Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022.

Whitley W Aamodt, Benzi M Kluger, Miray Mirham, Anna Job, Samantha E Lettenberger, Philip E Mosley, Sandhya Seshadri
Author Information
  1. Whitley W Aamodt: Department of Neurology, University of Pennsylvania, Philadelphia, PA, USA. ORCID
  2. Benzi M Kluger: Department of Neurology, University of Rochester, Rochester, NY, USA.
  3. Miray Mirham: School of Medicine, University of Rochester, Rochester, NY, USA.
  4. Anna Job: University of Rochester, Rochester, NY, USA.
  5. Samantha E Lettenberger: Center for Health & Technology, University of Rochester, Rochester, NY, USA.
  6. Philip E Mosley: School of Medicine, University of Queensland, Herston, QLD, Australia.
  7. Sandhya Seshadri: Department of Neurology, University of Rochester, Rochester, NY, USA.

Abstract

Caregiver burden is a term that refers to the adverse effect of caregiving on the physical, emotional, social, spiritual, and financial well-being of the caregiver. Caregiver burden is associated with providing care to an individual with a chronic illness or disability, and the unique symptoms of Parkinson Disease (PD) can amplify a patient's needs and reliance on others, leading to adverse outcomes for patients and their caregivers. In this scoping review of the literature from January 2017 through April 2022 that included 114 studies, we provide an updated, evidence-based summary of patient and caregiver-related factors that contribute to caregiver burden in PD. We also describe the impact of caregiver stress and burden on caregivers based on qualitative research studies and review recent interventions to mitigate burden. By providing clinical updates for practitioners, this review is designed to improve recognition of caregiver burden in the post-pandemic era and foster the development of targeted interventions to reduce caregiver burden in PD.

