziskovalnega 
procesa, opravila iskanje, pregledala literaturo, ocenila 
kakovost izbranih virov in spisala članek.
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Koštomaj, S. (2024). Impact of advance care planning for older adults with dementia in nursing homes: A literature review. 
Obzornik zdravstvene nege, 58(1), 18–27. https://doi.org/10.14528/snr.2024.58.1.3247