Drs. Bart Hattink Dr. Franka Meiland Drs. Carlijn Campman Dr. Jan Rietsema Prof. dr. Margriet Sitskoorn Prof. dr. Rose-Marie Dröes - PDF

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Drs. Bart Hattink Dr. Franka Meiland Drs. Carlijn Campman Dr. Jan Rietsema Prof. dr. Margriet Sitskoorn Prof. dr. Rose-Marie Dröes Dept. of Psychiatry / General Practice & Elderly Care Medicine Amsterdam

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Drs. Bart Hattink Dr. Franka Meiland Drs. Carlijn Campman Dr. Jan Rietsema Prof. dr. Margriet Sitskoorn Prof. dr. Rose-Marie Dröes Dept. of Psychiatry / General Practice & Elderly Care Medicine Amsterdam Center on Aging Alzheimer center VUmc Amsterdam 23rd Annual Conference October 12, Malta Background Future: Large increase in dementia prevalence High care costs 70% of the people with dementia lives at home dependent on informal care. 82% of informal carers feel burdened, 20% feel overburdened (World Alzheimer day report 2011, Alzheimer Nederland) Background Overburdening: Caregiver Stress (Shulz & Sherwood, 2008) Declining physical health (von Känel et al, 2008) Social isolation (Brodaty & Hadzy-Pavlovic, 1990) Overburdening of the informal carer main reason for eventual institutionalization Background Carer s needs: Carers desire more insight in and understanding about the behaviour of the person they care for (van der Roest et al, 2009) Insight and understanding will lead to more empathy for another s situation (Lamm et al, 2007) - Essential for the ability to offer good care (Neumann et al, 2009) - Reduces stress and negative emotions associated with caring (Lamm et al, 2007) - Increases social support - Reduces cognitive decline in person with dementia (Norton et al, 2010) Background - Virtual Dementia Tour (Second Wind Dreams, 2002) Mainly low-tech simulation of functional agerelated decline. Results impressive nonetheless. (Beville, 2002) Humbling Background AGNES suit (MIT, 2011) GERT suit (Moll, 2011) Functional physical decline Mainly intended for designers & interior/urban planners Into D mentia project Main aim: to develop an integral experience of dementia Two different parts: 1. Mobile simulation, consisting of 3 stages: Intake, Simulator and Follow-up. 2. Group Training of a half day, coached by an expert. Experiences are shared and discussed with other participants, and important considerations are given to use knowledge gained in this experience in daily practice. Development: literature Literature review - articles containing quotes of people with dementia about their experience of dementia. These were categorized and discussed: Discussion 4 focusgroups -2 with people with dementia (N=19) -2 with informal carers (N=11) Online questionnaire for professionals (N=33) In-depth interviews with couples (N=3) The simulator Video link Intended effects Visit ID More understanding & empathy a. More social support b. Less negative emotions & stress c. Increase wellbeing Lower experienced burden Possible to live at home longer research One group pretest-posttest design (professional & informal carers) Baseline measurement & posttest-measurement 2 months later Outcome measures: - Empathy - Attitudes towards dementia - Degree of emotion-oriented care - Feelings of competence - Style of caregiving - Coping Semi-structured interview after the half-day training (by phone) - Usefulness, userfriendliness and overall experience of Into D mentia, and an additional empathy questionnaire. Results professionals 23 out of 23 professionals indicated: Into D mentia is useful Into D mentia gives a good impression of the daily life of people with dementia Into D mentia has given me extra insight Into D mentia is something to consider every day Results informal carers 9 out of 9 informal carers indicated: Into D mentia is useful Into D mentia gives a good impression of the daily life of people with dementia 8 out of 9 informal carers indicated: Into D mentia has given me extra insight First pilot results Experiences of professional caregivers I use examples [from ID] to clarify things to my coworkers I often think back to this experience when dealing with people Experiences of informal carers It s an eye-opener, it shows you how people see you, how you communicate Now I can offer better, calmer care First pilot results Results on impact evaluation A positive, significant result (Z=-1,97; p=.05) was found on the Knowledge of the person subscale in the emotionoriented care questionnaire. No significant differences in other outcome measures (empathy, feelings of competence, coping styles, work satisfaction and overall degree of emotion-oriented care) Preliminary conclusions Both informal carers and professionals indicate that Into D mentia is a very useful and user-friendly tool for carer training, to give them insight and understanding in the life and experiences of people with dementia, and it can help them offer better, more empathic care. Into D mentia leads to better understanding of the person with dementia s life story. No significant differences on other outcomes such as empathy. Discussion Limitations: The current research was a pilot research, with a limited number of participants and insufficient power for conclusions. Future research: The current results are positive and indicate that a large scale trial among potential Into D mentia users could be useful. Thank you for your attention. Contact:
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