2019 September 19

1. 2019 September 19 Standard and dementia care for people with low health literacydr. Jennifer van den Broeke (ENIEC board member)

2. Pharos, Dutch Centre of Expertise on Health Disparities • Quality of Care standard 2.0 • Revision to respond to developments, changes and health populations in healthcare since 2013 • Dementia for each otherpractice improvement program • Governmental program to support the field of dementia care • Consortium of Movisie, Pharos, Nivel, Trimbos and Vilans • Sustainable improvement of the quality, effectiveness and accessibility of care and prevention for people with limited health literacy, non-western migrants and refugees. • Reduce existing health disparities between different groups of people.

3. Health disparities People withhigherlevels of educationlive longerand in better health thanpeoplewithlower levels of education

4. Determinants of health • ‘Rainbow model’ byDahlgren & Witehead (1991) • Consitutional factors • Individual lifestyle factors • Socialandsommunitynetworks • General socio-economic, culturalandenvironmentalconditions

5. Health literacy Health Literacy has been defined as the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. (WHO) • DEFINITION

6. Toreadandtowrite • Have knowledge of the human body • Have knowledge of diseases • To plan andtoorganize • Tocalculate • To have the courage toaskquestions • Tounderstandthe health system • SOME EXAMPLES OF SKILLS NEEDED

7. Youneed these skills tostayhealthy. For instance… • Tounderstandwhatyour doctor advieseyou • For the proper uptake of medicine • To make andcometoappointments on time • Toknowwhich health care professional youneedto approach • Tobeabletoaskquestions • To make a goodjudgement of advice on a website • Toknowforwhatsymptomstofindmedical help • Tocompare health care providers • Toknowwhatattributesto a healthy lifestyle • etc.

8. Turn thisaround: Who is responsibleforthequality of advice? Health care professionals. The quality is better… • …whenexplainedclearly • …ifadvice fits thepatients way of life • …byusingwordsthepatientunderstands We need health literateorganizations: A health literate organization is an organization that makes it easy for people to navigate, understand, and use information and services to take care of their health.

9. In the Netherlands 1 in 3 has low health literacy On averagethe Dutch score relatively high… • How manypeople?

11. What is a quality of care standard? • Givesnormsforgood care for persons with dementia andtheirinformalcaregiversand families. • For professionals, fromtheperspective of persons with dementia andinformalcaregiversand families. • Functionaldescription (whatandwhere, nothowanwho) • Alldomains of care (treatment, health andsocial care, living). • Wholepatientjourney (fromthe first feeling thatthere’ssomething wrong untilaftercare).

12. The patientjourney Kick-off Herziening ZSD 29 november 2017

13. Content • 25 recommendations • 12 quality indicators (structure, process and outcome indicators) • Explicit attention to persons with a migration background and young people with dementia

14. Method: AQUA-guideline forthe development of qualitystandards • Together we answered the questions and made conclusions that we transformed into recommendations • Formulation of research questions • Bottlenecks in dementia care in the Netherlands Consensus process with a group of representatives from insurance companies, users and providers of healthcare & support

15. Three examples of recommandations • The right professional at the right moment advises the person with dementia how to cope with the illness • All people with dementia get a point of contact during the whole patient journey • The person with dementia has one integral care/living plan from the perspective of the needs of these persons and their family

16. Three examples of quality indicators • Outcome indicator: percentage of persons with dementia that experience a good quality of life • Structure indicator: percentage of regional networks who have formalised their cooperation en have defined tasks and responsibilities of network partners • Procesindicator: the percentage of persons with dementia who receive casemanagement

17. recommendationshighlighted About: • Signs of dementia • Information on dementia • The standard andpeoplewith low health literacy

18. Signs of dementia • Recommendation 7: • The identification of signs of dementia is aimed at specific characteristics when people are at a young age, have intellectual disabilities, or have migrated to the Netherlands. • Recommendation 6: • When identification of signs of dementia not only alertness for memory problems is needed but also alertness for other signals. The signals should be taken seriously, regardless of whether the person with a possible dementia or his or her informal carer (family, friend) is showing or bringing the signals.

19. Information on dementia Recommendation 5: There is a regional structure from which easily accessible and comprehensible public information and individual information is provided, in a culture-sensitive manner, in various forms of communication, aimed at four groups: persons with dementia and their informal caregivers volunteersprofessionalssociety

20. https://www.youtube.com/watch?v=pbgs4SJ9lvc

21. Dementia care forallpeoplewith dementia andtheirinformalcarers Thankyouforyour attention • J.vandenbroeke@pharos.nl • www.pharos.nl