facilitator s guide dementia learning resource for aboriginal and torres strait islander communities

Transcription

1 facilitator s guide dementia learning resource for aboriginal and torres strait islander communities

2 Commonwealth of Australia [2007] This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced by any process without prior written permission from the Commonwealth. Requests and inquiries concerning reproduction and rights should be addressed to the Commonwealth Copyright Administration, Attorney-General s Department, Robert Garran Offices, National Circuit, Barton ACT 2600 or posted at ISBN

3 contents sections Background Acknowledgements How to use the Dementia Learning Resource for Aboriginal and Torres Strait Islander Communities What is the purpose of the Learning Resource? What is the Learning Resource? Who is the target audience of the Learning Resource? What is included in the Learning Resource? How can the resource be used? Who can deliver the education and training? Guidelines for facilitators Before you begin 1. Introductions 1 2. What is culture? What is culture A model of culture Dominant Culture 3 3. Cultural memory 5 4. Legislative Timeline 6 5. Current Aboriginal and Torres Strait Islander Health Information 7 6. Perspectives on Aboriginal and Torres Strait Islander Cultures Cultural Safety Continuum of cultural practice What is cultural safety? Communication Skills What is communication? How do we communicate? The brain story What is the brain and what does it do? Memory Keeping your brain healthy 21 i ii iv vi vi vi 10. Understanding dementia and its impact Dementia is not What is dementia? Who gets dementia? Risk reduction Diagnosis The impact of dementia on person, family and community Factors influencing the experience of dementia Respecting the person and their story Family and community Legal and Financial Planning Ways of communicating with a person who has dementia Communication changes Ways to assist in communicating with people who have dementia Communication techniques Provide activities to maintain a person s ability, dignity and self-worth What is an activity? Why do activities? Kinds of activity Key principles in using activities Planning and providing activities Responding to the individual and their behaviour What is behaviour? Minimising and responding to changed behaviour 68 References 76

4 contents figures, tables and assessment tasks FIGURE 2.1 WHAT IS CULTURE? 2 FIGURE 9.1 PROCESS OF MEMORY 19 FIGURE 10.2 MODEL DEPICTING INTERCONNECTION OF PERSON WITH DEMENTIA, FAMILY, SERVICES AND COMMUNITY 33 FIGURE 11.1 RELATIONSHIPS 51 FIGURE 11.2 RELATIONSHIP CHANGES 51 FIGURE 11.3 RELATIONSHIPS MAINTAINED 51 FIGURE 13.1 BEHAVIOUR 59 FIGURE 13.2 CHANGED BEHAVIOUR 63 FIGURE 13.3 MODEL EXPLAINING FACTORS INFLUENCING BEHAVIOUR 63 FIGURE 13.4 STRESS RESPONSE IN A NORMAL ADULT 67 ASSESSMENT TASK 1: CULTURAL CONCEPTS IMPLICATIONS FOR SERVICE DELIVERY 11 ASSESSMENT TASK 2: CULTURAL SAFETY STRATEGIES 14 ASSESSMENT TASK 3: CASE STUDY SIGNS AND SYMPTOMS 25 ASSESSMENT TASK 4: WHAT IS DEMENTIA 33 ASSESSMENT TASK 5: NETWORKS AND SUPPORTS 41 ASSESSMENT TASK 6: THE NEED FOR GOOD COMMUNICATION 51 ASSESSMENT TASK 7: MAINTAINING RELATIONSHIPS 52 ASSESSMENT TASK 8: ACTIVITY PLAN 58 ASSESSMENT TASK 9: IMPACT OF BEHAVIOURS 70 ASSESSMENT TASK 10: TRIGGERS AND RESPONSES 71 FIGURE 13.5 LOWERED STRESS THRESHOLD IN A PERSON WITH DEMENTIA 67 FIGURE 13.6 ENVIRONMENT CHANGED TO ACCOMMODATE LOWERED STRESS THRESHOLD 68 TABLE 9.1 BRAIN LOBES 17 TABLE 10.1 TYPES OF DEMENTIA 26 TABLE 10.2 FACTORS THAT INFLUENCE A PERSON WHO HAS DEMENTIA 34 TABLE 10.3 ASSISTANCE MAY BE REQUIRED 35 TABLE 10.4 EMOTIONAL NEEDS 36 TABLE 10.5: TEN KEY POINTS FOR MAINTAINING A PERSON CENTRED APPROACH 37 TABLE 11.1 COMMUNICATING WITH A PERSON WITH DEMENTIA 48 TABLE 13.1 FACTORS INFLUENCING BEHAVIOURS 64 TABLE 13.2 PERSON, INTERACTION, ENVIRONMENT 66 TABLE 13.3 INVESTIGATE, ACTION, REVIEW 66 TABLE 13.4 BEHAVIOUR CAUSES AND MANAGEMENT STRATEGIES 72

