Education of caregivers in EuropeAnna Marseglia

Aging Research Center (ARC), Dept. of Neurobiology, Care Sciences and Society, Karolinska Institutet

CNR Institute of Neuroscience-Aging Branch, Padua

SOS Dementia Project

Building a network for patients with cognitive impairment

Padova, 5 Ottobre, 2012

Sede di Padova

Dementia: Definition, Prevalence, and the Future

Clinical syndrome, which affects cognition (memory, attention, language, executive function), interferes with

daily functioning (social and professional).

Modern Diagnosis Revised NINDS-ADRDA criteria and

new Guidelines from National Institute on Aging (NIA) and

Alzheimer’s Assosiation (McKhann et al, 2011)

3 stages of AD (Preclinical, MCI due to AD, Dementia due to AD)

Incorporate biomarkers (e.g., blood and cerebrospinal fluid of

-amyloid and tau)

Caregiver (CRs)

Family members and the close family who are considered the main source of care to patients with dementia (Schulz et al, Am J Geriatr Psychiatry, 2004; 12:240-9)

Caregivers and Caregiver’s Burden

Caregiver’s burden (CRsB)Adverse consequences (physical, psychological, or financial) of caring people with dementia. May occurs when care requires more extra resources than those available (Allegri et al., Neuropsychiatr Dis Treat, 2006; 2:105-10)

2005 EuroCoDe project

European Context

AIMS. To develop an EU Network in dementia’s area in order to develop synergies and collaboration on a European level

INTERVENTION’S AREAS

• Consensual Prevalence Rates• Guidelines on Diagnosis and Treatment• Guidelines on Non-Pharmacological intervention• RFs, Risk Reduction, and Prevention strategies• Socio-economic cost of AD• Inventory of social support system

MEMBERS

Austria, Belgium, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Jersey, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, Turkey, UK Source: http://www.alzheimer-europe.org

2012 ALCOVE Joint-Action project

European Context

AIMS

1. To establish an EU Network to exchange experience and knowledge

2. To inform advice, decision-maker, healthcare professionals, careers, and citizen

CORE QUESTIONS

• Prevalence of Dementia• Early diagnosis of dementia• Care and service (practice in home care, training practice)• Ethics and Dignity

Source: http://www.alcove-project.eu

Formal care (Paid)

CRs Burden: Focus on the Society

Informal care (Un-paid)Include direct-care workers

and trained qualified professionals (e.g. nurses,

physicians, pharmacist, etc)

Include care provides by non-professionals (e.g.

relatives, family, friends, neighbor, etc)

Economic Impact in EuropeEconomic Impact in Europe

Estimated Tot. Cost for DementiaEstimated Tot. Cost for Dementia € € 160 billion160 billion

Estimated Cost for Informal careEstimated Cost for Informal care € € 89 billion89 billion

Estimated Cost for Formal care Estimated Cost for Formal care € 72 € 72 billionbillion

Wimo et al., Int J Geriatr Psychiatry, 2011; 26:825-832

Who is the Caregiver?

CRs Burden: Focus on the Person

Female (75%)

Age ≥55 years

Employed (41%) vs. House-maker (59%)

Live in the same house-hold (56%)

Low educated

Spouses (22%)

Alzheimer’s Association, Alzheimer’s & Dementia, 2012; 8:131-168Toribo-Diaz, Neurologia, 2012; doi:10.1016/j.nrl.2012.03.010.

CRs Burden: Focus on the Individual

What the Caregiver do?

PERSONAL ADLs INSTRUMENTAL ADLs

EMOTIONAL and SOCIAL SUPPORT

MANAGE COGNITIVE/BEHAVIOURS

CHANGES,

Bathing, dressing, feeding, grooming, toileting,

incontinence

Household work, shopping, prepare meal, medication

Mobility, wondering, etc.

Caring a person with dementia leads to Caring a person with dementia leads to considerable changesconsiderable changes overtime overtime

Impact of caregiving

Memory

Memory LossLossOrie

ntatio

Orientatio

nn

Pro

ble

m

Pro

ble

m

solv

ing

solv

ingPersonalitPersonalit

yyBehaviorsBehaviors

Languag

Languag

ee

Executive Executive functionfunction

Attentio

Attentionn

VisuospatiVisuospatialal

JudgmenJudgmen

ttProcessing Processing

speedspeed

Financial

Physical

Psychological

CRs Impact. Physical and Psychological issues

Psychological healthPsychological health

Physical healthPhysical health

Family togetherness

Satisfaction of helping others

Emotional stress

Anxiety

Depression

Metabolic syndrome

Diabetes

Hypertension

Slow wound healing

InfectionsCVD

CRs Impact. Financial changes

8%9%13%

20%

65%

0

20

40

60

80

100

Lateness, Timeoff

Leave ofabsence

Go to part-time Lost workbenefit

Earlyretirement

Work-related changes

Pe

rce

nta

ge

(%)

Alzheimer’s Association, Alzheimer’s & Dementia, 2012; 8:131-168

CRs reports employment, financial security, and income issues

Intervention for Caregivers

Approaches

• Individual vs. Groups

• Educational vs. Support

• Home-based vs. Technology-based

Telephone calls, Internet, Video/Audio tapes,

Computers, Interactive TV

General outcomes

• Increase CRs knowledge, skills, well-being

• Decrease Burden and Depressive symptoms

Intervention for Caregivers

Intervention TypeIntervention Type EfficacyEfficacyPsychoeducational

Provide info, resource, service improving skills to manage Dem.’s symptoms

Burden, Depression, Ability/Knowledge, SWB, Dementia symptoms

Supportive Counseling/Case-management, Supports group

Burden, SWB, Dementia symptoms

Psychotherapy CBT (belief, problem-solving, develop new behavior)

Burden, Depression

Multicomponent Above intervention + Technological approaches

Institutionalization

Pinquart et al., Int Psychogeriatr, 2006; 18:577-95

ABC Demens: a Swedish Multicomponent intervention

1. National course implemented also in working place

2. Based on Swedish National Board on Health Guidelines for dementia care

3. Interactive approaches. Organized by modules including videos and questions expressed in easy language

4. A coach may guide CRs through the course as tutor

5. “Reflektionsfrågor” (Reflection’s questions)

6. Final diploma

ABC Demens: a Swedish Multicomponent intervention

Demens ABCDemens ABC is actually becoming a basic education course for CRs

volunteers.

Modules

1. Person-centered care

2. Fact about dementia

3. Work together

4. Leave at home

5. Activities for a meaningful life

6. Food and meal

7. Safe care

8. Changes in behavior

9. Tool’s use

10.Support for families

2. Fact on dementia

4. Leave at home

5. Activities for a meaningful life

Food & Atmosphere6. Create desire for food and meal

How to organize in the plate

What to tell in order to create desire to eat

8. Changes in behavior

9. Tools

10. Support for

families

Preliminary data

Around 50,000 People registered

38,511 People went through the course & got Diploma

2,459 were going through the chapter (September 13th)

1. Dementia and Number of CRs will grow up overtime

2. CRs need to be guided through the difficult care’s process

3. We need to have more standardized intervention's program in order to study and compare effects and improvements in CRs QoL

Conclusion

Acknowledgements

From ARC: Prof. Laura Fratiglioni

From Demenscentrum: Olga Shyshko

From CNR, Padua: Prof. Stefania Maggi

All the staff involved in Demens ABC

Thank you for the attention