TOP5 A carer s tool to support continuity of care for people with thinking and communication difficulties, across all care settings.

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1 TOP5 A carer s tool to support continuity of care for people with thinking and communication difficulties, across all care settings. Maureen Strudwick Carer Support Unit (02) , July 2012

2 On TOP5 Nursing Unit Manager, Acute Care Ward: What appeals to me is the simplicity of the initiative and the simplicity of the actual TOP5 page that goes on the patients bed chart. Aged Care Facility Manager: Staff find it really easy to instigate the residents TOP5 strategies. It really helps new staff and agency staff with getting to know the resident. The Accreditation Agency was very impressed with TOP5 we have now been found to be compliant with behaviour management.

3 TOP5 Addresses The Carer s Recognition Act National Safety and Quality Health Services Standard No. 2: Partnering with Consumers "A consumer centred approach to care involves communicating and sharing information between consumers and/or carers and healthcare providers."

4 When in hospital people with cognitive impairment can be disorientated, confused, frightened, agitated, and/or aggressive. Fact: Communication and behaviour, can be difficult to interpret by staff. Carers worry that the hospital care provided is not personalised and will be inadequate to settle and calm the patient. Solution: Carers advice be written down and made easily accessible to all staff caring for that person. This record is the TOP5

5 What is TOP5? TOP5 is a process to engage carers to identify and share specific, unique strategies, that help settle, calm, and personalize care for a person who has confused thinking memory problems communication difficulties.

6 A life shared.

7 What are TOP5 strategies? Families often understand what their family member means by their words and behaviours. Carers may share information which may include: - established routines and personal preferences - objects of significance and must haves - words or actions to comfort and calm the person - information that would assist in communication such as interests, previous work, past hobbies.

8 How is TOP5 gained? The carer of a person with cognitive impairment is invited to share five essential strategies that would assist staff to provide person-centered care and communication. Staff may work in hospitals, residential facilities, community services, or in the home.

9 Examples of TOP5 strategies: Around 4 pm everyday dad becomes agitated. If you tell him the car is in the garage he will settle down. If unsettled, give Mary her handbag. She will place it under her pillow. Ernie must have his keys and wallet with him at all times. Betty is fearful of strangers. If you smile at her as you approach, she will be relaxed and will co-operate. Dad gets aggravated when you don t agree with him. Walk away and try again later, or offer a cup of tea.

10 TOP5 Hospital Pilot An 8 week pilot were 4 Acute Care Wards were targeted TOP5 Champions were trained Staff and Carers were surveyed pre and post pilot Staff were trained in carer role, and carer engagement

11 TOP5 Hospital Pilot Results Staff reported patients to have: a quicker recovery less agitation, frustration and distress more effective communication increased ability to relate

12 TOP5 Hospital Pilot 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%)

13 Wins for all involved Reduced incidence of adverse events Reduced length of hospital stay Improved safety for patients, and staff Improved staff/patient & staff/carer relationships

14 TOP5 person-centred practice Recognises carers as partners in care and values their knowledge, expertise and tips in caring for their care recipient. Effectively communicates carer s information across sectors, services, people, systems. Creates a more settled and comfortable environment Reduces incidents of adverse events

15 TOP5 spreads across settings After the first six months of embedding TOP5 in hospital wards, TOP5 was piloted in a dementia specific hostel in a Residential Aged Care Facility. Within 4 months the facility expanded the TOP5 to include all low care and high care residents. The Aged Care Accreditation Agency mentioned TOP5 as an excellent management tool in their accreditation report. 12 months later TOP5 was introduced into 30 RACFs over a 6 month period.

16 Residential Aged Care worker shares TOP5 with hospital staff.. Mary has a very quiet voice and can look like she is just mouthing. If you get very close to her, you will hear her voice. Mary is hard of hearing, but can lip read. Face her and speak slowly. Don t shout as she will become anxious. Mary fidgets and points to the door when she wants to go to the toilet. Mary is a very modest lady, so would be very distressed to have a male nurse bathe or toilet her. Mary loves her black cardigan with the fur collar. She gets quite cold, so if you can t find it, give her a warmed blanket.

17 TOP5 spreads across settings From 2011 TOP5 has been slowly introduced to Community Service Providers who care for people with communication problems and thinking difficulties in their own homes. Carers are asked to share their tips with care workers to support the client both in their home and at community venues. The tips are written on a TOP5 form and kept in the client s home and with the service provider.

18 Where is TOP5 located? In Hospital: 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.

19 Where is TOP5 located? In Aged Care Facility - strategies are documented on a TOP5 form and updated at Care Plan reviews. - TOP5 form may be located in the resident s room or kept with the resident s care plan. - TOP5 stickers may be used on medical record files.

