Generic placeholder image

Current Alzheimer Research


ISSN (Print): 1567-2050
ISSN (Online): 1875-5828

Research Article

Parkinson’s Symptoms and Caregiver Affiliate Stigma: A Multinational Study

Author(s): Richard S. Henry, Paul B. Perrin*, Sarah K. Lageman, Teresita Villaseñor, Annahir N. Cariello, Mickeal Pugh, Erin R. Smith, Monica Arroyo, Alejandra Zarate, Judith Avila and Jose A. Soto-Escageda

Volume 18, Issue 3, 2021

Published on: 23 September, 2021

Page: [222 - 231] Pages: 10

DOI: 10.2174/1567205018666210608100917

Price: $65


Background and Objective: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson’s disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer’s disease are discussed.

Methods: Survey data were collected in PD clinics at public, academic medical centers. Informal caregivers of an individual with PD from the US (n = 105) and from Mexico (n = 148) participated in the study. Caregivers completed a questionnaire that included the MDS Unified PD Rating Scale to describe the symptoms of the individual with PD, as well as the Affiliate Stigma Scale and demographic information.

Results: A series of multiple regressions was run to examine whether PD symptoms were associated with affiliate stigma and if these differed by country. These regressions suggested that different patterns of PD symptoms predicted affiliate stigma in each country. Stigma was higher in the US compared to Mexico, and the relationship between bowel/bladder symptoms and affiliate stigma was significantly stronger in the US.

Conclusion: Symptoms of individuals with neurodegenerative diseases are related to affiliate stigma experienced by caregivers, and these relationships may differ cross-culturally. Negative public attitudes concerning bowl and bladder issues and the physical symptoms that accompany PD remain a source of stigma for caregivers and families, particularly in the US. Interventions for caregivers of individuals with neurodegenerative diseases should include strategies for coping with stigma concerning bladder and bowel problems, as well as other physical and mental health issues.

Keywords: Multinational, neurodegenerative disease, family stigma, symptoms, Alzheimer's disease, neurons.

