Chris Shanley Sharon Quirke Lynn Shaw Anne Sammut Centre for Education & Research on Ageing

1. Promoting an understanding of dementia for staff who deal with the public “over the counter” - challenges and achievements Chris Shanley Sharon Quirke Lynn Shaw Anne Sammut Centre for Education & Research on Ageing Alzheimer’s Australia NSW

2. Outline of session • Overview of project • Needs analysis • Engaging organisations to work with • Information and training resources developed for each organisation • Hurdles and how to overcome them • Concluding remarks

3. The project • Funded by NSW Department of Ageing, Disability and Home Care • A project within their 5-year dementia plan called Future Directions for Dementia Care and Support in NSW 2001-2006 • Collaboration between CERA and Alzheimer’s Australia NSW

4. Rationale behind project • People living with dementia potentially interact with a range of staff who provide services to the public e.g. Post Office, banks, public transport, shops, Government Departments

5. People with dementia can get into problems connected to symptoms of dementia e.g. memory loss, not being able to express themselves, becoming confused, becoming lost • Such problems can be minimised if public contact staff have a basic understanding of dementia and can respond to the person with care, dignity and respect

6. Methodology underlying the project • Approach a range of large organisations • Work with those willing to participate to develop training programs for their public contact staff • Set out to go beyond training - to analyse customer service environment and review policies and procedures • Programs to be particular to the needs and learning infrastructure of each organisation rather than being a single, generic resource

7. Needs analysis • Literature search • Web search • Focus groups with carers and with people living with dementia

8. Consultations with carers and people living with dementia • Two focus groups with carers • One focus group with people with mild dementia • 20 people in focus groups plus individual interviews with three carers

9. Main problem areas • Managing financial affairs and banking • Using public transport • Functioning in a general retail setting e.g. paying for things, becoming confused • Dealing with public officials at all levels

10. General issues • Lack of policies about dealing with dementia - staff do not follow-up • Decline in customer service generally • Physical design of large shopping centres • Difficulty recognising someone has dementia • Special issues for people with dementia in the younger age bracket • Dilemma about whether to self-disclose about having dementia • Dilemma between protecting someone and preserving their privacy and autonomy

11. Conclusions of needs analysis • Very little done in this area of work • Definite potential benefits for people with dementia and carers • Attitudinal needs: patience, empathy, courtesy • Knowledge needs: a basic understanding of dementia, being able to detect indicators or warning signs that a person may be having trouble because of dementia • Skill needs: basic communication skills for immediate situation and a clear understanding of follow-up

12. Initial approach to organisations • Negotiated between funding body and CERA • Tried to get a mixture of organisation types: bank / retail / Local govt / State govt • Tried to get some that had expressed some interest and others new to the issue • Involved a letter from DADHC to senior person in the organisation

13. Organisations approached • Woolworths • Roads and Traffic Authority • State Transit Authority (buses) • NSW Police • Gosford Council • NSW Businesslink (for Dept of Housing) • St George Bank • LATER: Coles Myer / Pharmaceutical Society of Australia

14. Final organisations in project • Pharmaceutical Society of Australia (representing community pharmacists) • NSW Police • Gosford Council

15. Pharmaceutical Society of Australia • Pharmacy Self Care Program • Just under 2,000 pharmacies nationally • Fact Card for general public titled Alzheimer’s disease and other causes of dementia • 16-page magazine with sections on the topic for pharmacist and pharmacy assistants • CPE questions for both groups

17. NSW Police • Attempted to extend agenda beyond training • Strong emphasis on wandering • Multi-prong reinforcement of material • Package for workplace education officers • Self-directed multimedia learning program • Article in Policing Issues and Practice Journal • Section within FAQ program on Police Intranet • SMIT program

18. Gosford Council • Education program with customer service focus for all public contact staff • Interactive education program from either CD or Council’s intranet • Looking to adapt program to be suitable for all Councils

19. Hurdles in using this approach • Low/no interest if not initiated within own business planning • Low/no interest if we could not find an internal supporter/advocate with some influence • Many organisations undergoing major restructuring so unreceptive to new, marginal initiatives • Private sector find it difficult to see relevance to their business interests • No legislative, regulatory or social pressure on organisations, as with physical disability • Low interest if topic not included in nationally accredited training packages for industry

20. Overcoming difficulties • Locate advocate within organisation • Make benefits to organisation clear • Go beyond imparting information • Cost effective programs • Develop partnerships & collaborations • Develop resources that are relevant, attractive & easy to use

21. Conclusions • Public contact staff have an important role in the lives of people living with dementia • Outcomes for all can be improved with basic training about dementia for public contact staff • Guidelines and resources have been trialed and are available to support this kind of work