Changes in place of death among people with dementia in Finland between 1998 and 2013: A register study

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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