Diagnos ic Assessmen & P ognosis
Changes in place o dea h among people wi h demen ia in Finland
be ween 1998 and 2013: A egis e s udy
Yaeko Masuchi
a,b,
*, Ma ja Jylh€
a
a
, Jani Rai anen
a
, Ma i Aal onen
a
a
Facul y o Social Sciences and Ge on ology Resea ch Cen e, Uni e si y o Tampe e, Tampe e, Finland
b
Cali o nia Sou hland Chap e , Alzheime ’s Associa ion, Los Angeles, CA, USA
Abs ac In oduc ion: The place o dea h is sugges ed as a quali y indica o o end-o -li e ca e. We in es-
iga ed how he place o dea h changed be ween 1998 and 2013 among people wi h demen ia.
Me hods: Da a om he Finnish na ional heal h and social ca e egis e s we e ex ac ed o all peo-
ple wi h demen ia, who had died a 70 yea s old du ing hese yea s (N5140,034). Desc ip i e anal-
ysis and logis ic eg ession analysis we e conduc ed.
Resul s: In 2013, he mos common place o dea h was he p ima y ca e hospi al (39.8%), ollowed
by nu sing home and shel e ed housing wi h 24-hou assis ance (20.5%). Dying a home was a e
(8.1%). Du ing he s udy yea s, dying in he hospi al dec eased while dying in shel e ed housing
wi h 24-hou assis ance inc eased.
Discussion: The place o dea h o people wi h demen ia has changed om ins i u ions o nonins i-
u ional ca e acili ies. Fu he esea ch on nonins i u ional ca e acili ies’ abili y o p o ide high-
quali y ca e a he end o li e is needed.
Ó2017 The Au ho s. Published by Else ie Inc. on behal o he Alzheime ’s Associa ion. This is an
open access a icle unde he CC BY-NC-ND license (h p://c ea i ecommons.o g/licenses/by-nc-nd/
4.0/).
Keywo ds: Demen ia; End-o -li e ca e; Place o dea h; Long- e m ca e se ing; Shel e ed housing wi h 24-hou assis ance
1. In oduc ion
Demen ia has become an impo an cause o disabili y
and dea h wo ldwide, mainly because o aging popula ions
and inc easing longe i y [1–3]. In demen ia, he las phase
o li e is usually domina ed by a high le el o dependency
due o loss o he abili y o mo e, communica e, and e en
ea and symp oms such as diso ien a ion, es lessness, o
agg ession [3–5]. The ca e si e ha o e s end-o -li e ca e
o he people wi h demen ia mus ha e s a s wi h special
skills and knowledge o demen ia ca e o espond o
pa ien s’ needs. The place o dea h is an indica o o heal h
and social ca e u iliza ion a he end-o -li e and he ype
o ca e ha is a ailable o pa ien s nea he ime o dea h
[6–9].
In Finland, he mo ali y a e due o demen ia has mo e
han doubled o e he pas decades, a end ha shows no
decele a ion [10]. Resea ch indica es ha demen ia is an
impo an con ibu o o he use o long- e m ca e (LTC)
[11]. The e o e, esea che s p edic ha he need o LTC
especially a he end o li e will inc ease [12]. In Finland,
as in se e al o he coun ies, longe i y is inc easing, and
ca e sys ems a e unde going e o m simul aneously. Finland,
he same as o he No dic coun ies and UK, o e s uni e sal
co e age o a wide- anging a ie y o heal h and social se -
ices. A he unding s uc u e, he Finnish sys em is mo e de-
cen alized and mixed han o he No dic coun ies. Heal h
and social se ices a e unded mainly by axes, and pa ly
by use ees. Public p ima y heal h ca e is p o ided by
municipal heal h cen e s ( he same as p ima y ca e hospi al
in he o he coun ies) [13]. Municipali ies a e esponsible
o LTC, which hey can ei he o e in hei own ca e acil-
i ies o con ac ed h ough o he ca e p o ide s. The ecen
LTC e o m has shi ed ound- he-clock LTC om
All au ho s decla e no con lic o in e es .
*Co esponding au ho . Tel.: 11-760-685-3477.
E-mail add ess: [email p o ec ed]
h ps://doi.o g/10.1016/j.dadm.2017.10.006
2352-8729/ Ó2017 The Au ho s. Published by Else ie Inc. on behal o he Alzheime ’s Associa ion. This is an open access a icle unde he CC BY-NC-ND
license (h p://c ea i ecommons.o g/licenses/by-nc-nd/4.0/).
