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Understanding the Difficulties of People with Dementia and Their Caretakers in Finland

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Well-Being in the Information Society. Fruits of Respect (WIS 2020)

Part of the book series: Communications in Computer and Information Science ((CCIS,volume 1270))

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Abstract

The number of people with memory issues—and especially with dementia—is a growing challenge that raises both economic and psychological issues worldwide, and most healthcare systems currently emphasise pharmaceutical solutions to managing the everyday lives of dementia patients and their families. This study sought to determine the real issues experienced by people with dementia and their caretakers and the solutions they use. The study was carried out in Finland, and data was collected by online interviews due to the pandemic. The results showed that most elderly enjoyed music, stories and especially from interaction with other people. Many also suffered from too little physical activity, and some from sleeping disorders, leading to problematic behaviour. As the social meetings designed for the patients and their caretakers were arranged in different locations, there were also issues with getting there. The results were to be applied when building the non-pharmaceutical solution.

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References

  1. World Alzheimer Report (2018). https://www.alz.co.uk/research/WorldAlzheimerReport2018.pdf Accessed 20 Apr 2020

  2. Kraft, E., Marti, M., Werner, S., Sommer, H.: Cost of dementia in Switzerland. Swiss Med. Wkly. 140, w13093 (2010)

    Google Scholar 

  3. Prince, M., Wimo, A., Guerchet, M., Ali, G.C., Wu, Y.-T., Prina, M.: The World Alzheimer Report 2015, The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International. https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf Accessed 20 Apr 2020

  4. Gina, K.: Costs for dementia care far exceeding other diseases. The New York Times (2015). https://www.nytimes.com/2015/10/27/health/costs-for-dementia-care-far-exceeding-other-diseases-study-finds.html. Accessed 20 Apr 2020

  5. Boseley, S.: Dementia research funding to more than double to £66 m by 2015. The Guardian. London (2012). https://www.theguardian.com/society/2012/mar/26/dementia-research-funding-to-double. Accessed 20 Apr 2020

  6. Thomassen, H.E., Farshchian, B.A.: A technology-enhanced service for person-centered dementia care: preliminary results from a field trial. In: Proceedings of the Ninth ACM International Conference on Pervasive Technologies Related to Assistive Environments, 29 June–1 July, Corfu Island, p. 52. Association for Computing Machinery (Ed.), Greece (2016)

    Google Scholar 

  7. Leicht, H., et al.: AgeCoDe study group: Net costs of dementia by disease stage. Acta Psychiatry Scand 124(5), 384–395 (2011)

    Google Scholar 

  8. Beach, S.R., Schulz, R., Yee, J.L., Jackson, S.: Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the caregiver health effects study. Psychol. Aging 15(2), 259–271 (2000)

    Article  Google Scholar 

  9. Douglas, S., James, I., Ballard, C.: Non-pharmacological interventions in dementia. Adv. Psychiatry Treat. 10, 171–179 (2004)

    Article  Google Scholar 

  10. Prince, M.: Care arrangements for people with dementia in developing Countries. Int. J. Geriatr. Psychiatry 19(2), 170–177 (2004)

    Article  Google Scholar 

  11. Papastavrou, E., Kalokerinou, A., Papacostas, S.S., Tsangari, H., Sourtzi, P.: Caring for a relative with dementia: family caregiver burden. J. Adv. Nurs. 58(5), 446–457 (2007)

    Article  Google Scholar 

  12. Colucci, L., Bosco, M., Fasanaro, A.M., Gaeta, G.L., Ricci, G., Amenta, F.: Alzheimer’s disease costs: what we know and what we should take into account. J. Alzheimer Dis. 42(4), 1311–1324 (2014)

    Article  Google Scholar 

  13. Carroll, L.: Alzheimer’s extracts a high price on caregivers, too. Today (2013). http://www.today.com/health/alzheimers-extracts-high-price-caregivers-too-8C11070658. Accessed 20 Apr 2020

  14. Cohen-Mansfield, J., Lipson, S., Werner, P., Billig, N., Taylor, L., Woosley, R.: Withdrawal of haloperidol, thioridazine, and lorazepam in the nursing home: a controlled, double-blind study. Arch. Intern. Med. 159, 1733–1740 (1999)

