Microsoft Word - AnteliusfNOV.docx Ethnoculturally-­‐‑profiled  care   Dementia caregiving targeted towards Middle Eastern immigrants living in Sweden   Eleonor  Antelius,  Charlotta  Plejert   Linköping University Author contact: eleonor.antelius@liu.se, charlotta.plejert@liu.se Abstract When  social  contexts  have  been  taken  into  account  in  dementia  studies,  they  have  often  been  ascribed  to  the   private  surroundings  of  the  person  living  with  dementia,  giving  the  illusion  of  dementia  ‘occurring  in  a   vacuum’.  Thus,  there  has  been  an  inclination  to  disregard  the  importance  possibly  played  by  larger  socio-­‐‑ cultural  contexts,  such  as  values,  norms  and  beliefs,  that  will  influence  how  one  perceives,  experiences  –  and   responds  –  to  the  illness.  This  study  was  set  out  to  explore  the  understanding  of  dementia  as  a  culturally  and   socially  shaped  illness  in  order  to  illuminate  such  perceptions  and  experience  in  relation  to  ethnoculturally   profiled  dementia  care  in  Sweden.  The  results  indicate,  contrary  to  many  other  studies  (c.f.  Conell  et  al  2009;   Flaskerud  2009;  Gray  et  al  2009;  Hinton,  Franz  &  Friend  2004)  that  the  perception  of  dementia  and  the   described  meaning  of  the  disease  have  little  (or  nothing)  to  do  with  decisions  regarding  formal  care.  However,   cultural  norms  and  traditions  in  relation  to  issues  of  filial  piety  seem  to  do.  Thus,  to  understand  how  different   ethnocultural  groups  might  respond  to  dementia  care  within  a  migratory  context,  the  current  study  illuminate   the  fact  that  it  is  crucial  to  realize  that  neither  the  individual  person  with  dementia,  nor  larger  ethnocultural   groups  can  be  placed  within  a  vacuum  that  seemingly  does  not  change  or  correlate  with  surrounding  society.   In  order  to  achieve  proper  dementia  care  the  issue  of  acculturation  needs  to  be  accounted  for.       Keywords:    dementia;  illness  perceptions;  caregiving;  ethnoculturally  profiled;  acculturation           Anthropology & Aging, Vol 37, No 1 (2016), pp. 9-26 ISSN 2374-2267 (online) DOI 10.5195/aa.2016.107 This work is licensed under a Creative Commons Attribution 4.0 International License. This journal is published by the University Library System of the University of Pittsburgh as part of its D-Scribe Digital Publishing Program, and is cosponsored by the University of Pittsburgh Press. Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           9 Ethnoculturally-­‐‑profiled  care   Dementia caregiving targeted towards Middle Eastern immigrants living in Sweden   Eleonor  Antelius,  Charlotta  Plejert   Linköping University Author contact: eleonor.antelius@liu.se, charlotta.plejert@liu.se   Dementing  illness  does  not  respect  cultural  boundaries.  However,  persons  from  different   ethnic  groups  may  respond  in  culturally  distinctive  ways  (Valle  1998:xix)   Introduction   One  question  often  raised  regarding  chronic  diseases,  in  this  case  dementia  diseases,  is  whether   ethnic  groups’  responses  vary.  Although  there  is  strong  evidence  that  both  genetics  and  environmental   factors  play  significant  roles  in  determining  the  risk  of  diseases  like  Alzheimer'ʹs  (Larson  and  Imai  1996),   the   prevalence   of   dementia   diseases   has   proven   to   be   quite   similar   in   different   parts   of   the   world   (Marcusson,  Blennow,  Skoog  and  Wallin  2011).  However  (as  the  quote  above  by  Ramón  Valle  indicates)   how  one  respond  to  such  diseases  has  proven  to  be  quite  diverse;  the  responses  are  often  linked  to  how  one   understand  and  experience  a  disease  such  as  dementia.  In  order  to  better  understand  such  variation  this   article  will  explore  the  understanding  of  dementia  as  a  culturally  and  socially  shaped  illness  in  relation  to   migratory  contexts.  More  specifically,   it  will   illuminate  how  persons  with  Middle  Eastern  background,   employed  within  ethnoculturally  profiled  dementia  care  reflect  upon  these  issues.   From  a  biomedical  point  of  view,  dementia  disease  is  pathological.  Dementia,  being  a  generic  term   for  a  range  of  symptoms,  is  defined  as  a  (irrevocably)  cognitive  decline.  In  the  case  of  neuro-­‐‑degenerative   dementia  diseases,  such  as  for  instance  Alzheimer’s,  it  is  caused  by  microscopic  changes  of  plaques  and   neurofibrillary  tangles  in  the  brain,  affecting  memory,  executive  abilities,   language,   intellect,  as  well  as   increasing  difficulties  in  orienting  oneself  (Marcusson  et  al.  2011).  By  tradition  this  is  also  how  most  of  the   research  concerning  persons  with  dementia  has  been  framed,  as  a  progressive  brain  disease  that  occurs   within   a   person’s   brain.   Hence,   research   regarding   persons   with   dementia   has   often   focused   upon   individuals  and  their  cognitive  (declining)  abilities.  This,  of  course,  is  beneficial  in  terms  of  understanding   dementia  as  a  progressive  brain  disease,  but  not  quite  as  helpful  if  we  would  like  to  try  to  understand  how   persons  with  dementia  live  and  cope  with  their  illness  (Hydén  2014;  Hydén  and  Antelius  fortcoming).  In   other  words,   it   tells  us   almost  nothing  about  people’s   lived  experience  of   the  disease   (Strandroos  and   Antelius,  forthcoming;  Toombs  1995,  2001).   For  a  number  of  years  now,  there  has  been  a  rapidly  growing  field  of  dementia  studies  that  go   beyond  the  individual’s  loss  and  instead  view  dementia  not  only  as  a  biomedical  disease,  but  also  as  a   subjective  experience  that  views  both  personhood  and  identity  in  complex  terms  of  transformation  and   change.  Significant  in  this  approach  is  that  the  disease  cannot  solely  be  understood  as  trapped  inside  the   brain  of  the  person  with  dementia.  Instead,  it  understands  the  transformations  and  changes  brought  about   by  the  disease  as  collaborative  (Hydén  2014;  Hydén,  Lindemann  and  Brockmeier  2014;  Strandroos  and   Antelius,  forthcoming)  –  where  the  persons  with  dementia  always  change  with  their  disease  in  relation  to   other  people.i     Hence,   the   importance   of   understanding   that   persons  with   dementia   diseases   are   not   isolated   or   sick   individuals  with  non-­‐‑functioning  brains,  but  rather  persons  who  belong  to  a  social  context,   interacting   Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           10 with   other   people,   have   been   strongly   stressed.   (Hydén   and  Örulv   2009;   Kitwood   1997;   Lyman   1989;   O’Connor  et  al.  2007;  Örulv  2008).ii  However  when  social  contexts  have  been  taken  into  account,  they  have   often  been  ascribed  to  the  immediate,  private  surroundings  of  the  person  living  with  dementia,  giving  the   illusion  of  dementia  ‘occurring  in  a  vacuum’  (O’Connor  et  al.  2007;  Antelius  and  Traphagan  2015).  In  other   words,  there  has  been  an  inclination  to  disregard  the  importance  possibly  played  by  larger  socio-­‐‑cultural   contexts,   such   as   values,   norms   and   beliefs,   that  will   influence   how   one   perceives,   experiences   –   and   responds  –  to  the  illness  (Antelius  and  Traphagan  2015;  O’Connor  et  al.  2007;  Innes  2001;  Innes,  Archibald   and  Murphy  2004).     Ethnocultural  perceptions  of  dementia   International   studies   show   us   that   such   a   vacuum   is   problematic,   as   different   ethnoculturaliii   groups  ascribe  different  meanings   to   the   illness   (see   for   instance  Dilworth-­‐‑Anderson  and  Gibson  2002;   Leibing  and  Cohen  2006)  and  that  such  ascribed  meaning  seems  to  also  affect  not  only  if  one  is  inclined  to   use  formal  services  or  not  (Connell  et  al,  2009;  Flaskerud  2009;  Gray  et  al.  2009;  Hinton,  Franz  and  Friend   2004)  but  also  how  a  person  living  with  dementia  diseases  is  perceived  and  what  status  is  afforded  to  that   person  (Antelius  and  Traphagan  2015;  Dilworth-­‐‑Anderson,  Williams  and  Gibson  2002;  O’Connor  et  al.   2007).    Hence,   in   order   to  more   fully   understand   the   complex   social   contexts   in  which   a   person  with   dementia  is  situated,  more  attention  needs  to  be  paid  to  the  fact  that  the  way  one  understand  and  explain   health  and  illness  is  always  culturally  (and  socially)  shaped.  To  borrow  a  classical  idea  from  anthropologist   Arthur  Kleinman,  we   need   to   understand   that   there   are   always   ‘normal  ways   of   being   ill’   (Kleinman   1988:5)   and   that   such   normal   ways  most   often   result   in   very   different   health-­‐‑maintenance   and   help-­‐‑ seeking  behaviours  (Antelius  and  Kiwi  2015;  Mackenzie,  Bartlett  and  Downs  2005).   Back  in  the  1980s,  a  group  of  anthropologistsiv  started  a  cross-­‐‑cultural  collaboration  in  order  to   shed   light   on   how   different   socio-­‐‑cultural   settings   come   to   shape   the   experience   and   meaning   of   (successful)  ageing.  