Restricted accessResearch articleFirst published online 2025
The Social Process and Changed Dynamics in the Co-Produced Care and Support to People Living With Dementia Within Healthcare Services: An Ethnographic Study
Family caregivers are pivotal contributors to home-based care and support for home-dwelling people with dementia. While previous research focused on family caregiving as a separate domain from professional caregiving, this study aims to investigate the situated co-produced family caregiving, capturing family caregivers’ negotiations and co-produced roles in the meeting with healthcare professionals for home-dwelling people with dementia. Employing an ethnographic approach, we conducted field visits, attended 15 dialogue meetings, and conducted 15 interviews in a Danish municipality, providing dialogue meetings with home-dwelling people with dementia and their families. In total, 42 people participated: 23 family caregivers, 14 people with dementia, and five dementia coordinators. Families’ negotiations and co-produced roles forming the situated co-produced family caregiving in the meeting with healthcare professionals were thematically analyzed using Erving Goffman’s sociological theory of frontstage and backstage scenes. We constructed three phases illustrating the time-changing dynamics and shifts in the co-produced care between the family caregiver, the person with dementia, and the healthcare professional: Phase 1: Negotiating participation in dementia assessment; Phase 2: Supported co-production; and Phase 3: Negotiating receding home-based co-produced family caregiving. This study contributes to the perception of user co-production by highlighting the situated co-produced family caregiving, capturing the complex negotiation process and co-production roles over time. Acknowledging this dynamic can facilitate better support for family caregivers and enhance home-based dementia care practices. A panel group was involved in a public involvement process and contributed perspectives on family caregiving in the meeting with healthcare professionals.
AdamsT.GardinerP. (2005). Communication and interaction within dementia care triads: Developing a theory for relationship-centred care. Dementia, 4(2), 185–205. https://doi.org/10.1177/1471301205051092
AtkinsonP. (2015). For ethnography. Sage Publications.
4.
BoscoA.SchneiderJ.Di LoritoC.BroomeE.Coleston-ShieldsD. M.OrrellM. (2020). Involving the person with dementia in crisis planning: Focus groups with crisis intervention teams. International Journal of Environmental Research and Public Health, 17(15), Article 5412. https://doi.org/10.3390/ijerph17155412
5.
BovairdT. (2007). Beyond engagement and participation: User and community coproduction of public services. Public Administration Review, 67(5), 846–860. https://doi.org/10.1111/j.1540-6210.2007.00773.x
6.
BovairdT.LoefflerE. (2021). Developing evidence-based co-production: A research agenda. In LoefflerE.BovairdT. (Eds.), The Palgrave handbook of co-production of public services and outcomes (pp. 693–713). Springer Nature. https://doi.org/10.1007/978-3-030-53705-0
7.
BrandsenT.HoninghM. (2018). Definitions of co-production and co-creation. In BrandsenT.SteenT.VerschuereB. (Eds.), Co-production and co-creation, engaging citizens in public services (pp. 9–17). Routledge/Taylor & Francis Group.
BraunV.ClarkeV. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
CarterS. M.LittleM. (2007). Justifying knowledge, justifying method, taking action: Epistemologies, methodologies, and methods in qualitative research. Qualitative Health Research, 17(10), 1316–1328. https://doi.org/10.1177/1049732307306927
12.
ChiaoC.-Y.WuH.-S.HsiaoC.-Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62(3), 340–350. https://doi.org/10.1111/inr.12194
13.
ClemmensenT. H.LauridsenH. H.Andersen-RanbergK.KristensenH. K. (2020). Informal carers’ support needs when caring for a person with dementia – A scoping literature review. Scandinavian Journal of Caring Sciences, 35(3), 685–700. https://doi.org/10.1111/scs.12898
Danish Ministry of Health. (2011). Lov om videnskabsetisk behandling af sundhedsvidenskabelige forskningsprojekter [Act on research ethics review of health research projects]. https://www.retsinformation.dk/eli/lta/2011/593
EgilstrodB.RavnM. B.PetersenK. S. (2018). Living with a partner with dementia: A systematic review and thematic synthesis of spouses’ lived experiences of changes in their everyday lives. Aging & Mental Health, 23(5), 541–550. https://doi.org/10.1080/13607863.2018.1433634
18.
GoffmanE. (1959). The presentation of self in everyday life. The Anchor Books.
19.
GrotzJ.LedgardM.PolandF. (2020). Patient and public involvement in health and social care research. Palgrave Macmillan Cham. https://doi.org/10.1007/978-3-030-55289-3
HyattD. (2005). Time for a change: A critical discoursal analysis of synchronic context with diachronic relevance. Discourse & Society, 16(4), 515–534. https://doi.org/10.1177/0957926505053054
22.
JacobsenM. H.KristiansenS. (2002). Erving Goffman - Sociologien om det elementære livs sociale former [The sociology - The elementary life’s social forms]. Hans Reitzel Forlag.
23.
JärvinenM.Mik-MeyerN. (2005). Kvalitative metoder i et interaktionistisk perspektiv [Qualitative methods in an interactionist perspective]. Hans Reitzels Forlag.
24.
JustesenL.Mik-MeyerN. (2012). Qualitative research methods in organisational studies (1st ed.). Hans Reitzel Forlag.
25.