Keywords

References

  1. Parkinsonism Relat Disord. 2020 Sep;78:27-30 [PMID: 32679528]
  2. Mov Disord Clin Pract. 2016 Oct 01;4(1):84-89 [PMID: 30713950]
  3. Palliat Med. 2021 Jul;35(7):1258-1266 [PMID: 34006157]
  4. J Adv Nurs. 2020 Oct;76(10):2719-2732 [PMID: 32798329]
  5. Neurology. 2018 Jan 2;90(1):e48-e54 [PMID: 29196580]
  6. Neuropsychiatr Dis Treat. 2020 Dec 02;16:2899-2912 [PMID: 33293815]
  7. Mov Disord Clin Pract. 2020 Nov 13;8(1):60-68 [PMID: 33426160]
  8. Oman Med J. 2020 Nov 30;35(6):e205 [PMID: 33274072]
  9. Parkinsons Dis. 2018 Apr 8;2018:1362053 [PMID: 29850013]
  10. Can J Neurol Sci. 2022 May;49(3):437-440 [PMID: 33988099]
  11. Brain Behav. 2017 Aug 01;7(9):e00787 [PMID: 28948082]
  12. J Appl Gerontol. 2022 May;41(5):1357-1364 [PMID: 35220779]
  13. NPJ Parkinsons Dis. 2018 Apr 17;4:12 [PMID: 29675463]
  14. Aging Ment Health. 2017 Oct;21(10):1007-1016 [PMID: 27802771]
  15. Behav Neurol. 2019 Dec 1;2019:1396572 [PMID: 31871491]
  16. Ann Palliat Med. 2020 Feb;9(Suppl 1):S24-S33 [PMID: 31735048]
  17. Dysphagia. 2022 Jun;37(3):523-532 [PMID: 33991229]
  18. J Neurol. 2018 Sep;265(9):2005-2014 [PMID: 29951701]
  19. Parkinsonism Relat Disord. 2020 Sep;78:4-8 [PMID: 32659619]
  20. Ann Palliat Med. 2020 Feb;9(Suppl 1):S34-S43 [PMID: 32146821]
  21. Front Neurol. 2019 May 28;10:561 [PMID: 31191444]
  22. Psychol Health. 2017 May;32(5):549-566 [PMID: 28276746]
  23. J Geriatr Psychiatry Neurol. 2023 Nov;36(6):505-510 [PMID: 37081815]
  24. Int J Geriatr Psychiatry. 2018 Oct;33(10):1327-1334 [PMID: 29953689]
  25. Disabil Rehabil. 2022 May;44(10):1939-1945 [PMID: 32915084]
  26. Int J Geriatr Psychiatry. 2017 Dec;32(12):1362-1370 [PMID: 27925292]
  27. Aging Ment Health. 2019 Mar;23(3):337-344 [PMID: 29293027]
  28. Age Ageing. 2018 Jul 1;47(4):604-610 [PMID: 29617933]
  29. Sci Rep. 2021 Jan 13;11(1):957 [PMID: 33441640]
  30. Int J Clin Pharm. 2022 Feb;44(1):53-63 [PMID: 34318400]
  31. Clin Gerontol. 2019 Jul-Sep;42(4):444-453 [PMID: 30821649]
  32. Neurol India. 2021 Nov-Dec;69(6):1706-1710 [PMID: 34979673]
  33. Brain Sci. 2020 Jun 24;10(6): [PMID: 32599704]
  34. Parkinsons Dis. 2021 Mar 15;2021:9475026 [PMID: 33815742]
  35. J Geriatr Psychiatry Neurol. 2022 Sep;35(5):671-679 [PMID: 34607483]
  36. Int Psychogeriatr. 2019 Jul;31(7):1039-1045 [PMID: 30318024]
  37. Rehabil Psychol. 2020 May;65(2):137-144 [PMID: 32068420]
  38. Brain Sci. 2021 Feb 26;11(3): [PMID: 33652825]
  39. J Parkinsons Dis. 2019;9(1):221-227 [PMID: 30584152]
  40. Am J Epidemiol. 2003 Jun 1;157(11):1015-22 [PMID: 12777365]
  41. Scand J Caring Sci. 2022 Mar;36(1):49-58 [PMID: 33559921]
  42. Parkinsonism Relat Disord. 2020 Dec;81:20-27 [PMID: 33038702]
  43. BMC Med Res Methodol. 2018 Nov 19;18(1):143 [PMID: 30453902]
  44. Dement Neuropsychol. 2018 Jul-Sep;12(3):299-305 [PMID: 30425794]
  45. Health Soc Care Community. 2019 Sep;27(5):1303-1310 [PMID: 31149757]
  46. J Parkinsons Dis. 2020;10(3):1217-1230 [PMID: 32538865]
  47. Transl Neurodegener. 2017 Jun 19;6:17 [PMID: 28638598]
  48. JAMA. 2014 Mar 12;311(10):1052-60 [PMID: 24618967]
  49. NPJ Parkinsons Dis. 2021 Nov 30;7(1):108 [PMID: 34848716]
  50. Int J Qual Stud Health Well-being. 2022 Dec;17(1):2018769 [PMID: 34978276]
  51. Brain Sci. 2022 Jan 23;12(2): [PMID: 35203912]
  52. Ann Indian Acad Neurol. 2020 Sep-Oct;23(5):656-660 [PMID: 33623267]
  53. Parkinsons Dis. 2020 Feb 24;2020:5184084 [PMID: 32184980]
  54. JAMA Neurol. 2018 Jan 1;75(1):9-10 [PMID: 29131880]
  55. J Geriatr Psychiatry Neurol. 2017 Sep;30(5):267-272 [PMID: 28747135]
  56. Brain Sci. 2022 Jan 14;12(1): [PMID: 35053854]
  57. Mov Disord Clin Pract. 2021 Apr 12;8(4):510-520 [PMID: 33981783]
  58. Chronic Illn. 2020 Sep;16(3):201-211 [PMID: 30208725]
  59. Health Soc Care Community. 2022 Sep;30(5):e2395-e2405 [PMID: 34904318]
  60. Mov Disord. 2021 Jan;36(1):106-117 [PMID: 33002231]
  61. Curr Alzheimer Res. 2021;18(3):222-231 [PMID: 34102971]
  62. Mov Disord Clin Pract. 2021 Sep 12;8(7):1061-1074 [PMID: 34631942]
  63. J Geriatr Psychiatry Neurol. 2022 Sep;35(5):663-670 [PMID: 34587822]
