Development of a person-centred model of care for people living with dementia in rural residential aged care homes

This study will implement innovative strategies of an individualised care model developed based on the seven principles of a well-established Progressively Lowered Stress Threshold (PLST) framework for non-pharmacological care of dementia. The PLST intervention entails the introduction of individualised care plans based on the following principles of PLST theory: • Introduce consistent individualised routines to compensate for conative losses • Organise small group activities to eliminate overwhelming stimuli • Allow residents to set their own sleep/wake cycle to prevent fatigue. • Plan activities based on past experiences and practices taking into account present cognitive and functional abilities • Eliminate misleading stimuli that trigger illusions The PLST model recognises that behavioural and psychological symptoms of dementia, such as agitation, are experienced by people with dementia and increased stress is triggered by internal and external environmental factors. These factors will be identified during the assessment phase of this research intervention, and the investigators will work with the residential aged care staff to help them modify the daily routine and implement more flexible, personalised activities of daily living including sleep. Prue Mellor (our Chief Investigator) will provide two one-hour training workshops to all aged care staff, on the theory and delivery of the PLST model and the use of the measurement tools to assess behaviours for residents living with dementia. Registered Nurses will attend an extra one-hour session of training. Prue Mellor (RN, MNg (Geront), MNg (NPrac), MACN) is a clinical nurse specialist (gerontic and neurocognitive disorders) who is very experienced in delivering training in personalised aged care. The PLST model underpins her practice as a nurse specialist in dementia care for residential aged care facilities including Indigenous organisations, multipurpose organisations, Dementia Support Groups, and her own company - Age Concern Pty Ltd. She assists organisations to implement person-centred care practices that improves outcomes and meets accreditation requirements. An equal amount of her time is spent in consultations with organisations, assisting them to develop planned, workable nursing strategies for residents with negative behaviours or responses to care. In this study, Prue Mellor will prepare/develop a co-designed personalised care and care plan for each resident living with dementia participant. All staff will be involved by assisting with the development of PLST-based personalised care plans through informing the investigators about previously observed or known needs and demands for care of the individual residents, and by implementing innovative personalised care plans during the intervention. The prepared, co-designed personalised care plans will be the guidelines for daily care of the resident participants during the research intervention period (n = 8 weeks), and during the 1-and 3-months post-intervention follow up periods. The aged care facility is expected to carry on with the personalised care plans beyond the research intervention period; with constant monitoring and updating of the care plans as necessary. Senior management of the aged care facility will appoint two staff (one registered nurse and one carer) to act as change champions during the course of the intervention. The champions will be trained in the process to ensure sustainability. All staff members on duty will be responsible for observing and recording the residents’ behaviour on each shift. The study also aims to measure sleep patterns of participating residents with dementia over five continuous days, with the main goal to investigate the quality of their sleep. Sleep will be measured using Actigraphy ACTi watches at baseline (0 weeks), and at 4 and 8 weeks after the introduction of the PLST intervention. ACTi watches will be fitted on the wrists of participating residents living with dementia to record the sleep patterns. Data from the sleep study will be incorporated into individualised care plans for those residents, predictably resulting in an improved sleep quality or wellbeing. This research will also expand the PLST-based personalised care model intervention, by incorporating individualised preferred music/arts and movement programs to co-design a PLST plus music/arts and movement personalised care intervention. The investigators hypothesise that these co-designed PLST-based (without and with integrated individualised preferred music/arts activities) personalised care interventions will result in a low stress organisational environment and a positive workplace culture; thus leading to improved residents with dementia outcomes such as reduced agitation level, better quality sleep and overall wellbeing, reduced carers’ stress, and a positive change in the workplace culture. The music and arts/movement activities to be applied will be personalised and dependent on the participants’ preferences, and their appropriateness to the participants’ capability, participation and response. They can take the forms of music that may involve (1) past preferred music that will be individualised for listening by the participants