Evidence Map of Non-Pharmacological Dementia Care Partner Interventions Implemented in the US: Gaps and Impact Opportunities

Abstract

There are 200+ tested interventions for care partners (family, friends, and fictive kin) of people living with dementia (PLWD). But these interventions do not systematically cover relevant settings. Nor do these interventions affect all relevant outcomes that matter to people and healthcare systems. We present an evidence map of settings and outcomes from translated interventions to identify gaps. Of 190 studies identified, 31 unique interventions were retained in the evidence map. Identified setting gaps included studies set solely in hospitals/medical centers or set in multiple settings. Identified outcome gaps included interventions that improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies. Armed with an understanding of present gaps, we call on researchers to fill the identified gaps to ensure systematic coverage of settings and evaluation of outcomes that matter to people and healthcare systems.

Keywords

caregiver randomized controlled trial real world settings research-practice gap

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References

Airtable . (2024). Retrieved May 17, 2023, from https://airtable.com/

Baker

Z. G.

Nkimbeng

Cuevas

P. E. G.

Quiñones

A. R.

Kaur Kang

Gaugler

J. E.

Hinton

Gitlin

L. N.

Shippee

T. P.

(2022). Simultaneously developing interventions for low-/middle-income and High-income settings: Considerations and opportunities. The Gerontologist, 63(3), gnac079. https://doi.org/10.1093/geront/gnac079

Bond

F. W.

Hayes

S. C.

Baer

R. A.

Carpenter

K. M.

Guenole

Orcutt

H. K.

Waltz

Zettle

R. D.

(2011). Preliminary psychometric properties of the acceptance and action questionnaire–II: A revised measure of psychological inflexibility and experiential avoidance. Behavior Therapy, 42(4), 676–688. https://doi.org/10.1016/j.beth.2011.03.007

Butler

Gaugler

J. E.

Talley

K. M. C.

Abdi

H. I.

Desai

P. J.

Duval

Forte

M. L.

Nelson

V. A.

Ouellette

J. M.

(2021). Care interventions for people living with dementia and their caregivers. Comaparative Effectiveness Review, 231. https://doi.org/10.23970/AHRQEPCCER231.

Cabassa

L. J.

Baumann

A. A.

(2013). A two-way street: Bridging implementation science and cultural adaptations of mental health treatments. Implementation Science, 8(1), 90. https://doi.org/10.1186/1748-5908-8-90

Cheng

S.-T.

K.-K.

P. P. L.

Losada

(2022). Do caregiver interventions improve outcomes in relatives with dementia and mild cognitive impairment? A comprehensive systematic review and meta-analysis. Psychology and Aging, 37(8), 929–953. https://doi.org/10.1037/pag0000696

Cohen

M. A.

Hwang

Tavares

Hawes

F. M.

(2022). Could person-centered care be the secret to achieving the triple aim? Health Affairs Forefront. https://doi.org/10.1377/forefront.20220708.832806.

Creswell

J. W.

Poth

C. N.

(2016). Qualitative inquiry and research design: Choosing among five approaches. Sage Publications.

Feinberg

(2017). From research to standard practice: Advancing proven programs to support family caregivers of persons living with dementia. American Association of Retired Persons. https://www.Aarp.Org/Ppi/Info-2017/from-Research-to-Standard-Practice_Html_[GoogleScholar]

10.

Gaugler

J. E.

Gitlin

L. N.

Zimmerman

(2021). Aligning dementia care science with the urgent need for dissemination and implementation. Journal of the American Medical Directors Association, 22(10), 2036–2038. https://doi.org/10.1016/j.jamda.2021.08.026

11.

Gitlin

L. N.

Baier

R. R.

Jutkowitz

Baker

Z. G.

Gustavson

A. M.

Sefcik

J. S.

Hodgson

N. A.

Koeuth

Gaugler

J. E.

(2020a). Dissemination and implementation of evidence-based dementia care using embedded pragmatic trials. Journal of the American Geriatrics Society, 68(Suppl 2), S28–S36. https://doi.org/10.1111/jgs.16622

12.

Gitlin

L. N.

Czaja

S. J.

(2015). Behavioral intervention research: Designing, evaluating, and implementing. Springer Publishing Company.

13.

Gitlin

L. N.

Jutkowitz

Gaugler

J. E.

(2020b). Dementia caregiver intervention research now and into the future: Review and recommendations. Commissioned Paper for the National Academies of Science, Engineering and Medicine NIA Decadal Study.

14.

Gitlin

L. N.

Marx

Stanley

I. H.

Hodgson

(2015). Translating evidence-based dementia caregiving interventions into practice: State-of-the-Science and next steps. The Gerontologist, 55(2), 210–226. https://doi.org/10.1093/geront/gnu123

15.

