Implementation iLibrary: Non-Pharmacological Care Partner Interventions for PLWD Implemented in the United States

Implementation iLibrary: Non-Pharmacological Care Partner Interventions for PLWD Implemented in the United States. NIA IMPACT Collaboratory; 2022. https://doi.org/10.58234/41408636

Who created this resource?

Members of the Implementation Core, including:

Laura N. Gitlin, PhD, FGSA, FAAN, Drexel University – Core Leader
Joseph E. Gaugler, PhD, University of Minnesota – Associate Core Leader
Kimberly VanHaitsma, PhD, Penn State University – Executive Committee Member
Sokha Koeuth, MPH, Drexel University–Core Navigator
Zachary Baker, PhD, Arizona State University – Former Postdoctoral Fellow
Allison Gustavson, PT, DPT, PhD, VA Healthcare System – Former Postdoctoral Fellow
Justine Sefcik, RN, PHD, Drexel University – Former Postdoctoral Fellow
Maria Dellapina, MS, Drexel University and Prism Bio

What is the primary purpose of this resource?

This iLibrary provides a living collection of the original efficacy trials for dementia care partner interventions.

While other resources exist that document implemented care partner interventions (such as the Best Practice Caregiving database), this iLibrary is the only resource known to Implementation Core members which focuses only on the original efficacy trials for non-pharmacological care partner interventions. This iLibrary documents:

Characteristics of the interventions
Setting in which the intervention was originally tested
Outcomes assessed in the original trial

Understanding the characteristics, settings, and outcomes of successfully implemented interventions can help researchers identify gaps in the literature, support their adaptation to different settings and populations, and develop future interventions.

Is there a publication associated with this resource?

What are some sample questions that this resource can answer?

What are common settings in which dementia care partner interventions have been tested?
In the original efficacy trials for the included interventions, what outcomes were assessed for the care partner and person living with dementia?
In the original efficacy trials for the included interventions, what was the duration of the intervention? How many sessions were included and how long were the sessions?

What are the original data sources?

Interventions included in this table meet the following :

Tested in the United States
Non-pharmacological
Initially tested in a randomized controlled trial (2-group and randomized)
Implementation activity in a care setting (published or not)
Statistically significant outcome for care partner

This iLibrary includes only evidence for these interventions from their original efficacy trial. Subsequent trials and/or Iterations and modified versions of these core interventions (such as the numerous versions of REACH II) are not included on this table. No limits related to date of publication were applied.

The following sources were used to identify interventions included in this iLibrary’s associated publication in June of 2020.

Benjamin Rose Institute on Aging and Family Caregiver Alliance. Best Practice Caregiving. 2022. https://bpc.caregiver.org/#home
Feinberg LF. From Research to Standard Practice: Advancing Proven Programs to Support Family Caregivers of Persons Living with Dementia. AARP. 2017. https://www.aarp.org/content/dam/aarp/ppi/2017/08/from-research-to-standard-practice.pdf
Hodgson N, Gitlin LN. Chapter 6 - Implementing and sustaining family care programs in real-world settings: Barriers and facilitators. In: Gaugler JE, ed. Bridging the Family Care Gap. Academic Press. 2021:179-219. doi: 1016/B978-0-12-813898-4.00006-3
Expert recommendation by members of the IMPACT Implementation Core

In an update performed to this iLibrary in August of 2022, all of the above sources were re-examined and the following sources were added.

Gitlin LN, Jutkowitz E, Gaugler JE. 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. Washington, DC: The National Academies Press. 2020. https://sites.nationalacademies.org/cs/groups/dbassesite/documents/webpage/dbasse_198208.pdf
Butler M, Gaugler JE, Talley KMC, Abdi HI, Desai PJ, Duval S, Forte ML, Nelson VA, Ng W, Ouellette JM, Ratner E, Saha J, Shippee T, Wagner BL, Wilt TJ, Yeshi L. Care Interventions for People Living with Dementia and their Caregivers. Comparative Effectiveness Review No. 231. AHRQ Publication No. 20-EHC023. Rockville, MD: Agency for Healthcare Research and Quality. 2020. doi: 10.23970/AHRQEPCCER231
National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Board on Health Sciences Policy; Committee on Care Interventions for Individuals with Dementia and Their Caregivers. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Stroud C, Larson EB, editors. Washington, DC: National Academies Press (US). 2021 Feb 23. doi: 10.17226/26026. PMID: 33625814.
Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S, Brayne C, Burns A, Cohen-Mansfield J, Cooper C, Costafreda SG, Dias A, Fox N, Gitlin LN, Howard R, Kales HC, Kivimäki M, Larson EB, Ogunniyi A, Orgeta V, Ritchie K, Rockwood K, Sampson EL, Samus Q, Schneider LS, Selbæk G, Teri L, Mukadam N. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. Lancet. 2020 Aug 8;396(10248):413-446. doi: 10.1016/S0140-6736(20)30367-6. Epub 2020 Jul 30. PMID: 32738937; PMCID: PMC7392084.
Gitlin LN, Czaja SJ, Ory M, Berkowsky RW, Rebok GW, Jimenez DE, Gallo JJ, Lee SY, Parisi JM, Loewenstein DL, Harvey PD, Savla J, Pizzi LT, Jutkowitz E, Nyman JA, Hodgson NA, Leff B, Beilenson J. Behavioral Intervention Research: Designing, Evaluating, and Implementing [Internet]. Springer Publishing Company; 2021. https://doi.org/10.1891/9780826126597

How are data organized and visualized in the iLibrary?

Data included in this iLibrary was extracted from the original efficacy trials mentioned above. It is organized by into three tables: interventions (main table), references, and measures. Users can filter to hone in on interests of concern. A description of each table in the iLibrary is below:

Intervention Table – This table contains basic information about the interventions and original efficacy trials. The following details are documented in this table:
- Intervention setting(s) (home, hospital/medical center, community space, and/or telephone/web-based)
- Provider-client ratio (1:1 intervention-caregiver, 1:2 interventionist-dyad, self-guided, group setting)
- Dose and intensity of intervention (i.e., number of sessions, duration of intervention, and length of each session)
- Outcome Measures for the Person Living with Dementia
- Outcome Measure for the Care Partner
Reference Library – List of references for interventions listed in the Intervention Table
Measures Library – Includes references for the measures used to assess outcomes for people living with dementia and their care partners. In an attempt to conceptually organize the variety of measures used to assess outcomes, measures were reviewed by three PhD-level members of the Implementation Core and assigned conceptual domains using an emergent approach. For a full description of the outcome classification method, please see associated publication.

Records are linked to show associations between the data. Within this iLibrary, click any linked record (represented as a gray box) to reveal the linked record in the associated table.

Questions?