Contents. Introduction 3. Required knowledge and skills 4. Section One: Knowledge and skills for all nurses and care staff 6

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Decision-making frameworks in advanced dementia: Links to improved care project. Page 2 of 17 Contents Introduction 3 Required knowledge and skills 4 Section One: Knowledge and skills for all nurses and care staff 6 Section Two: Knowledge and skills for registered and enrolled nurses 10 Section Three: Quiz 13 Quiz answers 14 Quiz 26

Introduction The agitation framework consists of the following components: guidelines; flowcharts; assessment forms; supporting information. Listed below are the knowledge and skills you should expect your nurses and care staff to have to enable them to effectively assess and manage agitation, and suggestions for training if an individual is not competent to provide care. Timely assessment and management of symptoms is a major component of a palliative approach to dementia care. All nurses and care staff have a responsibility to ensure they are able to assess and manage agitation experienced by residents, within their scope of practice. This manual is to be used in conjunction with the Agitation decision-making framework for nurses and care staff caring for people with advanced dementia, Guidelines and Supporting Information. It is recommended that training be offered regularly, so that all nurses and care staff are able to master the required knowledge and skills within three months of commencing employment in the facility. Palliative Care Australia resources Palliative Care Australia have developed a number of resources to assist with training in a palliative approach to care. Use the resources (available from http://www.pallcare.org.au) to supplement this training package. We recommend that as many staff as possible complete the two competency-based modules in a palliative approach to care: CHCPA01A: Deliver care services using a palliative approach; CHCPA02A: Plan for and provide care services using a palliative approach. Decision-making frameworks in advanced dementia: Links to improved care project. Page 3 of 17

Required knowledge and skills All nurses and care staff know that agitation should be viewed as a clinical sign of inability to communicate needs, rather than a specific behavioural problem; know that there are a multitude of behaviours that can be labelled as agitation; know the common causes of delirium, the signs and symptoms of delirium, and basic strategies that can be used when a resident is suffering from delirium; be able to complete a Confusion Assessment Method (CAM) assessment tool for delirium, and know to whom to report possible delirium; know the signs and symptoms of terminal agitation, and understand the importance for both the resident and family members of managing terminal agitation; know that treatment interventions based on person-centred care principles, that is, individualised to the affected resident, should be applied in a systematic way; know that pharmacological methods of managing severely agitated behaviour should be resorted to only when a systematic review of the possible causes has been completed; know that epidemic agitation occurs when a number of residents become agitated at once, and that the environment, other people in the vicinity, and basic care practices all need to be considered when a number of residents are agitated at once; know basic strategies that can be implemented to settle epidemic agitation ; know that agitation can be due to pain and discomfort from physical causes; know that balancing sensory stimulating periods with quieter periods can assist residents with agitation; be able to complete the Brief Agitation Rating Scale (BARS) and know when to complete it and to whom to report the results; be able to complete a Behaviour Analysis Form, using the ABC method, and know when to complete it and to whom to report the results; know how to communicate with an agitated resident in a way that can assist in calming the resident; know and abide by the facility policy relating to the use of restraints. Enrolled nurses and registered nurses * NB a care staff member (eg Assistant in Nursing) may have sufficient knowledge and skills to undertake some of the tasks associated with assessment and management of agitation within this section. All of the above knowledge and skills, and: be competent in completing a history relating to previous agitated behaviours and the way that these behaviours have been managed by family members and other carers; Decision-making frameworks in advanced dementia: Links to improved care project. Page 4 of 17

have sufficient clinical reasoning skills to be able to complete a care plan for managing agitated behaviour; be able to provide a rationale for the use of assessment tools such as the CAM and BARS, and understand the limitations to using these tools; have sufficient clinical reasoning skills to know when an assessment for agitation is needed; be able to complete an assessment for physical causes of agitation, and commence nurse-initiated treatments where applicable; have sufficient clinical reasoning skills to know when assessment and treatment of delirium is needed, taking into consideration the goals of care of the resident; understand the benefits and limitations associated with positive comfort interventions for agitation, and be able to direct care staff when using these interventions for agitation; understand the rationale for using psychotropic medication for agitation, and the common side effects of these medications; understand the role of the nurse in family conferences and be able to participate in a multidisciplinary family conference for a resident receiving a palliative approach to care, including determining the goals of care for the resident. Decision-making frameworks in advanced dementia: Links to improved care project. Page 5 of 17

