35.6 Million people with dementia. Huge pharmaceutical effort towards prevention and cure remain elusive. Psychosocial intervention today s forerunner

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1 Dementia care research: how to improve care for today s dementia patients and their families Prof. Dr. Myrra Vernooij- Dassen Radboud Alzheimer Centre Kalorama Founda5on IQ healthcare 35.6 Million people with dementia Huge pharmaceutical effort towards prevention and cure remain elusive Psychosocial intervention today s forerunner 1

2 Psychosocial interventions Aim at improving quality of life and maximizing function in the context of existing deficits. Use of a wide range of approaches including behavior oriented, emotion oriented, cognition oriented, and stimulation oriented approaches Can be carried out by a diversity of health and social care practitioners. (Rabins PV, Blacker D, Rovner BW et al. American Psychiatric Association practice guideline for the treatment of patients with Alzheimer's disease and other dementias. Second edition. Am J Psychiatry 2007; 164 (Suppl):5-56) Evidence Patient centred care Integrated care (Brodaty et al., 2003; Olazaran et al., 2010; Spijker, Vernooij-Dassen et al., 2008; Pinquart, Sorensen, 2006; Grol, Wensing 2005) 2

3 Interdem Sharing results Collaborative articles Joint proposals Joint projects Setting research agenda (JPND, Deltaplan) Interdem website Publications: Methods Dementia topics Authors (Pubmed) Collaboration 3

4 Manifesto Interdem Patient empowerment Theory and methods International perspective (Moniz-Cook E, Vernooij-Dassen M, Woods B, Orrell M. Psychosocial interventions in dementia care research: The INTERDEM manifesto. Aging Ment Health. 2011;3: ) Patient/caregiver empowerment experimental research Befriending (Charlesworth BMJ 2008) Case management (Jansen et al. J Adv Nurs, 2011) Act in case of depression (Leontjevas, Vernooij-Dassen et al Lancet)* Family as collaboration (Eloniemi Sulkava J Am Geriatr Soc 2009) Exercise (Pitkala,JAMA Intern Med 2013)* Socially stimulation group (Pitkala, Am J Geriatr Psychiatry 2011)* 4

5 Patient/caregiver empowerment Reviews Cognitive stimulation (Aguirre et al.,ageing Res Rev 2013)* Cognitive reframing (Vernooij-Dassen et al., Cochrane 2011)* Active involvement caregivers (Spijker, Vernooij-Dassen et al; J Am Geriatr Soc 2008)* Theory: new concepts Patient as partner Reciprocity Social inclusion Palliative care and dementia Technology and robotics (Moyle J Gerontol Nurs, 2013) 5

6 Patient as partner Individualised guidelines (Vickland,Brodaty et al. Int Psychogeriatr, 2012 ) Quality Indicators psychosocial interventions (Vasse, Moniz-Cook, Woods, Vernooij-Dassen et al., Int Psychogeriatr, 2012) Shared decision making Patient part of research development team Reciprocity Need for help (Brodaty et al.,int J Geriatr Psychiatry 2005) Respite care (Jeon, Brodaty et al. J Adv Nurs, 2005; VernooijDassen, Mittelman et al.,int Psychogeriatr 2010) Desire to give (Vernooij-Dassen et al., BMJ 2011) Empowerment (V. Vliet, Gerritsen et al.) 6

7 Social inclusion Social fitness (Donkers, Graff, Vernooij-Dassen et al. ) Befriending (Charlesworth et al., BMJ 2008) Family as collaboration (Eloniemi-Sulkava J Am Geriatr Soc 2009) Methodology: new focus Process analysis Quality indicators Implementation 7

8 Process analysis Treatment fidelity: little information Great variety: % M. Perry et al., Effects of educational interventions on primary dementia care: A systematic review. Int J Geriatr Psychiatry 26, 1 (Jan, 2011). 20. Quality indicator Numerator: Number of people with dementia whose patient file records that diagnosis was discussed with the person with dementia Denominator:Total number of people with dementia at service (Vasse, Moniz-Cook, Olde Rikkert, Cantegreil, Charras, Dorenlot, Franco, Woods, Vernooij-Dassen, Int Psychogeriatrics, 2012) 8

9 Quality indicators Memory clinics (Drašković I, Vernooij-Dassen M, Verhey F, Scheltens P, Rikkert MO. Int J Geriatr Psychiatry 2008;23:119) Psychosocial interventions (Vasse, Moniz-Cook, Olde Rikkert, Cantegreil, Charras, Dorenlot, Franco, Woods,Vernooij-Dassen, Int. Psychogeriatrics, 2012) Collaboration between general practioner and nurse (Perry M, Drašković I, van Achterberg T, van Eijken M, Lucassen P, VernooijDassen M, Olde Rikkert M. J Am Geriatr Soc 2010;58:557-63). Methodology EUROCODE project Workpackage non-pharmacological/ psychosocial interventions Guideline inventory (Vasse, Vernooij-Dassen, Cantegreil, Franco, Dorenlot, Woods. Int J Geriatr Psychiatry, 2011) A RAND-modified Delphi technique to develop a potential set of quality indicators Two expert panels to achieve content and face validity Consensus meeting with third panel on measurability and applicability of the potential set A retrospective cohort study to study the feasibility of using the final set in three dementia care settings in Spain and the Netherlands (Vasse, Moniz-Cook, OldeRikkert, Cantegreil, Charras, Dorenlot, Franco, Woods, Vernooij-Dassen, Int Psychogeriatrics, 2012) 9

IMPACT Aim: To develop optimal strategies for implementing quality indicators to improve the organisation of palliative cancer and dementia care in Europe.

10 IMPACT Aim: To develop optimal strategies for implementing quality indicators to improve the organisation of palliative cancer and dementia care in Europe. Funding: European Commission 7 th Framework programme Duration: 4 years (February February 2015) Work conducted until now: Mapped the organisation of palliative care: interviews Developed quality indicators for the organisation of palliative care Identified national and setting-specific barriers and facilitators Identified strategies to improve the organisation of palliative care 10

11 Future work: Pre-post test to assess the feasibility of the quality indicators Process evaluation Future work: Pre-post test to assess the feasibility of the quality indicators Process evaluation 11

12 Implementation Target group Setting Barriers and facilitators Stakeholders (Grol, et al. Wiley, 2013) IF If the principles of patient partnership, social inclusion and reciprocity are integrated in an intervention to support people with dementia and their carers 12

13 Then focus will change Persons with dementia: from deficits to capacities Carers: from co-victim to capability Professionals: from fragmented care to collaboration Hypothesis Interventions using this emancipatory perspective will improve the quality of life of both persons with dementia and their carers 13

The development of quality indicators to improve psychosocial care in dementia

International Psychogeriatrics (2012), 24:6, 921 930 C International Psychogeriatric Association 2012 doi:10.1017/s1041610211002523 The development of quality indicators to improve psychosocial care in