  64. J Geriatr Psychiatry Neurol. 2017 Sep;30(5):235-252 [PMID: 28743212]
  65. Cureus. 2019 Apr 1;11(4):e4358 [PMID: 31192063]
  66. Parkinsonism Relat Disord. 2020 Sep;78:61-65 [PMID: 32736164]
  67. J Geriatr Psychiatry Neurol. 2021 Sep;34(5):454-465 [PMID: 32400266]
  68. Front Neurol. 2020 Sep 18;11:576121 [PMID: 33071952]
  69. Am J Alzheimers Dis Other Demen. 2017 Aug;32(5):300-306 [PMID: 28612623]
  70. J Geriatr Psychiatry Neurol. 2023 May;36(3):233-245 [PMID: 36268777]
  71. Parkinsonism Relat Disord. 2021 Feb;83:115-122 [PMID: 33339716]
  72. Int Psychogeriatr. 2020 Jun;32(6):733-739 [PMID: 31647049]
  73. Ther Adv Neurol Disord. 2019 Jul 04;12:1756286419852217 [PMID: 31320931]
  74. BMJ Support Palliat Care. 2017 Jun;7(2):164-172 [PMID: 26182947]
  75. PLoS One. 2021 Mar 19;16(3):e0248968 [PMID: 33740031]
  76. Brain Sci. 2022 Jan 11;12(1): [PMID: 35053832]
  77. J Neurol. 2021 Mar;268(3):1102-1109 [PMID: 33108538]
  78. Ann Intern Med. 2018 Oct 2;169(7):467-473 [PMID: 30178033]
  79. Brain Behav. 2020 Sep;10(9):e01753 [PMID: 32683797]
  80. J Palliat Med. 2017 Sep;20(9):930-938 [PMID: 28520498]
  81. Neuroepidemiology. 2017;48(3-4):131-137 [PMID: 28728161]
  82. J Appl Gerontol. 2021 Aug;40(8):881-889 [PMID: 32401118]
  83. Parkinsons Dis. 2017;2017:4697052 [PMID: 28286689]
  84. J Parkinsons Dis. 2021;11(3):1047-1056 [PMID: 33780375]
  85. Rehabil Res Pract. 2019 Jan 31;2019:3082325 [PMID: 30838135]
  86. Ideggyogy Sz. 2018 Sep 30;71(9-10):343-350 [PMID: 30335267]
  87. Mov Disord. 2007 May 15;22(7):924-31; quiz 1060 [PMID: 17238193]
  88. Complement Ther Clin Pract. 2021 May;43:101377 [PMID: 33831804]
  89. NeuroRehabilitation. 2019 Dec 18;45(4):433-442 [PMID: 31868689]
  90. Int J Qual Stud Health Well-being. 2021 Dec;16(1):1967263 [PMID: 34414851]
  91. Am J Manag Care. 2020 Oct;26(12 Suppl):S265-S269 [PMID: 33058689]
  92. Brain Sci. 2021 Nov 06;11(11): [PMID: 34827469]
  93. J Parkinsons Dis. 2020;10(4):1631-1642 [PMID: 32651330]
  94. Rev Neurol (Paris). 2018 Dec;174(10):711-715 [PMID: 30032927]
  95. J Adv Nurs. 2021 Dec;77(12):4632-4645 [PMID: 34146346]
  96. J Neurol. 2018 May;265(5):1124-1137 [PMID: 29516169]
  97. Neurologia (Engl Ed). 2018 Apr;33(3):154-159 [PMID: 27443241]
  98. J Clin Nurs. 2020 Dec;29(23-24):4623-4632 [PMID: 32956513]
  99. J Neurol. 2021 Aug;268(8):2961-2972 [PMID: 33629181]
  100. Brain Sci. 2021 Jun 21;11(6): [PMID: 34205764]
  101. Neurol Sci. 2022 Jan;43(1):341-348 [PMID: 33948763]
  102. Gerontologist. 2002 Dec;42(6):772-80 [PMID: 12451158]
  103. J Parkinsons Dis. 2022;12(4):1285-1293 [PMID: 35275557]
  104. JAMA Neurol. 2020 May 1;77(5):551-560 [PMID: 32040141]
  105. Acta Neurol Scand. 2019 Jul;140(1):17-22 [PMID: 30953570]
  106. Gerontologist. 1986 Jun;26(3):260-6 [PMID: 3721233]
  107. J Pain Symptom Manage. 2022 Jan;63(1):e88-e110 [PMID: 34147576]
  108. Neurol Sci. 2018 May;39(5):835-839 [PMID: 29445989]
  109. Neurol Res Int. 2020 Feb 14;2020:7906547 [PMID: 32110449]
  110. Front Aging Neurosci. 2018 Apr 24;10:120 [PMID: 29740312]
  111. Parkinsons Dis. 2020 Apr 30;2020:6920943 [PMID: 32399171]
  112. Front Psychiatry. 2020 Dec 14;11:590134 [PMID: 33381057]
  113. PLoS One. 2019 May 31;14(5):e0217581 [PMID: 31150470]
  114. Appl Nurs Res. 2020 Feb;51:151186 [PMID: 31635885]
  115. J Geriatr Psychiatry Neurol. 2022 Jan;35(1):110-120 [PMID: 33094677]
  116. Aging Clin Exp Res. 2021 Apr;33(4):991-996 [PMID: 32488473]
  117. Psychogeriatrics. 2017 Mar;17(2):97-102 [PMID: 27338524]
  118. Neurol Clin Pract. 2021 Dec;11(6):e826-e833 [PMID: 34992965]
  119. J Geriatr Psychiatry Neurol. 2021 Sep;34(5):418-425 [PMID: 32588710]
  120. J Geriatr Psychiatry Neurol. 2021 Sep;34(5):389-396 [PMID: 32787622]
  121. Psychiatry Investig. 2019 Apr;16(4):285-291 [PMID: 31042690]

Grants

  1. K02 AG062745/NIA NIH HHS
  2. T32 NS061779/NINDS NIH HHS

MeSH Term

Humans
Caregiver Burden
Cost of Illness
Parkinson Disease
Caregivers
Emotions
Quality of Life

Word Cloud

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