Katie Maslow Institute of Medicine Jan. 10, 2013

Participants will learn about: 1.Current state of evidence-based research for people with Alzheimer’s disease and other dementias and their caregivers 2.Current state of translation of interventions for people with Alzheimer’s disease and other dementias and their caregivers 3.Recommendations for future work to support the needs of people with Alzheimer’s disease and other dementias and their caregivers 2

First National Plan To Address Alzheimer’s Disease, May 2012 :  “Review the state of the art of evidence-based interventions that can be delivered by community-based organizations”  Convene a meeting of leading researchers, clinicians, and community service providers “to review research and translational activities related to evidence-based interventions”  Develop a white paper “outlining strategies for identifying promising interventions for research, translation, and expansion into practice at the community level.” 3

 The Administration on Aging/Administration for Community Living was the lead federal agency  The Alliance for Aging Research organized the meeting and developed the white paper  MetLife Foundation provided funding 4

 Meeting in DC on June 28, 2012 ◦ ~ 40 invited researchers, clinicians, community service providers, federal agency staff ◦ presentations on some treatments and care practices ◦ discussion and recommendations  Analysis of published articles and program information  White paper to present findings and recommendations  Note: Points of view, opinions and recommendations expressed in the white paper do not necessarily represent official policy of the Administration on Aging/Administration for Community Living. 5

 Identification of a problem and development of a treatment or care practice to address it  Research: in this project, randomized controlled trials (RCTs) to test the treatment or care practice; those with positive results are considered “evidence-based”  Translation: studies to test whether treatments and care practices with positive results in RCTs also work outside the research setting  Expansion into practice: wide availability and use of treatments and care practices that have been shown to work 6

 Meet Up and Mentor: early stage persons; social gatherings and peer-mentoring; in-person, online, and by phone  New York University Caregiver Intervention (NYUCI): any stage; counseling for the primary family caregiver and other family members and close friends; in-person and by phone  Savvy Caregiver: any stage; information and support for family caregivers; in a group  Reducing Disability in Alzheimer’s Disease (RDAD): any stage; exercise for the person with dementia and counseling for the primary caregiver about managing behavioral symptoms 7

 The most frequently used term for treatments and care practices that have been shown to work in RCTs is : “Evidence-based, non-pharmacological interventions”  This term is probably not understandable or meaningful to most people who will make decisions about offering, delivering, paying for, and using the treatments and care practices, e.g.  Agency administrators, staff, and other community service providers  Public and private funders  Potential users: family caregivers and people with Alzheimer’s/dementia 8

◘ Use the terms “treatments” and “care practices” instead of “interventions” ◘ Find another term for “non-pharmacological ” ◘ Use terms and language that are more generally understandable and meaningful 9

 Since 1993, RCTs conducted in the U.S. have found positive results for 44 non-pharmacological treatments and care practices  More are in various stages of development and testing in the U.S.  More have been developed, tested, and found to have positive results in RCTs in other countries  It is not true that there are no EB treatments and care practices for people with Alzheimer’s/dementia and their caregivers 10

 Most are intended for caregivers (30); fewer are intended for the person with dementia (2) or the dyad (12)  Most are intended for people with Alzheimer’s or dementia in general or their caregivers; none are specifically for people with non-Alzheimer’s dementias or their caregivers  Most are intended to help people in any stage of dementia; only 2 are specifically for early stage; none are specifically for late stage  Most are delivered in the home or a community or medical setting; none are delivered in the caregiver’s workplace 11

 Examples for people with Alzheimer’s and other dementias  Examples for family caregivers  None of the available non-pharmacological treatments and care practices work for everyone  None of the available non-pharmacological treatments and care practices change the underlying disease or condition that causes the dementia 12

 Intended to test whether treatments and care practices with positive results in RCTs also work outside the research setting  Important in moving research to practice in the community  Test feasibility and effectiveness in the real world, e.g. ◦ in larger, more diverse groups of people ◦ If delivered by different kinds of agencies and service providers 13

 Since 2002, 50+ translation studies on 10 of the 44 EB treatments and care practices have been conducted in the U.S. ◦ AoA funded 39 translation studies, primarily through ADSSP ◦ Rosalynn Carter Institute funded 11 translation studies  VA funded translation studies of one EB treatment in 24 VA Medical Centers 14

 Published findings from translation studies on 5 of 44 EB treatments and care practices show: ◦ Positive results similar to results in original RCT ◦ Positive results for various modifications ◦ Challenges and successes in real world settings  As yet unpublished findings from many translation studies will show: ◦ Who will use the treatment or care practices? ◦ Who can deliver them effectively? ◦ Who do they work for? 15

 Medicare is paying for delivery of one EB caregiver treatment delivered by occupational therapists in 3 home health agencies. Some individuals are paying out-of-pocket for this intervention  The National Family Caregiver Support Program is supporting delivery of the same EB treatment in 5 AAAs  Two private health insurance companies and a large health care system are paying for an EB dementia care transitions treatment for their enrollees  Some individuals are paying out-of-pocket for an EB treatment for early stage persons. Philanthropic support has been obtained for scholarships for those who cannot pay out-of-pocket 16

 Trained staff in AAAs in Georgia and Washington are delivering an EB treatment for family caregivers  Several Alzheimer’s Association chapters in California are delivering an EB treatment for family caregivers  Several assisted living companies in California are paying for an EB treatment for family caregivers  One EB treatment for family caregivers has been provided on a tuition basis in California  Maybe others we did not find out about ? 17

 Much more advanced than previously reported  More hopeful than might have been expected  The glass is at least half full 18

 For particular groups: e.g., racial and ethnic subgroups, early stage, late stage, young onset, people with non-Alzheimer’s dementias, people with intellectual disabilities, people who live alone  For particular problems: e.g., under-recognition and under- diagnosis of dementia, inadequate coordination of care  For particular treatments and care practices: e.g., exercise, cognitive training ◘ Recommendation: Conduct additional research to fill gaps 19

 We lack a system to categorize EB treatments and care practices, so it is difficult to understand and communicate clearly about the array of existing EB treatments and care practices  Should EB treatments and care practices be classified by: ◦ characteristics of the people they are intended to help? ◦ problems they are intended to solve? ◦ types of treatments and care practices they provide? ◦ how, where, and by whom they are delivered? ◘ Recommendation: Develop the needed classification system 20

 Repeated theme in June 2012 meeting  Are there important topics in Alzheimer’s and dementia care that cannot be studied in an RCT?  Possible examples ◦ Community care practices, e.g., El Portal, North Carolina C.A.R.E. ◦ End-of-life care ◘ Recommendation: Consider whether non-RCT research should be used to identify effective treatments and care practices and if so, for what topics 21

 Unpublished findings from existing translation studies could provide valuable information for:  Agency administrators, staff, and other community service providers  Public and private funders  Potential users: family caregivers and people with Alzheimer’s/dementia  Publications should include both positive and negative findings ◘ Recommendation: Analyze and publish findings from existing translation studies 22

 Translation studies have not been conducted on more than 30 of the existing EB treatments and care practices  Information is needed about the feasibility and effectiveness of all EB treatments and care practices in larger, more diverse populations and as delivered by different kinds of agencies and service providers ◘ Recommendation: Provide support for additional translation studies 23

 What public or private organization(s) could: ◦ Provide updated information about EB treatments and care practices, translation studies and expansion into practice ◦ Provide a forum for discussion and decisions about difficult problems in development, translation, and delivery of effective non-pharmacological treatments and care practices for people with Alzheimer’s and other dementias and their family caregivers ◘ Recommendation: Consider designation of a public or private agency or agencies to perform these functions 24