20 Where is TOP5 located? In the Home: Carer s tips are recorded and placed in an accessible position in the home where it won t be lost. A TOP5 tag is placed at the entrance to the home. The location of the TOP5 form is recorded on the back of the tag.

21 When people with cognitive impairment are transferred to hospital they can become disorientated, confused, frightened, agitated, and/or aggressive. Communication and Behaviour, can be difficult to interpret and manage by staff who don t know the person. When their TOP5 is sent in to the hospital from their RACF, or brought in by the carer, staff can adapt and use the strategies to support the patient while in hospital.

22 COMMUNITY Home Alone Independent with Community Support Home with Carer With Community & Respite Services Supported Accommodation Dependent on Support Workers TOP 5 in Home Home Support Workers Top 5 ID is placed at home s entrance and informs whereabouts of Top 5 Form Top 5 provides access to personalised strategies to support care and communication with client All community workers have consistent information to support client care Top 5 is part of the Care Plan for residents in supported accommodation TOP 5 is Flexible and Transferable Across Settings Top 5 travels with person to hospital HOSPITAL Unplanned Admissions Paramedic Emergency Department Planned Admissions Integrated Booking Unit Surgical Admissions Unit TOP 5 on Bedchart Unplanned Admissions Paramedic is given Top 5 by Carer or will use Top 5 ID to locate form in the home Paramedic will be given Top 5 by Residential Facility with transfer docs Top 5 will be used by Paramedic and staff of Emergency Department to support and communicate with patient Planned Admissions On admission, Carer is given pamphlet, and Top 5 strategies are negotiated with staff Top 5 travels with resident to hospital RESIDENTIAL Respite Accommodation Carer Respite & Short term care Dementia Specific Hostel Staffed & secure environment Supervision for ADL High Care Facility Dependent for all ADL TOP 5 in Resident s Care Plan Respite and New Admissions Carer given Top 5 pamphlet & asked to identify specific personal strategies to support care and communication Hostel and High Care Residents Top 5 strategies developed with carer and family. Pamphlet provided. Strategies are reviewed with care plan reviews, and may include new strategies identified by staff

23 TOP5 Hospital Evaluation October 2010: 9 hospital wards in the CCLHD were included in the survey 64 staff members included 43 nurses, 9 ward nursing executive, 2 medical and 10 allied health staff were interviewed

24 TOP5 Evaluation Results 93% of staff were aware of TOP5 91% of staff reported TOP5 strategies benefit the patient 98% of nurses reported TOP5 strategies benefit them in nursing the patient 98% of staff said they would recommend TOP5 to colleagues and other health professionals

25 TOP5 Evaluation Clinical Staff Comments: Really good resource tool, promotes patient comfort A great initiative Makes my job easier Less pressure, helps with knowing a patient Easy to use Very effective Highly recommend it

26 TOP5 Embedded in NSW TOP5 was developed by the Central Coast Local Health District TOP5 has been taken up by hospitals in the following Local Health Districts: Sydney Western Sydney, West Sydney, Hunter New England, Northern NSW, Mid North Coast TOP5 has been initiated in over 30 RACFs on the Central Coast TOP5 has also been adopted by RACFs in Revesby, Hornsby, Greenwood, Wollongong.

27 TOP 5 Embedded in NSW Best practice tool identified in NSW Dementia Services Framework for hospital settings Recognized by Alzheimer s Australia as successful initiative for carer involvement and person-centred practise TOP5 endorsed by Clinical Excellence Commission as best practice for patients with Cognitive Impairment The Clinical Excellence Commission received funding from HCF for a 2 year trial to embed TOP5 in 15 public and 5 private hospitals across NSW.

28 TOP5 Award Central Coast Local Health District partnered with Alzheimer s Australia NSW, and Clinical Excellence Commission Partnering with Patients Program to acknowledge individual and organizational commitment to Carer involvement and Person Centred Care. Awards reflect values expressed in the NSW Dementia Framework

29 TOP5 Award Awards are given to individuals who champion TOP5 to their peers and within their service Awards are given to services that embed TOP5 in their protocols and practices. These services include: Hospital Wards Local Health Districts Services and Teams Residential Aged Care Facilities across NSW

30 TOP5 Resources All resources are freely available and can be downloaded in pdf format from our website

31 REFERENCES NSWHealth Carer Action Plan Alzheimer s Australia Victoria Perceptions of Dementia in Ethnic Communities October Strudwick, M.E. TOP 5 Translating a carer s knowledge into staff action for responsive care across dementia service settings. Dementia. Do we need a different point of view? HammondCare 8 th Biennial International Conference on Dementia. May 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 reference: