Building and sustaining capital for dementia care: the dementia network initiative

1. Building and sustaining capital for dementia care: the dementia network initiative Dr. David Patrick Ryan, Ph.D. C.Psych. Director of Education, Regional Geriatric Program of Toronto Director, Psycho-geriatric Resource Consultation Program in Toronto Assistant Professor and Consultant, Continuing Education and the Knowledge Translation Program, Faculty of Medicine, University of Toronto.

2. The sources of capital for effective dementia friendly communities Financial capital: Money and infrastructure Human capital: Skills and interests Information capital Knowledge creation and management Social capital: Networks and collaboration

3. network as complex system

4. Network dynamics Structural holes (Burt) Resource mobilization and connectedness (Lin) Peripheral participation (Wenger) Strength of weak ties (Granovetter) Trust and strong ties (Uzzi) Diverse ties (Wellman) Outcome expectancies (Ancona) Boundary management (Tjosvold) Systems issues (Bateson)

5. A network analysis diagram (Burt, 1999)

6. Forming Evolving Maturing Growth Joint planning Program evaluation Joint marketing Expanding service line New services Program integration Efficiency Benchmarking Standard setting Administrative consolidation Shared services Service relocation Value Resource manuals Peer networks/directory Grant writing Shared investments Common budgeting Resource planning/consolidation Network activities that may improve growth, efficiency and value Adapted from Brown et al (2001) Strategic Planning in Rural Health Networks available online at www.academyhealth.org/ruralhealth/ strategicplanning.pdf

7. Network Name Focus Clinical Services Funding Role Several Health Care Networks in Ontario The Child Health Network population no no Plan, collaboration standard setting Cancer Care Ontario disease yes base Service, research, leadership Ontario Family Health Networks population yes base A managed care network The Cardiac Care Network disease Wait list mgmt only project Monitor analyze and advise MOH Northern Diabetes Health Network disease yes base Assess needs, contract services, evaluate, educate GTA Rehab. Network population no no Plan, research, educate, advise ABI Network population data base mgmt only mixed Lead, advocate educate collaborate RGP Network population database mgmt only mixed Advocate educate leadership Dementia networks disease no startup funding

8. Name that network Visitors paths at Duisberg Zoo from the gallery of social structures http://www.mpi-fg-koeln.mpg.de/~lk/netvis.html

9. Classes of Activities across the 30 Dementia Networks Service map or inventory Establish “first link” Profile of consumer needs Physician Newsletters Develop a website Develop guidelines, care-maps and algorithms Collaborate with other networks Establish databases Gap identification Public education materials/workshops Health professional education materials/ workshops Physician Education materials /workshops

10. 2 network projects in toronto Create a Web site listing more than 300 organizations that provide dementia services across the city. www.dementiatoronto.org Conduct a series of community consultations using the in Toronto to better understand the circumstances of care and the needs that exist within our communities.

11. Dementia Network Co-chairs Francoise Hebert, Alzheimer Society of Toronto Rory Fisher, Geriatrician dementiatoronto.org team Rhona Phillips, MOH/LTC Fern Terplitsky, DHC Angela Mendes, Alzheimer Society Francoise Hebert, Alzheimer Society Community consultation task force Eric Hong – Whitby Mental Health Vija Mallia – Castleview Wychwood Towers Pam Goldsilver - COTA Marta Krywonis – Etobicoke-York CCAC David Ryan, Regional Geriatric Program of Toronto

12. Community consultation: who was involved? 200 Agencies invited 170 accepted the invitation 92 of these participated 158 people Managers, Social workers, RN’s, case coordinators, therapists. PSW, DOC’s, educators, PRC’s and Alzheimer Society Educators provided facilitation

13. Building cases mirrors naturalistic learning When health professionals talk about cases several things happen: A composite case is formed during the discussion These composites reflect practice contexts A diversity of approaches to assessment and intervention emerge Recognizing this diversity, a learning moment is created Build-A-Case captures this most natural and contextual process of learning and is a distinct application of problem based learning