Hodgson

Gitlin

L. N.

(2021). Implementing and sustaining family care programs in real world settings: Barriers and facilitators. In Bridging the family care gap (1st ed., p. Joseph E Gaugler). Academic Press.

16.

Larson

E. B.

Stroud

(2021). Meeting the challenge of caring for persons living with dementia and their care partners and caregivers: A report from the national Academies of sciences, engineering, and medicine. JAMA, 325(18), 1831–1832. https://doi.org/10.1001/jama.2021.4928

17.

Lawton

M. P.

Moss

Kleban

M. H.

Glicksman

Rovine

(1991). A two-factor model of caregiving appraisal and psychological well-being. Journal of Gerontology, 46(4), P181–P189. https://doi.org/10.1093/geronj/46.4.P181

18.

Lazarus

R. S.

Folkman

(1984). Stress, appraisal, and coping. Springer Publishing Company.

19.

Liu

Insel

K. C.

Reed

P. G.

Crist

J. D.

(2012). Family caregiving of older Chinese people with dementia: Testing a model. Nursing research, 61(1), 39. https://doi.org/10.1097/NNR.0b013e31823bc451

20.

Livingston

Huntley

Sommerlad

Ames

Ballard

Banerjee

Brayne

Burns

Cohen-Mansfield

Cooper

Costafreda

S. G.

Dias

Fox

Gitlin

L. N.

Howard

Kales

H. C.

Kivimäki

Larson

E. B.

Ogunniyi

Mukadam

(2020). Dementia prevention, intervention, and care: 2020 report of the Lancet commission. Lancet (London, England), 396(10248), 413–446. https://doi.org/10.1016/S0140-6736(20)30367-6

21.

Maslow

(2020). D & I core Question—Best practice Website. [Personal communication].

22.

Maslow

Bass

D. M.

Rentsch

J. H.

(2021a). Chapter 8-Update on the status of effective programs to help dementia family caregivers in the United States: Observations from the search for programs to include in Best Practice Caregiving. In Gaugler

J. E.

(Ed.), Bridging the family care gap (pp. 247–300). Academic Press. https://doi.org/10.1016/B978-0-12-813898-4.00008-7

23.

Maslow

Bass

D. M.

Rentsch

J. H.

(2021b). Update on the status of effective programs to help dementia family caregivers in the United States: Observations from the search for programs to include in Best Practice Caregiving. In Gaugler

J. E.

(Ed.), Bridging the family care gap (pp. 247–300). Academic Press.

24.

Miake-Lye

I. M.

Hempel

Shanman

Shekelle

P. G.

(2016). What is an evidence map? A systematic review of published evidence maps and their definitions, methods, and products. Systematic Reviews, 5(1), 28. https://doi.org/10.1186/s13643-016-0204-x

25.

Mitchell

S. L.

Mor

Harrison

McCarthy

E. P.

(2020). Embedded pragmatic trials in dementia care: Realizing the vision of the NIA IMPACT collaboratory. Journal of the American Geriatrics Society, 68(Suppl 2), S1–S7. https://doi.org/10.1111/jgs.16621

26.

National Academies of Sciences, Engineering, and Medicine . (2016). Families caring for an aging America. National Academies Press.

27.

Phillips

L. R.

Rempusheski

V. F.

Morrison

(1989). Developing and testing the beliefs about caregiving scale. Research in Nursing & Health, 12(4), 207–220. https://doi.org/10.1002/nur.4770120403

28.

Reilly

S. T.

Harding

A. J. E.

Morbey

Ahmed

Williamson

P. R.

Swarbrick

Leroi

Opdebeeck

Lasrado

Challis

Hellstrom

Burns

Keady

(2020). What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions. Age and Ageing, 49(4), 664–71. https://doi.org/10.1093/ageing/afaa015.

29.

Rentscher

K. E.

(2019). Communal coping in couples with health problems. Frontiers in Psychology, 10, 398. https://doi.org/10.3389/fpsyg.2019.00398.

30.

Stern

R. A.

D’Ambrosio

L. A.

Mohyde

Carruth

Tracton-Bishop

Hunter

J. C.

Daneshvar

D. H.

Coughlin

J. F.

(2008). At the crossroads: Development and evaluation of a dementia caregiver group intervention to assist in driving cessation. Gerontology & Geriatrics Education, 29(4), 363–382. https://doi.org/10.1080/02701960802497936

31.

Van Lange

P. A. M.

Balliet

(2015). Interdependence theory. In Mikulincer

Shaver

P. R.

Simpson

J. A.

Dovidio

J. F.

(Eds.), APA handbook of personality and social psychology, Volume 3: Interpersonal relations. (2013-35884-003 (pp. 65–92). American Psychological Association. https://ezproxy.lib.uh.edu/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2013-35884-003&site=ehost-live

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