Although  criticized  for  having  to  strongly  emphasized  structural  issues  over  cultural   ones  (see  for  instance  Torres  2002)  the  group  did  bring  a  socio-­‐‑cultural  agenda  into  gerontology.  This  has   since  been  further  developed,  in  both  practice  (where  both  ethnogerontology  and  ethnogeriatrics  are  now   common  in  many  care  education’s  curricula)  as  well  as  in  gerontological  research.  Just  recently,  a  special   issue  on   ‘Ageing  and  Ethnicity’  was  published   (in  Ageing  and  Society,   2015,  volume  35,   issue  5)  where   current  conceptualizations,  representations  and  use  of  ethnicity  within  the  field  of  social  gerontology  were   explored   and   where   the   main   emphasis   was   on   highlighting   how   ethnic   cultural   homogeneity   and   otherness  often  are  assumed  in  research  involving  older  persons  from  ethnic  minority  backgrounds  as  well   as   discussing  how  wider   societal   inequalities   often   are   reproduced  within   and   through   research   itself   (Zubair   and   Norris   2015).   Likewise,   ageing   (and   dementia)   have   also   attained   greater   focus   within   anthropological   research.   In   the  mid-­‐‑1990s,   anthropologist  Lawrence  Cohen   started   researching   issues   related  to  elderly  persons  in  India.  He  found  that  the  symptoms  we  gather  under  the  generic  term  dementia   were  not  perceived  or  described  at  all  as  they  were  in  his  home  country,  the  US.  The  elderly  people  he   met,  who  experienced  deteriorating  memory,  who  had  difficulties  orienting  in  time  and  space  and  who   had   developed   problems   in   communicating,   were   not   considered   to   suffer   from   any   (brain)   disease.   Instead,   their  problems  were   thought   to  be  caused  by  bad   family   relations   (Cohen  1995;  1998).  Cohen’s   research   was   followed   by   that   of   a   few   other   researchersv   and   in   the   early   2000s   a   special   issue   on   intercultural  perspectives  on  dementia  was  published  in  the  Journal  of  Cross-­‐‑Cultural  Gerontology  (number   17,  volume  3)  where  it  was  argued  that  whatever  kind  of  illness  dementia  is,  it  is  multidimensional  and  in   need  of  much  more  de-­‐‑medicalized  research  in  order  to  comprehend  dementia  also  as  a  lived  experience   rather  than  just  a  biological  fact.  In  2015  another  special  issue  Ethnocultural  Contextualization  of  Dementia   Care:  Cross-­‐‑cultural  Perceptions  on  the  Notion  of  Self  (Care  Management  Journals,  16:2)  expanded  upon  this       Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           11 call,  discussing  issues  regarding  cross-­‐‑cultural  perceptions  of  dementia  and  how  the  notion  of  (dementia)   care   needs   to   be   understood   in   relation   to   the   perception   of   the   illness,   because   the   way   care   is   conceptualized,  how   it   is   organized,   seems   to  be   closely   connected   to  how   the   construction   (and   thus   deconstruction)  of  the  self  is  perceived  (Antelius  and  Traphagan  2015).   Sweden:  an  ageing  multicultural  population     Sweden  was  one  of  the  first  nations  to  experience  rapid  population  ageing  and  now  has  one  of   the  highest  population  rates  of  those  considered  the  oldest-­‐‑old  (85+).  A  great  deal  is  known  about  ageing   in  Sweden,  both  in  terms  of  the  demographics  of  ageing  (Sundström  2009)  and  how  it  (historically)  has   been  uniquely  shaped  by  its  locally  controlled  services  for  older  people  (Davey,  Malmberg  and  Sundström   2014).  However,  contemporary  Sweden  is  also  shaped  by  the  fact  that  since  World  War  II,  due  to  migration   patterns,  Sweden  has  gone   from  being  a   relatively  homogenous  country   (ethnoculturally   speaking)   to   becoming   a   multicultural   and   multi-­‐‑ethnic   one   (Hannertz   1983;   Antelius   and   Kiwi   2015).   As   a   consequence  of  both  the  refuges  coming  during  WWII  (many  came  as  young  children,  especially  from   Finland)   as  well   as   labour-­‐‑force  migrants,  who   came  mainly   in   the   1960s   and   70s,   now   growing   old,   Sweden  has   experienced  a   rapid  expansion   in   the  numbers  of   elderly   immigrants  with   culturally   and   linguistically   diverse   (CALD)   backgrounds   (Emami   and   Ekman   1998).   In   addition,   one   also   needs   to   account  for  the  fact  that  since  the  late  1960s  and  onwards,  Sweden  has  been  a  receiving  country  of  many   asylum  seekers  and  family-­‐‑reuniting  immigrants,  who  tend  to  be  older  than  labour  force  migrants.     However,  as  people  with  CALD  backgrounds  are  not  a  homogeneous  population,  it  is  crucial  to   questions  why  (or  if?)  certain  groups  should  be  regarded  as  ethnic  or  having  cultural  differences  that  call   for  a  separate  study  of  the  group.  In  hindsight,  the  mere  fact  that  groups  are  considered  minorities  has   been  a  sufficient  cause  for  a  study  of  the  group  (cf.  SBU172E/3:408;  Antelius  &  Kiwi  2015).     The  reason  for  singling  out  dementia  study  among  persons  with  Middle  Easternvi  backgrounds  –   as  this  study  does  –  should  be  understood  in  regard  to  two  facts.  The  first  is  that  which  has  been  described   above,  that  previous  research  shows  that  different  ethnocultural  groups  do  ascribe  different  meanings  to   dementia,   which   has   been   shown   to   also   have   an   effect   on   health-­‐‑maintenance   and   help-­‐‑seeking   behaviour.  This  gives  the  second  reason,  which  is  that  for  the  past  few  years,  so-­‐‑called  ethnically-­‐‑profiled   dementia   care   has   emerged   in   Sweden,   pointing   to   the   fact   that   in   practice,   ethnocultural   groups   are   already  being  singled  out,  quite  deliberately  and  purposefully  in  relation  to  dementia  care.     Immigrants  with  Middle  Eastern   background   (or   the  Arabic-­‐‑speaking   community,  which   it   is   often   called)   are   of   course   a   community   consisting   of   many   different   ethnic   groups   having   various   cultures,   traditions   and   beliefs.   Although   most   speak   Arabic,   many   also   speak   other   languages   (or   dialects).  To  say  the  least,  it  is  a  very  diverse  and  heterogeneous  group,  consisting  of  people  from  (among   other  countries)  Lebanon,  Palestine,  Syria,  Iraq  and  Egypt.  Many  are  Muslims,  but  as  we  know  there  is   also  much  diversity  within  Islam;  there  are  Sunni,  Shi’a,  Alawi,  Druze  etc.  Also,  many  are  not  Muslims,   they  may  be  practicing  Catholics,  or  Chaldean,  or  Coptics,  or  they  may  not  be  religious  at  all.  People  with   Middle  Eastern  backgrounds  living  in  Sweden  are  thus  not  homogeneous  even  within  the  so-­‐‑called  group   (or  community).  Thus,  as  with  any  other  ethnocultural  group,  it  is  in  itself  quite  heterogeneous;  persons   are  of  different  class,  gender,  religion  and  so  on.  However,  the  choice  to  single  out  people  with  Middle   Eastern  backgrounds  as  a  distinct  ethnocultural  immigrant  group  in  Sweden  –  as  this  study  does  –  should   be  understood  in  relation  to  the  discussion  above.  Hence,  the  choice  needs  to  be  understood  in  relation  to   the  facts  that  (a)  there  already  exist  Middle  Eastern-­‐‑oriented  dementia  care  facilities   in  Sweden,  which   indicates   that   persons   of   these   backgrounds   are   perceived   (and/or   perceive   themselves)   as   an   ethnocultural  group  with  special  needs  for  targeted  care,  (b)  persons  with  Middle  Eastern  backgrounds   Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           12 make  up  one  of   the   largest   immigrant  groups   in  Sweden,  with   increasing  numbers  of  people  growing   older   (Mazaheri,  2013);  and  (c)  hardly  any   studies  exist  regarding  persons  with  dementia  diseases  and   with  Middle  Eastern  backgrounds  (however  see  Mazaheri  2013;  Antelius  and  Kiwi  2015;  Næss  and  Moen,   2015).  In  our  opinion  this  makes  a  separate  study  of  the  group  valid,  especially  in  order  to  be  able  to  ask   the  question  of  whether  it  is  still  valid  to  conduct  such  a  separation  of  groups  in  regards  to  dementia  care.     Multicultural  Care   The  choice  of  singling  out  persons  with  Middle  Eastern  background  also  needs  to  be  put  in  context   of  how  Swedish  elderly  care  policies  have  changed  since  the  1980s.  Due  to  the  change  in  the  diversity  of   the  population,  with   steadily  growing  numbers  of   immigrants  growing  old,   the   issue  of  multicultural   (elderly)   care   gained   high   political   priority   in   the   1980-­‐‑90s.   The   former   Swedish   Committee   of   Immigration  Policy  concluded  that  when  elderly  care  was  to  be  planned,  special  consideration  should  be   taken  to  ‛each  immigrant  group’s  different  ethnic,  linguistic,  and  cultural  characteristics’  (SOU  1984:58,   EA’s   translation).   