Kontakt 2021, 23(2):104-110 | DOI: 10.32725/kont.2021.010

"I need you to pick him up." Next of kin's experiences with social support in dementiaSocial Sciences in Health - Original article

Kirsten Jæger Fjetland1, *, Miroslava Tokovska2
1 VID Specialized University, Sandnes, Norway
2 Kristiania University College, Oslo, Norway

Introduction: Demographic changes entail an increasing incidence of dementia. Next of kin experience challenges in health due to a mismatch between social support and burdens of care in everyday life. The aim of the study was to contribute to knowledge about what characterises the experience and learning of social support among the next of kin of people with dementia - and how this experience can be understood.

Methods: The study used a qualitative research design. The sample contained thirteen persons participating in three focus group interviews, six women and seven men in different next of kin roles, experiencing different phases of dementia, and from both rural and urban municipalities in Norway. The study was approved by the Norwegian Centre of Research Data and informed consent obtained from all participants. The transcribed interviews were analysed using narrative analysis with four main readings.

Results: The participants focused on their entire life situation. They pointed to extensive changes in their life situations over a long period of time, where the need for social support persisted and changed. Three thematic characteristics of social support have been analysed: Acknowledging dramatic change; Ensuring the right help at the right time; and Self-taught social support.

Conclusions: Based on the results of the study, a life course perspective, continuity, and focus on communicative competence in enhancing social support are central to the experience of social support for the next of kin of people with dementia.

Keywords: Dementia; Focus group; Next of kin; Qualitative method; Social support

Received: January 5, 2021; Revised: February 27, 2021; Accepted: March 12, 2021; Prepublished online: March 15, 2021; Published: May 5, 2021  Show citation

