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Effects of an individualized care model on aggressive behaviour among people with dementia

Research project Aggressive behavior (AB) can decrease the quality of life among people with dementia and is often difficult to handle for families and caregivers. AB may also be experienced as a burden and cause feelings of powerlessness among caregivers. The overall aim of this project is to evaluate the effects of an individualized care model focused on AB among residents with dementia and their caregivers.

The study is intended to be implemented in ten group homes for people with dementia in northern Sweden. The intervention consists of a modification of the so-called Newcastle-model, a form of person-centered care that currently recommended in the National Guidelines for Care in Cases of Dementia. The project is expected to answer a variety of research questions and at the moment there are up to ten different aims to be studied. The study is expected to increase awareness among health professionals about the underlying causes of AB. A better understanding of dementia and behavioral changes are expected to change caregivers' attitudes and result in an improved management of AB. Reduced frustration and anxiety among caregivers is expected to reduce staff turnover and thus reduce personnel costs and improve the quality of life for persons with dementia. In addition, the study is expected to reduce costs, such as use of psychotropic drugs, staff turnover and absenteeism, and thus be cost effective.

Head of project

Project overview

Project period:

2008-01-01 2012-12-31


Äldrecentrum Västerbotten, 2009: SEK 30,000
Erik och Anne-Marie Detlofs stiftelse, 2008: SEK 25,000
Alzheimersfonden, 2010: SEK 82,000
Stiftelsen Demensfonden, 2012: SEK 40,000

Participating departments and units at Umeå University

Department of Nursing

Research area

Ageing research, Public health and health care science

Project description

A dementia disease is a syndrome indicating a brain damage, which leads to decline in cognitive functions. The disease can lead to complications referred to as Behavioural and Psychological Symptoms of Dementia (BPSD). Aggression, agitation, biting, screaming, hallucinations and wandering are some examples of symptoms. BDSD occur in up to 80-93 % of people with dementia. BPSD can increase the cost of care and also diminish the quality of life for both patients and caregivers.
BPSD is found to be a major risk of increased caregiver burden and is different for each BPSD and does not always depend on the frequency and severity. Several studies have found that aggression and agitation are the most frequent reported symptom causing severe distress to caregivers.
Aggressive behaviour can diminish quality of life among persons with dementia and is often difficult to manage. Aggressive behaviour can be a burden and cause feelings of rejections and powerlessness among staff.
BPSD is often pharmacological treated, which might have negative side effects for the resident. Non-pharmacological therapies for treatment of BPSD are, for example, behavioural therapy, aromatherapy, bright light therapy, exercise, activities and music therapy. Even though the interventions were found to have some effects on aggressive behaviour, there is a lack of studies aimed at evaluating the effects of an individualized care model on aggressive behaviour and its effects on health related quality of life in relation to persons with aggressive behaviour and dementia.

Overall aim
The overall aim of this project is to evaluate the effects of an individualized care model with a focus on aggressive behaviour among residents with dementia living in nursing homes and their caregivers.

Project description
Participants and setting
The study will be conducted in ten group homes for persons with dementia. An inventory will be made to identify ten residents with aggressive behaviour, one from each group home, and include them consecutively in the study. All nursing staff in the ten group homes will be invited to take part in the project.

The intervention consists of a modification of the Newcastle model, a form of person-centred care recommended in the Swedish National Guidelines for Care in Cases of Dementia. Two persons from each group home will be given information and education about: the structured care model, dementia diseases, complications of dementia, and communication and interactions with persons with dementia. The intervention is planned to proceed during a period of three months. The work team around the resident examines how and when aggressive behaviour occurs. They process the information and explanatory ideas are transferred into working hypotheses, in order to understanding and manage the behaviour.

Procedure and data collection
A single subject design will be used where each participant serves as her or his own control. Data is plotted in a staggered graph in which the participants’ behaviour is tracked over time. Data will be collected pre-intervention, at 6 months and at a 12-month follow-up. Data concerning residents’ behaviour will be collected weekly during the whole intervention period. To evaluate nursing staffs’ experiences of the care model, interviews will be conducted.
The study is divided into three phases. In phase A, residents with aggressive behaviour will be assessed every other day over a two-week period. In phase B, the care model is implemented with support from the research group. In phase C, the staff will continue with the model without support from the research group.

Data collection
Resident characteristics, such as age, length of stay, diagnose and drugs prescription will be collected. Cognitive status will be measured by using the Geriatric Rating Scale (GRS). The Multi-Dimensional Dementia Assessment Scale (MDDAS) will be used to measure motor- and ADL function, behavioural and psychiatric symptoms.
Caregiver characteristics, such as demography, educational level, and work experience will be collected. Caregivers’ knowledge relating to care for people with dementia will be measured by a Visual Analogue Scale (VAS).
The frequency and severity of BPSD will be measured by the Neuropsychiatric Inventory (NPI). The instrument has been used in the past on several occasions in studies for evaluating the behavioural symptoms of people with dementia disease and is tested for both validity and reliability.
Quality of life among residents will be measured by the Dementia Quality of Life Instrument (DEMQOL-Proxy). The instrument is comparable to the best available proxy method in mild to moderate dementia and shows promise in severe dementia.
The Management of Aggression in People with Dementia Questionnaire – MAPDAQ will be used to evaluate attitudes of nurse staff regarding the causes of, and best ways of responding to aggressive behaviour. To study whether staff has a reality oriented or a personhood focused approach towards people with dementia, an instrument developed by Normann, et al. will be used.
The Demand-Control-Social Support questionnaire (DCS) will be used to measure nursing staff work environment. The NPI Care Distress Scale (NPI-D), a part of the above mentioned NPI-scale, will be used to measure nursing staff distress related to each BPSD.
Data concerning sick-leave, additional personnel, staff-turnover and use of psychotropic drugs will be collected , possibly by using registry data.
Twenty interviews will be conducted in order to illuminate the staffs' experience of the performed intervention. Interviews with ten relatives are also planned. The interviews will be analysed by qualitative content analysis. Interviews with residents is planned to illuminate the meaning with aggressive behaviour and by analysed by phenomenological hermeneutic analysis.

Statistical analysis
Data will be analysed with parametric and non-parametric methods. Repeated measures will be used to obtain a clear pattern or consistency in the behaviour over time. Multiple and multivariate models will also be used for controlling for factors that might affect the outcome.

Ethical considerations
Ethical approval will be sought at the Ethical Board, Umeå University. Information about the study will be given to the respective head of units for consent to the study's implementation. Staff and supervisors at the various group homes will receive both written and oral information on the project and that data will be kept confidential. Participation in the study is voluntary and can be suspended at any time without indicating any reasons and without consequences. The results will be presented so it will not be possible to derive data to a single individual even though single-subject design is used. Relatives of the residents will be informed about the project, purpose, procedures and length of the intervention. The relatives will also be asked for informed consent for participation in the study.
Significance of this study and clinical implications
This study is expected to increase nursing staff knowledge of underlying causes to aggressive behaviour (AB), which might change their attitudes towards persons with dementia and result in improved management of AB. This is expected to decrease staff turnover and thereby reduce staff costs. Furthermore, it is expected that a decrease in AB will improve the quality of life and the quality of care. The outcome of this study will also form the basis of education and skills for nursing staff in order to contribute to a more secure and better psychosocial environment. Finally, the study is expected to decrease costs for e.g. use of psychotropic drugs and sick leave and in this way be cost effective.
Latest update: 2018-08-20