5 i background Dementia is increasingly being acknowledged as an issue for Aboriginal and Torres Strait Islander populations. Aboriginal and Torres Strait Islander people have for some time been recognised as being at risk of traumatic dementia (Acquired Brain Injury), vascular dementia, and alcohol related dementia at a younger age. However, as a consequence of a health transition that is now occurring, life expectancy of Aboriginal and Torres Strait Islander populations is increasing and more people will be at risk of other forms of degenerative dementia. Dementia places a burden on Communities, families, carers and services and it is imperative that Aboriginal and Torres Strait Islander people are equipped with the knowledge and skills to understand dementia and minimise its impact. The Dementia Learning Resource for Aboriginal and Torres Strait Islander Communities aims to contribute to building that capacity. The current resource builds on the development of two earlier initiatives: 1. Meet Dementia The Bad Hawk that Steals In 1993, The Aboriginal Drug and Alcohol Council (SA) Inc and Alzheimer s Australia SA Inc commissioned a story book called Meet Dementia The Bad Hawk that Steals, the first dementia specific resource for Aboriginal and Torres Strait Islander people. 2. Dementia Training for Indigenous Communities In 1997, funding was received from the Australian Government through the Department of Health and Ageing to develop a culturally specific training resource for Aboriginal and Torres Strait Islander health and community workers. The resource Dementia Training for Indigenous Communities aimed to equip Aboriginal and Torres Strait Islander health and community workers with the appropriate skills and information to support Aboriginal and Torres Strait Islander people with dementia and their carers. In 2004, the Australian Government, through the Department of Health and Ageing, funded Alzheimer s Australia to review the Dementia Training for Indigenous Communities resource. The new resource, titled Dementia Learning Resource for Aboriginal and Torres Strait Islander Communities, was set a challenging agenda to support community development through a range of awareness raising, education and training programs on dementia address the learning and development needs of multiple target groups include a component to enable the development of cultural understanding of those working with Aboriginal and Torres Strait Islander people align the worker training content to Nationally Recognised Training units of competency. The inclusion of these aspects has ensured a powerful resource that is relevant to Aboriginal and Torres Strait Islander people throughout Australia. i

6 ii acknowledgements Many people have contributed to the development of the Dementia Learning Resource for Aboriginal and Torres Strait Islander Communities. Alzheimer s Australia and the Project Team lead by Alzheimer s Australia SA Inc. wish to thank all involved in the review and development of the materials in this Dementia Learning Resource for Aboriginal and Torres Strait Islander Communities. We thank Maggie Cecchin, Alzheimer s Australia SA Inc.and Jen Hamer and Joanne Willmott, Relationships Australia South Australia who wrote the content of this Learning Resource. Special acknowledgement of their commitment and expertise goes to the members of the Project Team, Stakeholder Review Team and National Reference Group. In particular, we extend our appreciation to all who participated in the national trials of the revised materials in several sites across Australia. We acknowledge with gratitude the wisdom and contribution of the Aboriginal and Torres Strait Islander members of the National Reference Group in ensuring that this resource is culturally appropriate in content and tone. A special note about the Artist The Artist, Shane Pilot Born: Perth, Western Australia Mother: Christine Egan, Ngarrindjeri (South Australia) Father: Thomas Pilot, Darnley Island (Erub) Torres Strait Shane now lives in Adelaide, after moving from Cairns (QLD) and works with the Aboriginal Health Council of SA as an Information Officer. Shane says My pictures are about both Aboriginal and Torres Strait cultures and trying to put the two together as this is who I am. The style is contemporary, non-clan-specific with aspects of traditional style. I started painting in the 1990s but my passion grew after travelling around and seeing all the different art forms within the Indigenous community. The Brain painting consists of the Kuquam (Hibiscus flowers). The Kuquam represents growth and decay of most flowers which can also be transferred to the brain as the brain also grows and slowly decays with memory loss and dementia. The dots represent how active the brain can be with all the processing. The stem represents the journey from brain to body.. We also wish to thank the many others have contributed information, feedback, advice and administrative support during the Project. Final approval of the Dementia Learning Resource for Aboriginal and Torres Strait Islander Communities was given by members of the National Reference Group in March Members unanimously agreed that this Resource will be welcomed by Aboriginal and Torres Strait Islander people make a major contribution to raising awareness about dementia and building capacity in Aboriginal and Torres Strait Islander Communities. National Reference Group Members present at the meeting were Dorothy Burton, Maggie Cecchin, Venessa Curnow, Marion Davidson, Sheree Freeburn, Jen Hamer, Geoff Hawkins, Marilyn Inglis, Coralie Ober, Helen O Brien, Jeanette Robinson, Ruth Russell, Maxine Turner, May Turner, Byron Wright, Bess Yarram. ii

