Kontakt 2023, 25(2):109-116 | DOI: 10.32725/kont.2023.018

Barriers to participation in educational programs for family caregivers of people with dementiaSocial Sciences in Health - Original article

Eva Dragomirecká1, *, Hana Georgi2, Hana Janečková3, Eva Jarolímová1
1 Charles University, Faculty of Arts, Praha, Czech Republic
2 Prague College of Psychosocial Studies, Praha, Czech Republic
3 Charles University, Protestant Theological Faculty, Praha, Czech Republic

Introduction: In the Czech Republic, like in other European countries, we are witnessing an expansion of programmes for families who care for their relatives with dementia.

Objective: Our study aimed to investigate whether caregivers are interested in such psychoeducational programmes, what barriers prevent them from using them, and what form of programmes they would prefer.

Results: 85 adults who cared for a family member with dementia participated in our questionnaire survey. The results showed a link between the respondents' age and their willingness and ability to participate in psychoeducational programmes. With increasing age, interest in such programmes decreased. For older respondents, mainly providers of partner care, the most frequent obstacle was the impossibility of leaving the care recipient alone at home. Preferences regarding the format of psychoeducational programmes were also age dependent: younger participants preferred support groups, consultations in their own home, and meeting jointly with the care recipient more than the older caregivers, who tended to prefer 'traditional' forms of education (consultations or psychoeducational courses).

Conclusions: Our results indicate that it is unproductive to strive for a single 'ideal' form of psychoeducational programme that would suit everyone. Instead, the offer should reflect the differing demands of caregiver groups.

Keywords: Barriers; Dementia; Informal care; Preferences; Psychoeducation
Grants and funding:

This study received support from the European Regional Development Fund Project ‘Creativity and Adaptability as Conditions of the Success of Europe in an Interrelated World’ (No. CZ.02.1.01/0.0/0.0/16_019/0000734). We would like to thank Anna Pilátová, Ph.D., for translating and editing the manuscript.

Conflicts of interest:

The authors have no conflict of interests to declare.

Received: January 12, 2023; Revised: March 31, 2023; Accepted: May 5, 2023; Prepublished online: June 1, 2023; Published: June 26, 2023  Show citation

ACS AIP APA ASA Harvard Chicago Chicago Notes IEEE ISO690 MLA NLM Turabian Vancouver
Dragomirecká E, Georgi H, Janečková H, Jarolímová E. Barriers to participation in educational programs for family caregivers of people with dementia. Kontakt. 2023;25(2):109-116. doi: 10.32725/kont.2023.018.
Share...
Download citation
  • BibTeX (.bib)
  • Bookends (.ris)
  • EasyBib (.ris)
  • EndNote (.enw)
  • EndNote 8 (.xml)
  • ISI WoS (.isi)
  • Medlars (.medlars)
  • Mendeley (.ris)
  • MODS (.xml)
  • Papers (.ris)
  • RefWorks (.txt)
  • RefManager (.ris)
  • RIS (.ris)
  • MS Word (.xml)
  • Zotero (.ris)
    • Open full article

