Early Identification and Support Expert Team

Early Identification and Support Expert Team

Minutes

December 17th

In attendance: Michelle Barclay, Ron Petersen, Donna Walberg, Adine Stokes, Susan McPherson, Terry Barclay, David Goldberg, Riley McCarten, Karen Riddle, Cindy Leach, David Tullar, Angela Lunde, Connie Marsolek, Karen Gallagher, Earl Reiland, Kathryn Ringham, Robin Weis

Review of Team Charge

Looked at 3 areas of charge

·  Early accurate diagnosis

·  Access to interventions

·  Increased awareness

Riley McCarten discussed a few things from the Health and Health Care Team – Priority Issues:

·  Diagnostic and management incentives

·  Demonstrating cost effective care

·  Medical Home Model

·  Making cognition the 6th vital sign to be tested

·  Payment mechanism for disease education

·  Awareness – benefits of early diagnosis and reducing stigma of disease

Dr. Petersen – Overview of discussion

·  What are we talking about – pre-dementia, early dementia, worried well?

·  Screening issues when going to a doctor

·  Care coordination after screening

Earl Reiland talked about the 4 months after the diagnosis and the struggle with depression. He suggested that people need help right after the diagnosis – need encouragement to get through depression and things one can do.

Carla Zbacnik, Marketing Manager, presented Alzheimer’s Association awareness and PR campaigns that have been rolled out in the past year.

·  Know the 10 Signs Campaign – Commercials, brochures talking about the 10 warning signs

·  AEDA (Alzheimer’s Early Detection Alliance) Campaign to educate and raise awareness in companies and organizations

·  Local photo shoot of people in the early stage and their loved ones – used photos in brochures and billboard campaign in Minneapolis

Needs Exercise – Brainstorm with post –it notes

Detection/Early and Accurate Diagnosis

·  Providing physicians with a road map

o  Tools, education for physicians

·  Insurance options for young onset – immediate access

·  Uniform screening – protocol, standards

·  Definition of early dementia, boundaries of dementia

·  Simple screening tests for healthcare providers (evidence based)

·  Not wasting money on unnecessary tests

·  Quicker physician follow-up (with-in 6 weeks of diagnosis)

·  Medications – how to tell if they are working

·  Template for advanced care planning

·  Develop and fund a working connection between community orgs and health care providers (from diagnosis to support services)

·  Incentives for people to diagnose

Consensus focus/ Findings

Best practice recommendations/gold standard for diagnostic assistance and care coordination

·  “tool kit” framework

·  Evidence based medicine

·  Initial intervention/treatment

Access to interventions

·  Driving issues

o  Assessments to costly and in limited places (2 in the twin cities)

·  Strategies for coping – support groups

·  Evidence based support programs

·  Volunteer opportunities (with kids)

·  Unified collection of education materials that are available

·  New approaches to keeping people comfortable and safe in their homes/ keeping them independent

·  Competency and access to my health care provider

·  Awareness of local resources at physician’s offices

·  Coordinated care/resource info – one stop shop

·  Money for education, planning services, counseling

·  Reimbursable non-pharmacological interventions

·  Help with understanding legal advice, future planning

·  Yoga – physical and mental health

·  Needs after diagnosis

o  Reassurance you can still have meaningful life

o  Belief that you will continue to be loved

o  Things to do to slow progression

·  Lifestyle changes to fight disease (non –pharm)

·  More activities to help improve brain function

·  Caregiver support for men

·  Accurate information available

Consensus focus/Findings

Care coordination/education

(Healthy) Living well interventions

Coping strategies

Increase awareness

·  People not understanding the difference between MCI and normal aging. People not taking recommendations because they think it’s the normal aging process

·  Need professionals to believe early ID is beneficial

·  Campaigns geared towards a positive image of living with the disease

·  Unified source of information about research opportunities available (clinical trials)

·  Physician awareness

·  Provide opportunities to recently diagnosed to become advocates

·  Building awareness for people to be more assertive about getting diagnosis

·  Will early ID pay off for the state – save money?

·  Education opportunities geared towards communities

·  How can one get involved in Alz community

Consensus focus/Findings

Public awareness

Physician awareness – strategy development

·  $ - financial argument

·  Medical school

Homework

Review briefing paper which will build our case for making recommendations.

Looking for additional:

·  Arguments (for our case)

·  Articles

·  Evidence based materials

·  Definitions

·  Prevalence

Wiki site – (everyone should have received an email invitation)

Please email David if you did not receive this.

http://alzworkinggroup.pbworks.com/ is the website for the Alzheimer’s Working Group and Expert Team Sites

·  Reviewed the site

·  Briefing paper, charge, and articles can be located on this site

·  Team members have the ability to add articles to the site

Next meeting – Expert Team

Feb 25th 1:30 – 4:30pm

Location: TBD

April meeting

Date and Time: TBD

**Please respond to the doodle request, so we can schedule the April date as soon as possible**