with dementia and (2) group music and movement/dance, disability arts and creative aging program/s, visual arts mediums, storytelling, basketry/weaving, painting, drawing, screen-printing, knitting, and etching. Music/Arts preferences will be determined with the assistance of family or caregivers. For all the five aged care facilities, individualised music will form the basis for the music/art and movement intervention. A key aspect to the success of individualised music is identifying specific music preferences including exact song titles and performers. Thus, we will use The Assessment of Personal Music Preference Protocol in the Evidence-Based Guideline of Individualised Music for persons with Dementia© (5th edition; Gerdner L.A., 2013) to assist in the process of music selection for each of the participating residents with dementia. The individualised music will be chosen after discussion with the resident, the resident’s family member or next of kin/legal guardian, and the nursing staff, and produced onto a device for listening at an appropriate time by the resident/s. The guideline presents a detailed description of the intervention. The music/arts and movement activities will be delivered by different musicians/artists whose skills and knowledge best matched the most appropriate and preferred group or individualised music/arts and movement activities by the participants with dementia. Additional criteria for selecting and enlisting the musicians/artists include that they must be living and working locally within the area in which the relevant Aged Care facility to participate in is located. This is to ensure the project benefits the local community, and the intervention will be sustainable after the research project completion. The musicians/artists must also have acquired/will acquire the Criminal Clearance Check for working with the vulnerable people by relevant national or state authorities in Australia. During four weeks in each facility over the course of 2018, the artists will spend 1-hour session for two days each week alongside residents of the aged care facility. Each day will offer a whole group or individual activity, during which all participants will be encouraged to have a hands on experience sharing and playing with their favourite tracks, mixing, dubbing and exploring possibilities supported by the artists. The artists will facilitate each music/art and movement session guiding the conversations and musical explorations, posing questions to stimulate group and individual discussion. Aged care workers will work together with artists to ensure individuals are able to engage as fully as possible. The Music in Dementia Assessment Scales (MIDAS) will be used to assess changes in the wellbeing of a person with dementia participating in music or arts intervention. Prior to the beginning of the study, Participants' Consent Forms, Information sheets and stamped return envelops will be posted to legal guardians of residents living with dementia by aged care administrators. Also, the Participants’ Consent Forms, Information sheets and stamped return envelops will be provided to the aged care senior staff/managers, caregivers and nurses, and the artists. Only those who freely and willingly volunteered to consent to the research participation will participate. The research interventions will sequentially be implemented at five residential aged care facilities in rural South Australia (n = 2) and Queensland (n = 3) over 15 months period. On completion of the assessments and baseline data collection, aged care staff will be trained on the theory and delivery of PLST model and PLST + personalised music/arts activities interventions, and the use of the assessment tools. In addition, an individualised care plan for each resident participant will be co-designed or developed. The resident participants will then be introduced to four (4) weeks of developed personalised care plans involving only PLST-based intervention, follow by additional four (4) weeks of developed PLST + music/arts programs personalised care intervention. The nvestigators will gauge the desired activity and stimulation levels for each participant by using disturbed and dysfunctional behaviour as a measure, and adjust care as necessary. Data analysis will compare pre and post-intervention measures with 1 and 3 months follow up, to evaluate the effectiveness of the new model of care with and without music/arts integrated activities by analysing the impact of the interventions on the residents’ behavioural outcomes and sleep patterns. The analysis will also compare the baseline and post-interventions staff stress inventory data to measure the changes in levels of staff stress before and after the interventions. At least three videoconferencing sessions, of approximately 40 minutes each, of stakeholders (aged care staff and investigators) focus group discussions will be conducted after the PLST + music/arts interventions in each aged care facility. Also, consenting senior aged care staff, and randomly selected nursing/care staff and residents’ families (that freely and voluntarily consent) will participate in a 30-minutes one off one-to-one interview with the investigator. These qualitative data will offer interesting insights into the management and understanding of dementia care, and workplace culture.