KitwoodT. (2019). Dementia reconsidered revisited: The person still comes first (D. Brooker (Ed.), 2nd ed.). Open University Press.
26.
KvaleS.BrinkmannS. (2009). Interviews: Learning the craft of qualitative research interviewing (2nd ed.). Sage.
27.
La FontaineJ.OyebodeJ. R. (2014). Family relationships and dementia: A synthesis of qualitative research including the person with dementia. Ageing & Society, 34(7), 1243–1272. https://doi.org/10.1017/S0144686X13000056
28.
LethinC.HallbergI. R.KarlssonS.JanlövA. (2016). Family caregivers experiences of formal care when caring for persons with dementia through the process of the disease. Scandinavian Journal of Caring Sciences, 30(3), 526–534. https://doi.org/10.1111/scs.12275
29.
LiJ.SongY. (2019). Formal and informal care. In GuD.DupreM. E. (Eds.), Encyclopedia of gerontology and population aging, (pp. 1–8). Springer. https://doi.org/10.1007/978-3-319-69892-2_847-1
30.
LoefflerE.BovairdT. (2021). User and community co-production of public value. In LoefflerE.BovairdT. (Eds.), The Palgrave handbook of co-production of public services and outcomes (pp. 31–56). Springer Nature. https://doi.org/10.1007/978-3-030-53705-0
31.
McCabeL.RobertsonJ.KellyF. (2018). Scaffolding and working together: A qualitative exploration of strategies for everyday life with dementia. Age and Ageing, 47(2), 303–310. https://doi.org/10.1093/ageing/afx186
32.
MitchellG.AgnelliJ. (2015). Person-centred care for people with dementia: Kitwood reconsidered. Nursing Standard, 30(7), 46–50. https://doi.org/10.7748/ns.30.7.46.s47
33.
MoermansV. R. A.MengelersA. M. H. J.BleijlevensM. H. C.VerbeekH.de CasterleB. D.MilisenK.CapezutiE.HamersJ. P. H. (2022). Caregiver decision-making concerning involuntary treatment in dementia care at home. Nursing Ethics, 29(2), 330–343. https://doi.org/10.1177/09697330211041742
PalinkasL. A.HorwitzS. M.GreenC. A.WisdomJ. P.DuanN.HoagwoodK. (2015). Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Administration and Policy in Mental Health, 42(5), 533–544. https://doi.org/10.1007/s10488-013-0528-y
37.
QueluzF. N. F. R.KervinE.WozneyL.FanceyP.McgrathP. J.KeefeJ. (2020). Understanding the needs of caregivers of persons with dementia: A scoping review. International Psychogeriatrics, 32(1), 35–52. https://doi.org/10.1017/S1041610219000243
38.
QuinnC.ClareL.McGuinnessT.WoodsR. T. (2013). Negotiating the balance: The triadic relationship between spousal caregivers, people with dementia and Admiral Nurses. Dementia, 12(5), 588–605. https://doi.org/10.1177/1471301212437780
39.
Reinhoudt-den BoerL.van WijngaardenJ.HuijsmanR. (2022). Coproducing care and support delivery in healthcare triads: Dutch case managers for people with dementia at home using strategies to handle conflict in the healthcare triad. Health and Social Care in the Community, 30(5), e1560–e1569. https://doi.org/10.1111/hsc.13583
ShermanD. W. (2019). A review of the complex role of family caregivers as health team members and second-order patients. Healthcare, 7(2), Article 63. https://doi.org/10.3390/healthcare7020063
42.
SpradleyJ. P. (1980). Participant observation. Wadsworth, Thomson Learning.
43.
St-AmantO.Ward-GriffinC.DeForgeR. T.OudshoornA.McWilliamC.ForbesD.KloseckM.HallJ. (2012). Making care decisions in home-based dementia care: Why context matters. Canadian Journal on Aging, 31(4), 423–434. https://doi.org/10.1017/S0714980812000396
44.
TerkelsenA. S.PetersenJ. V.KristensenH. K. (2020). Mapping empirical experiences of Tom Kitwood’s framework of person-centred care for persons with dementia in institutional settings. A scoping review. Scandinavian Journal of Caring Sciences, 34(1), 6–22. https://doi.org/10.1111/scs.12709
45.
The Danish Ministry of Health. (2017). Et trygt og værdigt liv med demens. National demenshandlingsplan [Living safely and dignified with dementia: National dementia action plan].
46.
The Danish Ministry of Higher Education and Science. (2014). Danish code of conduct for research integrity(Issue November). https://www.ufm.dk/
47.
The Municipals National Association. (2024). Velfærdssamfundet belyst - Et analytisk overblik af velfærdssamfundets udvikling og tilstand [The welfare society illuminated - An analytical overview of the development and state of the welfare society].
48.
The World Medical Association. (2013). World Medical Association Declaration of Helsinki: Ethical principals for medical research involing human subjects. The Journal of the American Medical Association (JAMA), 310(20), 2191–2194. https://doi.org/10.1111/ddg.13528
49.
TuijtR.ReesJ.FrostR.WilcockJ.ManthorpeJ.RaitG.WaltersK. (2021). Exploring how triads of people living with dementia, carers and health care professionals function in dementia health care: A systematic qualitative review and thematic synthesis. Dementia, 20(3), 1080–1104. https://doi.org/10.1177/1471301220915068
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