ACS AIP APA ASA Harvard Chicago Chicago Notes IEEE ISO690 MLA NLM Turabian Vancouver
Jæger Fjetland K, Tokovska M. "I need you to pick him up." Next of kin's experiences with social support in dementia. Kontakt. 2021;23(2):104-110. doi: 10.32725/kont.2021.010.
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. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS (2014). Caregiver Burden: A Clinical Review. JAMA 311(10): 1052-1060. DOI: 10.1001/jama.2014.304. Go to original source... Go to PubMed...
    2. Barton D (2007). Literacy. An introduction to the ecology of written language. 2nd ed. Blackwell Publishing Ltd, Hong Kong.
    3. Bjørge H, Kvaal K, Ulstein I (2019). The effect of psychosocial support on caregivers' perceived criticism and emotional over-involvement of persons with dementia: an assessor-blinded randomized controlled trial. BMC Health Serv Res 19(1): 744. DOI: 10.1186/s12913-019-4551-x. Go to original source... Go to PubMed...
    4. Bökberg C, Ahlström G, Leino-Kilpi H, Soto-Martin ME, Cabrera E, Verbeek H, et. al. (2015). Care and Service at Home for Persons with Dementia in Europe. J Nurs Scholarsh 47(5): 407-416. DOI: 10.1111/jnu.12158. Go to original source... Go to PubMed...
    5. Brunvoll V (2017). Pårørendeundersøkelsen 2016 Resultater - raske fakta. Oslo: Pårørendealliansen.
    6. Callaby P, Coleman, PG, Mills MA (2012). Caregiving in dementia: From resentment to forgiveness. J Relig Spiritual Aging 24(1-2): 93-104. DOI: 10.1080/15528030.2012.633053. Go to original source...
    7. Carlsen B, Lundberg K (2017). 'If it weren't for me…': perspectives of family carers of older people receiving professional care. Scand J Caring Sci 32(1): 213-221. DOI: 10.1111/scs.12450. Go to original source... Go to PubMed...
    8. Carter G, Monaghan C, Santin O (2020). What is known from the existing literature about peer support interventions for carers of individuals living with dementia: A scoping review. Health Soc Care Community 28(4): 1134-1151. DOI: 10.1111/hsc.12944. Go to original source... Go to PubMed...
    9. Chenoweth L, Stein-Parbury J, White D, McNeill G, Jeon Y-H, Zaratan B (2016). Coaching in self-efficacy improves care responses, health and well-being in dementia carers: a pre/post-test/follow-up study. BMC Health Serv Res 16: 166. DOI: 10.1186/s12913-016-1410-x. Go to original source... Go to PubMed...
    10. Clemmensen TH, Busted LM, Søborg J, Bruun P (2019). The family's experience and perception of phases and roles in the progression of dementia: An explorative, interview-based study. Dementia 18(2): 490-513. DOI: 10.1177/1471301216682602. Go to original source... Go to PubMed...
    11. Dam AEH, de Vugt ME, Klinkenberg IPM, Verhey FRJ, van Boxtel MPJ (2016). A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise? Maturitas 85: 117-130. DOI: 10.1016/j.maturitas.2015.12.008. Go to original source... Go to PubMed...
    12. Donnellan WJ, Bennett KM, Soulsby LK (2017). Family close but friends closer: exploring social support and resilience in older spousal dementia carers. Aging Ment Health 21(11): 1222-1228. DOI: 10.1080/13607863.2016.1209734. Go to original source... Go to PubMed...
    13. Eide H, Eide T (2017). Kommunikasjon i relasjoner. Oslo: Gyldendal. Go to original source...
    14. Eisenberger NI (2013). An empirical review of the neural underpinnings of receiving and giving social support: implications for health. Psychosom Med 75(6): 545-556. DOI: 10.1097/PSY.0b013e31829de2e7. Go to original source... Go to PubMed...
    15. Engedal K, Haugen PK (Red). (2018). Demens, sykdommer, diagnostikk og behandling. Tønsberg: Forlaget aldring og helse - akademisk, 400 p.
    16. Fjetland KJ, Tokovska M (2020). What characterizes studies on social support groups for next of kin of persons with dementia? A qualitative systematic review. Nordic Soc Work Res DOI: 10.1080/2156857X.2020.1817134. Go to original source...
    17. Gaugler JE, Gallagher-Winker K, Kehrberg K, Lunde AM, Marsolek CM, Ringham K, et al. (2011). The memory club: Providing support to persons with early-stage dementia and their care partners. Am J Alzheimers Dis Other Demen 26(3): 218-226. DOI: 10.1177/1533317511399570. Go to original source... Go to PubMed...
    18. Johannessen A, Helvik A-S, Engedal K, Thorsen K (2017). Experiences and needs of spouses of persons with young-onset frontotemporal lobe dementia during the progression of the disease. Scand J Caring Sci 31(4): 779-788. DOI: 10.1111/scs.12397. Go to original source... Go to PubMed...
    19. Kjällman-Alm A, Hellzen O, Norbergh K-G (2014). Experiences of long term ongoing structured support in early stage of dementia - a case study. Int J Older People Nurs 9(4): 289-297. DOI: 10.1111/opn.12034. Go to original source... Go to PubMed...
    20. Kokko R-L, Hänninen KA (2019). Age and work - social support received by mature employees. Nordic Soc Work Res. DOI: 10.1080/2156857X.2019.1602557. Go to original source...