14. Problem Based LearningBuild-A-Case Socratic Dialogue Reflective Dialogue Teacher - knowledge expert Teacher - inquiry expert Learners declare Learners describe “Eats Cases” Produces Cases Expensive Inexpensive Ubiquitous Novel Centralized Situated

15. An outline of each consultation meeting 1. Introduction by the region’s PRConsultants 2. Welcome from the Homes for Aged Educator or Administrator 3. Introductions of participants 4. Overview of the Dementia Network, the Community Consultation Steering Group, the provincial Alzheimer’s Strategies 5. Overview of the morning’s objectives and activities 6. Case building session a) Case profile b) Real intervention plan c) Ideal intervention plan d) Gaps identification 7. Sharing and discussion of constructed case profiles 8. Sharing and discussion of identified gaps 9. Wrap-up, “next steps” and evaluation

16. Twenty-seven cases were constructed 63% of the built cases were seniors whose first language was not English Languages included Gujarati, Italian, Macedonian, French, Ukranian, Russian and Polish. On average each case had 4 health problems in addition to dementia Co-morbidities: Diabetes (17), behavioral problems (16) depression (11), rheumatoid and osteo-arthritis (11), vision difficulties such as macular degeneration (8) , hypertension (8), mobility difficulties (5), osteoporosis (5), hearing problems (4), heart disease (4), alcohol related problems, continence problems (3), skin ulcers, falls, paranoia/hallucinations, stroke (2), CHF, sleep disturbance and anemia (1).

17. Sixty knowledge, service & communications gaps identified 21 Knowledge gaps 19 Communication gaps 30 Service gaps Service gaps significantly more frequent with overall higher importance ratings No regional or service differences

18. 1. Family and general public knowledge of dementia services 2. Knowledge of how to plan to avoid crisis situations 3. General knowledge of how the system works 4. Public education on aging, stigmatization and dementia 5. Understanding of problems mixing young, old and demented people 6. MOH doesn’t understand the reality of care 7. Limited education on aging for younger people 8. Professional awareness of all services available in the community 9. Volunteer training . 10. Family physician knowledge of resources/medications/dementia/delirium 11. Knowledge of what services require extra payment 12. Knowledge of the role of case managers 13. Lack of emphasis on aging in the training of health professionals 14. Awareness of boundaries/catchment areas 15. Awareness of value of alcohol treatment programs. 16. Methods for the resolution of family conflict 17. Information systems sometimes encourage disability not health 18. Support and Education for the PSW/home support workers 19. Some organizations are not committed to developing their staff 20. Misuse/misunderstanding of the purpose of respite beds 21. Lack of information about the client for PSW and home support workers 3.4 3.3 2.9 2.9 2.9 2.9 2.8 2.7 2.7 2.7 2.7 2.7 2.6 2.6 2.6 2.5 2.4 2.2 2.0 2.0 1.9 Knowledge gaps identified in the city-wide consultation process and their importance ratings (1 = not a gap in our community and 4 = a very big gap)

19. Service gaps identified in the city-wide consultation process and their importance ratings (where 1 = not a gap in our community and 4 = a very big gap) 3.6 3.4 3.2 3.2 3.2 3.1 3.1 3.1 3.1 3.0 3.1 3.1 2.9 2.7 2.9 2.9 2.9 2.9 2.9 2.9 2.9 2.8 2.8 2.7 2.7 2.7 2.3 2.3 2.3 2.2 1. Services for people with behavioral problems 2. Affordable, readily available and flexible transportation services 3. Provision for “adult care leave “ 4. Staffing levels are insufficient 5. The salary gap between community and facility/hospital staff 6. Translation services 7 days a week, 24 hours a day 7. Psycho-geriatrician house calls 8. Geriatrician house calls 9. Wait lists for specialized services 10. Lack of hospital beds prompts discharge to early 11. Sharing of clinical data across agencies 12. Insufficient numbers of nurse practitioners with geriatric expertise 13. Inconsistent services across agencies 14. Individuals don’t have power to make decisions or individualize services 15. Payment schedules to encourage doctors work with seniors 16. No standard of care or management protocols for people with dementia 17. Geriatric Assessments in the emergency room 18. Funding to renovate facilities 19. Insufficient focus on prevention and health promotion 20 Access to day programs that can adjust to changing functional levels 21. Cultural and linguistically sensitive services and programs 22. Extended hours for programs and services. 23. Telephone assistance services for dementia 24. No continuum of housing services 25. Services just for meal preparation, housekeeping and socialization 26. Bedside coaching and mentoring services for PSWs 27. Availability of respite services 28. Services for sponsored immigrants 29. Family physicians who do house calls 30. Not enough case coordinators