However,   as   research   progressed,   such   a   distinct   and   delimited   definition   of   an   immigrant  group  with  a  set  type  of  characteristics  came  into  question.  Thus,  following  the  progress  of   Swedish  elderly  care  policies  we  find  a  much  stronger  focus  upon  individual  characteristics  and  policies   oriented  towards  providing  person-­‐‑centred  care  (often  in  relation  to  accessible  care  in  native  languages).   However,  at  the  same  time  it  has  also  been  concluded  that  because  the  progression  of  dementia  diseases   affects  both  language  use  and  communicative  ability  as  well  as  being  linked  to  deteriorating  memory  and   difficulties  orienting  in  time  and  space  (for  instance  believing  that  one  is  living  in  the  society  one  grew  up   in,   which   might   have   quite   different   traditions   and   customs   than   contemporary   Sweden   does),   both   language  and  cultural  differences  might  give  rise  to  specific  care  needs  (Ds  2003:47).     Thus  in  2010  The  Swedish  National  Board  of  Health  and  Welfare  concluded  that  ‘person-­‐‑centred   care   means   to   especially   consider   needs   related   to   people   having   different   cultural   or   linguistic   background’.  Cultural  needs  are  defined  here  as  ‘giving  persons  with  dementia  disease  the  opportunity   to  practice  their  religion,  being  served  culturally  appropriate  food,  keeping  their  cultural  traditions  and   customs,  and  having  access  to  nursing  staff  that  communicate  in  the  same  native  tongue  as  the  person   with   dementia’.   On   the   subject   of   linguistic   needs,   they   state   ‘to   be   cared   for   by   nursing   staff   who   communicate  in  the  native  tongue  and  who  also  have  cultural  competence  could  give  the  person  with  a   dementia  disease  who  has  a  different  ethnic  background  a  sense  of  security,  increased  well-­‐‑being,  and  a   sense  of  feeling  ‘at  home’’  (2010:21,  EA’s  translation).       Ethnoculturally-­‐‑Profiled  Dementia  Care     The   development   of   dementia   care   policies   discussed   above,   with   its   end   result   being   the   guidelines  published  by  the  Swedish  National  Board  of  Health  and  Welfare  in  2010vii,  has  been  greatly   influenced  by  research  conducted  by  Sirkka-­‐‑Liisa  Ekman  (1993;  1996)  and  colleagues  (Ekman  et  al.  1993;   1994;   Heikkilä   2004;   Heikkilä   and   Ekman   2003,   2000).   They   have   been   able   to   show   that   Finnish   immigrants  living  in  Sweden  with  a  dementia  disease  acted  on  a  level  of  apparent  competence  that  seemed   far  below  their  level  of  actual  competence.     For   instance,   when   the   Finnish   immigrants   (who   used   to   be   fluent   in   Swedish)   communicated   with   Finnish-­‐‑speaking   caregivers   they  were  much  more   successful   in   their   communication   than  when   they   communicated   with   monolingual,   Swedish-­‐‑speaking   staff.   When   they   were   able   to   use   their   native   tongue,  the  residents  showed  latent  abilities  when  participating  in  activities  requiring  abilities  thought  to   be   long  lost.  Additionally,   the  relationships  between  residents  and  staff  seemed  more  positive  and  the   Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           13 Finnish   immigrants   seemed   to   be   more   aware   of   both   themselves   and   their   surroundings   when   communicating  with  the  bilingual  personnel  (Strandroos  and  Antelius,  forthcoming).  As  a  result  of  these   research  findings,  Finnish-­‐‑speaking  dementia  care  has  been  well  established  in  almost  all  parts  of  Sweden.     However,   Ekman   and   colleagues’   studies   revolved   solely   around   the   ability   to   share   (native)   language   with   care   staff.   The   so-­‐‑called   ethnically   profiled   dementia   care   facilities   that   we   now   see   emerging  in  Sweden  are  residential  care  facilities  that  state  that  they  are  different  from  ordinary  municipal   care   facilities   in   that   they  offer   something  more  –  or   else  –  by  being   targeted  at   specific   ethnocultural   groups.  For   instance,  The  Agora   (one  of   the   ethnoculturally-­‐‑profiled   care  homes  presented   in  our  data   further  on)  profiled  itself  as  a  nursing  home  with  Oriental  inspiration  for  those  wanting  to  live  in  a  safe   environment;  it  is  a  lodging  with  respect  for  traditions,  where  one  can  speak  one’s  native  tongue  and  thus   feel  at  home.  The  Agora  is  based  upon  ‘Oriental  colours,  tastes  and  traditions’.   Thus,  there  are  dementia  care  policies  –  and  actual  residential  dementia  care  facilities  –  already  in   place  in  Sweden,  targeted  at  specific  ethnocultural  groups.  However,  we  know  very  little  about  how  staff,   relatives   or   the   person   with   dementia   in   these   specific   ethnocultural   groups   themselves   understand,   explain,  and  experience  a  disease  such  as  dementia  and  how  that  might  affect  health-­‐‑maintenance  and   help-­‐‑seeking  behaviour.  Or  if  specific  care  based  upon  ethnocultural  grouping  and  different  needs  is  even   desired.   Hence,  the  aim  of  this  article  is  to  further  elaborate  on  how  a  disease  such  as  dementia,  which   seems  to  affect  people  all  over  the  world  with  similar  prevalence  and  incidence,  needs  to  be  understood   outside  of  the  social  vacuum  it  still  seems  so  often  to  be  placed  within.  Hence,  in  this  article  we  will  explore   the   understanding   of   dementia   as   a   culturally   and   socially   shaped   illness   in   order   to   illuminate   perceptions  as  well  as  experiences  of  –  and  responses  to  –  both  dementia  as  an  illness  as  well  as  dementia   care.  The  case  in  point  will  be  to  illuminate  this  in  regard  to  persons  with  Middle  Eastern  backgrounds   involved  in  ethnoculturally-­‐‑profiled  dementia  care  in  Sweden.viii       The  Setting     This  article  is  based  upon  interview  data  and  (some)  fieldwork  data  gathered  in  Sweden,  in  three   separate   settings,   including   (1)   a   residential   dementia   care   facility   with   Arab   focus,   (2)   a   residential   dementia   care   facility  with   (so-­‐‑called)  Oriental   focus,   and   (3)   a   day   centre   for   persons  with  dementia   diseases  who  have  Middle  Eastern  backgrounds.  Thus,  all  settings  have  a  specific  ethnocultural  profiles,   offering  dementia  care  with  a  Middle  Eastern,  Arab  and/or  Oriental  profile.ix  All  names  of  locations,  places   and  persons  are  of  course  fictitious.   The  first  setting,  here  called  Manazel,  is  a  so-­‐‑called  ethnically  profiled  residential  dementia  care   facility  and  specializes  in  what  they  themselves  call  care  with  an  Arab  focus.  In  the  residential  care  building   to  which  Manazel  belongs  there  are  five  floors  with  nine  separate  apartments  and  one  communal  living   room/dining  hall  with  dining  tables,  sofas,  reclining  chairs  and  a  TV  on  each  floor.  One  floor  –  simply   named  after  the  number  of  the  floor  it  is  located  on  in  the  building  –  is  for  younger  persons  with  dementia   (under  the  age  of  65  and  with  no  specific  ethnic  profile).  One  floor  –  the  one  in  focus  in  this  paper,  here   called  Manazel  –   is   targeted  towards  Arab-­‐‑profiled  (dementia)  care  and  three  of  the  floors  are  targeted   towards  Persian-­‐‑oriented  carex,  of  which  two  of  the  three  floors  are  dedicated  to  dementia  care.  Except  for   the  one  on  the  floor  for  younger  persons  with  dementia,  the  others  have  nursing  staff  fluent  in  Persian,   Arabic,  Armenian,  Azerbaijani  and/or  Kurdish,  and  all  also   speak  Swedish  as  a   second   language.  The   second  setting,  here  called  the  Agora,  is  also  a  residential  dementia  care  facility  with  what  they  called  an   Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           14 Oriental  focus,  with  staff  speaking  Swedish,  Arabic,  Kurdish,  Persian  and  Syrian.  Just  as  Manazel,  it  had   decorations,  food  and  TV  shows/radio  reminiscent  of  the  Middle  East  (the  building  was  built  around  a   large,   indoor  plaza   (hence   the   name)  where   tea,   coffee   and   typical   ‘Swedish’,   ‘Turkish’,   and   ‘Persian’   pastries  were  always  available).  The   third   setting,  here   called   the  Fig,   is   a  day  centre   for  persons  with   dementia  diseases  who  have  a  Middle  Eastern  backgrounds.  All  staff  speak  both  Swedish  and  Arabic,   some  also  speak  Kurdish,  Turkish,  Syrian  or  Assyrian.  In  order  to  attend  the  day  centre  one  needs  to  have   attained  a  formal  decision  on  care  service  (provided  by  the  municipality  at  special  assessment  meetings).     Gathering  data   Data  collection  included  mainly  in-­‐‑depth  interviews  with  care  staff  at  the  three  different  settings.   One  of   the  authors   (EA)  gathered  most  of   the  data.  