SECTION ONE: KNOWLEDGE and SKILLS All Nurses and Care Staff The basic knowledge and skills required to enable all nurses and care staff to understand the assessment and management of agitation in residents with advanced dementia are listed below. Organise inservice education as required. Suggested topics are listed below. Ensure all registered and enrolled nurses are aware of the correct reporting and recording requirements for assessing and managing agitation within the facility, so they can adequately supervise the work of the care staff. Can every nurse and care staff member: Yes No If no, then: List 7-10 challenging behaviours that could be considered to be agitation. Describe the symptoms of delirium; List 5 causes of delirium; List some basic strategies that can be used to assist a resident who is suffering from delirium? Demonstrate that he/she can complete a Refer to pages 6-7 of the Supporting Information. Conduct a short inservice education session if required. Stress that agitation cannot be defined simply, and that agitation should be considered to be maladaptive communication: the resident cannot state his/her needs any other way. Refer to page 10 of the Supporting Information. Conduct a short inservice education session if required. Stress that delirium is extremely common amongst residents with dementia; that delirium can have severe consequences for the resident, including making their cognitive function worse; that residents with advanced dementia may become acutely agitated when delirious, but often it is the opposite and they become less active and more quiet than usual; and that common causes of delirium include not drinking enough, having an infection, or being in pain. Strategies to assist the resident include offering plenty of fluids to drink; keeping the room quiet and not too bright; making sure that hearing aids are in place and functioning; reorienting the resident frequently. Conduct a short inservice education session if required. Ask the staff member to select a resident with advanced dementia Decision-making frameworks in advanced dementia: Links to improved care project. Page 6 of 17

Can every nurse and care staff member: Yes No If no, then: delirium screening tool such as the Confusion Assessment Method (CAM); Describe when a delirium screening tool should be used; and complete the CAM tool, seeking information from regular care staff if the resident is not well known to him/her. Discuss any problems in interpreting the tool that the trainee raises. Stress that a delirium screening tool should be completed on Discuss the facility policy in relation to admission and at any time that the resident with advanced delirium screening and follow-up. dementia becomes acutely agitated, or found to be increasingly hypoactive. Discuss the facility policy relating to delirium screening, including what further assessment and management is available, in keeping with the goals of care of List some symptoms associated with terminal agitation; Describe why it is important to manage terminal agitation effectively. Discuss the steps that should be undertaken to assess and manage an individual resident who is mildly agitated. Discuss the steps that should be undertaken to assess and manage an individual resident who is severely agitated. the resident. Refer to page 11 of the Supporting Information. Conduct a short inservice education session if required. Stress that terminal agitation is distressing for the family and caregivers, and requires sensitive care from all staff. Medications should be given if a resident has terminal agitation to settle the resident. Keeping calm, and treating the resident with respect will help the family members to adjust after the resident s death. Refer to page 12 of the Supporting Information. Stress that if the behaviour does not affect the comfort and safety of other residents, visitors or staff then taking a conservative approach and tolerating the behaviour is the best course of action. Refer to pages 13-22 of the Guidelines, and Figure 2 (page 4). Conduct a short inservice education session if required. Stress that physiological causes should be eliminated first; then triggers should be reviewed using the ABC model. Only after these assessments have occurred should positive comfort interventions such as multi-sensory rooms be used. An analgesic (pain) medication should be trailed before resorting to an antipsychotic. Refer the staff member to pages 8-12 of the Guidelines. Conduct a short inservice education session if required. Stress Decision-making frameworks in advanced dementia: Links to improved care project. Page 7 of 17