Alzheime ’s & Demen ia: Diagnosis, Assessmen & Disease Moni o ing 10 (2018) 86-93
ins i u ional ca e, which was o e ed in nu sing homes and in
p ima y ca e hospi als (heal h cen e s in Finland), o nonin-
s i u ional LTC, which is o e ed in shel e ed housing wi h
24-hou assis ance, o p i a e homes and now de ined as
he las esiden ial place ill dea h [14–16]. Shel e ed
housing wi h 24-hou assis ance in Finland is a a he new
sys em, which p o ides mo e home-like en i onmen ac-
co ding o he pe cep ion ha he people wi h demen ia eel
com o able a home mo e han a he ins i u ion o he hos-
pi al [17–21]. The numbe o shel e ed housing wi h 24-
hou assis ance acili ies has inc eased no ably in he las
15 yea s [14,15]. In compa ison o ins i u ional ca e
acili ies, which a e mos ly publicly owned and unded by
ax e enues and egula ed use ees, shel e ed housing
wi h 24-hou assis ance is mo e equen ly owned by p i a e
en e p ises and no - o -p o i NGOs [14,22]. Use ees in
shel e ed housing a e un egula ed and a y conside ably
be ween municipali ies and di e en acili ies [22].
Al hough he numbe o people wi h demen ia has
inc eased and he ca e sys em has changed, he e a e no p e-
ious s udies desc ibing he places o dea h o people wi h
demen ia in Finland, no is he e any in o ma ion abou
how hese ha e changed in he pas decades a e he LTC e-
o m. De ailed in o ma ion on he place o dea h o people
wi h demen ia is highly needed o he planning o end-o -
li e ca e o people wi h demen ia. In his s udy, we analyze
he change o e ime in end-o -li e ca e o people wi h de-
men ia, using he place o dea h as an indica o .
The esea ch ques ions a e as ollows:
(1) Whe e did people diagnosed wi h demen ia die in
Finland be ween 1998 and 2013?
(2) How do he places o dea h di e be ween he age
g oups o 70–79, 80–89, and 901, and be ween
men and women?
(3) How ha e places o dea h changed among olde peo-
ple diagnosed wi h demen ia be ween 1998 and
2013?
2. Me hods
Da a on people wi h demen ia and hei places o dea h
we e ex ac ed om he Finnish na ional heal h and social
ca e egis e s. The da a se included in o ma ion on all pe -
sons who died a he age o 70 yea s o olde in 1998 and be-
ween 2002 and 2013 and a 40% andom sample o all
pe sons who died a he age o 70 yea s o olde be ween
1999 and 2001 (N5502656). People wi h demen ia
(N5140034) we e iden i ied om The Causes o Dea h eg-
is e (S a is ics Finland) and om The Ca e Regis e o
Heal h Ca e and The Ca e Regis e o Social Wel a e
(The Na ional Ins i u e o Heal h and Wel a e) wi h
ICD10 codes F00 (demen ia in Alzheime ’s disease), F01
( ascula demen ia), F02 (demen ia in o he diseases), F03
(unspeci ied demen ia), o G30 (Alzheime ’s disease).
The in o ma ion o ca e use was d awn om The Ca e
Regis e o Heal h Ca e and The Ca e Regis e o Social
Wel a e. The ca e egis e s include in o ma ion on he use
o heal h cen e hospi als (i.e., p ima y ca e hospi al in he
o he coun ies), and p i a e, dis ic , gene al, and uni e si y
hospi als. Heal h cen e s mainly o e p ima y heal h ca e,
bu hey ha e also o e ed LTC in hei inpa ien wa ds.
Howe e , he use o heal h cen e s o long- e m ca e has
become less equen in ecen yea s. LTC acili ies include
nu sing homes (ins i u ional LTC) and shel e ed housing
wi h 24-hou assis ance (housing se ice, nonins i u ional
LTC). In o ma ion o shel e ed housing wi h 24-hou assis-
ance was a ailable in he egis e s om 2000 onwa d.
S udy was done as pa o he esea ch p ojec New Dy-
namics o Longe i y and he Changing Needs o Se ices
(COCTEL) a he Uni e si y o Tampe e, Facul y o Social
Sciences, and Ge on ology Resea ch Cen e . Pe mission o
access egis e da a was ob ained om each egis e o icial.
