Caregivers' Experience of Caring for a Family Member with Alzheimer's Disease: A Content Analysis of Longitudinal Social Media Communication

. 2020 Jun 19 ; 17 (12) : . [epub] 20200619

Jazyk angličtina Země Švýcarsko Médium electronic

Typ dokumentu časopisecké články, práce podpořená grantem

Perzistentní odkaz   https://www.medvik.cz/link/pmid32575455

Background: The population aging together with an increased incidence of Alzheimer's disease (AD) should also be accompanied by a growing interest in healthcare research. Therefore, this study examines the nature of the caregiver's work, its mental and physical demands, experience and questions, and the relationship between the person with AD, the caregiver, and family members. Methods: As social media has become the place where people share family situations, a Facebook private discussion group of caregivers was chosen as the analytical data source. The study documented the daily-life situations of one-hundred dyads based on 2110 posts published during a six-month or longer period. A content analysis classified communication into 35 categories of basic, instrumental, and extended activities of daily livings (ADLs) and newly designed caregiver's daily issues (CDIs). Results: The frequently discussed topics were related to exhaustion and feelings of "giving up" by caregivers and interpersonal communication and help from family members. The highest support was found for the topics of aging and dying and family events. Conclusion: The communications of caregivers were diverse and rather associated with co-occupational ADLs and CDIs than basic or instrumental ADLs. The support of the group was mainly provided in coping with fundamental life changes.

Zobrazit více v PubMed

United Nations: Department of Economic and Social Affairs. 2017. World Population Projected to Reach 9.8 Billion in 2050, and 11.2 Billion in 2100. [(accessed on 25 March 2020)];2017 Jun 21; Available online: https://www.un.org/development/desa/en/news/population/world-population-prospects-2017.html.

Quinn M.M., Markkanen P.K., Galligan C.J., Sama S.R., Kriebel D., Gore R.J., Brouilette N.M., Okyere D., Sun C., Punnett L., et al. Occupational health of home care aides: Results of the safe home care survey. Occup. Environ. Med. 2016;73:237–245. doi: 10.1136/oemed-2015-103031. PubMed DOI PMC

Verbakel E. How to understand informal caregiving patterns in Europe? The role of formal long-term care provisions and family care norms. Scand. J. Public Health. 2018;46:436–447. doi: 10.1177/1403494817726197. PubMed DOI PMC

DePasquale N., Davis K.D., Zarit S.H., Moen P., Hammer L.B., Almeida D.M. Combining formal and informal caregiving roles: The psychosocial implication of double- and triple-duty care. J. Gerontol. Ser. B-Psychol. Sci. Soc. Sci. 2016;71:201–211. doi: 10.1093/geronb/gbu139. PubMed DOI PMC

Crous-Bou M., Minguillón C., Gramunt N., Molinuevo J.L. Alzheimer’s disease prevention: From risk factors to early intervention. Alzheimers Res. Ther. 2017;9:71. doi: 10.1186/s13195-017-0297-z. PubMed DOI PMC

Alzheimer Disease International . The Global Impact of Dementia: An Analysis of Pervalence, Incidence, Cost and Trends. Alzheimer Disease International; London, UK: 2015. p. 2. World Alzheimer Report.

Takizawa C., Thompson P.L., van Walsem A., Faure C., Maier W.C. Epidemiological and economic burden of Alzheimer’sdisease: A systematic literature review of data across Europe and the United States of America. J. Alzheimers Dis. 2015;43:1271–1284. doi: 10.3233/JAD-141134. PubMed DOI

Vitaliano P.P., Ustundag O., Borson S. Objective and subjective cognitive problems among caregivers and matched non-caregivers. Gerontolist. 2017;57:637–647. doi: 10.1093/geront/gnv690. PubMed DOI PMC

Marešová P., Mohelská H., Dolejš J., Kuča K. Socio-economic aspects of Alzheimer´s disease. Curr. Alzheimer Res. 2015;12 doi: 10.2174/156720501209151019111448. PubMed DOI

Zdravevski E., Lameski P., Trajkovik V., Kulakov A., Chorbev I., Goleva R., Pombo N., Garcia N. Improving activity recognition accuracy in ambient assisted living systems by automated feature Engineering. IEEE Access. 2017;5:5262–5280. doi: 10.1109/ACCESS.2017.2684913. DOI

Grindrod K.A., Li M., Gates A. Evaluating user perceptions of mobile medication management applications with older adults: A usability study. JMIR mHealth uHealth. 2014;2:e11. doi: 10.2196/mhealth.3048. PubMed DOI PMC

Landau R., Werner S., Auslander G.K., Shoval N., Heinik J. Attitudes of family and professional care-givers towards the use of GPS for tracking patients with dementia: An exploratory study. Br. J. Sociol. 2009;39:670–692. doi: 10.1093/bjsw/bcp037. DOI

Global Digital Report 2019 Q4 Update Valid to October 2019. [(accessed on 15 January 2020)]; Available online: https://hootsuite.com/pages/digital-in-2019.