7 how to use the dementia learning resource for aboriginal and torres strait islander communities What is the purpose of the Learning Resource? The Learning Resource was designed to contribute to reducing the risks of dementia and improving quality of services and care provided to Aboriginal and Torres Strait Islander people who have dementia. It aims to do this by increasing awareness in Aboriginal and Torres Strait Islander Communities about dementia and needs of people affected by dementia empowering Aboriginal and Torres Strait Islander people to access available services and supports enabling workers, family carers and Communities to gain knowledge about how dementia affects people and how to develop responses and strategies to reduce the risks and impact of dementia developing cultural awareness and skills of those who work with Aboriginal and Torres Strait Islander people on issues related to dementia. What is the Learning Resource? The Learning Resource is a kit of resources and materials designed to be used for preparation and delivery of awareness raising and information sessions and education and training programs. It is deliberately not prescriptive in presentation to enable preparation of customised education, training and information dissemination to address the multiple cultural and dementia related learning needs of a broad range of multigenerational audiences in diverse settings throughout Australia. The Learning Resource was developed to enable education and training and information dissemination to be delivered flexibly in terms of purpose, length and place, and be tailored to meet the needs of diverse learning groups support the attainment of two units of competency in the National Training framework, i.e, CHCAC15A Provide care support which is responsive to the specific nature of dementia and HLTHIR404B Work effectively with Aboriginal and Torres Strait Islander people. Who is the target audience of the Learning Resource? The resource has been developed for use by educators, trainers and others (hereafter called facilitators as the inclusive nature of the usage of the Resource lends itself better to use of the term facilitator ) involved with the provision of Community education and development programs and/or worker training. The target audiences for the education and training are multigenerational and include: Elders Families Communities Community services Aboriginal and Torres Strait Islander health professionals, (e.g. alcohol and drug, aged care, disability, mental health and social and emotional wellbeing) Other health professionals working in Aboriginal and Torres Strait Islander Communities Others (e.g. schools, justice and emergency services). What is included in the Learning Resource? A publication entitled Facilitator s Guide which provides content and materials to support your preparation and delivery of information, education and training sessions and programs. A Flip Chart and PowerPoint presentation entitled Your Brain and Dementia. These are intended to be used for introductory sessions. The flip chart is suggested for use with small groups where it is preferable to sit and talk informally while the PowerPoint presentation can be used with larger groups. Sections nine and ten of the Facilitator s Guide provide the supporting content. The Flip Chart has been prepared with a surface that allows you to make your own additional session notes with a wipe off marker. Two information brochures entitled Your Brain and Memory and Your Brain and Dementia are intended to provide take away information supporting short information/ education sessions. These brochures are supplied electronically in colour and in black and white. The story Meet Dementia: The Bad Hawk that Steals as a PowerPoint presentation to be used only where culturally suitable. It provides information about dementia in a story telling way. A poster with some key points of information that you can use to raise awareness to promote education and training sessions.