In o ma ion om di e en na ional egis e s was linked wi h
using he pe sonal iden i y codes ha emain unchanged
h ough people’s li es. The linking o da a was done by S a-
is ics Finland, and he au ho s had no access o pe sonal
iden i y codes. The esea ch plan was app o ed by he E hics
Commi ee o he Pi kanmaa Hospi al Dis ic .
Fi s , he s udy popula ion and he age and gende dis i-
bu ion in di e en s udy yea s we e desc ibed. Then, he
equency o di e en places o dea h was analyzed wi h
c oss- abula ions wi h age a he ime o dea h and gende .
The associa ion o place o dea h wi h age, gende , and he
yea o dea h was analyzed wi h bina y logis ic eg ession
models. The analyses we e adjus ed o o he diagnoses
d awn om he ca e egis e s and causes o dea h egis e .
Da a we e analyzed using IBM SPSS s a is ics Windows
e sion 22 (IBM Co p., A monk, NY, USA).
Place o dea h was ca ego ized as home, specialized ca e
hospi als (including p i a e, dis ic , gene al, and uni e si y
hospi als), p ima y ca e hospi al (i.e., heal h cen e in
Finland), nu sing home (ins i u ional LTC), and shel e ed
housing wi h 24-hou assis ance (nonins i u ional LTC).
The independen a iables we e gende , age g oup a he
dea h (70–79, 80–89, and 901), yea o dea h om 1998 o
2013, and o he diagnoses (cance , diabe es, psychosis,
dep essi e synd omes o o he men al heal h diso de s, Pa -
kinson disease o o he neu ological diseases, ch onic
as hma and ch onic obs uc i e pulmona y disease o o he
espi a o y diseases, a h i is o os eoa h i is, hip ac u e,
s oke, ischemic and o he hea disease excluding heuma ic
and alcoholic diseases, and o he diseases o he ci cula o y
sys em).
3. Resul s
The equency o demen ia among people who died a he
age o 70 yea s o olde inc eased om 22% o 33.9% be-
ween he yea s 1998 and 2013. The mean age a dea h o
people wi h demen ia inc eased om 85.4 yea s o 87.0 yea s
(Table 1). Du ing he whole s udy pe iod, 67.4%
(N594,345) o he s udy popula ion was women, whose
Y. Masuchi e al. / Alzheime ’s & Demen ia: Diagnosis, Assessmen & Disease Moni o ing 10 (2018) 86-93 87
mean age a he ime o dea h was 87.2 yea s old (no shown
in he able), wi h he maximum age being 111 yea s. The
mean age o men was 84.0 (no shown in he able), wi h a
maximum o 109 yea s.
The p opo ion o pe sons dying a he age o 90 yea s o
o e ou o all hose who died inc eased om 27.1% o
36.1% du ing he yea s o s udy (Table 1). Concu en ly,
he p opo ion o hose who died a he age be ween 70
and 79 yea s dec eased. The inc ease in he oldes age g oup
was mos no able in women: in 2013, 43.1% (31.4% in
1998–2000) o women and 23.1% o men (17.2% in 1998–
2000) died a he age o 90 yea s o olde .
The p ima y ca e hospi al was he mos common place o
dea h o people aged 70 yea s wi h demen ia in Finland:
39.8% o dea hs occu ed he e in 2013 (Table 2). The sec-
ond mos common place was shel e ed housing wi h 24-
hou assis ance whe e app oxima ely e e y ou h pe son
wi h demen ia died (24.7%). App oxima ely e e y i h pe -
son wi h demen ia died in a nu sing home (20.5%). Fewe
han e e y en h died a home (8.1%). Adding specialized
ca e hospi als o p ima y ca e hospi al, 46.7% o he people
wi h demen ia died in hospi al. When nu sing home and
shel e ed housing wi h 24-hou assis ance we e o aled up,
45.2% died in an LTC acili y.
Dying a home o hospi al was mo e common o men and
hose who died a he age o 70–79 yea s han o women and
olde age g oups, while he oldes pa ien s and women died
mo e o en a an LTC acili y (Table 2). This inding did no
change when he yea o dea h and he o he diagnoses we e
aken in o accoun in he logis ic eg ession analysis
(Table 3).
