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Resources for dementia care

EN ABLE Project: Developing and Testing a Toolkit for the Implementation and Evaluation of Person-centred Evidence-based Responses to Need Driven Behaviours (NDB) Associated with Dementia

This project is funded by the Department of Health and Ageing under the Encouraging Best Practice in Residential Aged Care (EBPRAC) grant scheme

What is the project about?
What is the rationale for the EN-ABLE project
What does EN-ABLE project address?
How will we improve quality of life and care for persons with dementia?
Who is involved in the project?
How will we evaluate quality outcomes for residents with NDBs?
How will we assess changes in care practices and staff and family engagement with EN-ABLE?
How will desirable EN-ABLE outcomes be achieved?
What is the projected timeline for the EN-ABLE project?
Who are the project partners?
Who are the project staff?
Related resources

What is the project about?

This Project addresses the target area Behaviour Management in residential aged/dementia care. It supports a key national health priority, "Promoting and Maintaining Good Health" and the Department of Health and Ageing reform agenda "Encouraging Best Practice in Residential Aged Care". Specifically the project is focused on skilling residential care staff to respond in person-centred, evidence-based ways to need-driven behaviours in dementia (NDBs, variously referred to as behavioural and psychological symptoms of dementia (BPSDs) and Unmet Need Behaviours (UNBs) in the literature). The central project goal is to implement and evaluate the EN-ABLE education and training in residential aged/dementia care through an empowering staff support process and by utilising evidence-based practice embedded within the philosophy, principles and practices of Person-Centred Care (PCC) (Kitwood, 1993; 1997)

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What is the rationale for the EN-ABLE project

To understand that:

  • Behaviour occurring in dementia is not always caused by neurological damage;
  • Distraction, restraint and ignoring the behaviour are not the best approaches to behaviour management in dementia;
  • Need-Driven Behaviours (NDBs) can be reduced if the person's needs are identified, acknowledged and met;
  • Person-Centred Care (Kitwood, 1993; 1997) is a proven method of reducing the incidence and severity of NDBs.

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What does the EN-ABLE project address?

EN-ABLE addresses the urgent clinical need in residential care to:

  • improve staff's understanding of NDBs as distressing expressions of unmet physical, psychological and emotional need in persons living with dementia;
  • improve skills in the recognition and assessment of NDBs;
  • increase staff's capacity to respond to NDBs within purposively developed Person-Centred Care environments;
  • reduce the incidence and severity of four commonly occurring NDBs for residents with dementia (agitation, apathy, aggression, risky wandering) to improve negative outcomes associated with these NBDs;
  • improve key quality of life (QoL) and health indicators for residents with dementia who express these NDBs.

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Who is involved in the project?

This is a collaborative project with researchers from UTS, La Trobe University and Queensland University of Technology and six residential aged/dementia care homes, both urban and a rural, from New South Wales, Queensland and Victoria. Participants include 15-20 consented residents with dementia who present with at least one of the four targeted need-driven dementia compromised behaviours (NDBs), namely apathy, aggression, risky wandering, agitation. The residents' close family members will also be involved, as well as all nurses, care and therapy staff. Five volunteer staff from each of the six care homes will participate as EN-ABLE Champions. The EN-ABLE Champions will receive on-site and off-site person-centred care (PCC) training to prepare them for mentoring and facilitating PCC approaches to meet the residents' targeted NDBs. A train-the trainer model will be employed to ensure the EN-ABLE Champions learn how to assist all staff gain the knowledge and skills to meet residents needs, thereby reducing the incidence and severity of NDBs.

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How will we improve quality of life and care for persons with dementia?

The EN-ABLE Champions will be resourced with an evidence-based EN-ABLE Toolkit to assist them in their role. The Toolkit is comprised of the EN-ABLE training workshops, on-site mentoring by skilled PCC Trainers, PCC policies, practice guidelines, flow charts and interactive learning resources that have been developed by the EN-ABLE team and available from the Dementia Training Study Centre (opens an external site) (DTSC), Victoria. The Toolkit resources aim to reduce adverse outcomes for the person with dementia associated with the presence of distressing NDB symptoms, thereby enhancing quality of care and the resident's quality of life. Educating care staff will greatly enhance their ability to practice in a person-centred way. Awarding Dementia Training Study Centre Certificates to EN-ABLE Champions will confirm their valuable contribution, collaboration and professional development in progressing PCC and evidence-based approaches to dementia care.

