Alzheimer s Disease Supportive Services Program (ADSSP) Report on Completed Grants Jane Tilly, DrPH and Katie Maslow, Institute of Medicine September 2013
Goals of ADSSP Program Expand availability of services Improve responsiveness of HCBS system Develop models of assistance Encourage coordination and incorporation of ADRD services into broader system Target hard-to-reach and underserved communities 2
Overview of Report Purpose of report Innovative Practices grants (32 grants)- Evaluations not required Evidence-based grants (8 grants)- Evaluations required Completed and filed final reports no later than April 30, 2013 3
Topic Areas of Grants Innovative Practices Early Stage Dementia Programs Nursing Home Diversion Projects Dementia Capable Networks/Systems Projects 4
Topic Areas of Grants Evidence-Based Interventions: Coping with Caregiving New York University Caregiver Intervention Reducing Disability in Alzheimer s Disease REACH II Savvy Caregiver Skills2Care 5
Common Activities Across Grants Training professionals (non-health care) 26 Care consultation 23 Education for PWD and caregivers 19 Enhancement/expansion of networks Outreach events Respite and/or adult day care 9 10 18 # of grants employing these strategies Training of physicians/healthcare professionals 7 Funds for respite or other support services 6 Support groups 6 Screenings for dementia 6 6
Roles Played by Partner Organizations Direct service 32 Evaluation and fidelity 29 Marketing, outreach and referrals 21 Staff training Development of intervention and materials 13 16 # of grants using partners in these roles Development of networks and partnerships 7 7
Number of Grants Using Various Means of Assuring Fidelity Regular communications with intervention staff 7 Checklists and forms 6 Site visits 5 Feedback from trainers 4 Participant evaluations 3 8
Number of Grants with Specific Target Audiences PWD and caregivers 27 Early stage 19 Caregivers only 10 Rural 9 Hispanic/Latino 7 Professionals 5 African-American 5 General "minority" 5 9
Innovative Approaches Marketing and Outreach Worker Training Infrastructure Development 1
Persons Served by Grant Topic Persons with Dementia Caregiver Total Average Number Served Per Grant Total 7,978 8,271 16,249 406 Grant Topic Coping with Caregiving 60 60 120 Dementia Capable Networks/Systems 1,892 1,760 3,652 406 Early Stage Dementia Programs 1,546 1,886 3,432 264 Nursing Home Diversion 1,768 2,058 3,826 383 NYUCI 158 162 320 RDAD 404 404 808 REACH II 172 172 344 172 Savvy Caregiver 1,933 1,724 3,657 1,829 Skills2Care 45 45 90
Participant Demographics PWD Caregiver Total # % # % # % Total 7,978-8,271-16,249 - Age Under 60 305 4 2,687 37 2,992 21 60+ 6,923 96 4,564 63 11,487 79 Age Missing 555-994 - 1,549 - Gender Female 4,068 57 5,892 77 9,960 67 Male 3,117 43 1,800 23 4,917 33 Gender Missing 793-575 - 1,368 - Geographic Location Urban 2,385 52 2,670 58 5,055 55 Rural 2,229 48 1,897 42 4,126 45 Geographic Location Missing 1,373-1,534-2,907 -
Participant Demographics PWD Caregiver Total # % # % # % Total 7,978-8,271-16,249 - Relationship Spouse 2,327 47 3,419 47 5,746 47 Unmarried Partner 29 1 44 1 73 1 Child 59 1 2,995 41 3,054 25 Parent 2,031 41 80 1 2,111 17 Other relative 336 7% 519 7 855 7 Non-relative 153 3 252 3 405 3 Relationship Missing 1,191-841 - 2,032 - Ethnicity Hispanic or Latino 382 6 571 8 953 7 Not Hispanic or Latino 6,463 94 6,689 92 13,152 93 Ethnicity Missing 1,070-838 - 1,908 -
Participant Demographics PWD Caregiver Total # % # % # % Total 7,978-8,271-16,249 - Race White - Non-Hispanic 5,557 81 5,789 77 11,346 79 White - Hispanic 293 4 389 5 682 5 American Indian or Alaska Native 49 1 60 1 109 1 Asian 125 2 153 2 278 2 Black or African-American 786 11 1,044 14 1,830 13 Native Hawaiian or Other Pacific Islander 8 0 16 0 24 0 Persons Reporting Some Other Race 18 0 39 1 57 0 Persons Reporting 2 or More Races 43 1 40 1 83 1 Race Missing 1,014-774 - 1,788 - Veteran Status Veteran 832 27 359 11 1,191 19 Non-Veteran 2,231 73 2,952 89 5,183 81 Veteran Status Missing 2,882-2,791-5,673 -