    References

    1. Abrau M, Silva AL, Costa N, Abreu W (2015). Psychoeducational programs for informal caregivers of dependent older adults: Barriers to participation. Procedia Soc Behav Sci 171: 629-634. DOI: 10.1016/j.sbspro.2015.01.170. Go to original source...
    2. Alzheimer Europe (2019). Dementia in Europe Yearbook 2019: Estimating the prevalence of dementia in Europe. Luxembourg: Alzheimer Europe. [online] [cit. 2023-04-15]. Available from: https://www.alzheimer-europe.org/sites/default/files/alzheimer_europe_dementia_in_europe_yearbook_2019.pdf
    3. Boots LM, Wolfs CA, Verhey FR, Kempen GI, de Vugt ME (2015). Qualitative study on needs and wishes of early-stage dementia caregivers: The paradox between needing and accepting help. Int Psychogeriatr 27(6): 927-936. DOI: 10.1017/S1041610214002804. Go to original source... Go to PubMed...
    4. Brodaty H, Green A, Koschera A (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc 51(5): 657-664. DOI: 10.1034/j.1600-0579.2003.00210.x. Go to original source... Go to PubMed...
    5. Brodaty H, Thomson C, Thompson C, Fine M (2005). Why caregivers of people with dementia and memory loss don't use services. Int J Geriatr Psychiatry 20(6): 537-546. DOI: 10.1002/gps.1322. Go to original source... Go to PubMed...
    6. Bruce DG, Paterson A (2000). Barriers to community support for the dementia carer: a qualitative study. Int J Geriatr Psychiatry 15(5): 451-457. DOI: 10.1002/(sici)1099-1166(200005)15:53.0.co;2-k. Go to original source...
    7. Cherry DL (2012). HCBS can keep people with dementia at home. Generations 36(1): 83-90.
    8. Czech Alzheimer Society (2016). Zpráva o stavu demence 2016. [Dementia status report 2016]. Praha: Česká alzheimerovská společnost.
    9. Czech Statistical Office (2019). Proměny věkového složení obyvatelstva ČR 2001-2050. [Changes in the age structure of the population of the Czech Republic 2001-2050] Český statistický úřad. [online] [cit. 2023-01-23]. Available from: https://www.czso.cz/csu/czso/promeny-vekoveho-slozeni-obyvatelstva-cr-2001-2050.Available from: https://www.czso.cz/csu/czso/demograficka-rocenka-ceske-republiky-2021
    10. Czech Statistical Office (2022). Demografická ročenka České republiky - 2021. [Demographic Yearbook of the Czech Republic - 2021]. Český statistický úřad. [online] [cit. 2023-01-22]. Available from: https://www.czso.cz/csu/czso/demograficka-rocenka-ceske-republiky-2021
    11. Dragomirecká E (2020). Results of the Qualitative Study (English Summary, pp. 281-284). In Dragomirecká E, et al. (Eds). Ti, kteří se starají: Podpora neformální péče o seniory [Those who care: promoting informal care for the older adults]. Praha: Karolinum, 320 p.
    12. Dragomirecká E, Kvirencová A, Janečková H (2018). Psychoedukace pro rodinné pečující o seniora s demencí [Psychoeducation for family caregivers of people with dementia]. Fórum sociální práce: Social Work Forum. Special Issue, pp. 35-48.
    13. Duran-Kiraç G, Uysal-Bozkir Ö, Uittenbroek R, van Hout H, Broese van Groenou MI (2022). Accessibility of health care experienced by persons with dementia from ethnic minority groups and formal and informal caregivers: A scoping review of European literature. Dementia 21(2): 677-700. DOI: 10.1177/14713012211055307. Go to original source... Go to PubMed...
    14. Gilhooly KJ, Gilhooly MLM, Sullivan MP, McIntyre A, Wilson L, Harding E, et al. (2016). A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatr 16: 106. DOI: 10.1186/s12877-016-0280-8. Go to original source... Go to PubMed...
    15. Greenwood N, Smith R (2015). Barriers and facilitators for male carers in accessing formal and informal support: A systematic review. Maturitas 82(2): 162-169. DOI: 10.1016/j.maturitas.2015.07.013. Go to original source... Go to PubMed...
    16. Group for the Advancement of Psychiatry: Committee on Ageing (1988). The Psychiatric Treatment of Alzheimer's Disease. New York: Brunner/ Mazel.
    17. Huis in Het Veld JG, Verkaik R, Mistiaen P, van Meijel B, Francke AL (2015). The effectiveness of interventions in supporting self-management of informal caregivers of people with dementia; a systematic meta review. BMC Geriatr 15: 147. DOI: 10.1186/s12877-015-0145-6. Go to original source... Go to PubMed...
    18. Ilinca S, Leichsenring K, Rodrigues R (2015). From care in homes to care at home: European experiences with (de) institutionalisation in long-term care. Policy Brief, 12. Vienna: European Centre.