8 A folder of participant materials, to be used as they are, or to provide a guide for you to adapt/develop an alternative that is more suited to participants. A set of assessment items, for assessment of competency. The assessment items have been mapped to the two Units of Competency. To reduce barriers to assessment, a number of the assessment items have been incorporated at relevant points throughout the Resource. The items can be used flexibly, e.g. within the training sessions to obtain written or verbal evidence of competence, or as take home items. A workplace assessment is also included. You may use these as exercises for participants who are not undertaking competency training. PowerPoint presentations The presentations are linked to the content of the Facilitator s Guide and content has deliberately been kept at a minimum and free of images that may not be relevant/ suitable for the diversity of groups using this Learning Resource. However, a style template is also included which you may use to prepare your own presentations. Slides can also be printed as overhead transparencies. CD-Rom containing all of the materials for you to print them for your sessions and to develop customised resources. Evaluation feedback form which we ask you to complete and return to support future review and improvement of the Learning Resource. How can the resource be used? The Learning Resource may be used in multiple ways to support programmed awareness raising and capacity building. The Facilitator s Guide underpins the Learning Resource. It is structured into thirteen sections. Each section provides content material, aims and learning outcomes, a list of associated materials, exercises and assessment tasks. While the foundation cultural content is to be found is sections one to eight and dementia specific content in sections nine to thirteen, the two areas of learning should be considered holistically not separately. As a facilitator, you are expected to customise and develop the ideas and exercises for use with their local learning groups; integrate cultural content, drawing from local cultural values and practices; and prepare the structure, content and length of information, education and training sessions based on the learning needs and learning style of participants, group size, venue and available/suitable technology for delivery. The Learning Resource can be used in whole or in part as indicated in, but not limited to, the following examples. 1. A short information session about memory and dementia for a small group of Elders prepared from sections nine and ten of the Facilitator s Guide, delivered using the Flip Chart and providing participants with the two brochures. 2. A similar short session for a large group of school children using the Your Brain and Dementia PowerPoint (rather than the Flip Chart). 3. The poster placed in a local centre to raise awareness. 4. A program running for a few hours per week over several weeks, for families of people with dementia, prepared from sections nine to thirteen of the Facilitator s Guide using a selection of participant materials. This program may also use the Flip Chart and a selection of the PowerPoint presentations, the brochures and poster. 5. An introductory workshop on the nature of dementia for workers, supported by section nine of the Facilitator s Guide and selected participant materials and/or the two brochures. 6. A competency based training program for workers running over one day per week for four or five weeks. This program would be based on all of the Facilitator s Guide and use a range of participant materials either as they are (or customised) and the assessment items. Facilitators are required to plan and deliver Nationally Recognised Training according to the requirements of the Australian Quality Training Framework. Units of Competence The resource supports training and assessment for two Units of Competence at Certificate III level. (The units are available from the National Training Information Service website The unit CHCAC15A Provide care support which is responsive to the specific nature of dementia includes three elements. 1. Use communication strategies which take into account the progressive and variable nature of dementia. iv

9 2. Provide appropriate activities to maintain a client s dignity, skills and health at an optimum level. 3. Develop and implement strategies which minimise the impact of challenging behaviours. The unit is incorporated in the (CHC02) Community Service and the (HLT07) Health Training Packages as outlined below. CHC02 Community Service Training Package Compulsory Certificate III in Aged Care Work Certificate III in Aged & Community Care Elective Certificate IV in Aged Care Work Certificate III in Disability Work Certificate IV in Disability Work Certificate IV in Community Service (Lifestyle and Leisure) Diploma of Community Services (Lifestyle and Leisure) Diploma of Community Welfare Work HLT07 Training Package Compulsory Elective Certificate IV in Allied Health Assistance Diploma of Aboriginal and/or Torres Strait Islander Primary Health (Community Care) The unit HLTHIR404B Work effectively with Aboriginal and/or Torres Strait Islander people contains five elements: 1. Reflect awareness of Aboriginal and Torres Strait Islander history and cultures in work practices. 2. Reflect awareness of own and other cultural realities in work practices. 3. Communicate effectively with Aboriginal and Torres Strait Islander People. 4. Reflect cultural safety in workplace and professional relationships. 5. Work in partnership with Aboriginal and Torres Strait Islander people and communities. This unit is incorporated in the (HLT07) Health Training Package as set out below. HLT07 Training Package Compulsory Certificate IV in Nursing Diploma of Nursing Elective Certificate III in Ambulance Communications (Call-taking) Certificate III in Non-Emergency Client Transport Certificate III in Basic Health Care Certificate III in Allied Health Assistance Certificate III in Health Administration Certificate III in Health Support Services Certificate IV in Ambulance Communications Certificate IV in Health Care (Ambulance) Certificate IV in Allied Health Assistance Certificate IV in Anaesthetic Technology Certificate IV in Audiometric Assessment Certificate IV in Dental Assisting Certificate IV in Medical Practice Assisting Diploma of Paramedical Science (Ambulance) Diploma of Paramedical Science (Anaesthesia) Diploma of Indigenous Environmental Health Advanced Diploma of Paramedic Science (Ambulance) Diploma of Hearing Device Prescription and Evaluation Diploma of Aromatherapy Diploma of Kinesiology Diploma of Remedial Massage Diploma of Reflexology v