Alves G, Forsaa EB, Pedersen KF, Dreetz Gjerstad M, Larsen JP. Epidemiology of Parkinson’s disease. J Neurol 2008; 255(5): 18-32.
[] [PMID: 18787879]
Lang AE, Lozano AM. Parkinson’s disease. Second of two parts. N Engl J Med 1998; 339(16): 1130-43.
[] [PMID: 9770561]
Ascherio A, Schwarzschild MA. The epidemiology of Parkinson’s disease: Risk factors and prevention. Lancet Neurol 2016; 15(12): 1257-72.
[] [PMID: 27751556]
Pringsheim T, Jette N, Frolkis A, Steeves TDL. The prevalence of Parkinson’s disease: A systematic review and meta-analysis. Mov Disord 2014; 29(13): 1583-90.
[] [PMID: 24976103]
Marras C, Beck JC, Bower JH, et al. Prevalence of Parkinson’s disease across North America. NPJ Parkinsons Dis 2018; 4: 21.
[] [PMID: 30003140]
Mahajan A, Balakrishnan P, Patel A, et al. Epidemiology of inpatient stay in Parkinson’s disease in the United States: Insights from the Nationwide Inpatient Sample. J Clin Neurosci 2016; 31: 162-5.
[] [PMID: 27242063]
Rodríguez-Violante M, Villar-Velarde A, Valencia-Ramos C, Cervantes-Arriaga A. Características epidemiológicas de pacientes con enfermedad de Parkinson de un hospital de referencia en México. Arch Neurocienc 2011; 16: 64-8.
Parkinson’s Foundation. Park Found 2017. Available from: Accessed 17 Jul 2018.
Moore S, Knowles S. Beliefs and knowledge about Parkinson’s disease. E J Appl Psychol 2006; 2: 15-21.
Goffman E. Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster 1963.
Hermanns M. The invisible and visible stigmatization of Parkinson’s disease. J Am Assoc Nurse Pract 2013; 25(10): 563-6.
[] [PMID: 24170489]
Burgener SC, Berger B. Measuring perceived stigma in persons with progressive neurological disease: Alzheimer’s dementia and Parkinson’s disease. Dementia 2008; 7: 31-53.
Hemmesch AR, Tickle-Degnen L, Zebrowitz LA. The influence of facial masking and sex on older adults’ impressions of individuals with Parkinson’s disease. Psychol Aging 2009; 24(3): 542-9.
[] [PMID: 19739910]
Jaywant A, Pell MD. Listener impressions of speakers with Parkinson’s disease. J Int Neuropsychol Soc 2010; 16(1): 49-57.
[] [PMID: 19758475]
Tickle-Degnen L, Zebrowitz LA, Ma HI. Culture, gender and health care stigma: Practitioners’ response to facial masking experienced by people with Parkinson’s disease. Soc Sci Med 2011; 73(1): 95-102.
[] [PMID: 21664737]
Ashworth R. Perceptions of stigma among people affected by early- and late-onset Alzheimer’s disease. J Health Psychol 2020; 25(4): 490-510.
[] [PMID: 28810495]
Bunn F, Goodman C, Sworn K, et al. Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: A systematic review of qualitative studies. PLoS Med 2012; 9(10): e1001331.
[] [PMID: 23118618]
Elliot VL, Morgan D, Kosteniuk J, Froehlich Chow A, Bayly M. Health-related stigma of noncommunicable neurological disease in rural adult populations: A scoping review. Health Soc Care Community 2019; 27(4): e158-88.
[] [PMID: 30548727]
Nguyen T, Li X. Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature. Dementia 2020; 19(2): 148-81.
[] [PMID: 31920117]
Chiong-Rivero H, Ryan GW, Flippen C, et al. Patients’ and caregivers’ experiences of the impact of Parkinson’s disease on health status. Patient Relat Outcome Meas 2011; 2011(2): 57-70.
[] [PMID: 21691459]
Mshana G, Dotchin CL, Walker RW. ‘We call it the shaking illness’: Perceptions and experiences of Parkinson’s disease in rural northern Tanzania. BMC Public Health 2011; 11: 219.
[] [PMID: 21477284]
Maffoni M, Giardini A, Pierobon A, Ferrazzoli D, Frazzitta G. Stigma experienced by Parkinson’s disease patients: A descriptive review of qualitative studies. Parkinsons Dis 2017; 2017: 7203259.
[] [PMID: 28243481]
Oguh O, Kwasny M, Carter J, Stell B, Simuni T. Caregiver strain in Parkinson’s disease: National Parkinson Foundation Quality Initiative study. Parkinsonism Relat Disord 2013; 19(11): 975-9.
[] [PMID: 23871587]
Schrag A, Hovris A, Morley D, Quinn N, Jahanshahi M. Caregiver-burden in parkinson’s disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism Relat Disord 2006; 12(1): 35-41.
