Family carer of dependent person Challenges and best practices in

Spain

Jesús Mª RodrigoExecutive Director

CEAFA

COFACE SeminarDependet persons in the European Union:

Who cares their family carers?Sofía, 20 October 2009

Alzheimer Disease

• 8% of people more than 65 years old is afected by dementia, but the disease is not exclusive of ageing

• In 2020, 7 million people afected in Spain. In 2050, 100 millIon in the World

• Alzheimer Disease is the most frequently cause of dependence

Alzheimer disease afects both who suffers it, and their family carers

The care in the family

• The attention is offered mainly in the familiar framewok and seccondary by programmes and public services

• The responsability of care fall on women, and particulary on single daughters

• The care generates a high economical, social, psychologycal… impact for the carer and the hole family

Positive effects of family care

• Dependent person may live in his usual frame, in known atmosphere and with closer people

• Prevent to put the dependent person in a residence, reducing public ressources

• Improve the quality of life of dependent person and of the rest of family, because familiar relationship is a warranty of an adeccuate attention

PHASE YEARSYMPTOMS

PERSON SUFFERING FROM AD FAMILY

FIRST

1

Self-esteem reduction Fear deterioration Some confusion Feels clumsy Self defence mechanisms

Observe estrange reactions Take the person to neurologist

DIAGNOSTIC

2

3

Forgetfulness Lost of vocabulary Space and temporal confusions Difficulties for mechanical activities Agitation, nervousness

Diagnosis impact Information phase Planning phase Main carer Alter of family live

SECOND

4

Forgets recent events Hardly does activities Doesn’t know big part of lexicon Doesn’t understand new situations Doesn’t recognize places and times

Main carer: Anguish for deterioration of loved one. Fear for future. Physical and psychical tiredness

Rest of family: Establish a time routine to take over the main carer. Anxiety and contradictory feelings

5

6

Walks clumsily Can’t dress, eat, walk by self Needs constant attention Affectivity is the link with life

THIRD

7 Doesn’t eat and recognize Doesn’t speak Unconscious almost day To stand still

Main carer: Feelings of loneliness, impotent. Difficulty to face up to biologycal death of loved one

Rest of family: Planning to take over the main carer and help in mobility, hygiene, etc.

8

9

Alternates bed with sofa Sleeping almost time Some shot moments of conscience Breathing, feeding, dermatology problems appear

Consequences for family carer

• Personal

• Social

• Profesional

• Economics

“Colateral effects” for family carer

• Physical alterations

• Psychological disorders

• Social disorders

Gender of main carer

PROFIL OF MAIN CARER FEMALEDISEASE PHASES

FIRST SECOND THIRTH

Age 56 years 55 years 57 yearsFamily relationship 56% spouse

44% doughte

r

47% spouse47% sons6% others

41% spouse59% doughte

rWithdraw of profesional activity 35% 13,9% 31,7%Familiar unity members 3,19 3,28 3,19Helping members 1 1,06 1Time from diagnoses 3,24 years 6,19 years 8,21 yearsTime attending the dependent person

5 years 7,3 years

Economic impact in the family

Best practice in Spain

The Asociations. A resource of comprehensive care

• The AFAS are private non-profit, legally constituted, who work in the field of action for the collective interests of those affected by Alzheimer's disease and their families.

• They conduct their activities primarily with volunteers, even though they have paid professionals, complementing efforts and functions

More than 280 associations spread across the Spanish geography,

CEAFA integrated, providing, inter alia, the following specific services

for all people affected by Alzheimer's disease

Reception and Information

Social Care

Psychological Care

TrainingAdvice

Day Centers Cognitive stimulation for people suffering from Alzheimer

managed by AFAS

Health Area

Psycho-social Area

Neuropsychologic and Behavourial AreaFamily intervention

Functional Area

Another Good Practice

Spanish Act of Dependency

• The Act aims to regulate the basic conditions guaranteeing equality in the exercise of subjective rights of citizenship in the promotion of personal autonomy and care for people in a dependent position (...) by creating a System for Autonomy and Care Unit, with the cooperation and participation of all government and ensuring the General State Administration a minimum of common rights for all citizens in any part of the Spanish State

Thank you very much for your attention

www.ceafa.esceafa@ceafa.es+34 902 174 517