10 Assessment Assessment within the National Training Framework is the process of collecting evidence and making judgements about whether the competency has been achieved and confirming that the individual can perform to the standards expected in the workplace. The purpose of assessment is to ascertain that individuals participating in off job training can perform to the standards expected as expressed in the competency standard. Statement of Attainment A Statement of Attainment is issued when a person has been assessed as having fulfilled the requirements for a unit of competence. Only Registered Training Organisations can issue a Statement of Attainment or Qualification that is recognised under the Australian Qualifications Framework. Learners who have undertaken the assessment requirements for the two Units of Competency covered by this Resource are eligible to receive two Statements of Attainment if they complete the assessment for both Units of Competency and are found competent by a Registered Training Organisation. Where this requirement has not been met, a learner may still wish to apply for recognition of prior learning. Recognition of Prior Learning Recognition of prior learning allows a person to received recognition and credit for the knowledge and skills they have, no matter where they were attained. This can include previous study, work experience (both work that is paid and unpaid) and life experience. Who can deliver the education and training? This Learning Resource will be used by education and training providers and others who will adhere to their own standards for facilitator qualifications. Additionally, the Australian Quality Training Framework standards specify requirements for trainers and assessors operating within a Registered Training Organisation. The recommendations included here are intended to support the specific nature of this Learning Resource. This Learning Resource provides for training and development for people who work with Aboriginal and Torres Strait Islander Communities on issues related to dementia. Any training, education or information dissemination delivery of this Resource should always be co-facilitated by an Aboriginal or Torres Strait Islander and non-aboriginal and Torres Strait Islander facilitator in partnership. This is to ensure Aboriginal and Torres Strait Islander perspectives and interpretations are integrated into the delivery, alongside mainstream understandings. Delivery in a partnership also demonstrates the primacy of the Aboriginal and Torres Strait Islander voice in addressing issues of cultural competence and emphasises the responsibility of non-aboriginal and Torres Strait Islanders in gaining cultural competence. The Facilitator s Guild indicates where the content is best delivered by an Aboriginal or Torres Strait Islander facilitator. It is very important to have a member of the local Aboriginal or Torres Strait Islander community present (as facilitator or as a supportive participant) to ensure local issues can be identified and acknowledged. A community Elder may be most appropriate for this role. Guidelines for facilitators Given the range of target groups and learning needs it is important that you first determine how you will use the resource. For example, you may use it to guide the training and assessment of workers to attain the two Units of Competency or you use it to support a Community capacity building program. Before you begin Familiarise yourself with the content of the Learning Resource kit The kit provides the materials and resources and includes suggested additional information sources. Familiarise yourself will each items in the kit. Read the content of the Facilitator s Guide with particular attention to Facilitator notes. As you read consider how you could use each of the items in the kit. Reflect on each of the exercises. Bear in mind that if you have experience in the content areas you will be able to add your personal and professional experience and examples into the discussions. View the PowerPoint presentations and suggested videos. Explore additional resources. vi

11 Make sure you have read through what you are going to deliver and researched any background information you will need in relation to local Aboriginal and Torres Strait Islander cultures. Get to know the group and community you will be delivering to Cultural values and practices of Aboriginal and Torres Strait Islander peoples differ throughout Australia, therefore, it is essential that you get to know the group or Community you will be delivering to. Find out the original Custodians of the Country / Land. Invite an Elder to be present at the training to support accurate exploration and understanding of local issues. Identify the learning requirements and learning styles of participants (for workers this would also include the organisational culture within which they are working). Remember that the learning group is a resource to be utilised. Creating partnerships between participants who can share their current skills and knowledge is a core part of the program. Size and composition of the group It does not really matter what size the group is, however, the size will influence what and how you deliver. For example an information session with little interaction may be provided for a large group while a small group will enable a more interactive learning approach with greater depth and customisation of content. Notice which sessions may be sensitive for gender issues. Be prepared to check with the group about whether men and women should be in separate groups to discuss certain issues. Prepare your session(s) Determine the aims and learning outcomes, content, duration and schedule for the session(s). Don t forget to allow time for administration (e.g. enrolment, safety information etc). Develop your session plan, or trainer notes including the materials and resources you will use. Plan the time you can allocate to each exercise. Select materials from the kit or prepare customised materials. (It is not intended that you necessarily use the materials as they are included in the resource. The materials provide you with a range of options for your selection, or act as models or examples to guide your preparation of materials that will be appropriate for the session and participants). Materials and equipment Prepare materials, including handouts, exercises, attendance records and evaluation forms. Ensure resources (e.g. videos) and equipment (e.g. computer/ data projector, overhead projector, Video/DVD player, whiteboard and pens, butcher s paper etc) are available. Be familiar with local legislation and issues In addition to cultural values and practices that differ throughout Australia, laws and services will differ in each State and Territory. Venue, resources available Know where the session will take place, including what teaching technology is available. vii