Family carer of dependent person Challenges and best practices in Spain
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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
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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
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Alzheimer disease afects both who suffers it, and their family carers
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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
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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
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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
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Consequences for family carer
• Personal
• Social
• Profesional
• Economics
“Colateral effects” for family carer
• Physical alterations
• Psychological disorders
• Social disorders
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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
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Economic impact in the family
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Best practice in Spain
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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
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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
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Reception and Information
Social Care
Psychological Care
TrainingAdvice
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Day Centers Cognitive stimulation for people suffering from Alzheimer
managed by AFAS
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Health Area
Psycho-social Area
Neuropsychologic and Behavourial AreaFamily intervention
Functional Area
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Another Good Practice
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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