20. 1.Communication between doctors and community agencies 2.Better marketing of services 3.Communications that would help physicians make referrals to other services 4. Inter-agency case conferences for common goal setting/evaluation. 5. Need for a single source information database 6. Insufficient involvement of mass and local media in aging issues 7. Communication between family doctors and Emergency Departments . 8. Legal/ethical gaps re: sharing information about clients i.e. confidentiality 9. Sharing information between community, acute care and LTC 10. Ability to communicate with involved social groups e.g. churches. 11. Services to help seniors communicate with family members. 12. Communication between family, physicians and client 13. Communication between all staff on all shifts and all disciplines 14. Timeliness of interagency communication 15 Need for information in plain language 16. Lack of communication between regulated and unregulated staff 17. Insufficient information on service applications forms 18. No one who seems to push “the agenda” or advocate for individual clients 19. Communication between care providers and care coordinating agencies Communication gaps identified in the city-wide consultation process and their ratings (where 1 = not a gap in our community and 4 = a very big gap) 3.1 3.1 3.0 3.0 3.0 2.9 2.9 2.9 2.8 2.7 2.7 2.7 2.6 2.6 2.4 2.4 2.4 2.3 2.3

21. CCAC Family Doc/Emergency Communications Better marketing of services 3.0 3.0 3.6 3.3 3.3 3.2 3.1 3.0 Community service agencies Communication between physicians and community agencies Communications that would help physicians make referrals Better marketing of services Need for single source information database Inter-agency case conferences for goal setting/evaluation.Sharing information between community, acute and LTC Long Term Care Better marketing of services Insufficient involvement of mass and local media Need for a single source of information Services to help seniors communicate with family Legal/ethical gaps sharing confidential information Communications that would help physicians make referrals Inter-agency case conferences 3.1 3.1 3.1 3.0 3.0 3.0 3.0 Communications gaps rated higher than 3 for each service sector

22. CCAC Knowledge of how to plan to avoid crisis situations Family and general public knowledge of dementia services Family physician knowledge Knowledge of the role of case managers Organizational commitment to staff development Knowledge of services requiring extra payment 3.6 3.3 3.3 3.3 3.0 3.0 Community Service Agencies Family Physician Knowledge of resources/meds/dementia General knowledge of how the system works Awareness of boundaries/catchment areas Family and general public knowledge of dementia services Limited education on aging for younger people Public education on aging, stigmatization and dementia 3.7 3.3 3.2 3.2 3.0 3.0 Long Term Care Family and general public awareness of dementia services MOH doesn’t understand the reality of care Understanding of problems mixing young, old and demented people Knowledge of how to plan to avoid crisis situations 3.5 3.4 3.3 3.3 Knowledge gaps rated higher than 3 for each service sector

23. Service gaps rated greater than three for CCAC’s No standard of care or management protocols for dementia Geriatric Assessments in the emergency room Psycho-geriatrician house calls Geriatrician house calls Services for people with behavioral problems Wait lists for specialized services Affordable, readily available and flexible transportation services No continuum of housing services rovision for “adult care leave “ Sharing of clinical data across agencies Access to day programs that can adjust to changing functional levels Insufficient numbers of nurse practitioners with geriatric expertise Services just for meal preparation, housekeeping and socialization The salary gap between community and facility/hospital staff Family physicians who do house calls Lack of hospital beds prompts discharge to early Not enough case coordinators Insufficient focus on prevention and health promotion Payment schedules to encourage doctors work with seniors 3.7 3.7 3.7 3.7 3.3 3.3 3.3 3.3 3.0 3.0 3.0 3.0 3.0 3.0 3.0 3.0 3.0 3.0 3.0