Dying in hospi al was common ye dec eased no ably
du ing he s udy yea s: when specialized ca e hospi als
and p ima y ca e hospi al we e o aled up, 71.2% in 1998,
bu 46.7% in 2013, died in hospi al. This dec ease was
caused by he dec ease in p ima y ca e hospi al dea hs
(64.0% in 1998–2000 and 39.8% in 2013). The dec ease
applied o all age g oups (Fig. 1) and bo h gende s (men;
74.3%–54.9%, women; 70.0%–42.2%, espec i ely, no
shown in he ables). Dea h a specialized ca e hospi als
did no change du ing he s udy pe iod (7.2% in 1998–
2000, 6.9% in 2013) in any age g oup (Fig. 1), o nei he
men no women (no shown in he ables). The likelihood
o dying in a hospi al dec eased consis en ly by he s udy
yea when age, gende , and o he diagnoses we e aken
in o accoun (Table 3).
The a e o dying a home did no change no ably du ing
he s udy yea s: 7.7% in 1998 and 8.1% o olde people wi h
demen ia in 2013 died a home (Fig. 1). This was ue o
bo h gende s (men; 8.6% o 9.2%, women; 7.2% o 7.5%,
espec i ely, no shown in he ables). When age, gende ,
and o he diagnoses besides demen ia we e adjus ed o ,
he likelihood o dying a home dec eased by s udy yea s
bu inc eased again o he same le el in 2013 han in
1998–2000 (Table 3).
The mos no able change occu ed in shel e ed housing
wi h 24-hou assis ance: he p opo ion o dea hs was eigh
imes highe in 2013 (24.7%) han in 2001–2003 (2.8%)
(Fig. 1). The inc ease was highes among hose who died
a he age o 90 yea s o olde (3.4% in 2001–2003 o
27.9% in 2013), bu he inc ease was high also in o he
age g oups: in he g oup 80–89, dea hs in shel e ed housing
inc eased om 2.9% o 23.4%, and in he g oup 70–79 om
1.9% o 20.2% (Fig. 1). The inc ease also was ue o bo h
gende s, al hough highe in women ( om 3.2% o 27.9%,
no shown in he ables) han in men ( om 2.0% o 18.6%,
no shown in he ables). The equency o pa ien s dying
in a nu sing home did no change du ing he s udy pe iod
Table 1
Desc ip ion o he s udy popula ion
1998–2000 2001–2003 2004–2006 2007–2009 2010–2012 2013 To al
N*61,861 84,083 100,994 105,572 112,059 38,087 520,656
Nwi h demen ia 13,617 20,615 26,537 30,935 35,429 12,901 140,034
% wi h demen ia 22.0 24.5 26.3 29.3 31.6 33.9 27.9
Age, mean 85.4 85.6 85.8 86.2 86.7 87.0 86.0
Age g oup (%)
70–79 18.9 18.9 19.9 15.2 12.9 12.9 15.8
80–89 54.0 51.4 51.4 53.5 52.8 51.0 52.4
90127.1 29.7 30.7 31.3 34.2 36.1 31.7
Age g oup (men, %)
y
70–79 28.2 29.7 28.8 24.3 20.6 19.8 24.8
80–89 54.6 51.0 52.1 57.0 57.7 57.1 55.2
90117.2 19.3 19.2 18.7 21.7 23.1 20.0
Age g oup (women,%)
z
70–79 14.9 14.2 12.7 10.7 9.0 9.2 11.5
80–89 53.7 51.5 51.1 51.7 50.4 47.7 51.1
90131.4 34.3 36.2 37.6 40.6 43.1 37.5
*Numbe o hose who died a he age o 70 yea s o olde : all hose who died in yea s 1998 and 2002–2013, and a 40% andom sample om yea s 1999
o 2001.
y
Men N545,689.
z
Women N594,345.
Y. Masuchi e al. / Alzheime ’s & Demen ia: Diagnosis, Assessmen & Disease Moni o ing 10 (2018) 86-9388
(20.7% in 1998–2000, and 20.5% in 2013) in men o women.
The e was a sligh inc ease among he 70–79 age g oup, bu
no inc ease was obse ed among he olde age g oups. In he
mul i a ia e model, he e was no clea ime end, bu he
likelihood o dying a nu sing home was highe in yea s
2001–2003 and 2004–2012 han in he beginning o a he
end o he s udy pe iod.