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How will we evaluate quality outcomes for residents with NDBs?

  1. We will obtain a comprehensive review of each resident's life history, health status and cognitive ability.
    • Agitation: Cohen-Mansfield Agitation Inventory (CMAI)-Long Form
    • Aggression: Rating Scale for Aggressive Behaviour in the Elderly (RAGE)
    • Apathy: Apathy Evaluation Scale (AES)
    • Risky Wandering: The Revised Algase Wandering Scale for Long-term Care (RAWS-LTC)
  2. We will assess the resident's quality of life/well-being with the Dementia Quality of Life (DEMQOL) and the DEMQOL Proxy measures.
  3. Resident daily activities will be assessed by evaluating the resident's planned Diversional/Recreation Therapy Activities against activities they actually engage in each day.
  4. Health status relating to NDBs will include assessing the presence and severity of pain with the Pain in Alzheimer's Disease Scale (PAIN-AD), as well as rates of accidents, injuries, falls and treatments required.
  5. The use of physical and chemical restraint will also be assessed.

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How will we assess changes in care practices and staff and family engagement with EN-ABLE?

Before and after the EN-ABLE intervention program we will collect the nurses, care and therapy staff's demographic information, and assess their application of knowledge in dementia care with the Approaches to Dementia Questionnaire and the Person-Centred Care Assessment Tool (P-CAT). Family carers will provide feedback on their perceptions of changes in care and their opportunity to be involved in their relative/friend's care and in decision-making through the Family Interview Schedule. To identify any changes in care and the care environment we will employ the Person-Centred Environment and Care Assessment Tool (PeCAT), the Environment Audit Tool (EAT) and the Quality of Interactions Schedule (QUIS) before and after the EN-ABLE intervention program. Care mangers and senior executive staff from each home will provide information about their expected and actual involvement and quality outcomes through interview. The EN-ABLE Champions will also complete a focused interview before and after the EN-ABLE intervention program to provide feedback on actual involvement and achievements made against expectations.

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How will desirable EN-ABLE outcomes be achieved?

A range of interactive educational and supportive processes will be facilitated to achieve the EN-ABLE aims. We will:

  1. Promote and support nursing, care and therapy staff's use of evidence-based assessment procedures to identify the multiple reasons for:
    1. resident distress symptoms (NDBs), (specifically anxiety, aggression, apathy, risky wandering)
    2. physical health deterioration; and
    3. reduced well-being in participating residents related to unmet need.
  2. Train and assist nursing, care and therapy staff to plan and initiate evidence-based strategies to:
    1. recognize,
    2. assess and
    3. eliminate, reduce or modify the internal and external risk factors that lead to need-driven expressions of distress, and reduced physical health and well-being in dementia.
  3. Provide and evaluate evidence-based resources for nursing, care and therapy staff that are accessible, congruent with the care context, and transferable to other situations within their scope of work.
  4. Measure and compare outcome data pre/post-implementation for participating residents, nurses, care and therapy staff at site-level, to assess the sustainability of the proposed practice redesign.
  5. Disseminate evidence-based and accessible behaviour assessment and management policies, guidelines, flow-charts and interactive media and implement a series of videotaped experiential workshops aimed at facilitating a person-centred approach to responding to NDBs for care managers and nursing, care and therapy staff.
  6. Award EN-ABLE Champions with a Dementia Training Studies Centre (DTSC) Education Certificate in acknowledgement of their learning, mentorship and contribution to PCC and EN-ABLE development within their site.
  7. Provide regular feedback to the residents, their family/close friends and GPs as a way of engaging them in the evaluation process.

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What is the projected timeline for the EN-ABLE project?

This project consists of seven stages to be conducted over two years. Stages 1 and 2 have been completed and Stage 3 will finish at the end of September, 2009. The project is currently between stages 4 and 5.

