Eliminate Alzheimer Disease - The Savvy Caregiver Programme

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1 20th Alzheimer Europe Conference Luxembourg 2010 Facing dementia together The Savvy Caregiver Programme: an intervention on family members of Alzheimer patients. Luisa Bartorelli, Silvia Ragni, Stephanie Levi, Franco Giubilei Alzheimer Uniti Onlus Uniti nella lotta contro l Alzheimer

2 700,000 Italians with Alzheimer s

3 The family is the cornerstone of care 700,000 families The tendency is to care for the person with Alzheimer s disease at home

4 SOCIAL AND ECONOMIC IMPACT OF ALZHEIMER DISEASE DIRECT COSTS Doctors visits, drugs, tests, hospital stays Formal assistance (home care, day care centers) Nursing homes Support for the families EURO 61,000 /Year NH ~ 28% TOTAL COST FOR EACH PATIENT Family ~ 72% DIRECT COSTS Some payments for medical and social care. Other costs including home assistants; house adaptation. INDIRECT COSTS Loss of income due to inability to work (patient and family member) Informal assistance (relatives, friends, volunteers) Psychological and physical suffering by caregiver.

payments for medical and social care. Other costs including home assistants; house adaptation.

5 Dementia creates a stressful situation for the entire family. Increases the risk of conflict in the home Increases the risk of depression Increases the need to medicate Tognetti A., Bartorelli L., Malattia di Alzheimer e analisi dei bisogni del caregiver 2000; Giorn. Geront.. Vol. 48;

depression Increases the need to medicate Tognetti A., Bartorelli L.

6 Who is the

7 THE CAREGIVER WOMEN 76.6% no change HOUSEWIVES AND PENSIONERS no change IS INFORMED ABOUT THE DISEASE AND HOW TO BE INVOLVED no change HELPS THE PARENT OR SPOUSE FOR 13 HRS/DAY 17 HRS/DAY REQUESTS NURSING HOME 12.5% 40% PREFERS HOME CARE AND DAY CENTRE

8 Relationship between caregivers and elderly patients in six European countries (%) Total N = 5920 Germany N = 1002 Greece N = 1013 Italy N = 990 Poland N = 999 Sweden N = 921 UK N = 995 Son/daughter Spouse/partner Son-in-law/ Daughter-in-law Other Total EUROFAMCARE STUDY G.Lamura1, C. Balducci1, M. G. Melchiorre 1, S. Quattrini1, L. Spazzafumo1, M. Barbagallo2, L. Bartorelli 3, Gianelli M.V : I.N.R.C.A., Dipartimento Ricerche Gerontologiche, Ancona; 2: Università di Palermo; 3: Ospedale S. Eugenio, U.O. di Geriatria, Roma; 4: Università di Genova. Giorn.Geront.2005

9 30.4 Total 100.0 100.0 100.0 100.0 100.0 100.0 100.0 EUROFAMCARE STUDY - 2004 G.Lamura1, C. Balducci1, M. G. Melchiorre 1, S. Quattrini1, L. Spazzafumo1, M. Barbagallo2, L.

9 Family members thrust into the role of caregiver, without understanding or training.

10 Impact on the caregiver VISUAL-SPATIAL PROBLEMS LANGUAGE PROBLEMS APRAXIA NEED FOR CONTINUED SUPERVISION DIFFICULTY COMMUNICATING INCREASED BURDEN ON ASSISTANTS LOSS OF RECOGNITION IDENTITY CRISIS PERSONALITY CHANGE SENSE OF ESTRANGEMENT

COMMUNICATING INCREASED BURDEN ON ASSISTANTS LOSS OF

11 When the burden becomes unbearable

13 Caregiver s burden

14 TRAINING FOR THE CAREGIVER FOR THE VOLUNTARY HELPERS FOR THE FAMILY ASSISTANTS FOR THE PROFESSIONALS

15 TO KNOW TO KNOW WHAT TO DO TO KNOW HOW TO BE

16 Gruppi di sostegno The caregiver should be part of a network, a chain of help.

20 THE CHALLENGE Verify if the anglo-saxon model can be used also in the mediterranean culture.

21 THE SAVVY CAREGIVER (savvy, an unusual and deliberately chosen adjective) The caregiver acquires mastery by: taking control of the situation being capable and trustworthy studying in order to provide better caregiving

22 Specific objectives 1. To evaluate the effectiveness of this proposed training programme on: a) the acquisition of knowledge and ability by caregivers b) the reduction of behavioral disturbances of the patients c) the reduction of caregiver s stress. 2. Provide a manual for the trainers to use in the course and a manual for the caregivers to use in each session.