At   times   she  conducted   the   interviews  alone,  and   sometimes  in  collaboration  with  author  CP.  Some  observations  were  also  the  bases  for  the  interviews  as   both  authors  visited  the  different  care  facilities  prior  to  interviewing.  This  also  included  some  work  by  a   third  researcher,  PhD  student  MK,  who  conducted  a  year-­‐‑long  fieldwork  period  at  a  residential  dementia   care  facility  with  Persian  focus.  As  this  residential  home  was  in  the  same  building  as  the  Arab-­‐‑profiled   one,  i.e.  Manazel,  she  also  came  to  observe  and  keep  some  field  notes  of  Manazel.  MK  has  kindly  allowed   us  to  use  them  as  preparations  for  this  paper.  The  interviews  conducted  by  author  EA  at  Manazel  were   done   in   collaboration   with  MK.   As   the   gathered   data   includes   different   settings   and   to   some   extent   different  research  projects  the  time  span  on  gathering  the  data  has  been  quite  wide,  and  in  some  instances,   is  a  still  on-­‐‑going  mater.  Some  of  the  interviews  were  conducted  in  2013  and  some  much  more  recent.  The   length  of  each  interview  has  been  approx.  one  hour.   Interviews  were  based  upon  the  fact  that  all  interviewees  knew  that  we  were  interested  in  issues   related  to  ethnoculturally-­‐‑profiled  dementia  care.  We  used  an  unstructured  interview  guide;  i.e.  we  had   some  main  topics  we  wished  to  introduce/ask  about  and  the  interviews  consisted  of  mainly  open-­‐‑ended   questions.  Quite  often  the  interview  would  start  with  questions  such  as  ‘can  you  tell  me  about  your  work?’   or  ‘could  you  tell  me  about  your  day?’  and  most  interviewees  took  it  from  there,  talking  freely  about  their   experiences  and  perceptions  regarding  dementia  and  dementia  care.  Thus,  in  most  cases  the  interviews   became  more  informal  conversations  rather  than  interviews  (Briggs  1986).  All  interviews/conversations   were  audio  recorded  and  transcribed  verbatim;  the  total  number  of  interviews  conducted  was  ten.     Participants     The   persons   interviewed   consisted   of   three   certified   nurses,   three   assistant   nurses,   two   head   managers,  one  vice  manager  and  one  head  of  marketing.  These  persons  were  chosen  as  they  comprised   the  entire  staff  at  the  day  centre  (the  Fig)  as  well  as  the  management  of  the  Oriental-­‐‑profiled  residential   care   facility   (the   Agora)   and   the   head   nurses   (certified)   at   the   Arab-­‐‑profiled   residential   care   facility   (Manazel).  We  had  also  hoped  to  interview  nurses/assistant  nurses  at  the  Agora  but  due  to  circumstances   beyond  our  control,  this  could  not  be  done.  As  our  study  sample  is  quite  small  (and  there  are  not  that   many   ethnoculturally   profiled   dementia   care   units  within   Sweden)  we  wish   not   to   be   al   too   specific   regarding  personal  details  (since  our  informants  could  then  be  too  easily  recognised).  However,  some  data   is   needed:   the   staff   at   the   Fig   all   had  Middle   Eastern   backgrounds,   coming   from   the   countries   Iraq,   Kurdistan,  Turkey  and  Syria.  All  of  them  had  lived  in  Sweden  for  several  years  and  had  worked  within   mainstream  dementia  care  before  working  at  the  Fig.  They  ranged  in  age  between  35-­‐‑50,  being  of  both   female  and  male  gender.  The  staff  interviewed  at  the  Agora  consisted  of  persons  with  both  Middle  Eastern   (Iraqi)  background,  but  also  one  with  Swedish  background.  They  were  of  both  sexes  and  ranged  in  ages   Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           15 40-­‐‑50.  The  staff  interviewed  at  Manazel  were  all  women,  all  of  Middle  Eastern  backgrounds,  ranging  from   countries   such   as   Iraq,  Kurdistan,   Turkey,   Syria   and   Iran.   They   tended   to   be   younger   than   the   other   interviewees,  all  being  in  their  30s,  all  of  them  had  lived  in  Sweden  for  many  years.    Most  of  them  had   work  within  mainstream,  municipal  care  before  working  at  Manazel.  As  Manazel  is  located  in  the  same   building  as  a  Persian-­‐‑oriented  facility,  the  nurses  sometimes  work  alternately  at  the  different  floors  and   thus  one  of  the  nurses  interviewed  spoke  Persian  as  first-­‐‑language,  but  also  knew  some  Arabic.   The  main  aim  of  this  article  is  to  explore  the  understanding  of  dementia  as  a  culturally  and  socially   shaped  illness  in  order  to  illuminate  perceptions  as  well  as  experiences  of  dementia  and  dementia  care   among  persons  with  Middle  Eastern  background  partaking  in  ethnoculturally-­‐‑profiled  dementia  care  in   Swede.  Therefore,  we  base  our  analysis  (mainly)  on  care  staff  working  in  such  settings.  We  wish  to  point   out  that  this  paper’s  particular  focus  should  not  be  perceived  as  an  act  of  negligence  or  dismissal  of  the   persons  with  dementia   and   their   experiences   and  perceptions.  Our   intent   is  not   to   strip  persons  with   dementia  of  their  agency  by  conducting  research  about  them  rather  than  with  them.  This  choice  simply   means  that  for  this  article,  we  have  placed  our  focus  upon  those  who  work  in  such  a  specific  care  setting   as  an  ethnoculturally-­‐‑based  one  constitutes,  and  what  they  have  to  say  in  regard  to  that.  The  voices  of  the   persons  with  dementia  and  their  perceptions  in  all  of  this  –  as  well  as  those  of  their  relatives  –  have  been   reported  elsewhere.xi     Analyzing  the  Data     This  article  is  empirically  driven  as  we  take  our  starting  point  in  the  interviews  conducted.  Data   analysis  has  thus  mainly  been  ethnographic.  Although  ethnographic  analysis  perhaps  is  more  selective   and  limited  rather  than  always  being  comprehensive,  it  aims  at  contextualizing  details  and  interpreting   human  behaviour  from  the  actors’  point  of  view  (Kovarsky  and  Crago  1990-­‐‑1991)  in  order  to  describe  these   experiences  as  thickly  as  possible.  We  must  not  forget  that    ‘thick  description’  of  course  stems  from  Geertz’s   (1973)  idea  that  ethnographic  analysis  needs  not  only  to  be  rich  in  detail  and  context,  but  also  in  meaning   and  interpretation  –  interpretations  that  include  finding  a  stratified  hierarchy  of  meaningful  structures.   We  have  thus  analysed  our  data  in  this  article  by  identifying  (recurrent)  instances  and  meaningful  structures   across  the  data  set  in  order  to  achieve  that  thick  description  of  hierarchy  among  the  details  (Antelius,  2009;   Geertz  1973).     Having   said   that,   it   also   becomes   important   to   show  how  data   has   been  produced  within   the   interviews.   It   is   not   as   if   they   stand   on   their   own.   Interviews   are   interactional   collaborative   accomplishments,  and  respondents  (interviewees)  are  not  so  much  repositories  of  knowledge  as  they  are   constructors  of  knowledge  in  association  with  interviewers  (Holstein  and  Gubrium  2004;  Mishler  1986;   Riessman   2008;   Antelius   2009).   The   themes   presented   under   Results   should   thus   be   understood   as   introduced   by   the   interviewees   themselves,   however   in   response   to   the   fact   that   we   as   researchers/interviewers  have  asked  about  specific  topics.  It  should  also  be  stated  that  after  conducting   one  interview,  it  was  transcribed  and  systematized  (in  terms  of  finding  a  stratified  hierarchy  of  meaningful   structures  in  recurring  themes)  and  themes/questions  from  one  interview  thus  led  us  as  interviewers  to   ask  about  that  particular  theme  in  the  following  interviews.       Ethical  Consideration     The   study   has   been   carried   out   in   accordance   with   the   standards   of   the   Swedish   Research   Council’s  ethical  principles  for  research  in  the  humanities  and  social  sciences  as  well  as  the  responsible   Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           16 committee  of  human  experimentation  and  with  the  Helsinki  Declaration  of  1975,  as  revised  in  1983.  All   participants   in   the   study  have  been  asked   for  –  and  have  given  –   informed  consent;   this   included   the   participant’s  right  to  refuse  to  answer  a  question,  to  stop  an  interview  at  any  time,  to  reschedule,  or  to   withdraw  from  the  study  altogether  at  any  time,  without  personal  consequences  (Corbin  and  Morse  2003).   The  study  is  approved  by  the  Central  Ethical  Review  Board,  Linköping  (Dnr:  2012/180-­‐‑31).     Results   Dementia:  something  other  than  a  disease?   In  line  with  the  background  described  above,  in  regard  to  both  the  fact  that  quite  a  few  studies   have   shown   that   dementia   is   a   culturally-­‐‑shaped   complex   of   experiences,   and   that   there   exists   ethnoculturally-­‐‑profiled   dementia   care   in   Sweden,   we   wish   to   further   develop   the   understanding   of   dementia  and  dementia  care  among  persons  with  Middle  Eastern  backgrounds  living  in  Sweden.  