Community Rehabilitation and Palliative Care for

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energy conserva%on to her caregiver, and sugges%ng the assis%ve devices or home modifica%on. There are three points could be improved in the future. First ...

Community Rehabilitation and Palliative Care for Dementia: An Occupational Therapist’s perspective 1 Yeh *,

2 Liu ,

1 Lee ,

1 Lee

Hsin-Hsiu Essential Hsing-Cheng Shu-Chun & Kung-Hsien 1 2 Department of Occupational Therapy , Department of General Psychiatry , Taipei City Psychiatric Center, Taipei City Hospital Corresponding Author: Hsin-Hsiu Essential Yeh, Email: [email protected] Interventions

Introduction Occupa&onal  therapy  (OT)  as  a  professional  of  rehabilita&on  u&lizes  meaningful  ac&vi&es   as  the  core  of  interven&on  to  maximize  pa&ent’s  func&onal  capacity,  and  reduces  the   restric&on  of  environment  to  ameliorate  the  influence  of  diseases  in  pa&ents’  daily  life.   Demen&a  pa&ents  and  their  caregivers  face  the  irreversible  func&onal  deteriora&on  with   disease  progression.  It  is  necessary  for  pa&ents  and  their  caregivers  to  adjust  their  meaningful   ac&vi&es  according  to  pa&ents’  current  func&onal  capacity  in  order  to  live  with  dignity  un&l   pa&ents’  end-­‐of-­‐life.  Therefore,  OT  could  provide  various  services  to  work  with  pa&ents  and   their  caregivers  since  diagnosed  to  death.   The  educa&on  of  OT  in  Taiwan  includes  physical  and  psychosocial  domains.  This  kind  of   educa&on  could  make  OT  holis&cally  and  longitudinally  care  pa&ents  with  demen&a.  However,   the  scope  of  benefits  of  Taiwan’s  Na&onal  Health  Insurance  (NHI)  has  not  included   rehabilita&on  professions  into  pallia&ve  care.  This  policy  causes  these  pa&ents  and  their   caregivers  could  not  easily  get  OT  services  when  these  pa&ents  are  in  the  terminal  stage  of   demen&a.  Addi&onally,  this  policy  also  affects  Taiwan’s  OT    to  develop  a  clinical  model  or   therapeu&c  program  in  pallia&ve  care.    Through  the  support  from  Taipei  City  Hospital,  OT  could  have  a  rare  opportunity  to  provide   services  without  payment  from  NHI  to  a  pa&ent  at  the  terminal  stage  of  demen&a  and  her   caregiver  at  their  home.  Based  on  this  clinical  experience,  this  study  proposed  what  is  OT’s  role   for  terminal  demen&a  pa&ents  from  the  macro-­‐  and  micro-­‐perspec&ve  and  indicated  the   direc&on  of  OT  in  pallia&ve  care.      

In  the  first  visi&ng,  OT  checked  this  pa&ent’s  current  func&onal  status,  such  as  mo&on,   sensa&on,  percep&on  and  cogni&ve  level.  This  pa&ent  did  not  have  the  ability  to   purposefully  interact  with  other  people  and  her  ADL  ability  was  totally  dependent.  APer   that,  OT  asked  her  foreign  nursing  worker  about  this  pa&ent’s  daily  rou&ne  and  evaluated   her  caring  skills,  such  as  bedsore  preven&on,  posi&oning,  transferring,  feeding,    bathing,   personal  hygiene,  and  dressing.  OT  invited  this  caregiver  to  demonstrate  how  she  executed,   and  then  educated  the  techniques  of  energy  conserva&on,  such  as  modify  some  sequences   of  bathing  or  adjust  caregiver’s  posture  during  transferring.  In  addi&on,  OT  introduced  the   concept  of  “being”  in  meaningful  ac&vi&es  to  her  caregivers  and  discussed  how  to  include  it   into  the  pa&ent’s  daily  rou&ne  with  current  resources.     In  the  second  visit,  OT  provided  some  sugges&ons  about  home  modifica&on  and  assis&ve   devices  for  this  pa&ent’s  family.  According  to  Taiwan’s  government  policy  about  assis&ve   devices,  pa&ents  have  to  make  an  appointment  with  one  Assis&ve  Technology  Center  for   evalua&on  in  order  to  buy  new  devices  with  the  government  subsidies  or  rent  old  devices   with  free.  Hence,  OT  provided  some  documents  about  the  Assis&ve  Technology  Centers  or   other  related    associa&ons  or  companies  near  her  home  for  further  consulta&on  of  assis&ve   devices  or  home  modifica&on.    

