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Article
Health care professionals’perspectives of advance careplanning for people withdementia living in long-termcare settings: A narrativereview of the literature
Esther-Ruth BeckSchool of Nursing, Institute of Nursing and Health Research, University of Ulster, Newtownabbey, UK1
Sonja McIlfatrickUniversity of Ulster, Northern Ireland, UK; All Ireland Institute of Hospice and Palliative Care,
Northern Ireland, UK
Felicity HassonUniversity of Ulster, Northern Ireland, UK
Gerry LeaveyBamford Centre for Mental Health, University of Ulster, Northern Ireland, UK
Abstract
This paper provides an overview of the evidence on the perspective of health care professionals
(HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term
care settings. A narrative approach was adopted to provide a comprehensive synthesis of
previously published literature in the area. A systematic literature search identified 14 papers
for inclusion. Following review of the studies four themes were identified for discussion; Early
integration and planning for palliative care in dementia; HCPs ethical and moral concerns
regarding ACP; Communication challenges when interacting with the person with dementia
and their families and HCPs need for education and training. Despite evidence, that HCPs
recognise the potential benefits of ACP, they struggle with its implementation in this setting.
Greater understanding of dementia and the concept of ACP is required to improve
consistency in practice. Synthesising the existing evidence will allow for further understanding
of the key issues, potentially resulting in improved implementation in practice.
Corresponding author:
Esther-Ruth Beck, University of Ulster, Institute of Nursing and Health Research, School of Nursing, Room 12J06, Shore
Road, Newtownabbey BT37 0QB, UK.
Email: [email protected]
Dementia
0(0) 1–27
! The Author(s) 2015
Reprints and permissions:
sagepub.co.uk/journalsPermissions.nav
DOI: 10.1177/1471301215604997
dem.sagepub.com
Keywords
advance care planning, end-of-life decision making, nursing home, health care professionals
Introduction
Global estimates suggest that 35.6 million people are living with dementia worldwide, with aprojected increase to 115.4 million by 2051 (Prince et al., 2013). Such figures have promptedthe World Health Organisation (WHO) to prioritise dementia as a global health and socialcare priority for the coming decades (WHO, 2013).2
According to Evans and Goodman (2008) many people with dementia will reside in along-term care (LTC) setting such as a nursing home, especially towards the end of thedisease trajectory. Furthermore, a systematic review undertaken by Sharp, Moran, Kuhn,and Barclay (2013) concluded that many older people are keen to plan for their futurehealthcare needs. Evidence suggests that there is a need to allow those living withdementia to have their wishes known surrounding their future healthcare goals (van derSteen et al., 2013). An integral component of such an approach is the promotion of advancecare planning (ACP) (Mullick, Martin, & Sallnow, 2013), with patient autonomy central tothis (Exley, Bamford, Hughes, & Robinson, 2009).
Robinson et al. (2012) defined advanced care planning as ‘‘A multi-stage processwhereby a patient and their carers achieve a shared understanding of their goals andpreferences for future care’’ (Robinson et al., 2012a, p. 263). Therefore theunderpinning philosophy of ACP is to promote discussions in which individuals,families and professionals make decisions in relation to their future healthcare goals,in anticipation of cognitive decline. This has led to the development and subsequentpromotion of ACP, specifically within the context of dementia care (Dempsey, 2013).There is however a lack of clarity, both within the literature and policy in relation todefining ACP for this population, resulting in inconsistencies in subsequent practice (vander Steen et al., 2014).
Whilst ACP has the potential to improve health and social care provision for people withdementia, it would appear this aspiration may be failing (Dempsey, 2014, 2013), with moraland ethical concerns of health care professionals (HCPs) cited as a key barrier, leading tolimited acceptability of ACP within the LTC setting (Froggatt, Vaughan, Bernard, & Wild,2009). Whilst three recent systematic reviews in the area have acknowledged the potentialbenefits of ACP to people with dementia (Dening, Jones, & Sampson, 2011; Robinson et al.,2012a; van der Steen et al., 2014), there is a lack of discussion on ACP from the perspectiveof HCPs. It is evident that HCPs play a central role in this process yet there is a paucity ofliterature that explores their perspective. This paper addresses this gap by providing anarrative review of studies of HCPs perspectives on ACP for people diagnosed withdementia. Given the importance of ACP in policy and clinical practice, especially withinthe field of palliative care, it is surprising that there is a small body of literature that hasfocused on the role of the HCP in initiating, implementing and evaluating ACP. This reviewbuilds upon and expands previous work in the area to provide an up to date synthesis ofHCPs perspectives on ACP and the challenges they encounter. A recent systematic review,examining factors affecting initiation of ACP for people with dementia, not only underlinedthe complexity of individual factors which impact on the implementation of ACP in practice,
2 Dementia 0(0)
but also the central role that staff play in providing an individualised approach (van derSteen et al., 2014).
Aim
To synthesise the evidence on HCP’s perspectives on ACP for people with dementia in LTCsettings.
Methods
A narrative literature review methodology was adopted to enable synthesis of the currentknowledge on the topic (Dixon-Woods, Agarwal, Jones, Young, & Sutton, 2005). Accordingto Green, Johnson, and Adams (2006), such an approach will allow for a broad perspectiveto be presented on a particular area. The decision to undertake a narrative approach tosynthesis was influenced by the diversity of literature in the area resulting in a lack ofhomogeneity in terms of methodological approaches adopted (Grant & Booth, 2009).There was also a high degree of heterogeneity in terms of theoretical underpinning,context, participants, outcomes, variables and quality. According to Popay et al. (2006) anarrative approach allows the author(s) to ‘tell the story of the studies included’ (p. 5) due toits’ textual approach to synthesis. A systematic approach was employed using the PRISMAguidelines (Moher, Liberati, Tetzlaff, Altman, & The PRISMA Group, 2009) in order toensure rigour and transparency (Booth, Papaionnou, & Sutton, 2012; Kable, Pich, &Maslin-Prothero, 2012).
Four electronic databases (Cinahl, Medline, Psychinfo and Scopus) were searched withinthe time limitation (2002–2014). These databases were chosen due to the scope of disciplinesrepresented, in conjunction with the wide representation of international journals deemed ofrelevance for this topic. The search strategy involved defining key words which were refinedand grouped within three categories These included: ‘Dementia’ AND/OR ‘cognitiveimpairment’; ‘Advance* care plan*’ AND/OR ‘end–of-life decision making’ Nursinghome*’ AND/OR ‘home* for the aged’ AND/OR ‘care home’. Inclusion and exclusioncriteria were established (see Table 1).
Table 1. Inclusion and exclusion criteria.
Inclusion criteria Exclusion criteria
Written in the English language
Empirical studies published in international peer
reviewed journals.
Studies inclusive of qualitative, quantitative and
mixed methodologies.
Systematic literature reviews
Focus on the perspective of HCPs in relation to
ACP for people with dementia.
Conducted within the long-term care sector.
Written in language other than English
Studies conducted in acute care settings
Studies conducted in community settings
Studies which focused exclusively on the
perspective of people with dementia/ and or
their families
Discussion and editorial papers
Beck et al. 3
Results
A systematic search of the databases retrieved 205 results (Figure 1). Hand searching of keyjournals yielded a further six potential papers. Duplicates (n¼ 97) were removed. The initialscreening process was undertaken by one researcher (EB) who identified a total of 33 articleswhich were reviewed by abstract and five found not to be relevant. A total of 28 articles werereviewed fully in order to assess if they met the inclusion criteria for the review. Furtherdiscussion between two researchers enabled consensus to be reached (SMc; FH). Discussionand editorial papers were excluded, along with papers which focus did not include theperspectives of HCPs working within the LTC setting.
Figure 1. 26 2.