LaCoursiere S.P. A theory of online social support. Adv. Nurs. Sci. 2001;24:60–77. doi: 10.1097/00012272-200109000-00008. PubMed DOI

Noelker L.S., Browdie R., Sidney Katz M.D. A New Paradigm for Chronic Illness and Long-Term Care. Gerontolist. 2014;54:13–20. doi: 10.1093/geront/gnt086. PubMed DOI

Lawton P.M., Brody E.M. Assessment of Older People: Self-Maintaining and Instrumental Activities of Daily Living. Gerontolist. 1969;9:179–186. doi: 10.1093/geront/9.3_Part_1.179. PubMed DOI

Williams B. Current Diagnosis and Treatment: Geriatrics. 2nd ed. McGraw-Hill; New York, NY, USA: 2014. Consideration of Function & Functional Decline; pp. 3–4.

Mlinac E.M., Feng M.C. Assessment of Activities of Daily Living, Self-Care, and Independence. Arch. Clin. Neuropsychol. 2016;31:506–516. doi: 10.1093/arclin/acw049. PubMed DOI

Bookman A., Harrington M., Pass L., Reisner E. Family Caregiver Handbook. Massachusetts Institute of Technology; Cambridge, MA, USA: 2007.

Roley S.S., DeLany J.V., Barrows C.J., Brownrigg S., Honaker D., Sava D.I., Talley V., Voelkerding K., Amini A.D., Smith E., et al. Occupational therapy practice framework: Domain & practice framework, 2nd edition. Am. J. Occup. Ther. 2008;62:625–683. PubMed

Na R., Yang J.H., Yeom Y. A Systematic Review and Meta-Analysis on Nonpharmacological Interventions for Moderate to Severe Dementia. Psychiatry Investig. 2019;16:325–335. doi: 10.30773/pi.2019.02.11.2. PubMed DOI PMC

Brodaty H., Arasaratnam C. Meta-analysis of Nonpharmacological Interventions for Neuropsychiatric Symptoms of Dementia. Am. J. Psychiatry. 2012;169:946–953. doi: 10.1176/appi.ajp.2012.11101529. PubMed DOI

Olazaran J., Reisberg B., Clare L., Cruz I., Pena-Casanova J., del Ser T., Woods B., Beck C., Auer S., Lai C., et al. Nonpharmacological Therapies in Alzheimer’s Disease: A Systematic Review of Efficacy. Dement. Geriatr. Cogn. Disord. 2010;30:161–178. doi: 10.1159/000316119. PubMed DOI

Henskens M., Nauta I.M., van Eekeren M.C.A., Scherder E.J.A. Effects of Physical Activity in Nursing Home Residents with Dementia: A Randomized Controlled Trial. Dement. Geriatr. Cogn. Disord. 2018;46:60–80. doi: 10.1159/000491818. PubMed DOI PMC

Zhu X.C., Yu Y., Wang H.F., Jiang T., Cao L., Wang C., Wang J., Tan C.-C., Meng X.-F., Tan L., et al. Physiotherapy Intervention in Alzheimer’s Disease: Systematic Review and Meta-Analysis. J. Alzheimers Dis. 2015;44:163–174. doi: 10.3233/JAD-141377. PubMed DOI

Bennett S., Laver K., Voigt-Radloff S., Letts L., Clemson L., Graff M., Wiseman J., Gitlin L. Occupational therapy for people with dementia and their family carers provided at home: A systematic review and meta-analysis. BMJ Open. 2019;9:e026308. doi: 10.1136/bmjopen-2018-026308. PubMed DOI PMC

Rehling T., Sixsmith J., Corr S., Pilkington A., Chard G. Occupational therapy perspectives on cognitive stimulation therapy: In relation to activities of daily living (ADL) Br. J. Occup. Ther. 2017;80(Suppl. 8):30.

