Maureen Strudwick Tony Phiskie Carer Support Units CCLHN SWSLHN March 2011

2. TOP 5 What is TOP 5 Pilot Study Implementation Evaluation

3. What is TOP 5? A process to identify & engage the carer of a patient with cognitive impairment. negotiate and record up to five carer “strategies” that promote person-centred care and communication on the ward.

4. Where is TOP 5 located? Strategies are documented and located on the bed chart. an I.D. tag is placed on the top of the chart a sticker is placed on the spine of the medical record.

5. TOP 5 is person-centred practice which Recognises the importance of engaging carers. Values their knowledge, expertise and tips in caring for their care recipient. Effectively communicates carer’s information across sectors, people, systems. Creates a more settled and comfortable environment Reduces incidents of adverse events

6. TOP 5 Pilot 4 Acute Care Wards were targetted for 8 week Top 5 pilot Top 5 Champions were sought and trained Staff and Carers were surveyed pre and post pilot Staff were trained in carer role, and carer engagement

7. Top 5 Pilot Study Results Staff reported patients to have: a quicker recovery less agitation, frustration and distress more effective communication increased ability to relate

8. Top 5 Pilot Study Results Carers noted staff to: have increased awareness of their role (58% to 90%) invite them to share patient information (54% - 89%) listen and take on what they shared (54% - 72%)

9. TOP 5 Implementation Gain support Address Issues Communicate Gains

10. Gain support Establish partners: Ward leaders - NUMs, CNCs, CNEs, Delirium & Dementia CNC Ward ‘champion’ for “Carers as Partners in Care”

11. Address Issues Resistance to “yet another thing to do” Create confidence in the process using “champions” to model the process and to coach their peers, Demonstrate value of TOP 5 by using feedback at ‘handover’ and case conferences Embed TOP 5 in protocols for ward admissions, falls prevention, and delirium detection.

12. Communicate Gains Wins for all parties Reduced incidence of adverse events Reduced length of hospital stay Improved safety for patients, and staff Improved staff/patient & staff/carer relationships

13. TOP 5 Evaluation 2010 9 hospital wards in the CCLHN were included in the survey 64 Staff members included 43 nurses, 9 ward nursing executive, 2 medical and 10 allied health staff were interviewed

14. TOP 5 Evaluation Results 93% of staff were aware of Top 5 91% of staff reported Top 5 strategies benefit the patient 98% of nurses reported Top 5 strategies benefit them in nursing the patient 98% of staff said they would recommend Top 5 to colleagues and other health professionals

15. TOP 5 Evaluation Staff Comments: “Highly recommend it” “A great initiative” “Makes my job easier” “Less pressure, helps with knowing a patient” “Easy to use” “Very effective” “Really good resource tool, promotes patient comfort”

16. TOP 5 for CALD Carers Getting Started in SSWAHS Lessons Learnt

17. Interest in TOP 5 in SSWAHS Carer from SSWAHS Community Participation Network had heard Maureen’s presentation at 09 Conference Raised as agenda item at CAP committee Sep 09 Resolved to investigated interest in Top 5 Carers’ Program sent names of “interested parties” Meeting of “interested parties” called for Oct 09 Representative on Carers Action Plan committee - explain Meeting attended by Dementia Advisors, CNCs in Dementia, community participation manager & volunteer reps and Carers Program staff Representative on Carers Action Plan committee - explain Meeting attended by Dementia Advisors, CNCs in Dementia, community participation manager & volunteer reps and Carers Program staff

18. Carers’ Program, SSWAHS investigate TOP 5 EOIs asked from potential Top 5 sites More info sought from CSU, NSCCAHS I attended Dementia Café Maureen invited to present TOP 5 promoted on Intranet Bulletin Board (Home Page) Overwhelming response – 85 rsvps Explain connection with DAS’s via Dementia Cafes and Caring for Carers funding Spoke to Carers who had heard about Top 5 on the Central Coast Directors of Nursing Nursing Unit Managers Clinical Nurse Educators and Consultants Social Workers Occupational Therapists Physiotherapists Staff from Health Quality Program Community Participation Network members & managers Explain connection with DAS’s via Dementia Cafes and Caring for Carers funding Spoke to Carers who had heard about Top 5 on the Central Coast Directors of Nursing Nursing Unit Managers Clinical Nurse Educators and Consultants Social Workers Occupational Therapists Physiotherapists Staff from Health Quality Program Community Participation Network members & managers

19. NUM Quote on interest in TOP 5 “What appeals to me is the simplicity of the initiative and the simplicity of the actual Top 5 page that will go in the patients bed chart . . . . and the absence of the 25 page instruction manual; mandatory one day education; policy requirements; mandatory education about the policy; the mandatory monthly data reporting; and mandatory training on the mandatory monthly reporting data.”

