Objective: To determine priorities for services and policies that better support care partners of people living with dementia. Methods: A modified Delphi process engaged participants from organizations serving people living with dementia and care partners, focusing on historically and currently underserved communities. Eight thematic areas were identified. Participants (N = 40) responded to three surveys, generating ideas, rating each, and ranking priorities. Results: Each survey received 13–17 responses. Top ranked ideas were arrayed across six thematic areas: care partner supports; programs; funding; information; care coordination; and workforce development. Discussion: The Delphi process empowered participants to share knowledge, and respected their opinions. Anonymity removed power imbalances. The survey iterations blended qualitative and quantitative approaches, and built consensus. The Delphi invited the voices of diverse participants; all voices were weighed equally. This process could be extended to efforts to further engage dementia care partners, helping to value their voices in decision-making for services and policies.
Alzheimer’s Association. (2024). 2024 Alzheimer’s disease facts and figures. Alzheimer’s and Dementia, 20(5), 3708–3821. https://doi.org/10.1002/alz.13809
2.
BeiderbeckD.FrevelN.von der GrachtH. A.SchmidtS. L.SchweitzerV. M. (2021). Preparing, conducting, and analyzing Delphi surveys: Cross-disciplinary practices, new directions, and advancements. MethodsX, 8(2), Article 101401. https://doi.org/10.1016/j.mex.2021.101401
3.
CarboneE. A.de FilippisR.RobertiR.RaniaM.DestefanoL.RussoE.De SarroG.Segura-GarciaC.De FazioP. (2021). The mental health of caregivers and their patients with dementia during the COVID-19 pandemic: A systematic review. Frontiers in Psychology, 12, Article 782833. https://doi.org/10.3389/fpsyg.2021.782833
4.
DauphinotV.RavierA.NovaisT.Delphin-CombeF.MouchouxC.Krolak-SalmonP. (2016). Risk factors of caregiver burden evolution, for patients with subjective cognitive decline or neurocognitive disorders: A longitudinal analysis. Journal of the American Medical Directors Association, 17(11), 1037–1043. https://doi.org/10.1016/j.jamda.2016.07.003
5.
DawsonW. D.BangerterL. R.SplaineM. (2020). The politics of caregiving: Taking stock of state-level policies to support family caregivers. Public Policy & Aging Report, 30(2), 62–66. https://doi.org/10.1093/ppar/praa005
6.
DawsonW. D.Comas-HerreraA. (2022). International dementia policies and legacies of the Coronavirus Disease 2019 pandemic. The Public Policy and Aging Report, 32(2), 72–76. https://doi.org/10.1093/ppar/prac008
7.
DawsonW. D.GelmonS. B.Hollandsworth ReedJ. (2023). Responding to the needs of Oregon’s dementia care partners: Recommendations for policy change [Policy brief]. Portland State University, Institute on Aging. https://archives.pdx.edu/ds/psu/40950
8.
FabiusC. D.WolffJ. L.KasperJ. D. (2020). Race differences in characteristics and experiences of Black and White caregivers of older Americans. The Gerontologist, 60(7), 1244–1253. https://doi.org/10.1093/geront/gnaa042
9.
FemdalI.SolbjørM. (2018). Equality and differences: Group interaction in mixed focus groups of users and professionals discussing power. Society, Health & Vulnerability, 9(1), Article 1447193. https://doi.org/10.1080/20021518.2018.1447193
10.
FonarevaI.OkenB. S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International Psychogeriatrics, 26(5), 725–747. https://doi.org/10.1017/S1041610214000039
11.
FrisoniG. B.AltomareD.RibaldiF.VillainN.BrayneC.MukadamN.AbramowiczM.BarkhofF.BerthierM.Bieler-AeschlimannM.BlennowK.Brioschi GuevaraA.CarreraE.ChételatG.CsajkaC.DemonetJ. F.DodichA.GaribottoV.GeorgesJ.DuboisB. (2023). Dementia prevention in memory clinics: Recommendations from the European task force for brain health services. The Lancet Regional Health-Europe, 26, Article 100576. https://doi.org/10.1016/j.lanepe.2022.100576
12.