Grants Using Various Evaluation Methods Participant evaluations 14 Pre/post assessments 25 Experimental designs 5 Participant counts only 3 1
30 Grants Using Pre/Post Test or Experimental /Quasi- Experimental Evaluation Designs 10 Statistically significant improvement No change/change not statistically significant Statistical significance not reported 4 4 7 6 6 6 3 4 3 4 2 5 2 2 0 0 1 0 1 6 Decreased caregiver depression* Decreased caregiver stress Improved caregiver knowledge/competence Improved coping by caregivers Increased knowledge or or use of available services Improved coping by the person with dementia Delayed/decreased placement in facility
Early Stage Dementia Programs Improved caregiver knowledge/competence Increased knowledge of services Decreased caregiver depression and stress Improved caregiver coping Decreased depression in persons with dementia Improved quality of life for persons with dementia 1
Nursing Home Diversion Decreased caregiver depression Decreased caregiver stress Improved caregiver coping Improved caregiver coping with difficult behaviors 1
Dementia Capable Networks and Systems Helped improve ability of physicians to work with persons with dementia and their family caregivers Family caregivers felt they had control over what services were provided and how used 1
Coping with Caregiving Understanding memory loss and its effect More confidence in dealing with memory problems Enhanced caregiver s ability to care Improved care recipients lives 2
New York University Caregiver Intervention Decrease in perceived caregiver depression Decrease in caregiver stress Improved caregiver reaction to problem behaviors Reduced caregiver burden Increase in social network size 2
Reducing Disability in Alzheimer s Disease Improvement in caregiver knowledge Decline in person with dementia physical health 2
REACH II Improved caregiver depression Improved caregiver stress Improved caregiver health Other small improvements but not statistically significant 2
Savvy Caregiver Decrease in caregiver depression and stress Improved caregiver knowledge/competence Improved caregiver coping Improvements in directing behaviors, letting other things slide, finding ways to keep PWD busy, caregiver personal gain, management of expectations, management of comparisons, caregiver mastery and reactions to disruptive behaviors (Maine only) 2
Skills2Care Improvement but not statistically significant in: Caregiver coping Caregiver coping with problem behaviors Slowed rate of functional decline for person with dementia Caregiver burden associated with functional status of person with dementia Caregiver confidence in dealing with difficult behaviors 2
Challenges Marketing and outreach Worker training Administrative challenges Fidelity Evaluation 2
Sustainability 38 grants at least partially sustained Public funding: 26 grants Federal funds 15 grants (ADSSP and OAA) State funds 16 grants Private funding Alzheimer s Association 5 grants Private foundations 7 grants Other Fee-for-service model 3 grants
Summary and Conclusions ADSSP is meant to be a demonstration program Changes in 2008 focused the program on the scientific evidence Available evidence indicates that interventions had a positive impact With the NAPA Alzheimer s plan, there is an increasing focus on people with dementia Systems integration grants are part of the evolution of ADSSP with a focus on dementia capability Future reports will track the impact of additional ADSSP grants and more on evidence-based interventions
Questions and Discussion Jane Tilly, DrPH jane.tilly@acl.hhs.gov 2