20. Concerns by Carers Program No dedicated staff member to oversee project Is current context appropriate to embed TOP 5 Budget Staff shortages Introduction of LHNs No staff to project manage – relying on ground swell of interest Budget – carers program (not replacing staff) Area budget strategy of not filling positions Staff Shortages - use of agency staff (casual staff) by wards in all hospitals LHNs about to be introduced - delineation issues - adjustment to changeNo staff to project manage – relying on ground swell of interest Budget – carers program (not replacing staff) Area budget strategy of not filling positions Staff Shortages - use of agency staff (casual staff) by wards in all hospitals LHNs about to be introduced - delineation issues - adjustment to change

21. Incorporating CALD Population Liverpool Aged Care Unit have developed resources for CALD patients and Carers. CNE of Liverpool ACU attended first planning meeting & Maureen’s seminar and raised issue of Carers Program of CALD carers Close to 50% of patients in Aged Care Unit from CALD backgrounds Using Caring for Carers Better Practice funding the Liverpool Aged Care Unit had already developed resource for Carers from CALD backgrounds But felt CALD public were not being serviced well by the unitUsing Caring for Carers Better Practice funding the Liverpool Aged Care Unit had already developed resource for Carers from CALD backgrounds But felt CALD public were not being serviced well by the unit

22. CALD Population in SSWAHS the most culturally diverse populations in NSW live within the Sydney & SWS LHNs 40% speak LOE at home (26% in NSW) 60% in Fairfield and Canterbury Greatest no. speaking LOE at home: Arabic, Vietnamese, Cantonese, Italian & Greek

23. CALD Population in Liverpool SSWAHS Translation and Language Service Identified 5 major community languages in Liverpool LGA: Arabic, Chinese, Serbian, Spanish, Vietnamese Translated TOP 5 resources into Community Languages The brochure on Top 5 The pre and post Top 5 evaluation surveys

24. Establishing commitment Meeting of interested staff (April 2010) – good response 20 staff representing Balmain, Bankstown, Bowral, Camden, Campbelltown, Liverpool. Braeside (Fairfield Aged Care), Fairfield Hospital and Concord hospital also expressed interest. Outlined what the Carers Program could offer in way of support and funding for CALD resources Developed a process for getting things started.

25. The process begins …. Staff went back to their workplaces to garner local support for TOP 5 Essential that Working Groups established at each site Balmain, Bowral, Braeside, Camden, Liverpool, Fairfield ISSUE: Lot of interest BUT Carer Program unable to provide backing at the rate of rollout. Minimum of four members Two contact peopleMinimum of four members Two contact people

26. Working Groups established…. Carers Program letter to facility administrations TOP 5 processes established: Training of Staff Development of Manual Starting date Staff trained at each site Balmain – all wards Camden – Medical Transit Unit Liverpool – aged care wards DONs, General Managers, and Clinical Directors of above hospitals to inform them of this initiative. DONs, General Managers, and Clinical Directors of above hospitals to inform them of this initiative.

27. CALD Patients and Carers Clinicians identifying CALD patients and carers receiving ‘less than’ service Use of interpreters Communication issues Requires greater staff effort for same result with patient Cultural differences around the role of family and carer Religious beliefs, superstitions Variations in translation of English Use of Interpreters Difficult to arrange so alternatives used Communication Issues CALD carer takes longer to explain what they want staff to do Can take longer to establish means of communication – even a relative who can start the process Use of Interpreters Difficult to arrange so alternatives used Communication Issues CALD carer takes longer to explain what they want staff to do Can take longer to establish means of communication – even a relative who can start the process

28. Research Confirms Clinicians Experience Local and National research has established access barriers for CALD Carers: Difficulties with language Lack of knowledge of services Lack of culturally & linguistically appropriate services & assessment for their carees Australia is currently experiencing a major shift in its demographic profile. Decreasing birth rates and increasing ethnic diversity have culminated to a time where we are about to witness a significant increase in the number of culturally and linguistically diverse older Australians. In fact by 2011, 1 in 5 people aged 80 or over will be from a CALD background, increasing to 1 in 4 people by 2026 It is well known that the incidence of dementia increases as we age. As such, dementia care is fast becoming a major issue for both community & residential aged care service providers. Add to this the complexity of caring for a population that is increasingly culturally and linguistically diverse and it can be seen that there is much work to be done to ensure that our multicultural ageing population can access appropriate care Marion Lau, OAM Chair of Ethnic Communities Council oc Victoria Aged Care Committee Australia is currently experiencing a major shift in its demographic profile. Decreasing birth rates and increasing ethnic diversity have culminated to a time where we are about to witness a significant increase in the number of culturally and linguistically diverse older Australians. In fact by 2011, 1 in 5 people aged 80 or over will be from a CALD background, increasing to 1 in 4 people by 2026 It is well known that the incidence of dementia increases as we age. As such, dementia care is fast becoming a major issue for both community & residential aged care service providers. Add to this the complexity of caring for a population that is increasingly culturally and linguistically diverse and it can be seen that there is much work to be done to ensure that our multicultural ageing population can access appropriate care Marion Lau, OAM Chair of Ethnic Communities Council oc Victoria Aged Care Committee