[] [PMID: 16271496]
Jeong J-S, Kim SY, Kim J-N. Ashamed caregivers: self-stigma, information, and coping among dementia patient families. J Health Commun 2020; 25(11): 870-8.
[] [PMID: 33238810]
Lyons KE, Pahwa R, Troster AI, Koller WC. A comparison of Parkinson’s disease symptoms and self-reported functioning and well being. Parkinsonism Relat Disord 1997; 3(4): 207-9.
[] [PMID: 18591077]
Chapuis S, Ouchchane L, Metz O, Gerbaud L, Durif F. Impact of the motor complications of Parkinson’s disease on the quality of life. Mov Disord 2005; 20(2): 224-30.
[] [PMID: 15384126]
Miller N, Noble E, Jones D, Burn D. Hard to swallow: Dysphagia in Parkinson’s disease. Age Ageing 2006; 35(6): 614-8.
[] [PMID: 17047007]
Fereshtehnejad S-M, Shafieesabet M, Shahidi GA, Delbari A, Lökk J. Restless legs syndrome in patients with Parkinson’s disease: A comparative study on prevalence, clinical characteristics, quality of life and nutritional status. Acta Neurol Scand 2015; 131(4): 211-8.
[] [PMID: 25263328]
Gunnery SD, Saint-Hilaire M-H, Thomas C, Tickle-Degnen L. Emerging evidence for facial muscle action as a predictor of experienced stigma in Parkinson’s disease. Arch Phys Med Rehabil 2015; 96: e74.
Hemmesch AR. The detrimental effects of atypical nonverbal behavior on older adults’ first impressions of individuals with Parkinson’s disease. Psychol Aging 2014; 29(3): 521-7.
[] [PMID: 25244472]
Yang LH, Valencia E, Alvarado R, et al. A theoretical and empirical framework for constructing culture-specific stigma instruments for Chile. Cad Saude Colet 2013; 21(1): 71-9.
[] [PMID: 23990755]
Ruiz-Torres Y, Cintrón-Bou FN, Varas-Díaz N. AIDS-related stigma and health professionals in puerto rico. Interam J Psychol 2007; 41(1): 49-56.
[PMID: 21423837]
Schilling S, Bustamante JA, Sala A, et al. Development of an intervention to reduce self-stigma in outpatient mental health service users in Chile. Rev Fac Cien Med Univ Nac Cordoba 2015; 72(4): 284-94.
[PMID: 27107279]
Blay SL, Toledo Pisa Peluso E. Public stigma: The community’s tolerance of Alzheimer disease. Am J Geriatr Psychiatry 2010; 18(2): 163-71.
[] [PMID: 20104072]
Vázquez GH, Kapczinski F, Magalhaes PV, et al. Stigma and functioning in patients with bipolar disorder. J Affect Disord 2011; 130(1-2): 323-7.
[] [PMID: 21055821]
Loch AA. Stigma and higher rates of psychiatric re-hospitalization: São Paulo public mental health system. Br J Psychiatry 2012; 34(2): 185-92.
[] [PMID: 22729415]
Goetz CG, Tilley BC, Shaftman SR, et al. Movement Disorder Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS): Scale presentation and clinimetric testing results. Mov Disord 2008; 23(15): 2129-70.
[] [PMID: 19025984]
Martinez-Martin P, Rodriguez-Blazquez C, Alvarez-Sanchez M, et al. Expanded and independent validation of the Movement Disorder Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS). J Neurol 2013; 260(1): 228-36.
[] [PMID: 22865238]
Mak WWS, Cheung RYM. Affiliate stigma among caregivers of people with intellectual disability or mental illness. J Appl Res Intellect Disabil 2008; 21: 532-45.
Chapman DW, Carter JF. Translation procedures for the cross cultural use of measurement instruments. Educ Eval Policy Anal 1979; 1: 71-6.
Cohen J, Cohen P, West SG, Aiken LS. Applied multiple regression/correlation analysis for the behavioral sciences. 3rd ed. Mahwah, NJ, US: Lawrence Erlbaum Associates Publishers 2003.
Agrest M, Mascayano F, Ardila-Gómez SE, et al. Mental illness stigma research in Argentina. BJPsych Int 2015; 12(4): 86-8.
[] [PMID: 29093869]
Frenk J, Gómez-Dantés O, Knaul FM. The democratization of health in Mexico: Financial innovations for universal coverage. Bull World Health Organ 2009; 87(7): 542-8.
[] [PMID: 19649369]
Hicken BL, Putzke JD, Richards JS. Bladder management and quality of life after spinal cord injury. Am J Phys Med Rehabil 2001; 80(12): 916-22.
[] [PMID: 11821674]