Hence,   in  the  interviews  we  conducted  we  asked  about  this,  how  they  –  the  staff  who  worked  in  profiled  care  and   also  had  Middle  Eastern  background  –  would  describe  dementia.   Laleh:    They  don’t  have  good  knowledge  about  this  disease  (.)  uhm,  what  can  I  say  (.)  it’s  rare   to  hear   about   someone  becoming  dementedxii   in   our   countries,   rare.   Like   (.)   I   lived   in  my   country  22  years  and  I  never  heard  about  anyone  being  demented  when  they  got  old.   EA:  Is  it  called  something  else  then,  other  than  dementia?  Or  (.)  does  one  not  speak  about  it   at  all  or  are  there  other  words  for  it?   Laleh:  Uhm,  our  culture   it   (.)  well   (.)  one  goes  crazy  (.)  uhm  it   feels,  we  don’t  have  (.)  use   proper  words  like  dementia  [we  say]  aa  he’s  crazy.   Laleh  tells  that  within  her  culture  (as  she  herself  puts  it)  dementia  is  not  a  term  commonly   used   to  describe  what  we  would  describe   as   cognitive  decline.   Instead  one  would   rather  describe   someone  showing  such  symptoms  as  crazy.  The  biomedical  term  dementia  does  not  seem  to  be  valid  in   her  description  of  the  culture  she  was  brought  up  in  before  moving  to  Sweden.  However,  when  asking   Hadya  about  the  same  topic  she  says:   Hadya:  The  most  difficult  thing  about  demented  people  is  that  they  (.)  they  don’t  know  about   this  thing,  their  relatives  or  their  wives,  or  husbands,  this  disease,  what  it  means.   EA:  One  still  talks  about  it  as  a  disease  then?     Hadya:  Yes,  a  disease,  yes,  but  uhm  (.)  here  in  Sweden  one  says  dementia  but  there  one  does   not,  they  say  Alzheimer,  she’s  got  Alzheimer  uhm.   EA:  And  if  one  does  not  talk  about  Alzheimer  and  not  dementia,  is  there  another  way  to  talk   about  it,  like  it’s   Hadya:  No.   They   only   say   it   is   a   disease   (.)   they   don’t   have   (.)   they   don’t   have   as  much   [knowledge]  so  I  explain  that  I  work  with  such  things  so  it  doesn’t  become  (.)  but  they  don’t   have  a  proper  picture…   EA:  Ok  (.)  I  was  thinking  (.)  I  have  heard  others  say  that  well  (.)  one  goes  crazy  or  that  people   are  strange  or     Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           17 Hadya:  They,  they  say  this  (.)  forgetful  (.)  they  don’t  say  crazy,  no,  it’s  forgetful  and  that  it’s   normal  to  be  forgetful  for  older  people   Shila  continues:   Shila:  I  have  thought  about  it  a  lot  and  I  think  that  in  the  old  days  we  didn’t  have  anything   called  dementia.  The  old  were  either  healthy  or  sick,  and  died  of  their  diseases  (.)  maybe  it’s   because   of   that   that   relatives  with   immigrant   backgrounds   don’t   understand.   During  my   parents  time  there  wasn’t  the  same  source  of  information  we  have  today  and  that'ʹs  why  they   have  difficulties  accepting  what  we  today  call  dementia.  Maybe  the  younger  generation  will   accept  it.   EA:  So  the  relatives  do  not  see  it  as  a  disease  or?   Shila:  No  they  don’t.  They  don’t  think  about  it  as  something  that  has  occurred  in  one’s  brain.   They  deny  it  all  the  time.  And  their  denial  is  a  problem.   Arif  elaborates:   Arif:  So  it  is  (.)  a  little  bit  of  bad  knowledge  about  dementia  diseases  among  our  people  from   the  Middle  East,  really  bad  knowledge.   EA:  You  mean  generally  speaking?   Arif:  Yes,  in  general,  they  connect  this  disease  with  old  age,  if  you’re  old,  of  course  you  forget.   EA:  Ok,  so  it  becomes  natural  when  one   Arif:  You  know,  it’s  natural  but  it’s  not  at  all  natural,  we  have  young  people  with  dementia,   under  the  age  of  65  here  at  the  Fig,  that’s  not  natural,  it’s  a  disease  really,  but  for  them  it’s   connected  to  well,  being  old  they  say.   As  it  turned  out,  there  seemed  to  be  no  clear-­‐‑cut  definitions  of  dementia.  If  saying  anything  they   usually  described  it  as  Hadya  and  Shila  and  Arif  do  here,  that  people  from  their  culture  usually  viewed   dementia  as  normal  ageing  and  forgetfulness,  or  did  not  think  about  it  at  all.  This  implies  that  according   to  our  interviewees,  there  are  different  perceptions  and  ascribed  meanings  of  dementia  but  people  with   Middle   Eastern   backgrounds   might   not   medicalize   forgetfulness   in   the   same   manner   as   people   of   a   Western,  biomedically-­‐‑influenced  culture  might  do.  It  is  thus  interesting  to  ask  whether  this  may  affect   health-­‐‑seeking  and  health-­‐‑maintenance  behaviours,  as  other  studies  have  showed  such  a  link  (if  it  is  not   a  disease,  why  would  one  seek  care?  Or,  if  it  is  perceived  as  stigmatizing,  one  hides  the  person  affected).   And  what  we  found  was  that  our  questions  regarding  perceptions  of  dementia  quite  often  turned  into   discussions  about  (dementia)  care  instead.     Filial  piety  and  senses  of  guilt  and  shame   Many  studies  have  shown  that  a  stronger  sense  of   filial  piety   is  more  prominent  among  some   ethnocultural  groups  than  others,  and  hence  caring  for  one’s  elderly  (and  sick)  is  something  relatives  take   care  of  themselves  as  opposed  to  using  formal  care  services  (if  such  are  at  all  available).xiii  As  our  attempts   to  talk  about  perceptions  of  dementia  so  often  turned  into  discussions  about  (dementia)  care  instead,  we   became  curious  to  see  if  this  notion  of  filial  piety  was  (a)  valid  among  our  interviewees  and  (b)  if  so,  could     Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           18 it  be  viewed  as  somehow  linked  to  the  perception  of  dementia,  as  other  studies  have  suggested  (cf.  Connell   et  al.  2009;  Flaskeru  2009;  Gray  et  al.  2009;  Hinton,  Franz  and  Friend  2004).   EA:   If   one  does   not   see   it   as   a   disease,   either   its   ageing   or   craziness   or   something   else   (.)   according  to  studies  it  is  more  unusual  to  leave  one’s  elderly  at  a  residential  home.  Do  you   notice  that  here?   Shila:  Yes,  I  see  that  many  have  difficulties   leaving  their  elderly  to  formal  care  and  even  if   they  did,  they  have  feelings  of  guilt  [.]  It’s  unusual  to  leave  one’s  old  and  dear  to  a  nursing   home.   Noor:  I  agree  with  Shila  and  I  understand  that  in  our  countries  it  is  different.  In  our  culture   we  have  never  had  anything  called  nursing  homes  or  residential  care.  When  mum  and  dad   get  old  it’s  a  necessity  to  care  for  them.   Mitra  points  to  the  same  issue  in  her  interview:   Mitra:  I  believe,  through  my  own  experience  and  by  talking  to  others  who  also  feel  the  same   way  (.)  that  Arabic-­‐‑speaking  people  are  more  willing  to  take  care  of  their  elderly  at  home  by   themselves  (.)  and  that’s  part  of  the  culture.     And  so  do  Arif  and  Laleh:   Arif:  We  have  several  who  would  like  to  have  their  (.)  demented  in  a  residential  care  home   but  they  don’t  dare,  they  don'ʹt  want  to,  they  (.)  something  rests  in  here  [points  to  his  heart]   (1s)  shame  you  know,  it,  uhm  evil,  God  will  punish  them.   Laleh:  Because,  one  can  say,  ashamed,  people  bad-­‐‑mouth  about  you.  It’s  like  you  throw  away   your  mum  and  dad  at  the  nursing  home  because  in  our  culture  one  takes  care  of  mum  and   dad,  at  home  until  they  die.   Mona  elaborates:   Mona:    These  people,  they  fight  until  the  end  (.)  I  can  see  that,  one  understands  that  of  course     EA:  Fighting  to  keep  them  at  home?   Mona:    uum,  but  you  know,  younger  daughters  and,  and  sons  who  are,  who  have  their  jobs     CP:  Right   Mona:    and  that’s  not  easy  to  combine     EA:  Right   Mona:  and  that’s  why  it  is  so  hard  (.)  because  they  come  to  harm  because  of  it     CP:  That’s  true   Mona:   and  that’s  why  I   think  one  needs,  one  needs   to  be   informed  about  what’s  available   instead  of  going  around  seven  days  a  week  feeling  bad   EA:  Uhm,  because  one  doesn’t  see  an  option?   Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           19 Mona:  Exactly  (.)  because  one  doesn’t  know  or  one  might  not  (.)  one’s  relatives  don’t  allow   one  to  abandon  or  (.)  that’s  also,  it’s  very  much  cul  (.)  cultures  colliding,  all  the  time.     These  examples  show  that  there  does  seem  to  exist  a  perception  of  persons  with  Middle  Eastern   (or  Arab)  backgrounds  showing  a  stronger  sense  of  filial  piety.  However,  when  discussing  why  this  is  so,   we  see  some  different  explanations  from  the  interviewees.  Arif,  Shila,  Noor,  Laleh  and  Mitra,  who  all  have   Middle  Eastern  backgrounds  themselves,  raise  the  issue  of  guilt;  it  is  one’s  obligation,  a  necessity  to  do  so.   