29. Local Focus Group Research Aged Care Research Unit, Liverpool Hospital Not speaking English was a major issue in communication of information Need for Dementia education for CALD & broader community Hospitalisation noted as a factor in the decline in condition of PWD Comments on Dementia care in Dr’s surgeries, Day Care Centres, Residential Care facilities and Community Services. Lack of understanding & culturally appropriate care in hospitals Arabic, Chinese, Italian and Spanish CALD groups who spoke English were more able to access info from diverse sources including internet Noted that lack of info exacerbated denial of dementia but that one had to undergo the experience of care giving to a person with dementia to truly understand it Reported extremely poor treatment in hospital – attributed to PLWD’s inability to communicate AND staff’s lack of cultural competence AND understanding of dementia: “When the residents can’t communicate to the nurse it’s a big problem. They will start to become agitated and ahh, they become uncomfortable and they can become angry and aggressive especially when they need to go to the toilet, that’s number one” Felt the need to stay in hospital to ensure appropriate care provided and needs met Residential Care seen as a last option by CALD Carers but Day Care more acceptable (strangers not in home)Arabic, Chinese, Italian and Spanish CALD groups who spoke English were more able to access info from diverse sources including internet Noted that lack of info exacerbated denial of dementia but that one had to undergo the experience of care giving to a person with dementia to truly understand it Reported extremely poor treatment in hospital – attributed to PLWD’s inability to communicate AND staff’s lack of cultural competence AND understanding of dementia: “When the residents can’t communicate to the nurse it’s a big problem. They will start to become agitated and ahh, they become uncomfortable and they can become angry and aggressive especially when they need to go to the toilet, that’s number one” Felt the need to stay in hospital to ensure appropriate care provided and needs met Residential Care seen as a last option by CALD Carers but Day Care more acceptable (strangers not in home)

30. Instigating TOP 5 with CALD Carers WHO? Nursing are 24 hours, 7 days a week Nurses have specific high priority protocols that MUST be followed prior to end of each shift Nursing has competing demands on time, energy, and mental space BUT TOP 5 WILL START OR FINISH ON THE WARD

31. Instigating TOP 5 with CALD Carers con’t TIME Arranging time with carer Booking interpreters Time-poor Nursing staff looking at longer time to work with CALD carers Cultural differences impact on relationship between carers and staff Cultural Differences visiting numbers, Visiting times, constant presence, understanding of Dementia) Cultural Differences visiting numbers, Visiting times, constant presence, understanding of Dementia)

32. Feedback Essential Staff need to know that Top 5 is worth the effort Limited day-to-day involvement Carers’ Program Local data collection – CALD Carer specific No. of CALD patients with carers What is CALD background Is English spoken at home Was interpreter used – if not why not Who was used Did this cause problems Other issues identified No. of CALD patients with carers What is CALD background Is English spoken at home Was interpreter used – if not why not Who was used Did this cause problems Other issues identified

33. Lessons Learnt Need for a dedicated project worker to support working parties Engage Geriatricians Working Parties need to be endorsed formally by executive Definite commitment by nursing administration Working Parties staff training must include engaging and communicating with CALD carers Involvement of “community” Nursing – at Senior or Executive level As much as the good will of front liners is essential – it is also not enough by itselfNursing – at Senior or Executive level As much as the good will of front liners is essential – it is also not enough by itself

34. …and more lessons … Establishing Worth & Good Will Hospitals Networks – hospital and community networks Working groups LHN Executive Community General Aged Care CALD groups Hospitals - Facility Administrators Networks -community participation networks about PR and multicultural health in terms of connections with specific CALD communities Working Groups – “lead agency” project workers Community – for on the ground pressureHospitals - Facility Administrators Networks -community participation networks about PR and multicultural health in terms of connections with specific CALD communities Working Groups – “lead agency” project workers Community – for on the ground pressure

35. REFERENCES NSWHealth “Carer Action Plan 2007 – 2012” Alzheimer’s Australia Victoria “Perceptions of Dementia in Ethnic Communities “ October 2008. NSWHealth “Easy Guide to Clinical Practice Improvement” 2002 Foreman, P & Gardner, I. (2005). Evaluation of Education and training of staff in dementia care and management in acute settings. Melbourne: Victorian Department of Human Services Web references: www.health.vic.gov.au/agedcare/ www.nsccahs.health.nsw.gov.au/carersupport/cc/centralcoast.shtml