Gallagher-ThompsonD.HaleyW.GuyD.RupertM.ArgüellesT.ZeissL. M.LongC.TennstedtS.OryM. (2003). Tailoring psychological interventions for ethnically diverse dementia caregivers. Clinical Psychology: Science and Practice, 10(4), 423–438. https://doi.org/10.1093/clipsy.bpg042
13.
GelmonS. B.DawsonW. D.Hollandsworth ReedJ. (2023). Supporting care partners of people living with dementia [Final report]. Portland State University, Better with Age Gerontolgy and Education Research Initiative. https://archives.pdx.edu/ds/psu/40950
14.
GiebelC.HannaK.MarlowP.CannonJ.TetlowH.ShentonJ.FaulknerT.RajagopalM.MasonS.GabbayM. (2022). Guilt, tears and burnout - impact of UK care home restrictions on the mental well-being of staff, families and residents. Journal of Advanced Nursing, 78(7), 2191–2202. https://doi.org/10.1111/jan.15181
15.
GoemanD.KingJ.KochS. (2016). Development of a model of dementia support and pathway for culturally and linguistically diverse communities using co-creation and participatory action research. BMJ Open, 6(12), Article e013064. https://doi.org/10.1136/bmjopen-2016-013064
HintonL.TranD.PeakK.MeyerO. L.QuiñonesA. R. (2024). Mapping racial and ethnic healthcare disparities for persons living with dementia: A scoping review. Alzheimer’s and Dementia, 20(4), 3000–3020. https://doi.org/10.1002/alz.13612
18.
JutkowitzE.KaneR. L.GauglerJ. E.MacLehoseR. F.DowdB.KuntzK. M. (2017). Societal and family lifetime cost of dementia: Implications for policy. Journal of the American Geriatrics Society, 65(10), 2169–2175. https://doi.org/10.1111/jgs.15043
19.
KalesH. C.GitlinL. N.LyketsosC. G. (2015). Assessment and management of behavioral and psychological symptoms of dementia. BMJ, 350(mar02 7), h369. https://doi.org/10.1136/bmj.h369
20.
KasperJ. D.FreedmanV. A.SpillmanB. C.WolffJ. L. (2015). The disproportionate impact of dementia on family and unpaid caregiving to older adults. Health Affairs, 34(10), 1642–1649. https://doi.org/10.1377/hlthaff.2015.0536
21.
KelleyA. S.McGarryK.GorgesR.SkinnerJ. S. (2015). The burden of health care costs for patients with dementia in the last 5 years of life. Annals of Internal Medicine, 163(10), 729–736. https://doi.org/10.7326/M15-0381
22.
LazarR. M.HowardV. J.KernanW. N.AparicioH. J.LevineD. A.VieraA. J.JordanL. C.NyenhuisD. L.PossinK. L.SorondF. A.WhiteC. L.American Heart Association Stroke Council. (2021). A primary care agenda for brain health: A scientific statement from the American heart association. Stroke, 52(6), e295–e308. https://doi.org/10.1161/STR.0000000000000367
23.
LiuC.BadanaA. N. S.BurgdorfJ.FabiusC. D.RothD. L.HaleyW. E. (2021). Systematic review and meta-analysis of racial and ethnic differences in dementia caregivers’ well-being. The Gerontologist, 61(5), e228–e243. https://doi.org/10.1093/geront/gnaa028
24.
Masterson-AlgarP.AllenM. C.HydeM.KeatingN.WindleG. (2022). Exploring the impact of covid-19 on the care and quality of life of people with dementia and their carers: A scoping review. Dementia, 21(2), 648–676. https://doi.org/10.1177/14713012211053971
25.