Otherwise  one  will  be  punished  (by,  for  instance,  God).  Mona  on  the  other  hand,  who  does  not  have  a   Middle  Eastern  background,  perceives  it  more  as  a  combination  of  not  knowing  that  other  options  exist,   or  that  one  is  forced  by  relatives  to  take  on  this  obligation.  Laleh  somewhat  confirms  this  as  she  also  speaks   about  how  people,  in  general,  from  her  culture  are  ashamed  to  throw  their  elderly  into  formal  care  as  others   will  speak  ill  of  you  if  you  do.     We   see   then   that   very   few   of   the   interviewees   say   anything   about   the   ascribed   meaning   of   dementia   causing  people  of  Middle  eastern  backgrounds  not   to   seek   formal   care   (such  as   for   instance   perceiving  dementia  as  normal  ageing  and  thus  presenting  no  need  for  care).  However,  two  interviewees,   Sadira  and  Joakim,  raise  the  issue  of  how  perceiving  dementia  as  shameful  influences  decisions  on  formal   care:   EA:  Do   you   notice   this   about   the   dementia,   those  who   have   dementia,   uhm,   (1s)   that   one   doesn’t  really  talk  about  it,  because  we  have  come  across  that,  that  one  doesn’t  even  use  the   term  dementia  when   Sadira:  No,  one  doesn’t  (.)  one  doesn’t.   Joakim:  Do  you  experience  that  there  is  guilt   Sadira:  of  course   Joakim:  or  something  shameful  about  the  disease?     Sadira:  Umm   EA:  In  what  way?     Sadira:    Well  (.)  yes  exactly  (.)  exactly,  it  is  like  if  they  were  on  the  same  level  as  a  handicapped   (1s)   it   is   exactly   the   same   level,   one  doesn’t   talk  about   such  persons   so  one  becomes  a  bit   isolated  from  others  around  um,  family  so  they  don’t  want  to  be  near  or  visit  someone  else  (.)   with  mum  or  dad  because  of  their  state  (.)  it  is  such  (.)  it  is  a  shame  it  is  a  shame,  one  doesn’t   do  that  (.)  it  is  exactly  the  same  as  with  a  handicapped  (.)  child  that  you  have  at  home  and   don’t  want  to  show  off  (.)   in  foreign  countries  if  you  have  a  mum  or  dad  that  is  demented   then   you   are   usually   an   isolated   family,   you   don’t  want   to   visit   anyone,   you   don’t  want   anyone  to  visit  (.)  it’s  expressed  as  a  shame.   What  Sadira  states  here  is  that  people  of  Middle  eastern  background  do  reject  formal  care  on  the   basis  of  how  dementia   is  perceived  and  what  meaning   is  ascribed   to   the  disease;   as   it   is  perceived  as   shameful,  one   is  kept  hidden,  away  not  only  from  formal  care  but  also  from  other  family  and  friends.   Sadira’s  experiences  of  course  need  to  be  acknowledged,  however  the  main  reason  discussed  among  our   interviewees  regarding  not  seeking  formal  care  seems  to  be  based  more  upon  guilt  associated  with  not   fulfilling  one’s  filial  piety  responsibilities  than  upon  shame  for  the  actual  disease.       Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           20 Ethnoculturally  profiled  care:  a  way  to  ease  the  burden  of  guilt?   Researchers   Antelius   and   Kiwi   have   in   their   study   of   dementia   caregiving   among   Iranian   immigrants  living  in  Sweden  showed  similar  results  to  the  ones  described  above,  i.e.  that  the  perception   of  dementia  and  ascribed  meaning  of  the  disease  have  little  to  do  with  decisions  regarding  formal  care,   but  ‛more  to  do  with  living  up  to  standards  of  Iranian  culture’  (2015:88).  However,  as  they  were  also  able   to  show  that  the  choice  to  at  least  pick  an  ethnoculturally-­‐‑profiled  residential  facility  could  in  some  sense   ease  this  sense  of  guilt,  it  becomes  interesting  to  see  if  such  a  connection  could  also  be  detected  within  this   study.  Arif  says:  It’s  hard  for  them,  really  hard  actually  but  I  know  that  it  is  (.)  in  the  tradition  or  (.)  with   these  people  who  come  from  Syria,  Iraq  or  Turkey,  it’s  just  a  habit  that  we  need  to  take  care  of  mum  and   dad  as  long  as  they  are  alive  (1s)  it  is  a  bit  shameful  to  send  them  to  a  retirement  home  […]  relatives  do   send  their  demented  here  [to  the  day  centre]  more  than  willingly,  they  do,  because  they  come  home  again,   they  sleep  at  home.     Arif  discusses  the  idea  that  tradition  is  still  strong,  that  we  (i.e.  people  with  Middle  Eastern  backgrounds)   feel  the  need  to  take  care  of  one’s  own  as  long  as  they  are  alive.  However,  Arif  works  in  a  day  centre,  the   Fig,  not  a  residential  care  home,  and  because  of  that  he  was  also  able  to  discuss  why  that  might  be  easier  to   accept  than  residential  care  as  the  person  with  dementia  will  return  home,  they  will  sleep  at  home.  It  is  thus   not  as  if  one  has  thrown  away  one’s  elderly  or  sick.  When  talking  to  Sadira  and  Joakim,  who  worked  in  the   ‘Oriental’  residential  care  facility,  they  said:   Joakim:   Well,   yes,   we   have   utilization   problems   and   we   suspect   that   we   have   been   too   premature,  I  mean  we  have  an  ambition  to  work  with  integration  and  so  on  (EA:  mm)  but,   well  it  is  possible  that  it  isn’t  ready.  What  we  have  experienced  and  what  you  [referring  to   Sadira]  can  tell  about  is,  well  (.)  families  and  (.)  uhm,  these  cultural  associations  influence  (EA:   uum)  well,  they  create  a  lot  of  pressure  ‘you  shouldn’t  really,  should  you’  even  if  the  family   (EA:  um.  Ok)  daughter  or  whoever  takes  care  in  the  home  feels  that  ‘no,  now  I’m  fed  up,  this   doesn’t  work  anymore’  and  and  they  have  come  to  this  insight  and  the  step  were  you  can’t   take  it  anymore  and  then  there  is  all  this  pressure  from  outside  (EA:  um)  uhm,  well  which   perhaps  we  didn’t  take  into  account.   Sadira:  Mm,   for  example,   these  mosques,   since   they  go   to  mosques,   it   is   the  mosques   that   affect  this  ‘how  could  you?’  this  imam  that  sits  and  ‘how  do  you  allow?’  (.)  you  know,  in  Islam   the  children  are  supposed  to  take  care  of  their  parents  and  things  like  that  and  ‘it  is  not  good   that  you  leave  them,  you  will  go  to  hell’  and  stuff  like  that.  Then  there  are  associations  they   go  to  and  what  they  say  about  it  and  they  feel  it’s  not  ok  (.)  so  there  is  a  lot  of  pressure  going   on  and  distant  family  is  strong  (.)  they  don’t  allow  (.)  it’s  not  ok  in  their  world  that  they  should   end  up  in  nursing  homes  (CP:  umh)  and  they  don’t  have  the  knowledge  about  nursing  homes,   how  they  are  kept  and  what  resources  there  are  and  staff  24/7  and  so       EA:  And  that  doesn’t  help?     Sadira:    Because  of  the  culture,  definitely,  it  doesn’t  help  even  if  the  family  is  ok  with  it,  but   the  mosques   around   them,   and   the   churches,   and   associations,   distant   family,  neighbours   who  think  this  is  (.)  uhm,  shame  and  guilt  for  relatives  who  leave  their  parents  here.     Joakim:  So,  there  we  have  (.)  that  resistance  we  didn’t  really  (.)  account  for,  that  it  would  be   that  (.)  strong     EA:  No,  did  you  check,  I  mean  with  associations  and  such  before  or  how  (J:  no:o)  the  idea  to   Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           21 build  this  in  the  first  place?     Joakim:  Actually,  very  little  (EA:  aa)  uhm  we  (.)  were  rather  convinced  in  our  own  belief  that   this  [profiled  residential  care]  would  be   EA:  Be  something  one  wanted?     Joakim:  Exactly.   According  to  Sadira  and  Joakim,  who  worked  in  a  facility  that  suffered  great  problems  with  filling   their  capacity  (at  the  time  of  the  interview,  the  Agora  had  been  open  for  about  a  year  and  18  out  of  54  rooms   were  occupied),  the  resistance  towards  formal  care  was  much  tougher  than  they  had  expected.  According   to  Sadira,  this  is  most  definitely  due  to  the  pressure  from  outside  to  adhere  to  cultural  norms  of  filial  piety.   It  does  not  help  that   it   is  an  ethnoculturally-­‐‑profiled  care   facility;   the   (perceived)  guilt  of  not   fulfilling   one’s  obligation  of  filial  piety  seems  to  outweigh  this.  In  the  quote  above  by  Mitra  we  could  see  the  same   explanation  when  she  said:  ‛I  believe,  through  my  own  experience  and  by  talking  to  others  who  also  feel   the   same  way   that  Arabic-­‐‑speaking   people   are  more  willing   to   take   care   of   their   elderly   at   home   by   themselves  and  it  is  part  of  the  culture.’    However,  Mitra  also  expanded  on  that  statement  and  went  on  to   say:  ‛Still,  such  is  indeed  the  case  for  us  Iranians  as  well  but  I  think  that  it’s,  in  Sweden  perhaps  we  Iranians   have  adapted  us  more.’       Discussion     As   discussed   in   the   introduction,   earlier   research   has   demonstrated   how   different   socio-­‐‑ /ethnocultural  settings  come  to  shape  the  experience  and  meaning  of  both  ageing  and  dementia  diseases.   