24. Service gaps rated higher than 3 for community service agencies The salary gap between community and facility/hospital staff Payment schedules to encourage doctors to work with seniors Family physicians who do house calls Psycho-geriatrician house calls Geriatrician house calls Translation services 7 days a week, 24 hours a day Services for people with behavioral problems Affordable, readily available and flexible transportation services Inconsistent services across agencies Access to day programs that can adjust to changing functional levels Extended hours for programs and services Staffing levels are insufficient Geriatric Assessments in the emergency room Lack of hospital beds prompts discharge to early Insufficient focus on prevention and health promotion 3.5 3.3 3.3 3.3 3.3 3.3 3.3 3.2 3.1 3.0 3.0 3.0 3.0 3.0 3.0

25. Service gaps rated higher than 3 by long-term care Services for people with behavioral problems 3.8 Affordable, readily available and flexible transportation 3.5 Provision for “adult care leave “Staffing levels are insufficient 3.5 Funding to renovate facilities 3.4 Insufficient numbers of nurse practitioners with geriatric expertise 3.2 Translation services 7 days a week, 24 hours a day 3.2 The salary gap between community and facility/hospital staff 3.1 Lack of hospital beds prompts discharge to early 3.0

26. Three ratings of consultation process effectiveness ( Numbers in each cell indicates the number of respondents and the corresponding percentage of respondents is in parentheses) Rating scale1 2 3 4 5 (where 1 = very much so and 5 = not at all) Productive and informative 79 (59%) 40 (30%) 8 (6%) 5 (4%) 1 (1%) Well organized 91 (68%) 32 (24) 5 (4%) 4 (3%) 1 (1%) Influence practice 51 (37%) 44 (33%) 25 (22%) 7 (6%) 2 (2%)

27. A sample of participant comments • Very informative and enlightening. This session needs to be presented across the health care system. • It was helpful to have an opportunity to voice concerns, ideas and to brainstorm solutions in long term care. It can sometimes feel like no one is listening outside of our facility. • Thank you – A very informative session and a positive environment to share information. Good Job! • Interesting session! I liked the diversity of the group members. Great to hear what other agencies do and learn about their role. • This is a very informative networking session. Extremely well done! • Very interesting method of learning • Love the format of build-a-case • David Ryan was fantastic. I learned so much from his comments

28. Dementia Network Sustainability Advice Strong leadership/formal and informal Structure/formal and informal Funding Build on what exists Add value Share labor and resources Build social capital Identify and close gaps Communicate Meta-communicate Inclusiveness Design-in sustainability Manage outcome expectancies Manage boundary mgmt initiatives Manage system dynamics Manage the knowledge to practice process

29. A Model for Exploring the Knowledge to Practice Process Creation Utilization Transfer Translation Individual factors such as beliefs about self-efficacy, utility, value and expectancies Organizational factors such as organizational readiness and support, information systems, quality management processes Inter-organizational factors such as boundary and expectancy management Description Correlation Experimentation Met-analyses Co-modification Marketing Detailing Mediating Education Opinion Leadership Simplification Explanation Interaction Advocacy

30. Some useful resources Alzheimer Society of Ontario website on the Dementia Networks of Ontario http://alzheimerontario.org/English/dementia%20networks/default.asp?s=1 Ryan, D. & Marlow, B. (2004) Build-A-Case: A Brand New CME Technique that is Peculiarly Familiar, Accepted for publication Journal of Continuing Education in the Health Professions. Ryan, D., Cott, C. & Robertson, D. (1996) A conceptual tool-kit for thinking about inter-teamwork in clinical gerontology. Journal of Educational Gerontology, 23, 651-668. The Change Foundation website on networks and alliances  http://www.changefoundation.com/lspace/css/css03/schedule.nsf?opendatabase&db=sc Start learning about network theory at Barry Wellman’s Netlab online resources http://www.chass.utoronto.ca/~wellman/

31. That’s all folks Say goodnight Irene