4 Dementia 0(0)
A total of 14 papers were deemed eligible for inclusion as they met the inclusion criteriapreviously outlined in Table 1. Table 2 illustrates the studies included. A decision was takento undertake an inclusive narrative review due to the paucity of literature whilstacknowledging limitations of this approach.
The majority of the studies were conducted in the UK (n¼ 8), followed by Europe (n¼ 3),then the US (n¼ 2) and Australia (n¼ 1). It was noted that a qualitative research designdominated in the studies (n¼ 5), using a combination of in-depth interviews (n¼ 4), focusgroups (n¼ 1) and observational case study approach (n¼ 1). The sample size variedsignificantly from n¼ 9 in the qualitative studies to n¼ 318 in the quantitative studies,and the total population for this review, based on the primary studies, was n¼ 1305HCPs, comprised of wide range of health care professions.
An iterative review of each empirical study and systematic review revealed 10 categories,which were subsequently categorised into four key themes. A table depicting the mapping ofthese themes to the studies is presented (please see Table 3). These themes included: (1) Theimportance of early integration and planning for palliative care in dementia; (2) HCPsethical and moral concerns regarding ACP; (3) Communication challenges wheninteracting with the person with dementia and their families; and (4) HCP need forEducation, Training and Knowledge. Each theme is explored in greater detail below.
The importance of early integration and planning for palliative care in dementia. The literatureprovided evidence of the need for greater recognition of the applicability of the palliativeethos to dementia care, with two systematic reviews clearly highlighting the benefits (Deninget al., 2011; van der Steen et al., 2014). However, the overall findings suggest that disparitystill exists in terms of recognition of dementia as a terminal illness by HCPs (van der Steenet al., 2014).
There is some evidence from the studies that people with dementia are often notrecognised by HCPs as having a terminal illness, thus restricting their access to apalliative approach (Livingston et al., 2012; Robinson et al., 2012b; Stewart, Goddard,Schiff, & Hall, 2011). Robinson et al. (2012b) in a UK qualitative study, including adiversity of HCPs such as GPs, palliative care specialists, various allied healthprofessionals and ambulance staff, found that HCPs (n¼ 95) providing care to peoplewith dementia did not view them as individuals who were living with a terminal illness.This lack of recognition had direct implications for the initiation and implementation ofACP. The authors concluded that if dementia was not viewed in terms of a condition thatmerits a palliative approach to care, then the onus to engage in ACP with this populationmay be reduced.
This lack of recognition was evident in Livingston et al.’s (2012) UK study examiningstaff’s perspectives on how to improve end-of-life care for people with dementia in thenursing home setting. They found that many HCPs still favoured life prolongingtreatments and did not view residents as being terminally ill. This study also noted thatHCPs did not view dementia as a condition which would benefit from a palliative approach.Similar findings were also noted by Stewart et al. (2011), who highlighted that ‘‘unforeseenmedical scenarios’’ (p. 333) were a barrier to good end-of-life care. However it can be arguedthat such medical scenarios should be anticipated as part of the normal end stage diseasetrajectory of dementia, and that one of the aims of ACP is to foresee such events and planahead in anticipation of them (Vandervoort et al., 2014). According to Johnston, Attree,Jones, Gamal, and Gamal (2014) the use of tools, such as the Gold Standard Prognostic
Beck et al. 5
Tab
le2.
Sum
mar
yof
studie
sin
cluded
inre
view
.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Cav
alie
riet
al.
(2002)
US
Todesc
ribe
phy
sici
ans
appro
aches
toA
CP
for
people
with
dem
entia.
Quan
tita
tive
appro
ach
usi
ng
a
15-ite
mse
lf-
report
ing
quest
ionnai
re.
Apurp
osi
vesa
mple
of
phy
sici
ans
(n¼
67)
recr
uited
from
a600-
bedded
tri-div
isio
nal
com
munity
and
univ
ers
ity
affil
iate
d
hosp
ital
syst
em
.
1.8
1%
of
those
surv
eyed
indic
ated
they
initia
ted
AC
Pw
ith
their
pat
ients
,
how
ever
only
25%
of
their
pat
ients
had
adia
gnosi
sof
dem
entia.
2.R
esu
lts
of
study
indic
ate
phy
sici
ans
are
relu
ctan
tto
dis
cuss
AC
Pw
ith
people
with
dem
entia
and
their
fam
ily.
3.M
ore
educa
tion
isneeded
topro
vide
unders
tandin
g
of
the
com
ple
xity
of
AC
P.
1.Low
resp
onse
rate
of
23%
acknow
ledge
d.
2.Se
lf-re
port
ing
surv
eyhas
pote
ntial
tocr
eate
bia
s.
3.T
here
was
no
indic
atio
nof
tim
e
peri
od
for
dat
a
colle
ctio
n.
Denin
get
al.(2
011)
UK
Toexam
ine
the
faci
litat
ors
and
bar
riers
toA
CP
for
people
with
dem
entia.
Syst
em
atic
revi
ew
of
the
litera
ture
.
17
studie
sid
entifie
d.
Quan
tita
tive
(n¼
11).
Qual
itat
ive
(n¼
1).
Mix
ed
meth
ods
(n¼
5)
1.C
oncl
udes
that
there
isa
lack
of
evid
ence
bas
eto
support
the
effect
iveness
of
AC
Pfo
rpeople
with
dem
entia.
2.R
eco
mm
end
that
futu
re
rese
arch
incl
ude
the
view
s
of
people
with
dem
entia.
1.Pote
ntial
for
auth
or’s
inte
rpre
tations
to
be
pre
sent
inth
e
revi
ew.
(continued)
6 Dementia 0(0)
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Frogg
att
et
al.
(2009)
UK
Todesc
ribe
the
curr
ent
pra
ctic
eof
AC
Pin
the
long-
term
care
sect
or
to
asse
ssth
eexte
nt
to
whic
hA
CP
isbein
g
use
d,w
hic
hto
ols
are
bein
guse
d,
man
agers
know
ledge
and
confid
ence
and
fact
ors
that
influ
ence
AC
Pin
this
sect
or.
Mix
ed-m
eth
ods
desi
gnusi
ng
a
post
al
quest
ionnai
re
surv
ey(p
has
e1)
and
in-d
epth
tele
phone
inte
rvie
ws
(phas
e2).
Regi
stere
dnurs
ing
hom
e
man
agers
(n¼
213)
(phas
e1)
were
recr
uited
from
500
nurs
ing
hom
es
acro
ss
the
long-
term
care
sect
or.
Phas
e2
(n¼
15)
nurs
ing
hom
em
anag
ers
recr
uited
inphas
eone
usi
ng
purp
osi
ve
sam
plin
gte
chniq
ues.
1.T
here
isa
need
tolo
ok
bey
ond
the
UK
for
know
ledge
on
how
to
imple
ment
aco
mple
x
inte
rvention
such
asA
CP
inth
isse
ttin
g.
2.H
ighlig
hts
the
dis
tinct
ion
betw
een
asce
rtai
nin
g
wis
hes
and
imple
menting
them
.
3.T
he
loca
tion
of
nurs
ing
hom
es
ina
larg
er
heal
thca
repic
ture
is
reco
gnis
ed
and
how
this
can
influ
ence
the
imple
menta
tion
of
wis
hes.
1.Se
lf-desi
gned
surv
ey
utilis
ed.
2.Se
lf-re
port
ing
meth
od
has
pote
ntial
toim
pac
t
on
resu
lts.
Johnst
on
et
al.
(2014)
UK
Todev
elo
pan
unders
tandin
gof
curr
ent
appro
aches,
valu
es
and
attitu
des
toca
repla
nnin
gat
end
oflif
ein
nurs
ing
hom
es.