Yao S., Liu Y., Zheng X. Do nonpharmacological interventions prevent cognitive decline? A systematic review and meta-analysis. Transl. Psychiatry. 2020;10:19. doi: 10.1038/s41398-020-0690-4. PubMed DOI PMC

Cheng S.-T. Dementia Caregiver Burden: A Research Update and Critical Analysis. Curr. Psychiatr. Rep. 2017;19:64. doi: 10.1007/s11920-017-0818-2. PubMed DOI PMC

Isik A.T., Soysal P., Solmi M., Veronese N. Bidirectional relationship between caregiver burden and neuropsychiatric symptoms in patients with Alzheimer’s disease: A narrative review. Int. J. Geriatr. Psychiatry. 2019;34:1326–1335. doi: 10.1002/gps.4965. PubMed DOI

Hongisto K., Hallikainen I., Selander T., Törmälehto S., Väätäinen J., Martikainen J., Välimäki T., Hartikainen S., Suhonen J., Koivisto A.M. Quality of Life in relation to neuropsychiatric symptoms in Alzheimer’s disease: 5-year prospective ALSOVA cohort study. Int. J. Geriatr. Psychiatry. 2018;33:47–57. doi: 10.1002/gps.4666. PubMed DOI

Reed C., Barrett A., Lebrec J., Dodel R., Jones R.W., Vellas B., Wimo A., Argimon J.M., Bruno G., Haro J.M. How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s Disease? Health Qual. Life Outcomes. 2017;15:16. doi: 10.1186/s12955-017-0591-2. PubMed DOI PMC

Bruce J.M., McQuiggan M., Williams V., Westervelt H., Tremont G. Burden among spousal and child caregivers of patients with mild cognitive impairment. Dement Geriatr. Cogn. Disord. 2008;25:385–390. doi: 10.1159/000122587. PubMed DOI

Van der Lee J., Bakker T.J.E.M., Duivenvoorden H.J., Dröes R.-M. Multivariate Models of Subjective Caregiver Burden in Dementia: A Systematic Review. Ageing Res. Rev. 2014;15:76–93. doi: 10.1016/j.arr.2014.03.003. PubMed DOI

Oliver D.P., Patil S., Benson J.J., Gage A., Washington K., Kruse R.L., Demiris G. The Effect of Internet Group Support for Caregivers on Social Support, Self-Efficacy and Caregiver Burden: A Meta-Analysis. Telemed. E-Health. 2017;23:621–629. doi: 10.1089/tmj.2016.0183. PubMed DOI

Sutcliffe C., Giebel C., Bleijlevens M., Lethin C., Stolt M., Saks K., Soto M.E., Meyer G., Zabalegui A., Chester H., et al. Caring for a Person with Dementia on the Margins of Long-Term Care: A Perspective on Burden from 8 European Countries. J. Am. Med. Dir. Assoc. 2017;18:967. doi: 10.1016/j.jamda.2017.06.004. PubMed DOI

Uribe F.L., Heinrich S., Wolf-Ostermann K., Schmidt S., Thyrian J.R., Schäfer-Walkmann S., Holle B. Caregiver burden assessed in dementia care networks in Germany: Findings from the DemNet-D study baseline. Aging Ment. Health. 2017;21:926–937. doi: 10.1080/13607863.2016.1181713. PubMed DOI

Liu S., Jin Y., Shi Z. The effects of behavioral and psychological symptoms on caregiver burden in frontotemporal dementia, Lewy body dementia, and Alzheimer’s disease: Clinical experience in China. Aging Ment. Health. 2017;21:651–667. doi: 10.1080/13607863.2016.1146871. PubMed DOI

Pinquart M., Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: A meta-analysis. J. Gerontol. Ser. B Psychol. Sci. Soc. Sci. 2003;58:112–128. doi: 10.1093/geronb/58.2.P112. PubMed DOI

Sallim A.B., Sayampanathan A.A., Cuttilan A., Ho R. Prevalence of mental health disorders among caregivers of patients with Alzheimer disease. J. Am. Med. Dir. Assoc. 2015;16:1034–1041. doi: 10.1016/j.jamda.2015.09.007. PubMed DOI

Shen H.W., Feld S., Dunkle R.E., Schroepfer T., Lehning A. The prevalence of older couples with ADL limitations and factors associated with ADL help receipt. J. Gerontol. Soc. Work. 2015;58:171–189. doi: 10.1080/01634372.2014.944248. PubMed DOI PMC

Vaingankar J.A., Chong S.A., Abdin E., Pico L., Jeyagurunathan A., Zhang Y., Sambasivam R., Chua B.Y., Ng L.L., Prince M., et al. Care participation and burden among informal caregivers of older adults with care needs and associations with dementia. Int. Psychogeriatr. 2016;28:221–231. doi: 10.1017/S104161021500160X. PubMed DOI PMC

Savundranayagam M.Y., Montgomery R.J., Kosloski K. A dimensional analysis of caregiver burden among spouses and adult children. Gerontologist. 2010;5:321–333. doi: 10.1093/geront/gnq102. PubMed DOI

