1. N V A G M a ar t 2 0 1 5 Organization of network care at home for people with dementia is very promising but parts of the care are still risky Geesje Nijhof Coordinating/Specialist Senior Inspector

2. My background Medical doctor, specialised in public health Worked for GGD, MOA, RIVM Now for the Dutch Health Care Inspectorate for six and a half years: The first five years for public health topics with a focus on low SES and ethnic minorities and network inspection. Mainly stimulating inspection. After a reduction of the public health department and a reorganisation I now work for elderly health care inspection wich a focus on calamities.

3. Organisation of elderly health care inspection Two units 1.Monitoring risk 2. Montoring incidents Five projects - Misunderstood behaviour - Mystery Guests - Communication in the care chain - Governance in elderly health care - Dementia networks

4. First unit: monitoring risk Goal Making sure the institutions with high risk levels show an improvement, which increases client saftey in the ‘risk’ institution. How Quality Care Instrument Visit Outcomes Next actions > Minimisation of risk = increased client safety

5. Second unit: Monitoring incidents Goal Making sure unsafe care becomes safe care by asking implementation of improvement measures. How 1. We work with a report system where calamities are reported by institutions and civilians can report as well 2. Calamaties are always researched 3. Civilian reports are researched when the elderly care shows structural shortcomings

6. Operational experiences: dementia networks The inspecorate focuses on vulnerable groups and elderly. Cause and importance Currently: 250.000 people with dementia. This number will double in 2050. Loss in quality of life; an important cause of death More care at home –living, wellbeing, care- less resources Now: 190.000 people living at home with dementia Risks (patient)safety, insufficient care, overload for the caregivers Unknown if dementia networks meet the standards

7. Research question Main research question To what extent do the dementia networks deliver resposible care to people living at home with dementia and to their caregivers? Subquestions To what extent the networks meet standards in the areas of: 1) Organization's network 2) Early Detection 3) Case management 4) Integrated care plans 5) Support caregivers

8. Research method Web based survey, sept/okt 2012 All 85 networks, 100% response rate 12 visits to networks in October of 2012 In which we had conversations with all organisations from the dementia network as well as caregivers.

9. 85 Netwerken dementie in Nederland eind 2012

10. Conclusions 1/2 Organisation: Networks are in progress but not yet sustainable Family doctors need to take on a more profound role in the network Expertise on dementia is insufficiently secured Early detection: Early detection of dementia is a part of elderly care, but there is insufficient attention for care avoiders.

11. Conclusions 2/2 Case management: Present, but further development is needed Care plans: Yet sufficiently developed; no up to date medication list in care plans Caregivers: Engaged in dementia networks and in the preparation of care plans Attention for load capacity and ability in the networks

12. Recommendations National Network of Dementia: Clarify competencies, expertise level and tasks of the case managers Professional associations: Authorize standard dementia care Embedding dementia care Health insurers and municipalities: Link housing policy welfare- care local-regional Multi-year funding Ministry of Health, Welfare and Sport: Continue present course Facilitation agreement umbrella organizations caregivers and municipalities involved

13. Finally Statement by a caregiver: Please keep the person in mind, forget the disease