4. Discussion
Hospi al has been he p edominan place o dea h o peo-
ple wi h demen ia in Finland. Dying in a p ima y ca e hospi-
al ha o e s bo h p ima y hospi al ca e and LTC is s ill
mos common, bu i has dec eased no ably as is he place
o dea h be ween 1998 and 2013. Dying in specialized
ca e hospi als was ela i ely in equen . A new o m o
LTC acili y, shel e ed housing wi h 24-hou assis ance,
was ini ia ed in 2000, which has become an impo an place
o dea h o people wi h demen ia. The p opo ion o dea hs
in a nu sing home o in a p i a e home emained unchanged.
Ou s udy showed ha end-o -li e ca e o people wi h de-
men ia is mo ing om ins i u ional ca e o nonins i u ional
LTC in Finland. The change in he se ice s uc u e ha
dec eased he ins i u ional LTC and inc eased he a ailable
nonins i u ional LTC has ine i ably in luenced his de elop-
men . One o he p ima y goals o heal h and social ca e in
Finnish policies is helping old people o s ay a home o in
a home-like en i onmen as long as possible [16]. Fu he -
mo e, when inc easing numbe s o people a e diagnosed
wi h demen ia and die wi h demen ia, he ques ion o which
place o e s he mos peace ul and high-quali y en i onmen
o he las pe iod o li e is o inc easing signi icance. S udies
imply ha he design o he physical en i onmen is an
impo an ac o in demen ia ca e [17]. Shel e ed housing
wi h 24-hou assis ance, a ca e acili y ha o e s ound-
he-clock LTC in nonins i u ional se ings, was in oduced
in he 1990s in Finland. I p o ides an en i onmen ha is
conside ed mo e home-like han ins i u ional nu sing home
[18] and can he e o e be bene icial o people wi h demen ia
[17,19–21]. Hospi al se ings a e conside ed inadequa e o
Table 2
F equency dis ibu ion o he deceased wi h demen ia a he place o dea h in 2013
Dea h place (%) Home Specialized ca e hospi als P ima y ca e hospi al Nu sing home Shel e ed housing wi h 24-hou assis ance
All 8.1 6.9 39.8 20.5 24.7
Mean age 85.5 84.5 85.8 87.3 87.5
Age g oup
70–79 9.0 9.6 43.0 18.1 20.2
80–89 8.3 7.5 41.9 18.9 23.4
9017.6 5.2 35.7 23.7 27.9
Gende
Men 9.2 9.8 45.1 17.1 18.6
Women 7.5 5.3 36.9 22.3 27.9
Table 3
The associa ion o he place o dea h wi h age, gende , and he yea o dea h among people wi h demen ia
Place o dea h All (N514,0003)
Home
(N58873)
Specialized
ca e hospi al
(N511,235)
P ima y ca e hospi al
(N576,684)
Nu sing home
(N530,609)
Shel e ed housing
wi h 24-hou
assis ance (N512,489)
OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI)
Gende (%)
Men 45,689 (32.6) Re Re Re Re Re
Women 94,345 (67.4) 0.69 (0.66–0.72)* 0.56 (0.54–0.58)* 1.10 (1.07–1.12)* 1.24 (1.20–1.27)* 1.24 (1.18–1.29)*
Age a dea h (%)
70–79 22,170 (15.8) Re Re Re Re Re
80–89 73,414 (52.4) 0.80 (0.75–0.85)* 0.73 (0.69–0.77)* 0.94 (0.91–0.97)* 1.17 (1.12–1.22)* 1.39 (1.31–1.48)*
90144,450 (31.7) 0.66 (0.62–0.70)* 0.45 (0.43–0.48)* 0.83 (0.81–0.86)* 1.58 (1.51–1.65)* 1.73 (1.63–1.85)*
Yea o dea h (%)
1998–2000 13,617 (9.7) Re Re Re Re
2001–2003 20,615 (14.7) 0.70 (0.64–0.76)* 0.99 (0.91–1.08)* 0.90 (0.86–0.95)* 1.10 (1.04–1.16)* Re
2004–2006 26,537 (19.0) 0.69 (0.64–0.75)* 1.17 (1.09–1.27)* 0.80 (0.77–0.84)* 1.05 (1.00–1.11) 1.57 (1.42–1.74)*
2007–2009 30,935 (22.1) 0.71 (0.66–0.77)* 1.09 (1.01–1.18)* 0.70 (0.67–0.73)* 1.10 (1.04–1.16)* 2.62 (2.38–2.87)*
2010–2012 35,429 (25.3) 0.85 (0.79–0.91)* 1.02 (0.95–1.11) 0.47 (0.45–0.49)* 1.16 (1.10–1.22)* 5.83 (5.34–6.36)*
2013 12,901 (9.2) 1.01 (0.92–1.10) 0.90 (0.82–0.99)* 0.34 (0.32–0.35)* 0.99 (0.93–1.05) 10.97 (10.01–12.02)*
NOTE. Odds a ios (ORs) and 95% con idence in e als wi h bina y logis ic eg ession models. S a is ically signi ican odds a ios a e wi h * ma k signi ican
a P,.05. Adjus ed o como bidi y, including cance , diabe es, psychosis, dep essi e synd omes o o he men al heal h diso de s, Pa kinson disease o o he
neu ological diseases, ch onic as hma and ch onic obs uc i e pulmona y disease o o he espi a o y diseases, a h i is o os eoa h i is, hip ac u e, s oke,
ischemic and o he hea disease excluding heuma ic and alcoholic diseases, and o he diseases o he ci cula o y sys em.