    Article  Google Scholar 

  15. Yamaguchi, H., Maki, Y., Yamagami, T.: Overview of non-pharmacological intervention for dementia and principles of brain-activating rehabilitation. Psychogeriatrics 10(4), 206–213 (2010)

    Article  Google Scholar 

  16. Cohen-Mansfield, J., Lipson, S., Werner, P., Billig, N., Taylor, L., Woosley, R.: Withdrawal of halo-peridol, thioridazine, and lorazepam in the nursing home. Arch. Intern. Med. 159(15), 1733–1740 (1999)

    Article  Google Scholar 

  17. Bayles, K.A., Tomoeda, C.K., Trosset, M.W.: Relation of linguistic communication abilities of Alzheimer’s patients to stage of disease. Brain Lang. 42(4), 454–472 (1992)

    Article  Google Scholar 

  18. Honig, L.S., Mayeux, R.: Natural history of Alzheimer’s disease. Aging Clin. Exp. Res. 13(3), 171–182 (2001)

    Article  Google Scholar 

  19. Magai, C., Cohen, C., Gomberg, D., Malatesta, C., Culver, C.: Emotional expression during mid- to late-stage dementia. Int. Psychogeriatr. 8(3), 383–395 (1996)

    Article  Google Scholar 

  20. Finkel, S.: Behavioral and psychological symptoms of dementia: a current focus for clinicians, researchers, and caregivers. J. Clin. Psychiatry 62(Suppl 21), 3–6 (1998)

    Google Scholar 

  21. Cipriani, G., Vedovello, M., Nuti, A., Di Fiorino., M.: Aggressive behavior in patients with dementia: correlates and management. Geriatr. Gerontol. Int. 11(4), 408–413 (2011)

    Google Scholar 

  22. Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., Vitaliano, P.P.: Assessment of behavioral problems in dementia: the revised memory and behavior problems checklist. Psychol. Aging 7, 622–631 (1992)

    Article  Google Scholar 

  23. Robinson, L., et al.: Effectiveness and acceptability of non-pharmacological interventions to reduce wandering in dementia: a systematic review. Int. J. Geriatr. Psychiatry 22, 9–22 (2007)

    Article  Google Scholar 

  24. Cipriani, G., Lucetti, C., Nuti, A., Danti, S.: Wandering and dementia. Psychogeriatrics 14(2), 135–142 (2014)

    Article  Google Scholar 

  25. Hope, R.A., Fairburn, C.G.: The nature of wandering in dementia—a community based study. Int. J. Geriatr. Psychiatry 5, 239–245 (1990)

    Article  Google Scholar 

  26. Yong, T.K., Young, S.Y., Koo, M.S.: Wandering in Dementia. Dement. Neurocognitive Disord. 14(3), 99–105 (2015)

    Article  Google Scholar 

  27. Jefferies, E., Patterson, K., Jones, R.W., Lambon Ralph, M.A.: Comprehension of concrete and abstract words in semantic dementia. Neuropsychology 23(4), 492–499 (2009)

    Article  Google Scholar 

  28. de Carvalho, I.A., Mansur, L.L.: Validation of ASHA FACS-functional assessment of communication skills for Alzheimer disease population. Alzheimer Dis. Assoc. Disord. 22(4), 375–381 (2008)

    Article  Google Scholar 

  29. Korhonen, T., Halonen, R.: Serious games in healthcare: results form a systematic mapping study. In: 30th Bled eConference: Digital Transformation - From Connecting Things to Transforming Our Lives, pp. 349–368 (2017)

    Google Scholar 

  30. Kim, S., Park, M.: Effectiveness of person-centered care on people with dementia: a systematic review and meta-analysis. Clin. Interv. Aging 2017(12), 381–397 (2017)

    Article  Google Scholar 

  31. Dementia statistics: numbers of people with dementia. https://www.alz.co.uk/research/statistics. Accessed 20 Apr 2020

  32. Ballard, C., et al.: Can psychiatric liaison reduce neuroleptic use and reduce health service utilization for dementia patients residing in care facilities. Int. J. Geriatr. Psychiatry 17(2), 140–145 (2002)

    Article  MathSciNet  Google Scholar 

  33. Brooker, D.J., Woolley, R.J., Lee, D.: Enriching opportunities for people living with dementia in nursing homes: an evaluation of a multi-level activity-based model of care. Aging Mental Health 11(4), 361–370 (2007)

    Article  Google Scholar 

  34. Fraker, J., Kales, H.C., Blazek, M., Kavanagh, J., Gitli, L.N.: The role of the occupational therapist in the management of neuropsychiatric symptoms of dementia in clinical settings. Occup. Ther. Health Care 28(1), 4–20 (2014)

    Article  Google Scholar 

  35. Burgener, S.C., Buettner, L.L., Beattie, E., Rose, K.M.: Effectiveness of community-based, nonpharmacological interventions for early-stage dementia: conclusions and recommendations. J. Gerontol. Nurs. 35(3), 50–57 (2009)

    Article  Google Scholar 

  36. Schneider, L.S.: Meta-analysis of controlled pharmacologic trials. Int. Psychogeriatr. 3(Suppl 8), 375–379 (1996)

    Google Scholar 

  37. Takeda, M., Tanaka, T., Okochi, M., Kazui, H.: Non-pharmacological intervention for dementia patients. Psychiatry Clin. Neurosci. 66(1), 1–7 (2012)

    Article  Google Scholar 

  38. Ku, L.J.E., Pai, M.C., Shih, P.Y.: Economic impact of dementia by disease severity: exploring the relationship between stage of dementia and cost of care in Taiwan. PLoS ONE 11(2), 1–12 (2016)

    Google Scholar 

  39. Dubale, T.: Dementia in the elderly: epidemiology and care perspectives in Finland (2016). https://www.theseus.fi/bitstream/handle/10024/108005/End%20Final.pdf2%281%29.pdf?sequence=2&isAllowed=y. Accessed 20 Apr 2020

  40. Manthorpe, J., Samsi, K.: Person-centered dementia care: current perspectives. Clin. Interv. Aging 11, 1733–1740 (2016)

    Article  Google Scholar 

  41. De Silva, D.: Helping People Help Themselves. The Health Foundation, London (2011). https://www.health.org.uk/sites/default/files/HelpingPeopleHelpThemselves.pdf. Accessed Jan 2020

  42. Hogan, D.B., et al.: Diagnosis and treatment of dementia, 5: nonpharmacologic and pharmacologic therapy for mild to moderate dementia. CMAJ 179(10), 1019–1026 (2008)

    Article  Google Scholar 

  43. Cohen-Mansfield, J.: Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary, and critique. Am. J. Geriatr. Psychiatry Fall 9(4), 361–381 (2001)

    Article  Google Scholar 

  44. Pinto-Bruno, Á.C., García-Casal, J.A., Csipke, E., Jenaro-Río, C., Franco-Martín, M.: ICT-based applications to improve social health and social participation in older adults with dementia. A systematic literature review. Aging Mental Health 21(1), 58–65 (2017). http://dx.doi.org/10.1080/13607863.2016.1262818

  45. Ryan, F., Coughlan, M., Cronin, P.: Interviewing in qualitative research: one-to-one interview. Int. J. Ther. Rehabil. 16(6), 309–314 (2009)

    Article  Google Scholar 

  46. Czaja, R.: Questionnaire pretesting comes of age. Market. Bull. 9, 52–66 (1998)

    Google Scholar 

  47. Every fifth person aged over 65 died of dementia and Alzheimer’s disease (2018). http://www.stat.fi/til/ksyyt/2017/ksyyt_2017_2018–12-17_kat_003_en.html. Accessed 20 Apr 2020

  48. Causes of death in 2018 (2019). http://www.stat.fi/til/ksyyt/2018/ksyyt_2018_2019-12-16_kat_001_en.html. Accessed 20 Apr 2020

  49. Deaths from dementia and Alzheimer’s disease are increasing (2017). http://www.stat.fi/til/ksyyt/2016/ksyyt_2016_2017-12-29_kat_003_en.html. Accessed 20 Apr 2020

  50. Finland’s Elderly Care Crisis (2017). https://newsnowfinland.fi/editors-pick/finlands-elderly-care-crisis. Accessed 20 Apr 2020

  51. One in three persons aged 85 or over died of dementia and Alzheimer’s disease (2019). http://www.stat.fi/til/ksyyt/2018/ksyyt_2018_2019-12-16_kat_003_en.html. Accessed 20 Apr 2020

  52. Memory disorders (2019). https://thl.fi/en/web/chronic-diseases/memory-disorders. Accessed 20 Apr 2020

  53. Share of young people in the population is in danger of diminishing further (2015). http://www.stat.fi/til/vaenn/2015/vaenn_2015_2015-10-30_tie_001_en.html. Accessed 20 Apr 2020

  54. Kolata, G.: Costs for Dementia Care Far Exceeding Other Diseases. The New York Times (2015). https://www.nytimes.com/2015/10/27/health/costs-for-dementia-care-far-exceeding-other-diseases-study-finds.html. Accessed 20 Apr 2020

  55. Merriam, S.B.: Introduction to qualitative research. In: Merriam, S.B., & Associates (eds.) Qualitative research in practice: Examples for discussion and analysis. Jossey-Bass, San Francisco, CA (2002). http://stu.westga.edu/~bthibau1/MEDT%208484-%20Baylen/introduction_to_qualitative_research/introduction_to_qualitative_research.pdf. Accessed 20 Apr 2020

  56. Stone, D.H.: Design a questionnaire. Br. Med. J. 307(6914), 1264–1266 (1993)

    Google Scholar 

  57. Moyle, W., Jones, C., Sung, B.: Telepresence robots: encouraging interactive communication between family carers and people with dementia. Australas. J. Ageing 39(1), e127–e133 (2019)

    Google Scholar 

  58. Ratislavová, K., Ratislav, J.: Asynchronous email interview as a qualitative research method in the humanities. Hum. Aff. 24(4), 452–460 (2014)

    Google Scholar 

  59. Brace, I.: Questionnaire Design: How To Plan, Structure and Write Survey Material for Effective Market Research. Kogan Page Publisher. London (2004)

    Google Scholar 

  60. Yasuda, K., Kuwabara, K., Kuwahara, N., Abe, S., Tetsutani, N.: Effectiveness of personalised reminiscence photo videos for individuals with dementia. Neuropsychol. Rehabil. 19(4), 603–619 (2009)

    Article  Google Scholar 

  61. Lietz, P.: Research into questionnaire design – a summary of the literature. Int. J. Mark. Res. 52(2), 249–272 (2010)

    Article  Google Scholar 

  62. Nanda, T., Gupta, H., Kharub, M., Singh, N.: Diagnostics for pretesting questionnaires: a comparative analysis. Int. J. Technol. Policy Manage. 13(1), 67–79 (2013)

    Article  Google Scholar 

  63. deLeeuw, E., deHeer, W.: Trends in household survey nonresponse: a longitudinal and international comparison. In: Groves, R., Dillman, D., Eltinge, J., Little, R., (eds.) Survey Non-Response, pp. 41–54. Wiley, New York (2002)

    Google Scholar 

  64. Braun, V., Clarke, V.: Using thematic analysis in psychology. Qual. Res. Psychol. 3(2), 77–101 (2006)

    Article  Google Scholar 

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Authors and Affiliations

  1. Faculty of ITEE, M3S, University of Oulu, Oulu, Finland

    Sio Lai Karppinen, Jori Karppinen & Raija Halonen

Authors
  1. Sio Lai Karppinen
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  2. Jori Karppinen
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  3. Raija Halonen
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Corresponding author

Correspondence to Sio Lai Karppinen .

Editor information

Editors and Affiliations

  1. Catholic University of Applied Sciences, Freiburg, Germany

    Mirella Cacace

  2. University of Oulu, Oulu, Finland

    Raija Halonen

  3. Tampere University, Tampere, Finland

    Hongxiu Li

  4. Åbo Akademi University, Turku, Finland

    Thao Phuong Orrensalo

  5. University of Turku, Turku, Finland

    Chenglong Li

  6. Åbo Akademi University, Turku, Finland

    Gunilla Widén

  7. University of Turku, Turku, Finland

    Reima Suomi

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Karppinen, S.L., Karppinen, J., Halonen, R. (2020). Understanding the Difficulties of People with Dementia and Their Caretakers in Finland. In: Cacace, M., et al. Well-Being in the Information Society. Fruits of Respect. WIS 2020. Communications in Computer and Information Science, vol 1270. Springer, Cham. https://doi.org/10.1007/978-3-030-57847-3_1

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  • DOI: https://doi.org/10.1007/978-3-030-57847-3_1

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  • Online ISBN: 978-3-030-57847-3

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