Tamanini JTN, Santos JLF, Lebrão ML, Duarte YA, Laurenti R. Association between urinary incontinence in elderly patients and caregiver burden in the city of Sao Paulo/Brazil: Health, Wellbeing, and Ageing Study. Neurourol Urodyn 2011; 30(7): 1281-5.
[] [PMID: 21560151]
Continence Taskforce (2018). "My bladder and bowel own my life." A collaborative workshop addressing the need for continence research.
Pruchno RA, Resch NL. Aberrant behaviors and Alzheimer’s disease: Mental health effects on spouse caregivers. J Gerontol 1989; 44(5): S177-82.
[] [PMID: 2768777]
Lavretsky H, Epel ES, Siddarth P, et al. A pilot study of yogic meditation for family dementia caregivers with depressive symptoms: Effects on mental health, cognition, and telomerase activity. Int J Geriatr Psychiatry 2013; 28(1): 57-65.
[] [PMID: 22407663]
Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs 2008; 108(9): 23-7.
[] [PMID: 18797217]
Han M, Diwan S, Chang M, et al. Caregiving Burden and self-care among European-American and Chinese-American family caregivers of people with mental illness. J Fam Stud 2017; 0: 1-18.
Mak WWS, Cheung RYM. Psychological distress and subjective burden of caregivers of people with mental illness: The role of affiliate stigma and face concern. Community Ment Health J 2012; 48(3): 270-4.
[] [PMID: 21681460]
Shi Y, Shao Y, Li H, et al. Correlates of affiliate stigma among family caregivers of people with mental illness: A systematic review and meta-analysis. J Psychiatr Ment Health Nurs 2019; 26(1-2): 49-61.
[] [PMID: 30472763]
Finlayson M, Shevil E, Cho CC. Perceptions of cognitive symptoms among people aging with multiple sclerosis and their caregivers. Am J Occup Ther 2009; 63(2): 151-9.
[] [PMID: 19432053]
Masoudi R, Khayeri F, Rabiei L, Zarea K. A study of stigma among Iranian family caregivers of patients with multiple sclerosis: A descriptive explorative qualitative study. Appl Nurs Res 2017; 34: 1-6.
[] [PMID: 28342617]
Grytten N, Måseide P. ‘When I am together with them I feel more ill.’ The stigma of multiple sclerosis experienced in social relationships. Chronic Illn 2006; 2(3): 195-208.
[] [PMID: 17007696]
Joachim G, Acorn S. Stigma of visible and invisible chronic conditions. J Adv Nurs 2000; 32(1): 243-8.
[] [PMID: 10886457]
Pinquart M, Sörensen S. Correlates of physical health of informal caregivers: A meta-analysis. J Gerontol B Psychol Sci Soc Sci 2007; 62(2): 126-37.
[] [PMID: 17379673]
A’Campo LEI, Wekking EM, Spliethoff-Kamminga NGA, Le Cessie S, Roos RA. The benefits of a standardized patient education program for patients with Parkinson’s disease and their caregivers. Parkinsonism Relat Disord 2010; 16(2): 89-95.
[] [PMID: 19674927]
A’Campo LEI, Spliethoff-Kamminga NGA, Macht M, Roos RA. Caregiver education in Parkinson’s disease: Formative evaluation of a standardized program in seven European countries. Qual Life Res 2010; 19(1): 55-64.
[] [PMID: 19946755]
Murfield J, Moyle W, O’Donovan A. Mindfulness- and compassion-based interventions for family carers of older adults: A scoping review. Int J Nurs Stud 2019; 103495: 103495.
[] [PMID: 31862112]
Shim M, Tilley JL, Im S, Price K, Gonzalez A. A systematic review of mindfulness-based interventions for patients with mild cognitive impairment or dementia and caregivers. J Geriatr Psychiatry Neurol 2020; 0891988720957104: 891988720957104.
[] [PMID: 32935611]
Secker DL, Brown RG. Cognitive behavioural therapy (CBT) for carers of patients with Parkinson’s disease: A preliminary randomised controlled trial. J Neurol Neurosurg Psychiatry 2005; 76(4): 491-7.
[] [PMID: 15774433]
Verreault P, Turcotte V, Ouellet M-C, et al. Efficacy of cognitive-behavioural therapy interventions on reducing burden for caregivers of older adults with a neurocognitive disorder: A systematic review and meta-analysis. Cogn Behav Ther 2020; 1-28.
[] [PMID: 33125307]

Rights & Permissions Print Export Cite as
© 2023 Bentham Science Publishers | Privacy Policy