Stage 1: Obtain research ethics approval from the three Human Ethics Research Committees at participating Universities and from all the six care homes, have contacts signed off between the three participating universities and set-up the respective the cost centers at the three universities. Conduct training for all Project staff in data collection procedures at an uninvolved care home (completed April 2009)

Stage 2: Meet with care managers and senior staff from each of the six residential care homes, recruit staff, residents and families and obtain informed consent from participants. Obtain pre-EN-ABLE demographic data for residents and administer questionnaires, hold interviews with family members, nurses, care and therapy staff, managers and family members (completed August 2009)

Stage 3: Complete resident NDB data, recreation activity, accidents, injuries and hospitalization data, and prepare for the commencement of the educational training program (completed September 2009)

Stage 4: Commence the En-ABLE education training program with the Champions and supervise on-site train-the-trainer program with all staff. This will be completed for two sites in Queensland and two sites in Victoria in March/April 2010 and will be completed in two NSW sites in April/May 2010.

Stage 5: Administer post-ENABLE outcome measures for residents, staff, family members and evaluate resident NDB assessment and care planning practice, including EN-ABLE outcomes with champions, staff, managers, residents and family members-focus groups. Post EN-ABLE data collection has commenced and will be completed for all six sites by the end of May 2010.

Stage 6: Analyse all data sets, discuss findings and outcomes against Project objectives with staff, managers and families (to be completed end of June 2010)

Stage 7: Planning outcomes/findings dissemination strategy and preparation for publications and news items for different readers. Advertise for aged care staff to attend EN-ABLE workshops (completed July 2010)

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Who are the project partners?

New South Wales

Professor Lynn Chenoweth (Project Leader) UTS: Nursing, Midwifery and Health, University of Technology Sydney and Director and Health Ageing Research Unit, South Eastern Sydney Illawarra Area Health Service, NSW.
Mr Craig Hamer Chief Operations Manager, Illawarra Retirement Trust, Wollongong, NSW
Mr Michael Darragh Area Operations Manager Sydney and ACT, Illawarra Retirement Trust, Wollongong, NSW
Mr Craig Smith Area Operations Manager illawarra, Illawarra Retirement Trust, Wollongong, NSW.
Ms Lynne Yates Manager of William Beach Gardens, Dapto NSW 2530
Ms Kristene Rice General Manager Care Development, Anglican Retirement Villages, Diocese of Sydney, NSW
Mr Gordon Andison Manager of Henry Fulton Nursing Home, Anglican Retirement Villages, Penrith NSW

Queensland

Professor Elizabeth Beattie (Project Partner)
Director, Dementia Collaborative Research Centre: Carers and Consumers Professor of Nursing, School of Nursing and Midwifery, Queensland University of Technology
Ms Joyce Stephan
Regional Manager, Masonic Care Queensland Central and Southern Region
Ms Gillian Stockwell-Smith
Business Directions Manager, Spiritus Residential Aged Care, Queensland

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Victoria

Professor Rhonda Nay (Project Partner)
Director Australian Centre for Evidence Based Aged Care (opens an external site) (ACEBAC),a Trobe University Director TIME for dementia
The Victoria and Tasmania Dementia Training Study Centre)
Dr Sam Scherer Royal Freemasons' Homes of Victoria
Ms Marie McCabe Executive Operations, TLC Aged Care Victoria
Ms Mare Vaughan Research Projects Nurse, Royal Freemasons' Homes of Victoria
Ms Fran Durham Clinical Services Manager, Homestead Lakes, TLC Aged Care
Ms Lynne Pelgrim, Manager/Director of Nursing, Centennial Lodge, Royal Freemasons' Homes of Victoria

Who are the project staff

New South Wales

Project Manager Dr June N Sheriff Health and Ageing Research Unit, South Eastern Sydney Illawarra Area Health Service, NSW
Project Assistant Mr Seong Leang Cheah (Leon) University of Technology Sydney, NSW
Person-Centred Care Trainer Ms Georgene McNeil, Alzheimer's Association Sydney

Queensland

Project Manager Ms Susi Wise, Project Coordinator, Dementia Collaborative Research Centre, Queensland University of Technology
Project Assistants Ms Sara Franklin and Ms Helen Holloway, Dementia Collaborative Research Centre, Queensland University of Technology
Person-Centred Care Trainer Ms Denise Edwards

Victoria

Project Manager Dr Margaret Winbolt, Research Fellow, Australian Centre for Evidence Based Aged Care (ACEBAC)
Project Assistant Ms Carol Chenco ACEBAC
Person-Centred Care Lead Trainer Dr Margaret Winbolt, ACEBAC

Project Statistical Advisor Dr Elaine Fielding

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Related resources

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