Person-centered care for people living with dementia has been associated with improved functional ability and quality of life, yet little is known about person-centered care in the home settings. Our objective was to explore home care worker perspectives on providing person-centered care for their clients living with dementia. Using secondary qualitative analysis of 22 semi-structured interviews with home care workers, we identified themes related to the Dementia Initiative’s person-centered dementia care framework (Initiative, 2013). We found that home care workers acknowledged their client’s personhood while also advocating for their needs. However, home care workers encountered barriers to providing person-centered care, including role limitations and challenging dynamics with other home care workers and family caregivers. This analysis can inform further approaches to better integrate home care workers in person-centered healthcare teams and improve how the needs of people living with dementia are identified and met in the home.
BackhouseT.RustonA. (2022). Home‐care workers' experiences of assisting people with dementia with their personal care: A qualitative interview study. Health and Social Care in the Community, 30(3), e749–e759. https://doi.org/10.1111/hsc.13445
2.
BreenR.SavundranayagamM. Y.OrangeJ. B.KothariA. (2022). Quality home care for persons living with dementia: Personal support workers' perspectives in Ontario, Canada. Health and Social Care in the Community, 30(5), e2497–e2506. https://doi.org/10.1111/hsc.13692
3.
ButlerS. S.Brennan-IngM.WardamaskyS.AshleyA. (2014). Determinants of longer job tenure among home care aides: What makes some stay on the job while others leave?Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 33(2), 164–188. https://doi.org/10.1177/0733464813495958
4.
CookA. (2017). Home care worker training and people with Alzheimer’s disease and related dementias: Ideas for state policymakers. PHI.
5.
EdvardssonD.WinbladB.SandmanP. O. (2008). Person-centred care of people with severe Alzheimer's disease: Current status and ways forward. The Lancet Neurology, 7(4), 362–367. https://doi.org/10.1016/S1474-4422(08)70063-2
6.
FazioS.PaceD.FlinnerJ.KallmyerB. (2018). The fundamentals of person-centered care for individuals with dementia. The Gerontologist, 58(suppl_1), S10–S19. https://doi.org/10.1093/geront/gnx122
7.
FranzosaE.JudonK. M.GottesmanE. M.KoufacosN. S.RunelsT.AugustineM.HartmannC. W.BoockvarK. S. (2022). Home health aides’ increased role in supporting older veterans and primary healthcare teams during COVID-19: A qualitative analysis. Journal of General Internal Medicine, 37(8), 1830–1837. https://doi.org/10.1007/s11606-021-07271-w
8.
FranzosaE.TsuiE. K. (2021). “Family members do give hard times”: Home health aides’ perceptions of worker–family dynamics in the home care setting. In Aging and the family: Understanding changes in structural and relationship dynamics (pp. 63–81). Emerald Publishing Limited.
9.
GohA. M. Y.PolacsekM.MaltaS.DoyleC.HallamB.GahanL.LowL. F.CooperC.LivingstonG.PanayiotouA.LoiS. M.OmoriM.SavvasS.BurtonJ.AmesD.SchererS. C.ChauN.RobertsS.WinboltM.DowB. (2022). What constitutes ‘good’ home care for people with dementia? An investigation of the views of home care service recipients and providers. BMC Geriatrics, 22(1), 42. https://doi.org/10.1186/s12877-021-02727-4
HedmanR.SandmanP. O.EdvardssonD. (2022). Enacting person‐centred care in home care services for people with dementia. Journal of Clinical Nursing, 31(11-12), 1519–1530. https://doi.org/10.1111/jocn.16004
12.
HoelK.-A.RokstadA. M. M.FeiringI. H.LichtwarckB.SelbækG.BerghS. (2021). Person-centered dementia care in home care services – highly recommended but still challenging to obtain: A qualitative interview study. BMC Health Services Research, 21(1), 723. https://doi.org/10.1186/s12913-021-06722-8
13.
HsiehH.-F.ShannonS. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687
KempC. L.BallM. M.MorganJ. C.DoyleP. J.BurgessE. O.PerkinsM. M. (2018). Maneuvering together, apart, and at odds: Residents’ care convoys in assisted living. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 73(4), e13–e23. https://doi.org/10.1093/geronb/gbx184
16.
KempC. L.BallM. M.PerkinsM. M. (2013). Convoys of care: Theorizing intersections of formal and informal care. Journal of Aging Studies, 27(1), 15–29. https://doi.org/10.1016/j.jaging.2012.10.002
17.
