Redesigning dementia care An evaluation of small-scale, homelike care environments

1. Redesigning dementia careAn evaluation of small-scale, homelike care environments dr. Hilde Verbeek Research program ‘Innovation in care for the elderly’

2. Acknowledgements Financing: • CAPHRI, Maastricht University • Province of Limburg • MeanderGroep, Orbis, Sevagram, Vivre and De Zorggroep Research team: • Supervisors: Prof. dr. JPH Hamers Prof. dr. GIJM Kempen • Co-supervisors: Dr. E van Rossum Dr. SMG Zwakhalen

3. Today’s objectives • Institutional care for people with dementia • Traditional nursing homes • Innovative care • Small-scale, homelike care environments • PhD research • Evaluation of small-scale, homelike care environments • Process evaluation: experiences of family and nursing staff • Effectiveness study: design and main results • Conclusions and implications

4. Dementia • Symptoms: • Global cognitive and functional decline • Behavioral and psychological symptoms • 1 out of 5 people will develop dementia • Approximately 235.000 people have dementia in the Netherlands at this moment • About 1/3 requires institutional nursing care

5. Traditional nursing homes • Originally based on ‘medical model of care’: • Hospital-like, large wards, long corridors • Routines of the organization mainly determine daily life

6. Change in care concept • From traditional medical models of care - Emphasis on disability - Focus on pathology Towards • Psychosocial models of care- Quality of life and wellbeing - Autonomy, enabling own life style

7. Small-scale homelike facilities • General characteristics: • Small resident group (6-7) • Familiar, homelike environment • Joint daily household • Integrated tasks nursing staff • Worldwide several similar concepts (Verbeek et al. 2009. Int Psychogeriatr, 21: 252-264)

8. Motivation project • The Netherlands: Strong increase of small-scale, homelike facilities • Stimulated by Dutch government (€80 million program) • Its number has doubled over the past five years • Currently ± 25% small-scale, homelike facilities in institutional dementia care • Hardly any knowledge on effects of small-scale, homelike facilities

9. Research questions • What are experiences with small-scale, homelike facilities? • What are the effects of these facilities on… • …residents’ quality of life and behavior? • …family caregivers’ burden, involvement and satisfaction with care? • …nursing staff’s job satisfaction and motivation?

10. Experiences • In-depth interviews with family caregivers and nursing staff (n=24) • Mainly positive experiences: • Personal attention • Involvement of nursing staff • Autonomy in daily life • Important barrier: • Nursing staff work alone during a large part of the day

11. Effect study: design 28 units in small-scale facilities 21 regular wards Screening and selection of residents Baseline measurement Baseline measurement Follow-up at 6 months Follow-up at 6 months Follow-up at 12 months Follow-up at 12 months Verbeek et al. 2009. BMC Geriatr, 9:3

12. Participants • Residents (n=259) • Dementia diagnosis • Matching based on cognitive and functional status to increase comparability of groups at baseline • Family caregivers (n=206) • One main family member providing informal care • Nursing staff (n=305) • All nursing staff (i.e. aids, certified assistants and registred nurses) working on a permanent basis

13. Residents Characteristics and primary outcomes: quality of life and behavior

14. Residents’ characteristics Matching successful

15. Quality of life • No effect on total quality of life • Differences on only two subscales • Residents in small-scale living facilities had more to do but also showed more negative affect

16. Behavior • No effect on total neuropsychiatric symptoms • Residents in small-scale facilities display more physically non-aggressive behavior after 12 months

17. Family caregivers Primary outcomes:Cargiver burden, involvement and satisfaction with care

18. Caregiver burden • Significant group effect on caregiver burden • Family caregivers in small-scale facilities experience less burden • Differences are present at baseline and remain stable over time

19. Involvement and satisfaction with care • No effects for family involvement with care • Frequency and length of visits • Number of activities during visit • Group effect for satisfaction with nursing staff • Family caregivers in small-scale facilities are more satisfied with nursing staff contact • No effects on satisfaction with resident contact

20. Nursing staff Primary outcomes: job satisfaction and motivation

21. Job satisfaction and motivation • No effects for job satisfaction and job motivation in total group of participants • No differences in mean scores at all measurements Job satisfaction Job motivation

22. Conclusion • Unable to demonstrate convincing effects for primary outcome measures (Verbeek et al. 2010. JAMDA, 11: 662-670) • Despite positive experiences, small-scale homelike facilities are not necessarily better care environments • Other options should be carefully considered

23. Implications for practice • Automatic transition towards small-scale homelike care environments is not recommended • Focus should be on care program and scalability • Changing role of nursing staff: adequate training and education of staff is essential • Knowledge and skills • Attitude towards care

24. Societal impact: debate NRC Handelsblad, Dec 2010

25. Implications for research • Small-scale homelike facilities have encouraged development of new care concepts • Which elements are effective, for whom and how are effects exerted? • Which and how can active ingredients be transferred to other dementia care settings as well? • Need for cost-analyses

26. Thank you h.verbeek@maastrichtuniversity.nl

27. Assessment criteria in daily practice • Observation questionnaire (range 18-90) Mean = 42.3Range 36-55 Mean = 67.6Range 60-77 Regular Wards (n=21) Small-scale living (n=28 houses)