Research  has  also  shown  how  different  perceptions  and  ascribed  meanings  of  a  disease  such  as  dementia   can   have   an   impact   on   health-­‐‑maintenance   and   health-­‐‑seeking   behaviour.   And   still,   most   studies   regarding  dementia  place  the  person  with  dementia  within  a  so-­‐‑called  personal  vacuum,  i.e.  disregarding   the  fact  that  all  people,  even  those  with  dementia  diseases,  are  part  of  larger  socio-­‐‑cultural  contexts,  where   values,  norms  and  beliefs  will  come  to  influence  how  one  perceives,  experiences  –  and  responds  to  –  the   illness.     Thus,  in  this  article  we  have  explored  the  understanding  of  dementia  as  a  culturally  and  socially   shaped  illness  in  order  to  illuminate  perceptions  as  well  as  experiences  of,  and  responses  to,  both  dementia   as  an  illness  and  dementia  care.  The  case   in  point  has  been  to  do  so   in  regard  to  persons  with  Middle   Eastern  backgrounds  partaking  in  ethnoculturally-­‐‑profiled  dementia  care  in  Sweden  because  of  the  facts   that,  (a)  there  already  exist  Middle  Eastern-­‐‑oriented  dementia  care  facilities  in  Sweden,  which  indicates   that  people  of  this  background  are  perceived  (and/or  perceive  themselves)  as  an  ethnocultural  group  with   special  needs  for  targeted  care,  (b)  people  with  Middle  Eastern  backgrounds  make  up  one  of  the  largest   immigrant  groups  in  Sweden,  with  increasing  numbers  of  people  growing  older;  and  (c)  hardly  any  studies   exist  regarding  persons  with  dementia  diseases  and  with  Middle  Eastern  backgrounds.     As  presented  above,  our  results  in  this  paper  indicate  that  the  perception  of  dementia  and  the  described   meaning   of   the   disease   have   little   (or   nothing)   to   do   with   decisions   regarding   formal   care.   Our   interviewees  did  discuss  different  perception  of  the  disease,  however  very  few  of  them  seemed  to  connect   such  perceptions  to  the  use  (or  non-­‐‑use)  of  formal  care.  Instead,  the  fact  that  almost  all  our  interviewees   had  Middle  Eastern  background  themselves  and  worked  within  ethnoculturally  profiled  care,  seemed  to   make   them  explain   –   and   contrast   –   their   own  perceptions   and   experiences  not   only   as   “opposed”   to   people  of  Swedish  background  but  sometimes  also  with  those  from  “their  own  culture”,  as  for  instance   Arif  did  in  clearly  stating  that  he,  as  an  educated  healthcare  worker,  had  “better”  knowledge  than  others       Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           22 from  “his  own  culture”  did.  This  of  course  needs  to  be  clearly  stated:  that  our  informants  in  this  study   consist  of  people  of  Middle  eastern  background  whom  all  have  had  (at  least  some)  training  within  health   care  and  as  such  the  positionality  of   the  care  staff  cannot  be  extended  to  represent  the  so  called  wider   community   of  Middle   Eastern   immigrants   living   in   Sweden.   However,   as   we   have   presented   in   our   results,  most  of  our   interviewees   tend   to  speak  “on  behalf  of   the  culture”  and  as  such   it   could  still  be   interesting  to  analyse  their  discussions  in  regards  to  cultural  assumptions  concerning  profiled  care.     We  thus  suggest  that  in  order  to  better  illuminate  issues  regarding  ethnoculturally-­‐‑profiled  care,   we  might  be  helped  by  introducing  the  concept  of  acculturation.  Acculturation  is  the  theory  surrounding   changes  that  come  about  when  persons  come  in  contact  with  other  cultures  (first  introduced  by  Redfield,   Linton,  and  Herskovits  as  early  as  1936).  This  theory  is  of  course  linked  to  the  acculturation  continuum  –  a   means  of  trying  to  explain  one’s  degree  of  ethnic  identification.  This  model  was  developed  in  order  to  try   to  help  practitioners  to  respond  to  cultural  variations  encountered  when  working  with  ethnoculturally   diverse   groups   (Valle   1998).   In   short,   the   acculturation   continuum   goes   from   a   traditional   position,   characterized   by   strong   orientation   towards   ‘the   homeland’   and   the   retention   of   cultural   origins,   to   bicultural  positions  marked  by  persons  moving  with  relative  ease  between  both  cultures,  to  the  end  of  the   continuum  –  acculturationxiv  –  where  one  almost  completely  identifies  with  the  culture  of  the  new  society   in   which   one   lives   (Valle   1998;   Yeo   and   Gallagher-­‐‑Thompson   1996).   Studies   have   thus   shown   that   acculturation  may  be  linked  to  changes  in  health  behaviours  as  well  as  changes  in  knowledge  and  beliefs   (see  for  instance  Landrine  and  Klonoff  2004).       One  might  say  that  some  of  the  participants  in  this  study  show  tendencies  of  being  acculturated;   that   they   have   started   to   reject   their   culture   (which   they   explain   do   not   necessarily   understand  what   dementia  “really”  is)  and  instead  adopt  the  Swedish  cultural  definition  of  dementia  as  a  disease.  As  Arif   puts  it  in  the  quote  above,  dementia  is  not  something  natural,  it  is  a  disease  and  according  to  him  people   from  the  Middle  East  need  to  understand  that  (which  Arif  and  several  of  the  other  interviewees  suggest   they  do  not).  However,  our  results  also  show  that  the  interviewees  describe  certain  cultural  differences   among   persons  with  Middle   Eastern   backgrounds,   that   some   are   being  more   traditional   in   regard   to   retaining  cultural  origins  in  comparison  to  other  Middle  Eastern  immigrants.  As  Mitra  said:       “I  believe,  through  my  own  experience  and  by  talking  to  others  who  also  feel  the  same  way  that  Arabic-­‐‑ speaking  people  are  more  willing  to  take  care  of  their  elderly  at  home  by  themselves  and  it  is  part  of  the   culture.  Yet,  such  is  indeed  the  case  for  us  Iranians  as  well  but  I  think  that  it’s,   in  Sweden  perhaps  we   Iranians  have  adapted  us  more.”     What   Mitra   thus   points   out   is   that   it   seems   hard   to   believe   that   immigrants   with   Middle   Eastern   backgrounds  now  living  in  Sweden  will  automatically  have  the  same  attitude  towards  residential  formal   care  as  immigrants  with  Middle  Eastern  backgrounds  in  other  societies  will  have,  simply  based  upon  the   fact  that  they  have  migrated  from  the  same  area  and  might  (or  might  not)  have  had  similar  perceptions   and  experiences  of  dementia  (and  dementia  care)  in  their  home  countries.  Because,  as  Mitra  states,  and   the  acculturation  theory  suggests,  people  adapt  and  change  in  relation  to  surrounding  society.  Otherwise   it  is  almost  as  if  the  whole  Middle  Eastern  community  also  existed  in  a  vacuum,  with  no  regard  to  the  fact   that  cultural  ideas,  norms  and  tradition  also  change  over  time  and  in  correlation  to  surrounding  society.   In  order  to  understand  ethnoculturally-­‐‑profiled  (dementia)  care  in  Sweden  this  study  has  thus  shown  that   to  understand  more  about  persons  from  the  Middle  East  with  dementia  who  are  living  in  Sweden,  it  is   crucial  to  understand  how  one  relates  to  dementia  care  in  Sweden  rather  than  trying  to  conceptualize  it  in   relation  to  (preconceived)  perceptions  of  the  disease  itself.  This  result  is  similar  to  what  was  recently  found   in  a  study  exploring  response  processes  surrounding  signs  and  symptoms  of  dementia  among  Pakistani     Anthropology  &  Aging   Vol  37,  No  1  (2016)        ISSN  2374-­‐‑2267  (online)        DOI  10.5195/aa.2016.107    http://anthro-­‐‑age.pitt.edu   Antelius  &  Plejert  |  Ethnoculturally           23 immigrants  living  in  Norway  (Næss  and  Moen,  2015).  Although  the  result  of  that  study  has  a  reverse  line   of  argumentation  and  showed  how  norms  and  traditions  regarding  the  centrality  of  the  traditional  family   has  profound  influence  on  how  cognitive  changes  at  old  age  are  explained  and  dealt  with   (which  this   study  does  not),  it  comes  to  the  same  conclusion  that  dementia  care  –  in  a  migratory  context  –  needs  to  be   understood  more   in   relation   to   the   health-­‐‑care   system/health-­‐‑care   culture   in   the  new   society.  General   assumptions  based  upon  some  notion  of  cultural  perceptions  of  the  disease  will  help  very  little.  Thus,  as   our  results  show,  and  as  is  confirmed  by  Næss  and  Moen’s  study,  cultural  norms  and  traditions  in  regards   to  issues  of  care  might  need  to  be  further  highlighted  in  regards  to  (dementia)  care  within  a  migratory   context.       The  fact  that  the  data,  which  this  study  is  based  upon,  is  a  still  ongoing  matter  (some  data  was  gathered   almost   three   years   ago,   some   much   more   recently)   points   to   this   need   of   contextualization.   