KreiderA. R.WernerR. M. (2023). The home care workforce has not kept pace with growth in home and community-based services: Study examines the US home care workforce alongside the growth in home-and community-based services. Health Affairs, 42(5), 650–657. https://doi.org/10.1377/hlthaff.2022.01351
LincolnY. S.GubaE. G. (1986). But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. New Directions for Program Evaluation, 1986(30), 73–84. https://doi.org/10.1002/ev.1427
20.
LivingA. f. C. (2022). 2022 national strategy to support family caregivers. US Department of Health and Human Services.
21.
LordK.Beresford-DentJ.RapaportP.BurtonA.LevertonM.WaltersK.LangI.DownsM.ManthorpeJ.BoexS.JacksonJ.OgdenM.CooperC. (2020). Developing the new interventions for independence in dementia study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: A systematic review of theoretical models and randomised controlled trial evidence. Social Psychiatry and Psychiatric Epidemiology, 55(1), 1–14. https://doi.org/10.1007/s00127-019-01784-w
22.
McClementS.WowchukS.KlaasenK. (2009). “Caring as if it were my family”: Health care aides' perspectives about expert care of the dying resident in a personal care home. Palliative & Supportive Care, 7(4), 449–457. https://doi.org/10.1017/S1478951509990459
23.
PolacsekM.GohA.MaltaS.HallamB.GahanL.CooperC.LowL.-F.LivingstonG.PanayiotouA.LoiS.OmoriM.SavvasS.BatchelorF.AmesD.DoyleC.SchererS.DowB. (2020). ‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers. Health and Social Care in the Community, 28(2), 475–484. https://doi.org/10.1111/hsc.12880
24.
PrinceM.PrinaM.GuerchetM. (2013). World alzheimer report 2013: Journey of caring: An analysis of long-term care for dementia. Alzheimer’s Disease International.
25.
ReckreyJ. M. (2023). The need for family-centered home care in home-based dementia care. Gerontological Society of America 2023 Annual Scientific Meeting, Tampa, FL, 8 November, 2023.
26.
ReckreyJ. M.BoernerK.FranzosaE.Bollens-LundE.OrnsteinK. A. (2021). Paid caregivers in the community-based dementia care team: Do family caregivers benefit?Clinical Therapeutics, 43(6), 930–941. https://doi.org/10.1016/j.clinthera.2021.03.022
27.
ReckreyJ. M.MorrisonR. S.BoernerK.SzantonS. L.Bollens‐LundE.LeffB.OrnsteinK. A. (2020). Living in the community with dementia: Who receives paid care?Journal of the American Geriatrics Society, 68(1), 186–191. https://doi.org/10.1111/jgs.16215
ReckreyJ. M.TsuiE. K.MorrisonR. S.GeduldigE. T.StoneR. I.OrnsteinK. A.FedermanA. D. (2019). Beyond functional support: The range of health-related tasks performed in the home by paid caregivers in New York. Health affairs, 38(6), 927–933. https://doi.org/10.1377/hlthaff.2019.00004
30.
ReckreyJ. M.WatmanD.TsuiE. K.FranzosaE.PerezS.FabiusC. D.OrnsteinK. A. (2022). “I Am the Home Care Agency”: The dementia family caregiver experience managing paid care in the home. International Journal of Environmental Research and Public Health, 19(3), 1311. https://doi.org/10.3390/ijerph19031311, https://www.mdpi.com/1660-4601/19/3/1311
31.
RolfeG. (2006). Validity, trustworthiness and rigour: Quality and the idea of qualitative research. Journal of Advanced Nursing, 53(3), 304–310. https://doi.org/10.1111/j.1365-2648.2006.03727.x
32.
SamusQ. M.BlackB. S.BovenkampD.BuckleyM.CallahanC.DavisK.GitlinL. N.HodgsonN.JohnstonD.KalesH. C.KarelM.KenneyJ. J.LingS. M.PanchalM.ReulandM.WillinkA.LyketsosC. G. (2018). Home is where the future is: The BrightFocus Foundation consensus panel on dementia care. Alzheimer's and Dementia: The Journal of the Alzheimer's Association, 14(1), 104–114. https://doi.org/10.1016/j.jalz.2017.10.006
33.
SaragosaM.JeffsL.OkrainecK.KuluskiK. (2022). Towards defining quality in home care for persons living with dementia. PLoS One, 17(9), Article e0274269. https://doi.org/10.1371/journal.pone.0274269
34.
ScalesK.AltmanA.CampbellS. (2020). It’s time to care: A detailed profile of America’s direct care workforce. PHI: Quality Care Through Quality Jobs.
35.
SjögrenK.LindkvistM.SandmanP.-O.ZingmarkK.EdvardssonD. (2013). Person-centredness and its association with resident well-being in dementia care units. Journal of Advanced Nursing, 69(10), 2196–2205. https://doi.org/10.1111/jan.12085
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