Y. Masuchi e al. / Alzheime ’s & Demen ia: Diagnosis, Assessmen & Disease Moni o ing 10 (2018) 86-93 89
end-o -li e ca e o people wi h demen ia [23]. Lehmus e al.
[24] ound ha amily membe s hough ha pa ien s in an
LTC ca e acili y (shel e ed housing wi h 24-hou assis-
ance) in Finland ecei ed highe quali y end-o -li e ca e
han hose who died in a hospi al. Thus, he dec easing num-
be o dea hs in hospi al and inc easing numbe o dea hs in
LTC acili y du ing he s udy yea s may sugges an imp o e-
men in he end-o -li e ca e se ing. E en i an inc easing
numbe o people wi h memo y diso de s li e and a e ca ed
o a hei homes [15], i s impo ance as a place o dea h did
no change. The end-o -li e ca e a he pa ien ’s own home is
alued highe han hospi al ca e [25], bu in eali y, ca ing
o people wi h demen ia a home un il he end o hei li es
may be di icul and i may ha e nega i e e ec s on in o mal
ca egi e s’ men al and physical heal h [26,27].
The places o dea h o people wi h demen ia di e be ween
coun ies, al hough he LTC se ings seem o be he mos
equen places o dea h o he people wi h demen ia in Eu-
ope and No h Ame ica [23]. In a s udy o i e Eu opean
coun ies om he ea ly 2000s, dying a home was e en a e
in he UK and he Ne he lands han in Finland. Dying in hos-
pi al was a e o people wi h demen ia in he Ne he lands bu
qui e common in he UK [9], whe e dying in hospi al was close
o he le el o hospi al dea hs in Finland. In he UK popula ion-
based p ospec i e s udy, o he oldes old (aged o e 85 yea s)
who we e communi y dwelling a yea be o e dea h, a majo i y
had cogni i e impai men (one-qua e had mild/mode a e,
one- hi d had se e e). Those oldes old mos equen ly died
a he acu e hospi al. Jus only 8% died in he communi y
[7]. The a io o dying in hospi al o people wi h demen ia in
he UK used o be one o he highes p opo ions in Eu ope
in 2003 [9]. Howe e , his end owa d hospi al dea h in de-
men ia e e sed du ing he las decade (2001–2010) [28].
The hospi al dea hs s a ed o dec ease in 2006, and esiden ial
ca e home dea hs had been inc easing (0.60% pe yea ) due o
he g owing o ca e homebed p o ision. E en hough, he hos-
pi al dea hs in UK emained a he high a io [28] and we e
abou as equen as in Finland.
Place o dea h om Alzheime ’s disease in he Uni ed
S a es also has changed in he las decades. Nu sing home
o LTC acili y is s ill mos likely he end-o -li e place be-
ween in 1999 o in 2014; howe e , du ing his pe iod, he
pe cen age o dea h in a medical acili y o nu sing home
declined. By con as , he dea h a home inc eased om
13.9% in 1999 o 24.9% in 2014 [29]. The causes behind
hose changes a e no clea , bu he epo [29] sugges ed
he in luence o inancial e ec . The inc easing numbe o
demen ia is c ucially a ec ing go e nmen budge a social
and heal h ca e expendi u e on LTC in many coun ies
[30,31]. I causes se ious p oblems in he p ac ice o social
and heal h ca e such as esul ing in lack o su icien
p o essional ca e o all pa ien s [30].