Can every nurse and care staff member: Yes No If no, then: List the 3 major domains that require review if a number of residents are agitated at once; that the environment; the behaviour of other people in the vicinity; and the basic care practices should all be considered List 5 interventions that could be tried if when deciding how to manage the agitation. Also stress that epidemic agitation is a problem in the staff attitudes, and the staff member s ability to stay calm and facility. quiet and communicate play an important role in managing epidemic agitation. Environmental modification, improving care practices, and improving staff knowledge and skills will Describe in his/her own words 3 possible physical causes of agitation, other than those already listed for delirium. Describe why it is important to balance periods of sensory arousal with quieter periods. Demonstrate that he/she can complete an agitation rating scale such as the BARS; Describe when he/she would use the tool. also assist in reducing episodes of epidemic agitation. Refer the staff member to pages 13-17 of the Guidelines. Conduct a short inservice education session if required. Stress that many agitated behaviours may be due to physical causes. Remind the trainee(s) that they need to be calm and flexible, and that simple care practices, such as not having a hearing aid fitted properly and working; or being constipated, can cause agitated behaviour. For this reason, care staff members should always report new agitated behaviours to the RN or nurse in charge if a resident doesn t settle easily. Refer the staff member to page 16 of the Supporting Information, and pages 17-19 of the Guidelines. Conduct a short inservice education session if required. Stress that some residents are constantly aroused, which contributes to agitation. They need periods of rest and activity scheduled throughout the day, at approximately 1.5 hourly intervals. Every resident needs some individual (1:1) time twice per day, for at least 10 minutes. Provide additional education if necessary so the care staff and diversional therapist program these elements into every day s activities. Refer the staff member to page 23 of the Supporting Information. Conduct a short inservice education session if required. Stress that the tool does not measure the severity of the behaviours, only the frequency. Stress that care staff should give the completed tool to the RN or nurse in charge so Decision-making frameworks in advanced dementia: Links to improved care project. Page 8 of 17

Can every nurse and care staff member: Yes No If no, then: he/she can assess further and seek advice from the general practitioner or other appropriate professional if the agitation is severe and causing concern. Demonstrate that he/she can complete a Behaviour Analysis Form using the ABC method; Describe when he/she would use the tool. Describe 5 communication skills he/she can use when relating to an agitated resident. Discuss the facility policy relating to the use of restraints, and know what documentation is required by the facility. Refer to pages 17-18 of the Guidelines. Conduct a short inservice education session if required. Stress that using the tool helps to identify the triggers that cause agitation for an individual resident; what the actual behaviour is that is exhibited and causing concern; and what the outcomes are. Completing a form such as this provides evidence to show other health professionals if necessary. Refer to pages 11-12 of the Guidelines. Conduct a short inservice education session if possible. Allow trainees to role play and practice communication skills. Refer to the facility policy and documentation. Refer to the NSW Health Guidelines on restraint (see annotated Bibliography for access details). Conduct a short inservice education session if necessary. Decision-making frameworks in advanced dementia: Links to improved care project. Page 9 of 17

SECTION TWO: KNOWLEDGE and SKILLS Registered and Enrolled Nurses All registered and enrolled nurses are expected to have knowledge and skills as outlined in Section One. In addition, they should demonstrate more comprehensive knowledge and skills relating to assessment and management of agitation as outlined in this section. Organise inservice education as required. NB a care staff member (eg Assistant in Nursing) may have sufficient knowledge and skills to undertake some of the tasks associated with assessment and management of agitation within this section. To assess knowledge, ask every registered nurse and enrolled nurse to complete all 15 questions of the Quiz (page 16 of this document) to provide a baseline measure before undertaking education relating to agitation; correct the quiz questions, and provide a short inservice education session relating to any topic that a number of nurses found difficult, or responded to incorrectly; for an individual nurse having difficulty with a specific topic area, discuss the problem with him/her and refer to the relevant sections of the Guidelines and Supporting Information for review. Advise the staff member that he/she will be asked to repeat the Quiz in one month; repeat the Quiz questions with the individual nurse. If the nurse still cannot correctly respond to a question(s), review the problem topic again with him/her. Discuss the issue with facility management if there is a likelihood that the knowledge deficit will impact negatively on the care of the residents, so the nurse s performance can be monitored appropriately. Can every registered nurse and enrolled nurse: Undertake and record a history of previous agitated behaviour and successful interventions for a new admission, or a review of a resident? Describe where to record the history? Develop a behaviour care plan based on the resident s history, individual needs and Yes No If no, then: Refer the nurse to pages 5-7 of the Guidelines. Use the facility behaviour management record forms and care plan. Conduct an education session if necessary. Stress the importance of regularly updating the care plan to reflect the goals of care relating to agitated behaviour, delirium and the goals of care. Decision-making frameworks in advanced dementia: Links to improved care project. Page 10 of 17