    19. Janečková H, Dragomirecká E, Jirkovská B (2017). Výzkumy v oblasti neformální péče o seniory v České republice na počátku 21. století [The Research in the Area of Informal Care for Seniors in the Czech Republic at the Beginning of the 21st Century]. Sociální práce / Sociálna práca, 17(6): 42-59.
    20. Jegermalm M, Torgé CJ (2021). Three caregiver profiles: who are they, what do they do, and who are their co-carers? Eur J Soc Work 1-14. DOI: 10.1080/13691457.2021.2016647. Go to original source...
    21. Kerpershoek L, Woods B, Wolfs C, Verhey F, Jelley H, Bieber A, et al. (2020). Do caregiver profiles predictthe use of dementia care services? Findings from the Actifcare study. Aging Ment Health 24(2): 272-279. DOI: 10.1080/13607863.2018.1544215. Go to original source... Go to PubMed...
    22. Lindeza P, Rodrigues M, Costa J, Guerreiro M, Rosa MM (2020). Impact of dementia on informal care: A systematic review of family caregivers' perceptions. BMJ Support Palliat Care bmjspcare-2020-002242. DOI: 10.1136/bmjspcare-2020-002242. Go to original source... Go to PubMed...
    23. Ministry of Health of the Czech Republic (2021). NAPAD- National Action Plan for Alzheimer's Disease and Other Similar Diseases 2020-2030. [online] [cit. 2023-01-22]. Available from: https://www.reformapsychiatrie.cz/sites/default/files/2021-07/NAPAD-2020-2030_FINAL_final-cs-en-R-C.pdf
    24. Ministry of Labour and Social Affairs (2016). Národní strategie rozvoje sociálních služeb na období 2016-2025 [National Strategy of Social Service Development for the period 2016-2025]. Ministerstvo práce a sociální věcí ČR. [online] [cit. 2023-01-22]. Available from: https://www.mpsv.cz/documents/20142/225517/NSRSS.pdf/bca93363-6f0b-52ab-a178-4852b75dab6f
    25. OECD (2021). Health at a Glance 2021: OECD Indicators, OECD Publishing, Paris. [online] [cit. 2023-01-22]. Available from: https://doi.org/10.1787/ae3016b9-en Go to original source...
    26. Oliva-Moreno J, Trapero-Bertran M, Peña-Longobardo LM, del Pozo-Rubio R (2017). The valuation of informal care in cost-of-illness studies: A systematic review. Pharmacoeconomics 35(3): 331-345. DOI: 10.1007/s40273-016-0468-y. Go to original source... Go to PubMed...
    27. Pinquart M, Sörensen S (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychol Aging 18(2): 250-267. DOI: 10.1037/0882-7974.18.2.250. Go to original source... Go to PubMed...
    28. Qiu D, Hu M, Yu Y, Tang B, Xiao S (2019). Acceptability of psychosocial interventions for dementia caregivers: a systematic review. BMC Psychiatry 19(1): 23. DOI: 10.1186/s12888-018-1976-4. Go to original source... Go to PubMed...
    29. Robinson KM, Buckwalter KC, Reed D (2005). Predictors of use of services among dementia caregivers. West J Nurs Res 27(2): 126-140. DOI: 10.1177/0193945904272453. Go to original source... Go to PubMed...
    30. Rummel-Kluge C, Pitschel-Walz G, Kissling W (2008). Psychoeducation in dementia: results of a survey of all psychiatric institutions in Germany, Austria and Switzerland. Psychiatry Clin Neurosci 62(6): 751-751. DOI: 10.1111/j.1440-1819.2008.01839.x. Go to original source... Go to PubMed...
    31. Spasova S, Baeten R, Vanhercke B (2018). Challenges in long-term care in Europe. Eurohealth 24(4): 7-12. [online] [cit. 2023-01-22]. Available from: https://apps.who.int/iris/handle/10665/332533
    32. Tokovska M, Nour MM, Sørensen A, Småland Goth U (2022). Informal Caregivers and Psychosocial Support: Analysis of European Dementia Policy documents. J Public Health Res 11(1): 2416. DOI: 10.4081/jphr.2021.2416. Go to original source... Go to PubMed...
    33. Vitaliano PP, Zhang J, Scanlan JM (2003). Is caregiving hazardous to one's physical health? A meta-analysis. Psychol Bull 129(6): 946-972. DOI: 10.1037/0033-2909.129.6.946. Go to original source... Go to PubMed...
    34. Wieczorek E, Evers S, Kocot E, Sowada C, Pavlova M (2022). Assessing policy challenges and strategies supporting informal caregivers in the European Union. J Aging Soc Policy 34(1): 145-160. DOI: 10.1080/08959420.2021.1935144. Go to original source... Go to PubMed...
    35. Whittier S, Coon D, Aaker J (2002). Caregiver Support Interventions. Washington, DC: National Association of State Units on Aging.

    This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND 4.0), which permits non-comercial use, distribution, and reproduction in any medium, provided the original publication is properly cited. No use, distribution or reproduction is permitted which does not comply with these terms.


    Return to the content