Fig. 1. The places o dea h (%) be ween 1998 and 2013. The whole s udy popula ion and age g oups o 70–79, 80–89, and 901.
Y. Masuchi e al. / Alzheime ’s & Demen ia: Diagnosis, Assessmen & Disease Moni o ing 10 (2018) 86-9390

Shel e ed housing wi h 24-hou assis ance is no wi hou
p oblems. A s udy ound ha in Finland, shel e ed housing
acili ies had a highe numbe o end-o -li e ca e ansi ions,
especially hospi al admissions, han adi ional nu sing
homes [32]. The e a e ew s udies on wha causes he end-
o -li e ca e ansi ions. Some easons could include symp-
oms ha a e oo di icul o be ea ed ou side hospi als,
such as alls, pneumonia, o hip ac u es [33,34].In
addi ion, p e ious ca e ansi ion s udies ound ha
demen ia is no always ecognized as a e minal illness
[25,35,36]. This migh cause unnecessa y hospi aliza ions
wi h agg essi e o insu icien ea men s a he end o li e
[35].
E en i shel e ed housing wi h 24-hou assis ance is
conside ed mo e home-like, in eali y, he a angemen s
a y and a e o en a he simila o ins i u ional ca e si es
in Finland. The no able di e ence be ween nu sing homes
and shel e ed housing wi h 24-hou assis ance is unding.
Ins i u ional ca e unding is s ic ly egula ed and as such
is ai ly iden ical ac oss he coun y, whe eas na ionwide
ules o unding shel e ed housing a e nonexis en leading
o a iable ees ha a e o en highe han in ins i u ional
ca e o old people hemsel es. While he en o se ice
housing is pa ly co e ed by he eimbu semen o he Social
Insu ance Ins i u ion, and he municipali y co e s mos o
se ice ees o he less a luen people, many se ices ha
a e included in nu sing home ca e ha e o be paid ou o
he esiden s’ own pocke s [22]. Mo e esea ch is needed
on he quali y o end-o -li e ca e in shel e ed housing and
o wha ex en he un egula ed use ees a ec he esiden s’
abili y o pu chase di e en se ices.
In he Uni ed S a es, hospice ca e o people wi h demen-
ia has been conside ed as e ec i ely suppo ing he main e-
nance o unc ion and com o a end o li e. An Ame ican
s udy o place o dea h among people wi h demen ia no ed
ha mos dea hs (olde han 65 yea s) occu ed in nu sing
homes (66.9%) in 2001 [27]. Howe e , pallia i e and hos-
pice ca e has become mo e common in he Uni ed S a es
han in o he coun ies, a e which dea hs a home ela ed
o demen ia inc eased o 22.8% in 2009 om 19.9% in
2000 among Medica e bene icia ies [36] and he a io o
Alzheime ’s deceden s died a home inc eased om 13.9%
in 1999 o 24.9% in 2014, wi h an addi ional 6.1% who
died in a hospice acili y in 2014 [29]. In Finland, bo h hos-
pices and hospice-like ca e a home a e a e. Acco ding o
Finnish ca e guideline, e e y heal h ca e acili y should
ha e he abili y o o e pallia i e ca e. LTC acili ies a e
also expec ed o o e end-o -li e ca e o hose who a e
dying [37]. Because o apidly inc easing longe i y in
Finland, he numbe o people dying wi h demen ia is ex-
pec ed o inc ease. Fu he esea ch should ocus on de el-
oping adequa e ca e se ings a home.
Du ing he s udy yea s, he equency o demen ia among
hose who died a he age o 70 yea s o olde inc eased
om 22.0% o 33.9%. Dea hs ela ed o demen ia we e
mo e common o women han o men. The p opo ion
o hose who died a he age o 90 yea s o olde inc eased
in bo h gende s, sugges ing ei he ha people su i e longe
wi h demen ia o ha he onse o demen ia is pos poned.