MiyawakiC. E.McClellanA.RussellD.BouldinE. D. (2024). Comparing unmet service needs between rural and urban family caregivers of people living with Alzheimer’s disease and related dementias: A multi-site study. The Gerontologist, 64(9), Article gnae083. https://doi.org/10.1093/geront/gnae083
26.
MorbeyH.HardingA. J. E.SwarbrickC.AhmedF.ElvishR.KeadyJ.WilliamsonP. R.ReillyS. T. (2019). Involving people living with dementia in research: An accessible modified Delphi survey for core outcome set development. Trials, 20(1), 12. https://doi.org/10.1186/s13063-018-3069-6
27.
NasaP.JainR.JunejaD. (2021). Delphi methodology in healthcare research: How to decide its appropriateness. World Journal of Methodology, 11(4), 116–129. https://doi.org/10.5662/wjm.v11.i4.116
28.
NovaisT.MouchouxC.KossovskyM.WintersteinL.Delphin-CombeF.Krolak-SalmonP.DauphinotV. (2018). Neurocognitive disorders: What are the prioritized caregiver needs? A consensus obtained by the Delphi method. BMC Health Services Research, 18(1), 1016. https://doi.org/10.1186/s12913-018-3826-y
29.
OlivariB. S.FrenchM. E.McGuireL. C. (2020). The public health road map to respond to the growing dementia crisis. Innovation in Aging, 4(1), igz043. https://doi.org/10.1093/geroni/igz043
30.
PaplikarA.RajagopalanJ.AlladiS. (2022). Care for dementia patients and caregivers amid COVID-19 pandemic. Cerebral Circulation - Cognition and Behavior, 3(11), Article 100040. https://doi.org/10.1016/j.cccb.2022.100040
31.
RameshT.KadakiaK.MouraL. (2024). Transforming value-based dementia care – implications for the GUIDE model. JAMA Internal Medicine, 184(3), 237–239. https://doi.org/10.1001/jamainternmed.2023.7669
32.
RøsvikJ.MicheletM.EngedalK.BerghS.BieberA.Gonçalves-PereiraM.PortolaniD. M.HopperL.IrvingK.JelleyH.KerpershoekL.MeyerG.MarquesM. J.SjølundB.-M.SköldungerA.StephanA.VerheyF.de VugtM.WoodsB.SelbaekG. (2021). Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: A Delphi process conducted by the actifcare project. Aging & Mental Health, 25(12), 2298–2309. https://doi.org/10.1080/13607863.2020.1822286
33.
RozziniL.CornaliC.ChiloviB. V.GhiandaD.PadovaniA.TrabucchiM. (2006). Predictors of institutionalization in demented patients discharged from a rehabilitation unit. Journal of the American Medical Directors Association, 7(6), 345–349. https://doi.org/10.1016/j.jamda.2005.11.008
34.
SallimA. B.SayampanathanA. A.CuttilanA.HoR. (2015). Prevalence of mental health disorders among caregivers of patients with Alzheimer Disease. Journal of the American Medical Directors Association, 16(12), 1034–1041. https://doi.org/10.1016/j.jamda.2015.09.007
35.
SchulzR.EdenJ. (Eds.), (2016). Families caring for an aging America (p. 23606). National Academies Press. https://doi.org/10.17226/23606
36.
TamM. T.DossoJ. A.RobillardJ. M. (2021). The impact of a global pandemic on people living with Dementia and their care partners: Analysis of 417 lived experience reports. Journal of Alzheimer’s Disease, 80(2), 865–875. https://doi.org/10.3233/JAD-201114
WongK. L. Y.JohnsonG.O’ConnorD. (2024). Living with dementia: Exploring the intersections of culture, race, and dementia, stigma. Dementia, 23(6), 1001–1020. https://doi.org/10.1177/14713012241249796
39.
YaffeK.FoxP.NewcomerR.SandsL.LindquistK.DaneK.CovinskyK. E. (2002). Patient and caregiver characteristics and nursing home placement in patients with dementia. JAMA, 287(16), 2090–2097. https://doi.org/10.1001/jama.287.16.2090