Can every registered nurse and enrolled nurse: preferences? Provide a rationale for why using tools such as the BARS and CAM are useful, and the limitations to the tools. Describe when they would direct a care staff member to complete an agitation assessment tool?; Describe which tool they would use, and under what circumstances they would use it?; List what physical assessment they would undertake, or direct a care staff member to undertake, to assess for physical causes of agitation? Answer questions 3, 4, 5, 7, 8 & 13 of the Quiz. Describe when to assess for delirium; Answer questions 1,9, &14 of the Quiz correctly? List 5 positive comfort interventions for an agitated resident; Answer questions 2, 11 & 12 of the Quiz. Yes No If no, then: Many tools, including the BARS, have limitations. In the case of the BARS only the frequency of behaviours, not the intensity, are recorded (similar to pain behaviour rating scales). Despite this, a pre and post measure can provide some objective information on which to decide the effectiveness of a particular intervention. Refer the RN/EN to pages 7 & 13-17 of the Guidelines. Conduct a short inservice education session if required. Stress that only severe agitation should be assessed, for milder cases a degree of tolerance should be used. However, a pain assessment and giving a simple analgesic could be considered. For severe agitation, use of the BARS and a Behaviour Record Form may be required. Stress that some studies have found that 40% of behaviours, have a physical cause and the resident is trying to express an unmet need. Note that some assessment, such as pathology tests, may be against the goals of care of the resident, if the person responsible in consultation with the general practitioner and facility staff, have agreed that comfort measures only without unnecessary tests is the goal of care. Refer the RN/EN to page 10 of the Supporting Information, and the facility policy relating to delirium screening for further information. Conduct a short inservice education session if required. Stress that delirium is extremely common amongst residents with dementia, difficult to recognise, and has severe consequences for the resident. Refer the RN/EN to pages 13-19 of the Supporting Information, and page 20 of the Guidelines. Conduct a short inservice education session if required. Stress that positive comfort measures may be resource intensive for one resident, Decision-making frameworks in advanced dementia: Links to improved care project. Page 11 of 17

Can every registered nurse and enrolled nurse: Describe when antipsychotic medications are required; List 5 common side effects from antipsychotic medication; Answer questions 6, 10 & 15 of the Quiz. Yes No If no, then: and that physiological causes of agitation and negative triggers should be reviewed and eliminated as possible causes before applying positive comfort measures. Note also that there is very little research evidence to support the use of many positive comfort measures, so it will be necessary to trail and evaluate what works best for an individual resident. Refer the RN/EN to pages 16-17 of the Guidelines. Conduct a short inservice education session if required. Stress that analgesics, antibiotics, and antipsychotic medications are all useful in treating agitation, but that all medications have side effects and the use of antipsychotic medications should be limited to extreme cases of agitation not amenable to other treatment. Stress the importance of trying to take the resident off the antipsychotic medication after a few months if possible. RN/ENs should alert care staff to be vigilant for side effects, which may include constipation; dizziness; postural hypotension; drowsiness; dryness of mouth; headache; runny nose; vision problems; weakness; weight gain; tachycardia; increasing the level of agitation; difficulty in speaking or swallowing; restlessness or need to keep moving; stiffness of arms or legs; trembling or shaking of hands and fingers. Decision-making frameworks in advanced dementia: Links to improved care project. Page 12 of 17

SECTION THREE: QUIZ Decision-making frameworks in advanced dementia: Links to improved care project. Page 13 of 17