Toeva
luat
e
trai
nin
gin
itia
tive
s
from
the
pers
pect
ive
of
the
resi
dent,
fam
ilies
and
pro
fess
ional
staf
f.
Mix
ed
meth
ods
appro
ach
usi
ng
surv
eydesi
gn
(report
ed
on
in
2011)
and
in-
depth
inte
rvie
ws
and
focu
s
groups.
Par
tici
pan
tsre
cruited
purp
osi
vely
.N
urs
ing
staf
f(n¼
28).
Resi
dents
(n¼
9).
Fam
ilies
(n¼
6)
from
2se
lect
ed
nurs
ing
hom
es.
1.Si
gnifi
cant
reso
urc
es
needed
toenga
gest
aff,
resi
dents
and
rela
tive
s
with
the
idea
of
AC
P.
2.D
iscu
ssio
ns
surr
oundin
g
EO
LC
are
diff
icult.
3.Tra
inin
gan
deduca
tion
can
incr
eas
eco
nfid
ence
.
1.R
est
rict
ed
to2
nurs
ing
hom
es
within
one
urb
an
loca
tion.
2.B
oth
hom
es
utilis
ing
the
Gold
Stan
dar
ds
Fram
ework
there
fore
tran
sfera
bili
tyto
oth
er
sett
ings
is
quest
ionab
le.
(continued)
Beck et al. 7
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Lac
ey(2
006)
US
Todesc
ribe
the
role
of
nurs
ing
hom
eso
cial
serv
ice
staf
fin
AC
P
for
people
with
dem
entia,
along
with
their
perc
eptions.
Quan
tita
tive
appro
ach
usi
ng
a
self-
desi
gned
surv
eyco
nsi
stin
g
of
9dom
ains.
Soci
alse
rvic
est
aff
recr
uited
usi
ng
conve
nie
nce
sam
plin
g
tech
niq
ue
from
acro
ss
skill
ed
nurs
ing
faci
litie
s
(n¼
138).
1.T
he
study
concl
udes
that
pro
fess
ional
staf
fre
quir
e
furt
her
trai
nin
gon
EO
LC
for
people
with
dem
entia.
2.R
esi
dents
and
fam
ilies
who
are
unpre
par
ed
on
adm
issi
on
todis
cuss
AC
P
tobe
give
nfu
rther
opport
unitie
sto
so.
3.H
ighlig
hts
the
eth
ical
and
mora
ldile
mm
asfa
ced
by
staf
f.
1.Par
tici
pan
tslim
ited
toone
pro
fess
ion
(soci
alw
ork
ers
).
2.T
he
auth
ors
acknow
ledge
alo
w
resp
onse
rate
.
3.A
self-
desi
gned
surv
eyw
asutilis
ed
utilis
ing
self-
report
ing
resp
onse
,
there
fore
there
is
pote
ntial
for
bia
sin
resu
lts.
Liv
ings
ton
et
al.
(2012)
UK
Toexam
ine
the
bar
riers
and
faci
litat
ors
to
impro
ving
EO
LC
for
people
with
dem
entia.
Qual
itat
ive
appro
ach
usi
ng
in-d
epth
sem
i-
stru
cture
d
inte
rvie
ws.
Staf
f(n¼
58)
recr
uited
from
a120-b
edded
nurs
ing
hom
e.
Day
nurs
es
(n¼
16),
day
senio
rca
rers
(n¼
8),
day
resi
dential
care
work
ers
(n¼
20),
nig
ht
nurs
es
(n¼
4)
and
nig
ht
resi
dential
care
work
ers
(n¼
10).
1.St
aff
need
educa
tion
and
trai
nin
gsu
rroundin
gEO
LC
dis
cuss
ions.
2.St
aff
need
support
to
unders
tand
cultura
lis
sues
surr
oundin
gdeat
hto
impro
vepra
ctic
e.
3.T
he
unpre
dic
table
traj
ect
ory
of
dem
entia
com
pounds
the
chal
lenge
s.
1.R
est
rict
ed
toone
faith-b
ased
nurs
ing
hom
e.
2.G
P’s
not
incl
uded
in
the
sam
ple
desp
ite
their
role
with
this
hom
ebeen
acknow
ledge
d.
3.T
he
hom
ein
the
study
also
benefit
ed
from
aw
eekly
clin
ic
run
by
GP’s
.N
ot
all
care
hom
es
benefit
from
such
am
odel,
and
this
may
impac
t
upon
the
findin
gs.
(continued)
8 Dementia 0(0)
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Robin
son
et
al.
(2012)
UK
Toexplo
re
pro
fess
ional
s’
experi
ence
son
the
imple
menta
tion
of
AC
Pin
two
clin
ical
areas
.
Qual
itat
ive
appro
ach
usi
ng
indiv
idual
inte
rvie
ws
(n¼
18)
and
focu
sgr
oups
(n¼
14).
Staf
fre
cruited
usi
ng
purp
osi
vesa
mplin
g
tech
niq
ue
(n¼
95).
Speci
alis
tpal
liative
care
pro
fess
ional
(n¼
5).
GPs
(n¼
10).
Com
munity
nurs
es
and
AH
P(n¼
17).
Old
age
psy
chia
tris
ts(n¼
10).
Menta
lheal
thnurs
es
and
AH
P(n¼
22).
Soci
alw
ork
ers
(n¼
6).
Am
bula
nce
serv
ice
(n¼
15).
solic
itors
(n¼
3).
Volu
nta
ry
sect
or
(n¼
7).
1.Fo
und
that
staf
fin
genera
l
felt
that
the
conce
pt
of
AC
Pw
asbenefic
ialin
theory
,how
ever
imple
menta
tion
pre
sente
d
sign
ifica
nt
chal
lenge
s.
2.M
any
staf
fexpre
ssed
conce
rns
ove
rits
real
valu
ein
pra
ctic
e.
3.A
lack
of
unifo
rmity
in
term
sof
role
s,
resp
onsi
bili
ties,
docu
menta
tion
and
issu
es
surr
oundin
gtim
ing
mad
e
imple
menta
tion
chal
lengi
ng.
4.T
hey
call
for
stan
dar
dis
atio
nof
the
docu
menta
tion.
5.G
reat
er
clar
ity
surr
oundin
g
role
sneeds
tobe
pre
sente
d.
6.Su
ggest
the
more
com
ple
x
aspect
sof
AC
Psh
ould
be
carr
ied
out
by
speci
alis
ts
asoppose
dto
genera
lists
.
1.Par
tici
pan
tsfr
om
genera
lnurs
ing
hom
ese
ttin
gnot
incl
uded,nurs
es
incl
uded
were
either
menta
lheal
th
trai
ned
or
speci
alis
t
pal
liative
care
bac
kgr
ound.
2.Sa
mple
incl
uded
pro
fess
ional
sw
ith
a
par
ticu
lar
inte
rest
in
AC
P.
(continued)
Beck et al. 9
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Ruru
pet
al.(2
006)
Holla
nd
Toin
vest
igat
eth
e
pers
pect
ives
of
phys
icia
ns,
nurs
es
and
fam
ilies
tow
ards
EO
LC
deci
sion
mak
ing
for
people
with
dem
entia.
Quan
tita
tive
appro
ach
usi
ng
a
15-p
oin
tse
lf-
adm
inis
tere
d
quest
ionnai
re.
32
nurs
ing
hom
es
agre
ed
topar
tici
pat
e.
Pat
ients
(n¼
190)
Phy
sici
ans
(n¼
75).
Nurs
es
(n¼
178).
Fam
ilies
(n¼
136)
1.In
genera
lpro
fess
ional
staf
f
and
fam
ilies
agre
eon
man
y
aspect
sof
EO
Ldeci
sion
mak
ing
for
people
with
dem
entia,
how
ever
in
som
eca
ses
the
actu
al
outc
om
es
may
diff
er.
2.D
iffere
nce
sin
relig
ious
belie
fsan
dpers
pect
ive
of
the
pat
ient
hav
ean
impac
t
that
lead
todiff
ere
nt
attitu
des
tow
ards
EO
L
deci
sions.
3.Phy
sici
ans
should
talk
openly
and
honest
lyab
out
EO
Ldeci
sions.
4.Phy
sici
ans
need
tobe
awar
eof
influ
ence
son
attitu
des
and
inco
rpora
te
these
into
their
appro
ach.
1.T
here
was
ala
rge
em
phas
ispla
ced
on
one
clin
ical
aspect
ofA
CP,
the
deci
sion
tofo
rgo
arti
ficia
l
hydra
tion.
2.T
he
use
of
ase
lf-
desi
gned
surv
ey
com
pri
sing
of
scenar
ios
may
impede
the
tran
sfera
bili
tyof
findin
gs.
(continued)
10 Dementia 0(0)
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Shar
pet
al.(2
013)
UK
Toin
vest
igat
eth
e
attitu
des
of
the
public
and
heal
thca
re
pro
fess
ional
sto
AC
Pdis
cuss
ions
with
afr
ailan
d
eld
erl
ypopula
tion.
Syst
em
atic
litera
ture
revi
ew.
26
arti
cles
were
syst
em
atic
ally
revi
ewed.Q
uan
tita
tive
(n¼
9)
Qual
itat
ive
(n¼
15)
and
mix
ed
meth
ods
(n¼
2).
1.T
he
maj
ori
tyof
eld
erl
y
people
would
welc
om
eth
e
opport
unity
todis
cuss
EO
LC
issu
es,
yet
only
a
smal
lm
inori
tyis
bein
g
give
nth
eopport
unit
y
curr
ently.
2.G
Ps
felt
itw
asth
eir
resp
onsi
bili
tyto
initia
te
dis
cuss
ions
but
felt
const
rain
ed
by
tim
e
pre
ssure
san
dth
ela
ckofa
pre
cipitat
ing
event.
3.Id
entifie
da
wid
era
nge
of
bar
riers
but
em
phas
ised
the
role
of
the
fam
ily,
pas
sive
resi
stan
ceof
this
popula
tion
and
unce
rtai
nty
inre
lation
topro
gnost
ics.
4.T
hey
call
for
furt
her
rese
arch
toid
entify
effect
ive
of
enga
ging
this
popula
tion
ineffect
ive
dia
logu
ere
gard
ing
EO
LC
issu
es.
1.T
his
revi
ew
consi
sted
of
em
pir
ical
studie
s
whose
par
tici
pan
ts
were
desc
ribed
as
frai
leld
erl
y,but
was
not
rest
rict
ed
to
people
with
dem
entia
inth
e
nurs
ing
hom
e
sett
ing.
2.Pote
ntial
for
auth
or’s
inte
rpre
tations
to
be
pre
sent
inth
e
revi
ew.
(continued)
Beck et al. 11
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Stew
art
et
al.
(2011)
UK
Toexplo
revi
ews
on
AC
Pin
care
hom
es
for
old
er
people
.
Qual
itat
ive
appro
ach
usi
ng
sem
i-st
ruct
ure
d
inte
rvie
ws.
Staf
fre
cruited
from
34
care
hom
es
inth
eU
K.
Car
ehom
em
anag
ers
(n¼
33).
Nurs
es
(n¼
18).
Dis
tric
t
nurs
es
(n¼
10).
Car
e
assi
stan
ts(n¼
29)
and
fam
ilies
(n¼
15).
1.St
aff
report
ed
that
they
perc
eiv
ed
AC
Ppro
mote
d
resp
ect
for
the
wis
hes
of
the
resi
dent.
2.D
iscu
ssio
ns
should
be
com
mence
dear
lyin
the
dis
eas
etr
aject
ory
due
to
cogn
itiv
edecl
ine.
3.Fu
rther
rese
arch
should
addre
ssfin
din
gth
eoptim
al
tim
ean
denvi
ronm
ent
to
illic
itth
evi
ews
of
resi
dents
.
4.T
here
isst
illre
luct
ance
by
som
ere
sidents
and
staf
fto
dis
cuss
EO
LC
issu
es.
1.St
udy
rest
rict
ed
to
one
geogr
aphic
al
area.
2.G
Ps
were
not
incl
uded
inth
e
sam
ple
desp
ite
bein
gin
tegr
alto
the
pro
cess
Inth
eU
K.
3.T
he
use
of
one
par
ticu
lar
exam
ple
of
AC
P(p
refe
rred
pri
ori
ties
for
care
)
may
limit
the
tran
sfera
bili
tyof
resu
lts.
4.T
hey
found
that
staf
f
had
adiff
iculty
with
AC
Pdue
toth
eir
cultura
lbelie
fs,
how
ever
they
faile
d
toexplo
reth
is
furt
her.
(continued)
12 Dementia 0(0)
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Thune-B
oyl
eet
al.
(2010)
UK
Toco
llect
dat
ato
info
rmth
e
dev
elo
pm
ent
of
an
inte
rvention
for
end-o
f-lif
eca
refo
r
people
with
dem
entia.
Qual
itat
ive
appro
ach
usi
ng
sem
i-st
ruct
ure
d
inte
rvie
ws.
Staf
fre
cruited
purp
ose
fully
(n¼
21)
from
hosp
ital
and
nurs
ing
hom
ese
ttin
gs.
Hosp
ital
nurs
e(n¼
5),
hosp
ital
doct
ors
(n¼
4),
GPs
(n¼
1),
Speech
thera
pis
t
(n¼
1),
Soci
alw
ork
er
(n¼
1),
Nurs
ing
hom
e
man
agers
(n¼
2),
Nurs
ing
hom
enurs
es
(n¼
2)
and
Nurs
ing
hom
eca
rers
(n¼
4).
1.C
om
fort
care
may
not
be
acce
pte
dunle
ssdeat
his
imm
inent.
2.Evi
dence
sugg
est
sth
at
resp
onsi
bili
tyfo
rend-o
f-
life
treat
ment
deci
sions
oft
en
rest
sw
ith
fam
ilies.
3.Pat
ients
with
adva
nce
dem
entia
are
atri
skof
ove
ror
under
treat
ment
atth
eend
of
life.
4.T
here
isa
need
for
trai
nin
g
heal
thca
repro
fess
ional
sin
rela
tion
toend-o
f-lif
eca
re
issu
es
for
people
with
dem
entia.
1.Em
phas
ison
the
clin
ical
aspect
sof
AC
P.
2.Em
phas
ison
end-o
f-
life
care
phas
e.
3.Sa
mple
size
sfo
r
par
tici
pan
tgr
oups
smal
l.
van
der
Steen
et
al.
(2014)
Holla
nd
&B
elg
ium
Toid
entify
the
fact
ors
asso
ciat
ed
with
the
initia
tion
ofA
CP
for
people
with
dem
entia.
Syst
em
atic
litera
ture
revi
ew
33
arti
cles
incl
uded
in
revi
ewse
lect
ed
usi
ng
syst
em
atic
appro
ach
report
ing
on
29
singl
e
studie
s.
1.C
oncl
udes
that
pro
fess
ional
staf
fm
ay
initia
teA
CP
ear
lyif
there
are
stra
tegi
es
inpla
ceth
at
consi
der
tim
ing,
relu
ctan
ce
or
rece
ptive
ness
toth
e
pro
cess
and
are
pat
ient
centr
ed.
2.Fu
ture
inte
rventions
should
reco
gnis
eth
e
com
ple
xity
of
the
long-
term
care
sect
or
and
the
pers
onal
fact
ors
invo
lved
inin
itia
ting
the
pro
cess
.
1.A
cknow
ledge
ment
that
there
was
a
pau
city
of
studie
s
revi
ewed
whic
h
looke
dat
staf
f
pers
pect
ives.
2.Pote
ntial
for
auth
or’s
inte
rpre
tations
to
be
pre
sent
inth
e
revi
ew.
3.T
hey
did
not
syst
em
atic
ally
judge
the
qual
ity
of
studie
san
d
acknow
ledge
dth
is
asa
limitat
ion.
(continued)
Beck et al. 13
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Van
derv
oort
et
al.
(2014)
Belg
ium
Toexam
ine
the
exte
nt
tow
hic
h
pro
fess
ional
staf
f
and
rela
tive
sar
e
info
rmed
about
AC
P,A
CD
and
phys
icia
nord
ers
for
people
dyi
ng
with
dem
entia
inth
e
long-
term
care
sect
or.
The
leve
lof
congr
uence
rega
rdin
gth
e
conte
nt
of
the
afore
mentioned
betw
een
staf
fan
d
fam
ilies
was
also
meas
ure
d.
Quan
tita
tive
appro
ach
usi
ng
self-
adm
inis
tere
d
quest
ionnai
res
in
are
trosp
ect
ive,
nat
ionw
ide
post
-
mort
em
surv
ey.
Par
tici
pan
tsw
ere
recr
uited
usi
ng
random
clust
er
sam
plin
g
tech
niq
ue
from
dat
a
obta
ined
from
pre
vious
study
inth
ear
ea.
Fam
ilyphy
sici
ans
(n¼
120),
nurs
es
(n¼
198)
and
rela
tive
s
(n¼
101)
recr
uited
from
69
nurs
ing
hom
es.
1.C
om
munic
atio
nre
gard
ing
futu
reca
reis
limited,an
d
deci
sions
are
oft
en
not
mad
ejo
intly
betw
een
all
par
ties.
2.Fo
und
that
tim
ely
com
munic
atio
nis
oft
en
not
initia
ted,a
nd
rais
es
the
import
ance
of
begi
nnin
g
the
com
munic
atio
n
pro
cess
rega
rdin
gEO
LC
asear
lyin
the
dis
eas
e
traj
ect
ory
asposs
ible
.
3.C
om
munic
atio
nis
oft
en
staf
for
fam
ilydri
ven
as
oppose
dto
pat
ient.
4.T
he
conte
nt
of
adva
nce
d
dis
cuss
ions
needs
to
refle
ctth
ele
velof
com
ple
xity
invo
lved
inth
e
care
of
resi
dents
dyi
ng
with
dem
entia
inth
elo
ng-
term
care
sect
or.
1.Se
lf-re
port
ed
quest
ionnai
res
utilis
ed
pre
senting
pote
ntial
bia
sto
resu
lts.
2.Se
lf-desi
gned
ele
ments
to
quest
ionnai
refo
r
pro
fess
ional
s.
3.R
etr
osp
ect
ive
in
nat
ure
soth
e
pas
sage
of
tim
em
ay
impac
tupon
resu
lts.
(continued)
14 Dementia 0(0)
Tab
le2.
Continued.
Auth
or,
year
&
loca
tion
Aim
sD
esi
gnSa
mple
Key
findin
gsLim
itat
ions
Yeun-S
imJe
ong
et
al.(2
007)
Aust
ralia
Toas
sess
the
curr
ent
pra
ctic
eof
AC
P.To
desc
ribe
the
role
of
speci
alis
tnurs
ing
role
and
the
impac
t
and
experi
ence
on
those
invo
lved.
Qual
itat
ive
meth
od
usi
ng
aca
se
study
appro
ach
utilis
ing
par
tici
pan
t
obse
rvat
ion.
Phas
e1:Sp
eci
alis
tnurs
e
purp
osi
vely
sele
cted
for
study
(n¼
1)
Phas
e2:N
urs
ing
staf
f
from
the
long-
term
care
sect
or
(n¼
8)
recr
uited
purp
osi
vely
by
asp
eci
alis
tnurs
ein
AC
Pre
cruited
for
phas
e1
of
the
study.
1.R
eco
gnis
es
the
import
ance
ofensu
ring
staf
fis
awar
eof
the
dis
tinct
ions
betw
een
euth
anas
ia,as
sist
ed
suic
ide,no
CPR
and
AC
D.
2.H
ighlig
hts
the
role
of
the
speci
alis
tnurs
ein
this
sett
ing.
This
nurs
ehas
a
role
topla
yin
help
ing
resi
dents
and
fam
ilies
reco
rdth
eir
wis
hes
to
achie
vea
dig
nifi
ed
deat
h.
3.A
sth
epopula
tion
ages,
reso
lution
will
need
to
achie
vesu
rroundin
gA
CP
and
AC
D.
1.Par
tici
pan
tin
phas
e
one
was
from
very
speci
alis
tro
le
there
fore
applic
abili
tyto
wid
er
sett
ing
is
quest
ionab
le.
2.T
he
study
did
not
incl
ude
oth
er
par
tici
pan
tssu
chas
hom
em
anag
ers
,
care
staf
for
GP’s,al
l
of
whom
are
inte
gral
toth
e
pro
cess
.
3.T
he
modelof
care
use
dto
underp
in
the
inte
rvention
is
quest
ionab
lefo
r
people
with
dem
entia
inoth
er
sett
ings
.
Beck et al. 15
Tab
le3.
Them
es
with
corr
esp
ondin
gca
tego
ries.
Them
es
Import
ance
of
ear
ly
inte
grat
ion
and
pla
nnin
g
for
pal
liative
care
indem
entia
HC
P’s
eth
ical
and
mora
lco
nce
rns
rega
rdin
gA
CP
Com
munic
atio
n
chal
lenge
sw
hen
inte
ract
ing
with
the
pers
on
with
dem
entia
and
their
fam
ilies
HC
Ps’
need
for
educa
tion,tr
ainin
g&
know
ledge
Cat
ego
ries
Unpre
dic
table
dis
eas
e
traj
ect
ory
Johnst
on;Lac
ey;St
ewar
t;T
hune-
Boyl
e;va
nder
Steen.
Denin
g;va
nder
Steen.
Ear
lyin
terv
ention
Denin
g;R
obin
son;va
nder
Steen;
Yeun-S
imJe
ong.
Dis
com
fort
/R
elu
ctan
ceC
aval
ieri
;Fr
ogg
att;
Liv
ings
ton;
Robin
son.
Deci
sion
mak
ing
Cav
alie
ri;D
enin
g;Fr
ogg
att;
Lac
ey;
Robin
son;R
uru
p;Sh
arp;St
ew
art;
Thune-B
oyl
e;Van
derv
oort
.
Fals
epro
mis
eD
enin
g;Fr
oga
tt;Lac
ey;Liv
ings
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16 Dementia 0(0)
Indicator may assist HCPs in terms of indicating declining health of people with dementia intheir care.
Despite the recognition by Vandervoort et al. (2014) that the degenerative nature ofdementia can be expected, five studies alluded to the unpredictable disease trajectory as abarrier to ACP (Johnston et al., 2014; Lacey, 2006; Stewart et al., 2011; Thune-Boyle et al.,2010; van der Steen et al., 2014). It was found that HCPs viewed this as a barrier to bothpalliative care and the subsequent initiation of ACP (van der Steen et al., 2014). van derSteen et al. (2014) argued that if staff had increased awareness of the disease trajectory, thiswould facilitate the recognition for early integration between gerontology and palliative care.