OT’s Reflection

Method This  is  a  case  report.  OT  provided  home  visits  twice  with  a  pallia&ve  care  team  for  a  pa&ent   with  terminal  stage  of  demen&a  because  this  service  is  not  the  scope  of  benefits  of  Taiwan’s   NHI.     In  the  first  visit,  OT  worked  with  a  pallia&ve  care  team  of  Taipei  City  Psychiatric  Center  (TCPC)   to  meet  with  this  pa&ent  and  her  family  members.  There  were  two  doctors,  two  nurses,  one   social  worker,  and  one  OT  of  this  pallia&ve  care  team  to  hold  the  first  family  mee&ng  with  this   pa&ent  and  her  family.  In  this  first  family  mee&ng,  the  pallia&ve  care  team  explained  this   pa&ent’s  course  of  disease,  introduced  what  is  pallia&ve  care,  understood  what’s  the  difficul&es   on  caring  this  pa&ent  in  the  terminal  stage  of  demen&a,  listened  to  par&cipants’  expecta&on   about  this  pa&ent’s  dying  prepara&on,  and  discussed  what  kinds  of  services  could  be  offered  by   this  pallia&ve  care  team.  In  the  end  of  this  family  mee&ng,  all  par&cipants  agreed  this  pa&ent  to   change  from  outpa&ent  service  into  pallia&ve  care.   APer  this  first  family  mee&ng,  there  were  two  nurses  and  one  doctor  of  the  pallia&ve  care   team  visi&ng  this  pa&ent  once  per  month  to  check  her  physical  status  and  provide  medicine.     Almost  two  month  laQer,  OT  could  visit  this  pa&ent  again  with  two  nurses  and  one  social   worker.  This  was  also  the  last  &me  for  OT  to  visit  this  pa&ent  before  she  died.    

Patient Description Pa&ent  was  a  70  y/o  single  female  in  2015  when  the  pallia&ve  care  team  first  visit  her.  She  had   six  siblings  (two  brothers  and  4  sisters)  and  was  the  second  child  of  her  family.  Her  highest   educa&onal  level  was  senior  high  school  .  She  worked  in  a  newspaper  office  as  a  general  affairs   for  over  10  years.  APer  her  mother  died,  she  didn’t  work  and  lived  alone  for  10  years.  During  this   period  of  &me,  she  could  help  to  take  care  of  her  siblings’  children.   She  started  significant  func&onal  deteriora&on  at  her  age  of  61  and  diagnosed  as   Frontotemporal  Demen&a    (FTD)  at  63  y/o.  When  she  was  66  y/o,  she  had  aphasia,  poor  impulse   control,  and  restless  behaviors,  so  her  sisters  hired  a  full&me  foreign  nursing  worker  as  her  major   caregiver.  At  that  &me,  she  CDR  was  3  and  could  not  be  tested  with  MMSE,  so  most  of   psychological  assessments  were  collected  from  interview  with  her  families  and  professional’s   observa&on.  She  had  regular  outpa&ent  services  between  2011  to  2015.  APer  her  aQending   physician’s  neurological  evalua&on,  she  was  referred  to  the  pallia&ve  care  team  with  the  same   aQending  physician.  

Discussion In  this  case,  OT  focused  on  providing  safe  and  comfort  environment  for  this  pa&ent  with   checking  pa&ent’s  current  func&on  and  caregiver’s  caring  skills,  providing  educa&on  about   energy  conserva&on  to  her  caregiver,  and  sugges&ng  the  assis&ve  devices  or  home   modifica&on.     There  are  three  points  could  be  improved  in  the  future.  First,  beyond  providing   sugges&ons  for  a  safety  and  confortable  environment  in  the  terminal  demen&a,  OT  could   spend  more  effort  on  integra&ng  the  concept  of  “being”  with  meaningful  ac&vi&es  for   these  demen&a  pa&ents.  If  OT  could  provide  more  &mes  of  services  from  the  stage  of   diagnosing,  pa&ents  could  par&cipant  more  meaningful  ac&vi&es  based  on  pa&ent-­‐ centered  design.  Second,  OT  or  other  professionals  of  rehabilita&on  need  to  collect  more   clinical  experiences  and    research  in  the  field  of  pallia&ve  care  to  introduce  what   professionals  of  rehabilita&on  could  do  in  pallia&ve  care  for  other  medical  members,   pa&ents  and  caregivers.  Third,  with    more  clear  and  evidence-­‐based  direc&ons  of   rehabilita&on  services  in  pallia&ve  care,  OT  and  other  professionals  of  rehabilita&on  could   convince  the  Taiwan’s  NHI  to  consider  including  rehabilita&on  services  into  pallia&ve  care.    

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