Reviews indicate that personalized or tailor made interventions are more successful than standardized

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Jean Ramsey
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1 Versorgungsforschung für demenziell erkrankte Menschen Health Services Research for People with Dementia Symposium Bonn Dezember 2008 (World Conference Center Bonn) Plenary Lectures: INDIVIDUALISATION OF CARE Personalized interventions in dementia care Abstract (taken from the Abstract Booklet): Reviews indicate that personalized or tailor made interventions are more successful than standardized interventions. This raises several questions: Why are they more effective? How can their effects be measured? What happens within the blackbox of personalized interventions? The greater effectiveness of personalized interventions might be caused by the better fit between needs for care and care provided as compared to standardized care. However, not all personalized interventions have been found to be effective. Specific elements of personal involvement of the recipient contributed to effectiveness: active involvement of both the person with dementia and the carer and the opportunity to make choices between interventions. Methods to measure effects might not differ from conventional outcomes, or be personalized as well, such as the Goal Attainment Scale (GAS). The latter provides the opportunity for more focused measurement. The blackbox bo of what happens within the intervention e t should be opened ed in a process analysis. a s This is often overlooked in RCT studies. Process analysis should not only register whether the intervention is carried out according to plan, but also what activities are carried out. The first results of process analyses indicate that in the beginning phase normal life issues such as activities rather than specific disease related issues prevail, while in the end of life phase the focus is more on non-verbal and sensory interventions. Knowledge on needs and preferences of interventions for persons with dementia opens new avenues to support persons with dementia and their carers. It also provides insides into the changing world of persons with dementia during the dementia trajectory Myrra Vernooij-Dassen, Prof. Dr., Radboud University Nijmegen Medical Centre, Nursing Home Medicine, Scientific Institute for Quality of Healthcare, Nijmegen Alzheimer Centre, 6500 HB Nijmegen, NL m.vernooij-dassen@iq.umcn.nl

2 Personalized dementia care Prof. dr. Myrra Vernooij-Dassen Radboud University Nijmegen Medical Centre: IQ Healthcare Department of Primary Care Nijmegen Alzheimer Centre Kalorama a afoundation o

4 Effectiveness personalized interventions Personalized or tailor made interventions are more effective than standardized interventions (Brodaty et al., 2003; Smits et a., 2007) Not all personalized interventions are effective

5 Personalized interventions Why are they more effective? How can their effects be measured? What happens within the blackbox of What happens within the blackbox of personalized interventions?

6 Common factors in effective studies Involvement of both the person with dementia and the carer (Smits et al., 2007) Opportunity to make choices between interventions (Spijker et al., 2008) Active involvement of the care recipient (M. Vernooij-Dassen, 2008)

7 Measurement Outcomes (Moniz-Cook et al., 2008) Goal attainment scaling (Rockwood et al., 203)

9 Measurement: blackbox Are intervention carried out according to plan? How are personalized interventions carried out? What are the determinants of success or failure?

11 Process analysis 1 To describe the intervention To check the actual exposure to the intervention ention To describe the experience of those exposed to the intervention (Hulscher et al., 2005)

12 Process analysis 2 To define the nature of person focussed interventions To identify facilitators and obstacles in carrying out the intervention To generate hypotheses for future research

14 Occupational therapy at home Participation in meaningful activities Involvement both patient and carer Dealing with limitations and consequences of dementia Using remaining capacities Aimed at improvement quality of life Graff MJL, Vernooij-Dassen MJF, Zajec J, Olde Rikkert MGM, Hoefnagels WHL, Dekker J. Dementia 2006;5(4):

15 Results Improvement daily functioning Improvement family carers sense of competence (Graff, Vernooij-Dassen et al., BMJ 2006 ) Improvement quality of life of persons with dementia and their family carers (Graff, Vernooij-Dassen et al., J. Gerontol Med Science, 2007) Cost effective (Graff et al., BMJ, 2008)

16 Process analysis using occupational therapists t records Training i in person focused meaningful activities: i i Top five patient: Household chores (making coffee, cooking) n=95 Hobby n=71 Safety and mobility n=45 Use of cognitive aids n=42 Selfcare n=36 Carer: Coping and communication n=45

18 Nursing home intervention: Snoezelen, multi-sensory behavior therapy Positive effects on: duration of eye-contact mean number of smiles (van Weert et al., 2005, 2006)

19 Requirements personalized interventions Active involvement of care recipient Continuous adaptation to changing problems and needs Toolkit of interventions ti (Moniz-Cook, Manthorpe, 2008) Adapted methodology

20 Personalized care Provides the best fit between needs and treatment options Opens new avenues to support persons with dementia and their carers. Provides insights into the changing world of persons with dementia during the dementia trajectory

Outcome measures in dementia care research

Outcome measures in dementia care research Versorgungsforschung für demenziell erkrankte Menschen Health Services Research for People with Dementia Symposium Bonn 11.-12. Dezember 2008 (World Conference Center Bonn) Plenary Lectures: PREVENTION