The findings from the literature indicated that there is still the need for HCPs to recognisethe importance of unification between the two presently distinct disciplines of gerontologyand palliative care. It can be argued that ACP and the palliative approach are conceptuallylinked (Hertogh, 2006; van der Steen et al., 2013), therefore early integration of the latter isrequired in order for the former to be possible.
HCP’s ethical and moral concerns regarding ACP. It was evident from the literature reviewed thatHCPs perspectives towards ACP were influenced by moral and ethical concerns. Suchconcerns included presumptions regarding capacity of the person with dementia to engagein ACP; the impact of the increased role of the family in the decision making process; thefalse promise HCPs perceived may be created by ACP and the influence of religious andcultural beliefs of the HCPs and the beliefs of those in their care.
van der Steen et al.’s (2014) systematic review on the factors associated with the initiationof ACP, noted that HCPs perspective had a direct influence upon whether ACP was initiatedor not. Froggatt et al. (2009) in her UK study, examining the practice and perspectives ofnursing home managers, found that staff faced a sense of ‘discomfort’ in relation to ACP.This sense of discomfort was also cited in other studies as ‘reluctance’ (Cavalieri, Latif,Ciesielski, Ciervo, & Forman, 2002) or ‘reserve’ (Robinson et al., 2012b). According toLivingston et al. (2012) some possible reasons for this discomfort were a hesitancy todiscuss death and a fear of upsetting the people in their care. This can be furthercompounded by issues relating to moral dilemmas around discussing future goals of carefocused on a palliative as opposed to a curative approach (Stewart et al., 2011). Livingstonet al. (2012) indicated that staff viewed their role as one of preservation of life, even if thiscontradicted the wishes of the person and their family. Within LTC settings, it has beenreported that staff often build up close relationships with their residents, which mayaccentuate the desire to intervene (Livingston et al., 2012), thus contributing to this senseof ‘reluctance’ (Cavalieri et al., 2002). It is important to note however that regardless ofterminology, evidence from the studies indicated that HCPs have a general reluctance toengage in ACP within this setting.
Some possible reasons for this may be related to the inextricable relationship betweenACP and capacity. The majority of studies reviewed indicated concern by HCPs aboutcapacity issues for people with dementia (n¼ 10). For example, Cavalieri et al. (2002) intheir US study involving physicians found that HCPs ‘presumption’ surrounding capacity ofpeople with dementia prevented them from initiating and engaging in the process. This wasespecially relevant as physicians in the study were asked regarding their views in relation topeople with mild to moderate dementia. Robinson et al. (2012b) also found that staff wereuncomfortable about decision-making for residents whom they presumed lack capacity.They concluded that although staff acknowledged the potential benefits of ACP for
Beck et al. 17
people with dementia, they had concerns that the perceived loss of capacity hindered theability of the person to meaningfully engage. In fact Froggatt et al. (2009) concluded thatmany nursing home managers cited dementia itself as a barrier to participation in ACPdiscussions.
From the studies reviewed it was found that HCP’s reported other ethical concerns suchas the ability to implement patients and family wishes expressed in the ACP, if paradoxicallythese are in conflict with the best interests of the person (Rurup, Onwuteaka-Philipsen,Pasman, Ribbe, & van der Wal, 2006). Many professionals referred to the false promisethey felt was created by ACP. A significant proportion of studies reviewed (n¼ 9) found staffattitudes to ACP were influenced by the concern that they may be unable to honour what theperson may have wanted. For example Stewart et al. (2011) referred to the ‘false sense ofexpectation’ (p. 333) that may be created. In addition Rurup et al. (2006) found that 78% ofrelatives felt ACP would always be followed, as opposed to 44% of the medical staff. It couldbe argued that such disparity was influenced by the realisation by HCPs that oftencontextual issues and availability of an appropriate level of care underpinned decisionssurrounding future care (Froggatt et al., 2009; Rurup et al., 2006). It was important tonote that the care home context varied greatly across the study settings in relation notonly to the level of care provided but also in terms of legislative and the wider health caresystem. Several UK studies indicated that the failure to comply with the person’s plans werecaused by failings within the health care system, as opposed to a failure of the ACP processitself (Froggatt et al., 2009; Livingston et al., 2012; Robinson et al., 2012b; Stewart et al.,2012).
It was also evident from several of the empirical studies that religion was an importantfactor which influenced staff’s perspective and practice for ACP (Livingston et al., 2012;Rurup et al., 2006; Stewart et al., 2011; Thune-Boyle et al., 2010). However, few studiesfocused specifically on the influence of religious or spiritual beliefs as a barrier to theimplementation of ACP. Four studies reviewed dealt with the impact of religion directly,with one acknowledging explicitly the subsequent effect on the attitude and practice of HCPsin relation to end-of-life care decision making (Rurup et al., 2006). The findings from the twoUK studies indicated that whilst there was reserve in implementing ACP based on religiousbeliefs, there was a failure to explore or discuss these aspects (Stewart et al., 2011; Thune-Boyle et al., 2010). Interestingly this aspect was explored in further detail within studiesconducted in Holland and Belgium. A possible reason for this may be related to ethicalchallenging interventions, such as physician-assisted death (Vandervoort et al., 2014; Rurupet al., 2006) which are permissible within these countries.
The studies reviewed recognised the integral role that families play, however it becameevident that HCPs did not always view this in positive terms. The majority of studies (n¼ 11)suggested family involvement in the process of ACP often complicated rather than facilitatedthe process. Sharp et al. (2013) found that family issues were cited as the most commonbarrier to the implementation of ACP for frail and older individuals. Similar findings werenoted in other studies (Johnston et al., 2014; Lacey 2006; Livingston et al., 2012; Rurupet al., 2006; Stewart et al., 2011; Vandervoort et al., 2014; Yeun-Sim Jeong, Higgins, &McMillian, 2007). Lacey (2006) in their US study examining the role of social workerssuggested that a significant proportion of older adults wanted their family members tomake decisions on their behalf, should they lose capacity. This is despite evidence fromthe wider literature that the family’s views and those of the person with dementia werenot always consistent (Black et al., 2009). Another study of nursing home managers in the
18 Dementia 0(0)
UK identified that 56% of respondents (n¼ 119) referred to the impact of ‘‘family issues’’(Froggatt et al., 2009, p. 335). These family issues included not only their willingness andability to participate in ACP discussions, but also differences in family dynamics. Froggattet al. (2009) suggested that family dynamics directly influenced the decision making process.
Within the UK context there appeared to be a clear focus on the role of the family carer.This is important in light of the current UK the Mental Capacity Act 2005 which protectsthe role of the family and encompasses the ‘lasting power of attorney’ for health caredecisions. This allows the appointment of people to make heath care decisions on behalfof others should they lose capacity. Therefore within the UK studies there was a tendency topromote the value of the role of the family carer. For example Johnston et al. (2014)highlighted the importance of ensuring good relationships between HCPs and families,with HCPs having a better understanding of family dynamics. Whilst Dening et al. (2011)in their systematic review, highlighted the need for HCPs to provide better emotionalsupport to families, they acknowledged families lack of preparedness for their decisionmaking role.
Communication challenges when interacting with the person with dementia andthe families
Difficulties in communicating both with people with dementia and their families were oftencited as a challenge for HCPS (Cavalieri et al., 2002; Dening et al., 2011; Livingston et al.,2012; Stewart et al., 2011; Vandervoort et al., 2014). The importance of clear and opencommunication was highlighted as an essential element in the ACP process (Vandervoortet al., 2014).
Livingston et al. (2012) found that staff viewed communication difficulties with both theperson with dementia and their families as a barrier to initiation of ACP. They argued thatcentral to engagement in ACP was an awareness of dying and the need for opencommunication. The authors noted that there was still a tendency within LTC settings touse euphemisms in relation to the inevitable decline associated with dementia. They reportedthat HCPs were not having the open and honest conversations with people with dementia intheir care, citing the inability to clarify if the person truly understands.
Froggatt et al. (2009) also noted that participants often cited challenges in communicationas a barrier to engaging families and people with dementia in ACP discussions. They felt thatin there was a need for open communication to be present between the person with dementia,their families and HCPs in order to achieve a shared understanding. However anoverwhelming majority of nursing home managers (81%, n¼ 172) in the quantitativephase of this mixed methods study felt that the inability to communicate with the personwith dementia prevented this shared understanding from being achieved. Dening et al. (2011)in their systematic review concurred, indicating that HCPs were influenced bypreconceptions of the ability of the person with dementia to communicate.
Vandervoort et al. (2014) highlighted that improvements in communication are stillneeded for ACP. Their definition of ACP as an on-going process reaffirmed theimportance of effective communication (Vandervoort et al., 2014, p. 1133). The authorssuggested that the verbal aspect of ACP should be given greater significance, with a moveaway from the overreliance on a tangible document.
As indicated previously several of the studies found that HCPs experienced difficulties incommunicating with families (Froggatt et al., 2009; Livingston et al., 2012; Stewart et al.,
Beck et al. 19
2011). One study which involved an interactive training programme for HCPs, provided by apanel of experts in dementia care, demonstrated that HCPs reported a much greater degreeof comfort in terms of communicating with families in relation to ACP after they receivedthe training programme (Livingston et al., 2012).
The importance of Educating, Training and Knowledge for HCPs
From the studies it was found that improvement in HCP’s knowledge may assist them inengaging in ACP discussions. This knowledge deficit appeared to be twofold, not only withimprovements needed in relation to both awareness of the disease trajectory but also greaterunderstanding of the process of ACP itself. The findings from the studies indicated that alow knowledge base regarding dementia care was a barrier to implementing ACP in long-term settings (Livingston et al., 2012; Thune-Boyle et al., 2010). This deficit is multifacetedwith several studies (n¼ 6) concluding the need for greater awareness of the diseasetrajectory of dementia, with a specific emphasis on end-of-life care (Dening et al., 2011;Johnston et al., 2014; Lacey, 2006; Livingston et al., 2012; Stewart et al., 2011; Thune-Boyleet al., 2010). Several studies stressed that ACP is a complex process (n¼ 7) (Froggatt et al.,2009; van der Steen et al., 2014) requiring dementia-specific training (Cavalieri et al., 2002;Robinson et al., 2012b; van der Steen et al., 2014; Vandervoort et al., 2014; Yeun-Sim Jeonget al., 2007). Froggatt et al. (2009) highlighted the link between nursing home managers’knowledge in relation to end-of-life care and their subsequent confidence in delivering care.She concluded that even when managers were experienced and confident in their own skills,they had difficulties disseminating knowledge and training in relation to end-of-life care toother staff.
It is important to note the different contexts for care across different countries and healthcare systems represented in the review. Several of the settings provide what in some settingsmay be viewed as more acute care. For example, in Holland and Belgium the role ofspecialists is incorporated into their everyday approach to care, with gerontologists andpalliative care specialists working directly in the nursing home setting. This resulted instaff in such settings having a much greater awareness both in relation to dementia, andmore specifically on end-of-life care in this context (Rurup et al., 2006; Vandervoort et al.,2014). Differences were also noted from the studies in relation to who is responsible forinitiation of ACP within LTC settings. Froggatt et al. (2009) argued that this lack guidanceresulted in ambiguity in terms of responsibility. Robinson et al. (2012b) proposed that themore complex aspects of ACP should be carried out by ‘specialists’ as opposed to‘generalists’. However this may be reflective of the absence of general nurses from theirsample. Conversely however, Rurup et al. (2006) found that nurses working within LTCsetting were in a unique position of being able to see and understand the ultimateconsequences of ACP. This is similar to Livingston et al.’s (2012) study which found thatcare home staff had a distinctive and privileged insight of knowing when the person withdementia was declining in health.
Discussion
The findings from the review reinforced that the process of implementing ACP is complexfor HCPs working in LTC settings. It was evident that such complexity is underpinned bytwo interrelated dimensions: a lack of knowledge surrounding dementia itself and a lack of
20 Dementia 0(0)
clarification surrounding ACP for this distinct population. Therefore it can be argued thatimplementation of ACP is influenced by a variety of interrelated cultural, social andorganisational factors in the LTC sector. The studies indicated the influence of suchintrinsic and extrinsic factors on HCP’s perspectives regarding ACP for people withdementia.
This review provided evidence that dementia remains unrecognised by many HCP’sworking in the LTC settings as an illness that requires palliation (Livingston et al., 2012).This is despite global calls in 2004 and 2011 for improved access for older people with co-morbidities (WHO, 2004, 2011). This was echoed more recently in the European WhitePaper on optimal palliative care in dementia (van der Steen et al., 2013). The uniquedomains conceptualised within the White Paper provide a constructive framework inwhich approaches to ACP in dementia care may be understood and improved. This mayenable integration and subsequent practice to improve, resulting in a strong emphasis onanticipatory planning at an early stage. There was recognition of the need to develop adementia-specific approach to palliative care which was reinforced from the findings ofthe review. The findings also clearly demonstrated the need for the integration betweengerontology and dementia to take place earlier in the disease trajectory.
There was conflicting evidence regarding the level of guidance given to HCPs in relationto who has responsibility to initiate and lead the process of ACP. This has led to manyprofessionals, especially within the UK studies, viewing it as beneficial in theory but theresponsibility of others (Dening et al., 2011; Robinson et al., 2012b). Iliffe et al. (2013)reflected on the complexity of this by concluding the need to put the person withdementia ‘‘within a landscape of services and professional disciplines’’ (p. 1). The seamlessprovision and continuity of health care provision required for true initiation of ACP canonly be achieved if all HCPs working within this setting view it as their role.
The review highlighted that the concept of ACP within the context of dementia care canbe morally and ethically challenging resulting in a perceived ‘reluctance’ by HCPs to engage(Cavalieri et al., 2002). It was interesting to note that many of the barriers to initiationhighlighted by staff were informed by moral and ethical concerns. The evidence from thisreview highlighted that such barriers directly influenced their subsequent practice. Concernssurrounding patient’s capacity were at the core, with the majority of studies indicating thatstaff’s apprehensions were influenced by a lack of clarity on capacity. The lack of claritywithin the literature, and subsequent lack of guidance from policy in relation to whatconstitutes capacity complicates the picture. Implementation of ACP is also compoundedby the fluctuating lucidity which is often associated with some types of dementia. Staff citeddifficulties in ensuring that the process of ACP remains ever evolving, with a perceived lossof capacity associated with progression. This assumption however is challenged within asmall scale UK study carried out by Godwin and Waters (2009), which concluded thatpreconceptions regarding ability may be limiting the true ethos of ACP for people withdementia from being realised.
The impact of staff’s religious views is important in not only how they conceptualise ACP,but also in their subsequent behaviour (Livingston et al., 2012; Rurup et al., 2006). Fried,Redding, and O’Leary (2012) noted the importance of religious beliefs for guiding HCP’sperspectives on ACP. Future research in this area is needed to explore the underlyingassumptions which could inform such perspectives. These issues are of particularsignificance due to an increasing multicultural society. Conversely there is also a need forHCPs to recognise the importance of religious, spiritual and indeed cultural beliefs for
Beck et al. 21
people with dementia in their care, with particular relevance when discussing their futurewishes.
The evidence from HCPs indicated that family dynamics have significant influence on theperspectives and behaviour of staff in relation to ACP. The studies demonstrated that staffhad a concern about whether the views of family were truly reflective of the wishes of theperson. Several studies reviewed looked at the role of the family in conjunction with theperspectives of staff, thus reflective of the collaboration required between the two, yetthe evidence presented shows that HCPs often find this challenging.