Black B.S., Johnston D., Rabins P.V., Morrison A., Lyketsos C., Samus Q.M. Unmet needs of community-residing persons with dementia and their informal caregivers: Findings from the Maximizing Independence at Home study. J. Am. Geriatr. Soc. 2013;61:2087–2095. doi: 10.1111/jgs.12549. PubMed DOI PMC

Dunkle R.E., Feld S., Lehning A.J., Kim H., Shen H.-W., Kim M.-H. Does becoming an ADL spousal caregiver increase the caregiver’s depressive symptoms? Res. Aging. 2014;36:655–682. doi: 10.1177/0164027513516152. PubMed DOI

Anderson J.G., Hundt E., Dean M., Keim-Malpass J., Lopez R.P. “The Church of Online Support”: Examining the Use of Blogs among Family Caregivers and Persons With Dementia. J. Fam. Nurs. 2017;23:34–54. doi: 10.1177/1074840716681289. PubMed DOI

Hamm M.P., Chisholm A., Shulhan J., Milne A., Scott D.S., Given L.M., Hartling L. Social media use among patients and caregivers: A scoping review. BMJ Open. 2013;3:e002819. doi: 10.1136/bmjopen-2013-002819. PubMed DOI PMC

Ventola C.L. Social Media and Health Care Professionals: Benefits, Risks, and Best Practices. P&T J. Formul. Manag. 2014;39:491–499. PubMed PMC

Smailhodzic E., Hooijsma W., Boonstra A., Langley D.J. Social media use in healthcare: A systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Serv. Res. 2016;16:442. doi: 10.1186/s12913-016-1691-0. PubMed DOI PMC

Abedin T., Al Mamun M., Lasker M.A.A., Ahmed S.W., Shommu N., Rumana N., Turin T.C. Social Media as a Platform for Information About Diabetes Foot Care: A Study of Facebook Groups. Can. J. Diabetes. 2017;41:97–101. doi: 10.1016/j.jcjd.2016.08.217. PubMed DOI

Pretorius C. Die ervaring van aktiewe betrokkenheid by ʼn aanlyn Facebook-ondersteuningsgroep as ʼn vorm van ondersteuning vir individue wat met Meervoudige Sklerose gediagnoseer is. Tydskr. Geesteswet. 2016;56:809–828. doi: 10.17159/2224-7912/2016/v56n3a6. DOI

Wilkerson D.A., Brady E., Yi E.-H., Bateman D.R. Friendsourcing Peer Support for Alzheimer’s Caregivers Using Facebook Social Media. J. Technol. Hum. Serv. 2018;36:105–124. doi: 10.1080/15228835.2018.1449709. DOI

Bateman D.R., Brady E., Wilkerson D., Yi E.-H., Karanam Y., Callahan C.M. Comparing Crowdsourcing and Friendsourcing: A Social-Media Feasibility Study to Support Alzheimer Disease Caregivers. JMIR Res. Protoc. 2017;6:e56. doi: 10.2196/resprot.6904. PubMed DOI PMC

Robillard J.M., Johnson T.W., Hennessey C., Beattie B.L., Illes J. Aging 2.0: Health Information about Dementia on Twitter. PLoS ONE. 2013;8:e69861. doi: 10.1371/journal.pone.0069861. PubMed DOI PMC

Dyson M.P., Shavi K., Gates A., Fernandes R.M., Scott S.D., Hartling L. Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study. BMJ Open. 2017;7:e018199. doi: 10.1136/bmjopen-2017-018199. PubMed DOI PMC

Lagervall J.A., Lag M.L., Brickman S., Ingram R.E. Give a piece of your mind: A content analysis of a Facebook support group for dementia caregivers. Innov. Aging. 2019;3:850. doi: 10.1093/geroni/igz038.3128. DOI

Weber R.P. Basic Content Analysis. Sage; Thousand Oaks, CA, USA: 1990.

White M.D., Marsh E.E. Content analysis: A flexible methodology. Libr. Trends. 2006;55:22–45. doi: 10.1353/lib.2006.0053. DOI

Krippendorf K. Content Analysis: An Introduction to Its Methodology. Sage; Thousand Oaks, CA, USA: 2004.

Hsieh H.F., Shannon S.E. Three approaches to qualitative content analysis. Qual. Health Res. 2005;15:1277–1288. doi: 10.1177/1049732305276687. PubMed DOI

Hewson C. The Oxford Handbook of Psychology. Oxford University Press; New York, NY, USA: 2007. Gathering Data on the Internet. Qualitative Approaches and Possibilities for Mixed Methods Research; pp. 405–428.