SECTION THREE: QUIZ ANSWERS AGITATION QUIZ For questions 1 4 please circle the correct response: 1. Delirium could be caused by: a) pain; b) dehydration; c) urinary tract infections; d) agitation; e) a,b,c; f) a,b,c,d. (see pages 7-8 of the Supporting Information ) 2. Agitation may be reduced by: a) having a companion animal in the ward area; b) multi-sensory rooms; c) simulated presence therapy; d) all of the above. (see pages 13-15 of the Supporting Information ) 3. The most accurate way to assess if a resident has pain is: a) For all the nurses to observe the resident together; b) To monitor the resident s vital signs for any changes; c) To ask the resident if he/she has any pain; d) To use the intuitive skills of the usual care staff. (refer to the pain framework for more information) 4. Factors that could trigger agitation include: a) not enough exercise; b) not enough stimulation; c) tiredness; d) all of the above; e) none of the above. (see pages 17 of the Guidelines ) Please turn the page for more questions Decision-making frameworks in advanced dementia: Links to improved care project. Page 14 of 17

For questions 5 16 please place a tick in the box to indicate whether the statement is true or false. True False 5 A resident with impaired vision is more likely to be verbally agitated True. See page 14 of the 6 Anticonvulsant medications may improve agitation 7 A behavioural pain assessment tool accurately determines the intensity of pain experienced by a resident. 8 A resident who is agitated by lunchtime each day needs to balance the arousal by resting quietly all afternoon. 9 A resident with dementia who is less active than usual may have an infection causing delirium 10 Training aged care facility staff about problem behaviours can reduce restraint use, even if there s an increase in the numbers of problem behaviours. 11 Aromatherapy is a pharmacological treatment that can reduce agitation. 12 Positive comfort measures such as massage or diversion should be tried for agitated residents before trying to find the cause of the agitation. 13 Residents who are agitated may be responding to the mood of the caregivers. 14 Residents with severe dementia are at low risk of delirium. 15 Using restraints may increase agitation in residents with dementia. Guidelines True. See page 23 of the Guidelines True. See page 8 of the Support -ing Info. True. See page 17 of the Support -ing Info. True. See page 16 of the Support -ing Info. True. See page 17 of the Guidelines True. See page 17 of the Support -ing Info. False. Refer to the pain framework False. See page 11 of the Guidelines False. See page 13 of the Guidelines False. See page 7 of the Support -ing Info. Decision-making frameworks in advanced dementia: Links to improved care project. Page 15 of 17

AGITATION QUIZ For questions 1 4 please circle the correct response: 1. Delirium could be caused by: a) pain; b) dehydration; c) urinary tract infections; d) agitation; e) a,b,c; f) a,b,c,d. 2. Agitation may be reduced by: a) having a companion animal in the ward area; b) multi-sensory rooms; c) simulated presence therapy; d) all of the above. 3. The most accurate way to assess if a resident has pain is: a) For all the nurses to observe the resident together; b) To monitor the resident s vital signs for any changes; c) To ask the resident if he/she has any pain; d) To use the intuitive skills of the usual care staff. 4. Factors that could trigger agitation include: a) not enough exercise; b) not enough stimulation; c) tiredness; d) all of the above; e) none of the above. Please turn the page for more questions Decision-making frameworks in advanced dementia: Links to improved care project. Page 16 of 17

For questions 5 16 please place a tick in the box to indicate whether the statement is true or false. 5 A resident with impaired vision is more likely to be verbally agitated 6 Anticonvulsant medications may improve agitation 7 A behavioural pain assessment tool accurately determines the intensity of pain experienced by a resident. 8 A resident who is agitated by lunchtime each day needs to balance the arousal by resting quietly all afternoon. 9 A resident with dementia who is less active than usual may have an infection causing delirium 10 Training aged care facility staff about problem behaviours can reduce restraint use, even if there s an increase in the numbers of problem behaviours. 11 Aromatherapy is a pharmacological treatment that can reduce agitation. 12 Positive comfort measures such as massage or diversion should be tried for agitated residents before trying to find the cause of the agitation. 13 Residents who are agitated may be responding to the mood of the caregivers. 14 Residents with severe dementia are at low risk of delirium. 15 Using restraints may cause agitation in residents with dementia. True False Decision-making frameworks in advanced dementia: Links to improved care project. Page 17 of 17