The findings from the review also indicated the need for increased knowledge and trainingsurrounding dementia. This training needs to be provided to all members of the teaminvolved in the care of the person with dementia. For example there is a need for greaterrecognition that dementia is a terminal illness, and that by educating HCPs, presumptionssurrounding capacity may be clarified. Training needs to incorporate strategies which dealwith the ethical and moral concerns that staff express. It could be argued however that suchconcerns are built upon a lack of clarity about what ACP actually entails. Therefore HCPsrequire training in relation to the process of ACP specifically for people with dementia.
Conclusions
The process of ACP is promoted globally despite acknowledging that further empiricalevidence is needed to underpin it. Whilst HCPs are central to the implementation of ACPin practice, research highlights an array of personal, professional and organisationalchallenges. Such factors may have contributed to low implementation of ACP, especiallywithin the LTC sector (Dening et al., 2011).
Despite the view expressed in some studies that the LTC may be too late to begininitiation, this is exactly the stage that staff are expected to begin initiation. Both policyand literature suggest that staff still have a role to play in the revising and evolving of theACP process. The definition by Robinson et al. (2012a) clarified the integral role that staffplay within this. They are central to ensuring that the cornerstone of health care policy isrealised for people with dementia in this sector. This review highlighted the need for futureinterventions to be underpinned by the perspectives of those expected to implement theprocess.
Implications for practice
Policy states ACP should be delivered to people with dementia regardless of time or setting,yet in reality HCPs face barriers which equate to missed opportunities to enable forwardplanning to occur. In order for the aspirations of ACP to be realised for people with dementiaseveral areas need to be addressed, with perhaps the most significant being the need forintegration between gerontology and palliative care. At present these appear to be distinctdisciplines, with unification often only taking place towards the end-of-life period. Thisreview presents evidence that integration at this late stage often precludes the initiation ofACP for people with dementia. ACP would appear to be inextricably linked to the ethos ofpalliative care, therefore the adoption of the latter at an early stage is vital in order for theformer to be realised. However this unification can only be realised if HCPs working inthis setting improve their knowledge regarding dementia, with increased recognition of theultimate terminal nature of the disease trajectory. Future training needs to reflect the required
22 Dementia 0(0)
integration and address HCPs preconceptions in terms of defining and understanding thepalliative care ethos, with recognition that it should encompass much more than the end-of-life phase. Therefore future education initiatives need to incorporate the recommendationsfrom the White Paper on Optimal Palliative Care in Dementia (van der Steen et al., 2013),enabling HCPs to recognise that whilst palliative care is not synonymous with end-of-lifecare, it is an element of the final stage in an often long journey such as dementia. In order forthis to be achieved, firstly, clarification of the distinction between palliative care and end-of-life care needs to be established. Secondly, there is a need to educate staff on the principles ofpalliative care alongside dementia, considering the chronicity of dementia, thus seeking toovercome preconceptions in order to improve acceptability among HCPs. It is pre-posed thatby dealing with such misconceptions that HCPs may feel much more comfortable in adoptingand promoting the merits of a palliative approach early on in the often long andunpredictable dementia journey.
Due to the unique challenges dementia presents there is a need to provide specific andpractical training on how to implement ACP within this context, with staff being supportedto acquire the skills required to overcome many of the practicalities cited in this review asbarriers. For example, not only communication skills to deal sensitively with families, butalso strategies that may enable the person with dementia to participate meaningfully. ACPshould be approached at various stages of the disease trajectory, with initiation as early aspossible in order to optimise the opportunities for the person with dementia to truly partake.There is also a need for those in policy to ensure that continuity of care is enabled throughimprovements to access to specialist care within LTC settings. In order to alleviate theapprehensions surrounding the ‘false promise’ created by ACP as cited by HCPs, aseamless provision and access to health care services is necessary, thus enabling HCPsworking in these settings to be supported to provide the often complicated care requiredduring the end stage of dementia. Education is also needed to enable HCPs to engage withpeople with dementia and their families in the process of ACP, acknowledging the role of thefamily within this context. Due to the challenges associated with capacity established by thisreview, future implementation of ACP needs to be underpinned by models of shared decisionmaking. Interventions need to reflect the views of people with dementia, when possible, inconjunction with families and HCPs.
Future research
There is a need for the development of strategies that will address the current disparity interms of access to ACP for people with dementia in LTC settings. HCPs are integral toensuring this occurs, therefore a greater understanding of their reluctance to engage isimperative. Future research is urgently needed to develop interventions that seek toaddress the challenges faced by HCPs when implementing ACP in practice. Such need tobe informed by the perspectives of those expected to initiate it, along with the views of peoplewith dementia and their families. Therefore future initiatives need to be informed by boththeory and the perspectives of all involved. In recognition of the complexity of the ACP,future interventions need to be developed utilising the Medical Research Council’s (MRC’s)Framework for Complex Interventions (MRC, 2008). This framework consists of fourinterrelated, yet distinct phases. The perspectives of all those involved in the process ofACP in this setting need to be evident throughout all phases, from developmental stage,pilot and feasibility phases, evaluation of the intervention and lastly implementation of the
Beck et al. 23
intervention. In light of the differences that exist in terms of our health care and politicalsystems, as well as cultural distinctions, it is recommended that cross-country comparativesare undertaken. The findings of such research need to be incorporated into future policy andstrategies in order for the potential benefits of ACP for people with dementia to be realised.
Limitations
The use of a limited number of databases presupposes that there could be more evidencebeyond what is located in this review. Nevertheless 14 studies were identified, whichhighlights a young yet growing body of research in this area.
It is important to note that differences exist in the health and legal structure of differentcountries and this impedes on the transferability of the findings. This review sought toprovide an inclusive synthesis of the limited literature in the area, therefore studies ofvarying quality were included. However this allowed for a wider picture of currentknowledge to be presented (Green et al., 2006). The high degree of heterogeneity withinthe studies resulted in challenges to true synthesis of the results. A significant proportionof the studies reviewed adopted self-reporting methodological approaches, this may meanthat the findings are an underestimation of the true picture.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or
publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or
publication of this article: The first author (EB) received financial support from the Department of
Education and Learning.
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Esther-Ruth Beck, RN, graduated from Queens University Belfast in 2005 with a BSc (Hons)in Nursing Sciences. She has held clinical posts in palliative care and nursing homemanagement. She obtained her specialist nursing practice qualifications in both palliativecare and dementia care. She is currently undertaking her PhD within the Institute of Nursingand Health Research at Ulster University looking at the perspectives of health careprofessionals and families in relation to ACP for people with dementia in long-term caresettings.
Sonja McIlfatrick, RN, is a Professor of Nursing in the Institute of Nursing and HealthResearch, Ulster University and a Senior Investigator for the All-Ireland Institute ofHospice and Palliative Care. She is lead for Palliative Care Strand in Ulster Universityand leads on various projects focused on palliative and end-of-life care.
Felicity Hasson is a Senior Lecturer in the Institute of Nursing Research at Ulster University.A social researcher by background, she has extensive experience and knowledge of bothqualitative and quantitative research methodologies and has been involved in numerouspalliative care research studies.
26 Dementia 0(0)
Gerard Leavey is a Professor of Mental Health Services, Director of the Bamford Centre forMental Health and Wellbeing, Ulster University. In addition, he is Co-Lead for theNorthern Ireland Clinical Research network-Mental Health. He is also an HonorarySenior Lecturer with the Division of Psychiatry, University College London where hecontinues to collaborate on various Dementia projects such as the ESRC-NIHR funded5-year research programme on agitation in dementia.
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