Kaplan A.M., Haenlein M. Users of the world, unite! The challenges and opportunities of social media. Bus. Horiz. 2010;53:59–68. doi: 10.1016/j.bushor.2009.09.003. DOI

Muntinga D.G., Moorman M., Smit E.G. Introducing COBRAs: Exploring motivations for brand-related social media use. Int. J. Advert. 2011;30:13–46. doi: 10.2501/IJA-30-1-013-046. DOI

Piolat A., Olive T., Kellogg R.T. Cognitive effort during note taking. Appl. Cogn. Psychol. 2004 doi: 10.1002/acp.1086. DOI

Tiggemann M., Zaccardo M. ‘Strong is the new skinny’: A content analysis of #fitspiration images on Instagram. J. Health Psychol. 2016;23:1003–1011. doi: 10.1177/1359105316639436. PubMed DOI

Bachmann P. Citizens’ Engagement on Regional Governments’ Facebook Sites. Empirical Research from the Central Europe. Hradec Econ. Days. 2019;9:9–18. doi: 10.36689/uhk/hed/2019-01-001. DOI

Datareportal Digital 2020: Global Digital Overview. [(accessed on 30 January 2020)]; Available online: https://datareportal.com/reports/digital-2020-global-digital-overview.

Zhao Y., Jin Z., Min W. Finding Users’ Voice on Social Media: An Investigation of Online Support Groups for Autism-Affected Users on Facebook. Int. J. Environ. Res. Public Health. 2019;16:4804. doi: 10.3390/ijerph16234804. PubMed DOI PMC

Yang F.C., Lee A.J.T., Kuo S.C. Mining Health Social Media with Sentiment Analysis. J. Med. Syst. 2016;40:236. doi: 10.1007/s10916-016-0604-4. PubMed DOI

Balfe M., Keohane K., O’Brien K., Sharp L. Social networks, social support and social negativity: A qualitative study of head and neck cancer caregivers’ experiences. Eur. J. Cancer Care. 2017;26:e12619. doi: 10.1111/ecc.12619. PubMed DOI

Svendsboe E., Terum T., Testad I., Aarsland D., Ulstein I., Corbett A., Rongve A. Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer’s disease. Int. J. Geriatr. Psychiatry. 2016;31:1075–1083. doi: 10.1002/gps.4433. PubMed DOI

Allen A.P., Curran E.A., Duggan Á., Cryan J.F., Chorcorain A.N., Dinan T.G., Molloy D.W., Kearney P.M., Clarke G. A systematic review of the psychological burden of informal caregiving for patients with dementia: Focus on cognitive and biological markers of chronic stress. Neurosci. Biobehav. Rev. 2017;73:123–164. doi: 10.1016/j.neubiorev.2016.12.006. PubMed DOI

Adelman R.D., Tmanova L.L., Delgado D., Dion S., Lachs M.S. Caregiver burden: A clinical review. JAMA. 2014;311:1052–1060. doi: 10.1001/jama.2014.304. PubMed DOI

Pinquart M., Sörensen S. Helping Caregivers of Persons with Dementia: Which Interventions Work and How Large Are Their Effects? Int. Psychogeriatr. IPA. 2006;18:577–595. doi: 10.1017/S1041610206003462. PubMed DOI

Van Hoof J., Verbeek H., Janssen B.M., Eijkelenboom A., Molony S.L., Felix E., Nieboer K.A., Zwerts-Verhelst E.L.M., Sijstermans J.J.W.M., Wouters E.J.M. A three perspective study of the sense of home nursing residents: The views of residents, care professionals, and relatives. BMC Geriatr. 2016;16:169. doi: 10.1186/s12877-016-0344-9. PubMed DOI PMC

Murphy E., Froggatt K., Connolly S., O´Shea E., Sampson E.L., Casey D., Devane D. Paliative care interventions in advanced dementia. Cochrane Database Syst. Rev. 2016;12:CD0011513. doi: 10.1002/14651858.CD011513.pub2. PubMed DOI PMC

Sinclair J.B., Oyebode J.R., Owen R.G. Consensus views on advance care planning for dementia: A Delphi study. Health Soc. Care Community. 2016;24:165–174. doi: 10.1111/hsc.12191. PubMed DOI

Trepel D. An Economic Perspective of Dementia Care in Ireland: Maximising Benefits and Maintaining Costs Efficiency. Alzheimer Society of Ireland; Dublin, Ireland: 2010. Policy Paper, I.

Najít záznam

Citační ukazatele

Nahrávání dat ...

Možnosti archivace

Nahrávání dat ...