Dep. Psychiatry, Dep. Nursing home care, Alzheimer Centrum VU Medical Center, Amsterdam

1. DementelcoachStudy on the effect of telephone coaching on (in)formal caregivers of people with dementia. Dep. Psychiatry, Dep. Nursing home care, Alzheimer Centrum VU Medical Center, Amsterdam The Netherlands L.D. van Mierlo, MSc, F.J.M. Meiland, PhD, R.M. Dröes, PhD Correspondence: rm.droes@vumc.nl

2. Content • Introduction • Methods: sample and design • Preliminary results • Satisfaction with Dementelcoach • Conclusion and Discussion

3. Background in dementia - 1 In 2010 • NL 230.000 • Europe 9.95 million • Worldwide 35.6 million In 2050 • NL 500.000 • Europe 18.65 million • Worldwide 115 million Larsson & Thorslund, 2006 (World Alzheimer Report, 2009; TNO)

4. Background in dementia - 2 • 70% of the people with dementia live at home. • Taking care of people with dementia is a burdensome task. Alzheimer Netherlands (2009): 82% of caregivers is burdened or have a high risk of burden. • Physical and emotional health complaints of the carer is a mean reason of institutionalization. • Amount of places in nursing homes not expected to grow with expected increase of people with dementia. Therefore an increasing demand will be put on informal caregivers. • Adequate support could prevent overburdening. • Problem: Informal carers are not optimally using the existing offer of care and welfare services.

5. Dementelcoach: the intervention • Professional carers offer telephone support to informal caregivers of people with dementia living at home. • Telephone contact occurs once every 2 to 3 weeks for a consecutive period of 20 weeks. Coaching is given for ±45 minutes during each contact. • Professional carers are trained to work as a telephone coach and have experience in the field of dementia.

6. Goal of the study • Evaluate the effects of telecoaching on informal caregivers • Evaluate the effects on professional carers who work as telephone coaches • Evaluation of the intervention as a whole

7. Methods: sample and design Effects on informal caregivers Exp 1 Exp 2 Control max 70 Informal caregivers --------------- Tele Coaching max 70 Informal caregivers -------------- Day centre +Tele coaching max 70 Informal caregivers -------------- Day centre only

8. Method: sample and design Effects on telephone coaches RCT Exp. Control 65 prof. carers ------------------- Regular care + telecoaching 65 prof. carers ------------------- Regular care only (waiting list)

9. Outcome measures • Informal caregivers • Burden (Short Sense of competence) • Health complaints (GHQ-28) • Satisfaction • Professional carers • Worksatisfaction (MAS-GZ) • Self-confidence (Rosenberg self-esteem questionnaire) • Work experience (VVBA)

10. Results

11. Sample of informal caregivers Included : • 54 informal caregivers: 21 Tel.Coach (Exp 1) 25 Tel.Coach + day centre (Exp 2) 8 Day centre only (Control) In both groups (Exp1 & 2): • About 90% is female • Almost half is a partner • Over half of the caregivers live with person with dementia • Mean age is 62 (range 36-85) • 85% > 2 years since diagnosis dementia

12. Results between groups (ANCOVA) Telecoaching (E1) vs Telecoach + Day centre (E2) vs Day centre only (Control) • Significant difference in feelings of competence and mental health complaints between groups. • Increased competence in combined group compared to telecoaching only. Decreased health complaints in combined group compared to day centre only.

13. Sample Professional Carers Total coaches included: • 24 Telecoaches: (11 in exp group, 12 in control = waiting list) In both groups: • All telecoaches are female • Mean age is is 41 (range:22 – 58) • ±75% has been working in psychogeriatrics for over 5 years • Different work occupations; nurse (assistant), psychologist, social worker, casemanagers…

14. Results between groups (ANCOVA) Telecoaching + care as usual (E) vs Care as usual (C) No significant differences between groups in work satisfaction, experience and self confidence.

15. Within group analysis (Wilcoxon) • Both groups show a (sig.) decrease in work experience • Only control group shows a decrease in work satisfaction.

16. Satisfaction with Dementelcoach • Listening ability of coaches. “It is possible to tell my story.” “You can really open up to them, that brings relief.” “I can tell my coach about things I can’t share with anyone else.” • Time of care is flexible.“You can decide when telephone appointments are made, at times that are most convenient for you!” • Acknowledgement of problems, understanding of your situation.“The feeling of being on your own gets acknowledged.” • Support and positive feedback. “It’s nice that they give you pointers on how to handle certain situations.” “It gives me a secure feeling… knowing that I am doing things right as a caregiver”

17. Satisfaction with Dementelcoach 8,3

18. Conclusions Results show: • More competence in caregivers receiving telecoaching + day centre care compared to caregivers receiving telecoaching only. • Less mental health complaints in caregivers receiving telecoaching + a day centre care compared to caregivers receiving day centre care only. • High satisfaction of caregivers with telecoaching intervention. • No difference between groups of professional carers in work satisfaction, experience or self confidence. • Possible positive influence of performing as telecoach on measure of work satisfaction.

19. Thank you for your attention! Any questions? Contact: l.vanmierlo@vumc.nl rm.droes@vumc.nl

20. Conflict of Interest DisclosureLisa van Mierlo, MSc Has no real or apparent conflicts of interest to report.