23 MANUAL FOR THE TRAINER Information about the task of the trainer Workshop objectives Caregiving targets Supply slides and handouts Suggest exercises and homework Guide the management of the group Suggest strategies

24 THE ICONS The trainer speaks for 30 minutes including taking questions Pratical work Brief intervention by leader Media resources Homework

25 MANUAL FOR THE CAREGIVER Introduction to dementia Effects of dementia on feelings The caregiver in control The goal of caregiving Estimating the patient s abilities Providing practical help: the basics of caregiving. Managing daily care and complex behaviour Strenghtening the family as a resource Exercise book for homework

28 Parallel Journey of Transformation For the caregiver Learning strategies - detachment & management. Learning about oneself to better understand the family dynamics For the trainer Acquire strategies Process of growth Learning how to find other resourses.

29 Design of the Study A controlled multi-centered study Sample: familial caregivers of people with Alzheimer disease (NINCDS-ADRDA criteria), in groups of 10 to 15 caregivers, recruited from dementia centres Training team: a geriatrician or neurologist a psychologist Intervention: weekly meeting (2 hours) for 6 weeks for the training of caregivers Control group: caregivers of people affected by Alzheimer disease who do not do this course matched for: Age Education of the caregiver MMSE of patients Level of NPI

30 Methodology Evaluation MMSE of the patient NPI (12 items) of the patient NPI stress of the caregiver CES-D of the caregiver Self-evaluation questionnaire for caregiver Time frame for the evaluation T0: One week before the start of the course T1: One week after the end of the course T2: 60 days after the end of the course

31 Data from the centres involved in study Participated (n=43) (mean age ± SD) Control Group (n=31) (mean age ± SD) 79.1 ± ± 7.7 ns Age - patient Education - patient 8.79 ± ± 4.9 ns Gender (m) - patient 22 (52%) 12 (38%) ns Age - caregiver ± ± 13.7 ns Education - caregiver 12.4 ± ± 3.5 ns Gender (f) - caregiver 81.4% 80.6% ns MMSE 13.3 ± ± 7.2 ns NPI (12 items) 29.4 ± ± 14.2 ns NPI stress 14.1 ± ± 5.5 P=0.01 CES-D 19.6 ± ± 8.7 ns Family assistents 41.9% 35.5% ns Family assistents (hours) 14.7 ± ± 9.3 ns

32 T 0 T 1 T 2

33 P=0.001; ANOVA * * T0 vs T1, P=0.001 T0 vs T2, P=0.03 T 0 T 1 T 2

34 NPI items at the start P=0.002 P=0.039 pazienti controlli appetito sonno attività motoria irritabilità disinibizione apatia euforia ansia depressione agitazione allucinazioni deliri

35 NPI items 4 Gruppo controllo deliri allucinazioni punteggio NPI agitazione depressione ansia euforia apatia disinibizione irritabilità Agitazione, P=0.025 Apatia, P=0.038 Irritabilità, P= valutazioni attività motoria sonno appetito punteggio NPI Gruppo sperimentale 1 2 valutazioni deliri allucinazioni agitazione depressione ansia euforia apatia disinibizione irritabilità attività motoria sonno appetito Deliri, P=0.017 Agitazione, P=0.005 Ansia, P=0.015 Apatia, P=0.001 Disinibizione, P=0.014 Attività motoria, P=0.005

36 Participants T0 vs T1, P=0.001 T0 vs T2, P=0.001 Control Group T0 vs T1, P=0.01 T1 vs T2, P=0.01 T0 vs T2, P=0.001 T 0 T 1 T 2

37 P=0.002; ANOVA * * T0 vs T1, P=0.02 T0 vs T2, P=0.01 T 0 T 1 T 2

38 Caregiver s awareness improvement N.S.; ANOVA valutazioni Participants T0 vs T1, P=0.03 T 0 T 1 T 2

39 Evaluation of the course Homework Manual 41,9 13,9 58,1 86,1 Workshop 44,2 55,8

40 Conclusions 1. The results show that this programme is indeed applicable to our own culture and to our own system of care. 2. The programme reduced the stress of the caregiver to a significant degree and in particular helped reduce their depressive symptoms. 3. The programme also reduced the behaviour disturbances of the patients. In particular: agitation, apathy and aberrant motor activity. 4. The caregiver acquired awareness and mastery from the programme, thus becoming the Savvy Caregiver!

41 Role of our Association in the study Translation of manuals into Italian Choice of the dementia centres and the design of the study with them Coordination of the study Gathering and analysis of data Plan for a second double-blind randomized study (RTC) with 10 centres. The RTC Study already has begun on a sample of 140 caregivers and is supported by the Italian National Health Institute.

42 Grazie e.. arrivederci!

43 Contact information:

Alzheimer s and other related diseases: coping with behavioural disorders in the patient s home

www.peer-review-social-inclusion.eu 2009 Alzheimer s and other related diseases: coping with behavioural disorders in the patient s home Short Report On behalf of the European Commission DG Employment,