This applies especially o women, as in 2013, almos a
hal o women wi h demen ia died a he age o 90 yea s
o olde . The olde he age, he mo e o en dea h occu ed
a a LTC acili y, which is likely o lead o an inc easing
numbe o dea hs in LTC wi h inc easing longe i y. In
Finland, as in he o he No dic wel a e s a es, he esponsi-
bili y o social and heal h ca e belongs o he s a e and mu-
nicipali ies a he han he amily [38,39]. The apid inc ease
in longe i y and he numbe o pe sons wi h demen ia will
challenge he cu en ca e sys em due o he inancial
bu den [10,16]. Fu he mo e, e en i he na ional policy
emphasizes s aying a home ins ead o ound- he-clock
ca e, his may no be possible o people wi h demen ia.
Pa icula ly, he ad anced s age o demen ia equi es mo e
in ensi e ca e, which may e en ually esul in pa ien s being
ins i u ionalized [25,33].
This is he i s epo o he place o dea h o people
wi h demen ia in Finland in he con ex o a ca e policy
emphasizing nonins i u ional ca e. This analysis, using
ex ensi e na ionwide da a, p o ided a unique oppo uni y
o s udy he place o dea h and he ca e sys em in he whole
coun y. The ca e sys ems in di e en coun ies a y, and
o en, he da a used in p e ious s udies [9] ha e been based
on popula ion samples, no he whole popula ion like in
his s udy, which makes he in e na ional compa isons
p oblema ic. Howe e , his s udy has some limi a ions.
Since 2005, he Finnish cause-o -dea h s a is ics ha e
adop ed an in e na ional guideline ha limi s he use o
pneumonia as an unde lying cause o dea h in connec ion
wi h se e al ch onic diseases. Fo a pe son who dies
om pneumonia bu also su e s om ad anced demen ia,
demen ia is selec ed as he unde lying cause o dea h;
be o e his change, pneumonia may ha e been egis e ed
as he unde lying cause [10]. To some ex en , his change
in diagnos ic c i e ia may ha e con ibu ed o he inc ease
in demen ia as he unde lying cause o dea h in he egis-
e s. Ye , in ou da a, when de ec ing demen ia diagnosis
as he cause o dea h, all causes o dea h (immedia e, un-
de lying, in e media e, and con ibu ing) we e aken in o
accoun .
In conclusion, since he end o he las cen u y, dea h o
people wi h demen ia has mo ed om hospi al o LTC acil-
i y, especially o shel e ed housing wi h 24-hou assis ance
in Finland. This change is caused by he LTC e o m ha a-
o s ca e in si es classi ied as ou pa ien acili ies bu also by
inc easing longe i y. P e ious s udies imply ha LTC acil-
i ies a e mo e app op ia e places o end-o -li e ca e o peo-
ple wi h demen ia han hospi als. Ye , he e is a lack o
esea ch in es iga ing he quali y o end-o -li e ca e in his
ela i ely new ype o LTC acili y. Resea ch on he quali y
o end-o -li e ca e o people wi h demen ia is u gen ly
needed o de e mine i he ongoing LTC e o m can mee
he special needs o people dying wi h demen ia.
Y. Masuchi e al. / Alzheime ’s & Demen ia: Diagnosis, Assessmen & Disease Moni o ing 10 (2018) 86-93 91
Acknowledgmen s
This s udy was inancially suppo ed by he Compe i i e
S a e Resea ch Financing o he expe esponsibili y a ea
o Tampe e Uni e si y Hospi al (250241551/Rii a Ran ala
[Y.M. & M.A.]).
RESEARCH IN CONTEXT
1 Sys ema ic e iew: We in es iga ed how he place o
dea h changed be ween 1998 and 2013 among people
diagnosed wi h demen ia in Finland using he da a
om he Finnish na ional heal h and social ca e egis-
e s ( o al numbe o 140,034).
2 In e p e a ion: This is he i s epo o he place o
dea h o people wi h demen ia in Finland in he
con ex o a ca e policy emphasizing nonins i u ional
ca e. This analysis, using ex ensi e na ionwide da a,
p o ided a unique oppo uni y o s udy he place o
dea h and he ca e sys em in he whole coun y. We
ound ha since he end o he las cen u y, dea h o
people wi h demen ia has mo ed om hospi al o
long- e m ca e acili y, especially o shel e ed hous-
ing wi h 24-hou assis ance.
3 Fu u e di ec ions: Resea ch on he quali y o end-o -
li e ca e o people wi h demen ia is u gen ly needed
o de e mine i he ongoing long- e m ca e e o m can
mee he special needs o people dying wi h demen ia.
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