When   preparing  this  particular  paper,  we  of  course  went  back,  looking  over  the  data  yet  again,  checking  out  the   different   care   facilities  yet  again,  we  soon   realized   that   things  had  already  changed.  The  Agora,  which   profiled  itself  as  an  Oriental  facility  no  longer  has  such  a  profile.  It  still  exists  with  the  same  name,  but  has   a  much  wider  focus  upon  (all)  elderly  with  somatic  and  dementia  diseases  (however  still  offering  staff   who  all  speak  Swedish  and  ‘many  other  languages’).  Remember  Sadira’s  and  Joakim’s  discussion  above?   Where  they  said:  ‘we  were  rather  convinced  in  our  own  belief  that  this  would  be  something  one  wanted’.   However,  it  was  never  checked  with  the  so-­‐‑called  target  group  to  see  if  it  really  was.  We  believe  that  this   is  crucial,  because  it  points  to  the  fact  of  how  people  relate  to  issues  of  formal  care  needs  to  be  studied  in   context  –  to  offer  ethnoculturally-­‐‑profiled  (dementia)  care  to  persons  who  might  not  even  consider  formal   care  an  option,  however  adapted  it   is   in  terms  of  cultural  traditions  and  customs,  foods  and  religion  –   might  be  a  waste  of  both  time  and  resources.  What  we  argue   is   thus  that   to  underestimate   the   impact   cultural   norms   and   traditions  might   have   in   regard   to   care   and   care-­‐‑seeking   behaviours,   neither   the   individual  person  with  dementia,  nor  larger  ethnocultural  groups  can  be  placed  within  a  vacuum  that   seemingly  does  not  change  or  correlate  with  surrounding  society.  It  is  thus  crucial  to  remember  that  in   regards  to  the  acculturation  continuum  people  are  complex,  and  it  is  almost  impossible  to  be  pinpointed  at   one  particular  position  in  the  acculturation  continuum.  It  is  a  sliding  scale  and  who  can  say  in  which  ways   it  slides?  Is  it  always  towards  the  acculturated  position  and  away  from  the  traditional  one?  Of  course  not,   because  it  might  also  be  the  case  that  ethnocultural  continuity  is  regarded  as  extra  valuable  to  try  to  keep   as  intact  as  possible,  and  to  not  let  it  change  all  too  much.xv  As  Hadya,  who  herself  works  with  formal   dementia  care,  says:       There  are  pros  and  cons  about  both  cultures  (.)  but  that  someone  else  will  take  care  of  me,  I   think  about  when  I  get  old,  yikes  what  a  pain,  even  if  I  am  treated  fine  but  still,  it  feels  better   if  my  daughters  or  sons  would  do   it  because  I  have  worked  many  years   for   them  (.)   I  did   everything  for  them,  and  then,  when  I  don’t  have  more  strength,  they  throw  me  away.  (…)   There  [back  in  Iraq]  one  is  always  with  one’s  children,  with  one’s  grandchildren.  You  don’t   die  alone.     Thus,  ways  of  being  and  ways  of  belonging  might  need  to  be  distinguished   in  relation   to  a  migratory   context  (Levitt  &  Schiller  2004),  especially  so  in  relation  to  migrant  life  trajectories  (Boccagni  2012)  and   how  diseases  –  such  as  for  instance  dementia  –  needs  to  be  much  more  understood  outside  of  the  social   vacuum  it  so  often  seems  to  be  placed  within.     Acknowledgements     The  present  study  was  financially  supported  by  The  Bank  of  Sweden  Tercentenary  Foundation  (RJ,   grant  no.  M10-­‐‑0187:1).     Anthropology  &  Aging   Vol 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NOTES   i  This  is  not  to  suggest  that  dementia  is  nothing  but  a  social  construction  (i.e.  if  all  people  and  all  contexts  were  adjusted  towards  facilitating   people  with  symptoms  related  to  dementia  disease,  the  disease  would  magically  disappear).  It  is  however  an  approach  that  understands   dementia  as  a  complex  collection  of  conditions,  occuring  in  relation  to  surrounding  social  environment,  rather  than  being  an  attribute  of  a  single   individual  (Antelius  2009;  Kitwood  1997).   ii  Relevant  to  this  progression  of  understanding  dementia  and  the  people  affected  is  that  the  term  demented  points  to  the  idea  of  someone  being   one’s  disease  and  should  preferably  be  replaced  by  the  more  active/agentive  approach  of  saying  persons  with  dementia  diseases.  However,  as  the   readers  will  notice  throughout  the  paper,  the  term  demented  is  still  used,  but  ONLY  when  directly  quoted  from  interviewees.  We  have  thus  not   gone  into  correcting  people’s  statements,  but  as  researchers  within  dementia  studies  we  only  use  the  term  persons  with  dementia  diseases  in  our   own  analyses.   iii  In  the  paper  concepts  such  as  culture,  ethnicity  and  ethnocultural  are  used  throughout  the  discussion.  A  clarification  regarding  these  concepts  is   necessary,  however  any  clear-­‐cut  definition  is  (almost)  impossible  to  give,  simply  because  the  literature  does  not  provide  such  a  definition.   Multiple  definitions  are  to  be  found  as  well  as  the  fact  that  the  two  concepts  of  culture  and  ethnicity  are  often  used  interchangeably  (Valle  1998).   We  will  not  try  to  resolve  these  definition  issues  here,  but  instead  take  on  a  more  practical  approach.  We  will  try  to  use  the  concepts  as  our   informants  give  meaning  to  them.  However,  a  note  should  be  made  that  there  are  differences  between  the  concepts,  where  culture  is  often   understood  as  the  values,  traditions  and  beliefs  of  a  group  while  ethnicity  is  the  active  expression  of  such  culture  (ibid:  10).  Thus,  culture  could  be   understood  as  the  forms  of  behaviour  a  person  has  acquired  in  being  a  member  of  (a  certain)  society  while  ethnicity  has  more  to  do  with  the   social  relations  between  such  members.  The  fact  that  two  groups  could  be  said  to  be  culturally  distinctive  does  not  create  ethnicity.  Ethnicity  only   occurs  when  cultural  differences  are  made  relevant  through  interaction  (Eriksen  1993).  Our  use  of  the  concept  ethnocultural  thus  points  to  the   fact  that  people  can  never  really  belong  to  a  culture  and  ethnicity  concerns  what  is  socially  relevant,  not  which  cultural  differences  that  are   actually  there.  Hence,  ethnicity  and  culture  need  to  be  understood  as  intertwined.   iv  For  more  information  regarding  the  AGE  project,  and  its  results,  see  for  instance  Fry  et  al.  1997.   v  See  Dilworth-­‐Anderson  and  Gibson  2002;  Leibing  2002;  Leibing  and  Cohen  2006;  Henderson  2002;  Henderson  and  Henderson  2002;  Henderson   and  Traphagan  2005;  Traphagan  2002,  2005,  2009.   vi  The  naming  of  profiled  care  groups  in  this  study  range  from  Arab,  to  Oriental,  to  Middle  Eastern.  However,  when  talking  to  the  informants  most   of  them  use  the  term  Middle  Eastern  (or  sometime  Arab),  thus  we  have  chosen  to  use  the  most  common  name/term  that  the  interviews   themselves  use.   vii  These  guidelines  are  now  being  audited  and  new  guidelines  are  to  be  published  in  the  fall  of  2016.   viii  For  other  examples,  see  for  instance  the  special  issue  ‛Ethnocultural  contextualization  of  dementia  care:  cross-­‐cultural  perceptions  on  the   notion  of  self’  in  Care  Management  Journals  16(2),  62-­‐120.   ix  All  naming  of  cultural  groups  are  the  care  providers’  own.   x  For  studies  from  this  Persian-­‐oriented  dementia  care  facility,  please  see  Antelius  and  Kiwi  2015;  Kiwi,  Hydén  and  Antelius,  forthcoming.   xi  See  for  instance  Antelius  &  Kiwi  2015;  Kiwi,  Antelius  &  Hydén,  forthcoming.   xii  The  word  'demented'  implies  that  someone  is  their  disease,  a  term  nowadays  seldom  used  in  dementia  studies.  In  order  to  put  forward  an   agentive  approach  the  term  person  with  dementia  should  instead  be  used  (as  we  do  in  this  article).  However,  in  the  instances  an  interviewee  has   used  the  word  'demented'  we  have  of  course  not  changed  this.   xiii  In  regards  to  dementia  care,  several  research  reviews  touch  upon  this  subject,  see  for  instance  Botsford,  Clarke  and  Gibb  2011;  Daker-­‐White,   Beattie,  Gilliard  and  Means  2002;  Janevic  and  Connell  2001;  Mukadam,  Cooper  and  Livingston  2011;  Connell  and  Gibson  1997.   xiv  It  is  important  to  emphasize  that  acculturation  is  not  the  same  as  assimilation.  The  lessening  of  cultural  distance  (acculturation)  does  not   necessarily  mean  that  a  symmetrical  lessening  of  social  distance  (assimilation)  will  occur.   xv  This  ambiguity  is  in  fact  something  that  the  acculturation  theory    does  not  seem  to  fully  account  for  and  a  forthcoming  article,  Dementia  in  the   age  of  migration:  the  dispruption  of  cultural  continuity  as  a  cause  of  illness?    will  elaborate  further  on  this  subject  and  discuss  healthcare  in   migratory  contexts  in  relation  to  issues  of  transnationalism  and  simultainity.