    21. Kvale S, Brinkmann S (2015). Det kvalitative forskingnsintervju. Oslo: Gyldendal akademisk.
    22. Lepore SJ (2012). Social Support; In: Encyclopedia of Human Behaviour 2nd ed. Go to original source...
    23. Meyer OL, Nguyen KH, Dao TN, Vu P, Arean P, Hinton L (2015). The sociocultural context of caregiving experiences for Vietnamese dementia family caregivers. Asian Am J Psychol 6(3): 263-272. DOI: 10.1037/aap0000024. Go to original source... Go to PubMed...
    24. Nakrem S, Hynne AB (2017). Relatives a conditional resource? A qualitative study of relatives of long-term residents in nursing homes' experiences of their own role. Tidsskrift for omsorgsforksning. DOI: 10.18261/issn.2387-5984-2017-03-02. Go to original source...
    25. Norwegian Ministry of Health and Care Services (2018). Live your whole life - A quality reform for the elderly [Meld. St. 15 (2017-2018)]. [online] [cit. 2020-09-22]. Available from: https://www.regjeringen.no/no/dokumenter/meld.-st.-15-20172018/id2599850/
    26. Norwegian Ministry of Health and Care Services (2019). Public Health Report - Good Lives in a Safe Society [Meld. St. 19 (2018-2019)]. [online] [cit. 2020-10-15]. Available from: https://www.regjeringen.no/no/dokumenter/meld.-st.-19-20182019/id2639770/
    27. Norwegian Ministry of Health and Care Services (2020a). Demensplan 2025. [online] [cit. 2020-12-03]. Available from: https://www.regjeringen.no/no/dokumenter/demensplan-2025/id2788070/
    28. Norwegian Ministry of Health and Care Services (2020b). Guidelines for relatives. [online] [cit. 2020-12-03]. Available from: https://www.helsedirektoratet.no/veiledere/parorendeveileder
    29. Pérez-Cruz M, Parra-Anguita L, López-Martínez C, Moreno-Cámara S, del-Pino-Casado R (2019). Coping and Anxiety in Caregivers of Dependent Older Adult Relatives. Int J Environ Res Public Health 16(9): 1651. DOI: 10.3390/ijerph16091651. Go to original source... Go to PubMed...
    30. Ringer TJ, Wong-Pack M, Miller P, Patterson C, Marr S, Misiaszek B, et al. (2020). Understanding the educational and support needs of informal caregivers of people with dementia attending an outpatient geriatric assessment clinic. Ageing Soc 40(1): 205-228. DOI: 10.1017/S0144686X18000971. Go to original source...
    31. Riessman CK (2008). Narrative methods for the Human Sciences. California: Sage publications.
    32. Robinson KM, Buckwalter K, Reed D (2013). Differences between dementia caregivers who are users and nonusers of community services. Public Health Nurs 30(6): 501-510. DOI: 10.1111/phn.12041. Go to original source... Go to PubMed...
    33. Sagbakken M, Spilker RS, Nielsen TR (2018). Dementia and immigrant groups: a qualitative study of challenges related to identifying, assessing, and diagnosing dementia. BMC Health Serv Res 18(1): 910. DOI: 10.1186/s12913-018-3720-7. Go to original source... Go to PubMed...
    34. Schiefloe PM (2015). Sosiale landskap og sosial kapital. Nettverk og nettverksforskning. Oslo: Universitetsforlaget.
    35. Smebye KL (2020). Samarbeid med pårørende. In: Rokstad AMM, Smebye KL (Red.). Personer med demens. Møte og samhandling (2. utg., pp. 268-287). Oslo: Cappelen Damm Akademisk.
    36. Solvoll B-A, Wang I-LR (2018). Relatives' experiences of encounters with nursing staff in residential homes. Klinisk Sygepleje 4(32): 294-310. DOI: 10.18261/issn.1903-2285-2018-04-05. Go to original source...
    37. Strøm A, Dreyer A (2019). Next of kin's protracted challenges with access to relevant information and involvement opportunities. J Multidiscip Healthc 12: 1-8. DOI: 10.2147/JMDH.S183946. Go to original source... Go to PubMed...
    38. Taylor SE (2011). Social support: A review. In: Friedman HS (Ed.). The Oxford handbook of health psychology (pp. 189-214). Oxford: Oxford University Press. Go to original source...
    39. Tomar R, Jha A, Gale T, Huzzey L (2019). Benefits of attending a "Dementia First Aid" course for family caregivers of people with early dementia: findings of a pilot evaluation. BJMP 12(1): a008.
    40. Tretteteig S, Vatne S, Rokstad AMM (2017). The influence of day care centres designed for people with dementia on family caregivers - a qualitative study. BMC Geriatr 17: 5. DOI: 10.1186/s12877-016-0403-2. Go to original source... Go to PubMed...
    41. Wennberg A, Dye C, Streetman-Loy B, Pham H (2015). Alzheimer's patient familial caregivers: A review of burden and interventions. Health Soc Work 40(4): e162-e169. DOI: 10.1093/hsw/hlv062. Go to original source...
    42. Wilkinson S (2016). Analysing Focus Group Data. I D. Silverman (Red.), Qualitative Research (pp. 83-100). London: Sage publications.
    43. World Health Organization (2017). Global action plan on the public health response to dementia 2017-2025.

    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