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1. Centre d’Estudis Demogràfics Disabled people families. Some preliminary results for the Basque Country from the ‘Disabilities, Deficiencies and Health Survey of 1999’ Ainhoa Alustiza Galarza

2. Donostia San Sebastian Bilbao Bizkaia Gipuzkoa Vitoria-Gasteiz Araba The Basque Country Basque Country (1/1/2004): 2.115.279 Araba: 295.905 Bizkaia: 1.132.861 Gipuzkoa: 686.513

3. Population Trend • Historical context that emphasizes the need of research on disability: • Increment of traffic accidents ant its consequences • Historical context that emphasizes the need of research on disability: • Increment of traffic accidents ant its consequences • Change on the requirement level of life quality • “Increased longevity without quality of life is an emplty prize… • Health exectancy is more important than life expectancy” • World Health Organization (WHO), 1997; • The World Health report 1997. Conquering suffering, enriching humanity. • Historical context that emphasizes the need of research on disability: • Increment of traffic accidents ant its consequences • Change on the requirement level of life quality • Increase of survival and proportion of people aged 65 and more

4. Population Trend Population aged 65 or more. Basque Country, 1900-2001(percentages and absolute values) Source: Spanish Statistical Institute: Census, different years.

5. Population Trend Evolution of live expectancy at birth and at 65 years. Spain, 1950-2004 Source: Eurostat and Eustat (Basque Statistics Office).

6. Women Men Population Trend Survival curves, by age. Spanish cohorts, 1856-1960 Cohort Cohort born in 1956-1960 Survivors x 100 0 births Cohort born in 1856-1860 Period Source: Cabré, A. (1989) Life-Tables.

7. The Disabilities, Deficiencies and Health Survey of 1999 (DDHS-99) Main Objective and advantages Main Objective: Obtain information about the number of people who perceive any disability, their main characteristics so as their situation. Main Objective and advantages Main Objective: Obtain information about the number of people who perceive any disability, their main characteristics so as their situation. Advantages: - The sample size (218.183 interviews in 70.500 dwellings in Spain and 10.705 interviews in 3.527 basque dwellings) Main Objective and advantages Main Objective: Obtain information about the number of people who perceive any disability, their main characteristics so as their situation. Advantages: - The sample size (218.183 interviews in 70.500 dwellings in Spain and 10.705 interviews in 3.527 basque dwellings) - The reference population (people living in familiar dwellings) Main Objective and advantages Main Objective: Obtain information about the number of people who perceive any disability, their main characteristics so as their situation. Advantages: - The sample size (218.183 interviews in 70.500 dwellings in Spain and 10.705 interviews in 3.527 basque dwellings) - The reference population (people living in familiar dwellings) - The interviewed opinion Main Objective and advantages Main Objective: Obtain information about the number of people who perceive any disability, their main characteristics so as their situation. Advantages: - The sample size (218.183 interviews in 70.500 dwellings in Spain and 10.705 interviews in 3.527 basque dwellings) - The reference population (people living in familiar dwellings) - The interviewed opinion - Four questionnaires 1.Disabilities and Impairments Questionnaire (Persons aged 6 years and over) 2. Limitations and Impairments Questionnaire (Children aged under 6 years) 3. Household Questionnaire 4. Health Questionnaire Main Objective and advantages Main Objective: Obtain information about the number of people who perceive any disability, their main characteristics so as their situation. Advantages: - The sample size (218.183 interviews in 70.500 dwellings in Spain and 10.705 interviews in 3.527 basque dwellings) - The reference population (people living in familiar dwellings) - The interviewed opinion - Four questionnaires 1.Disabilities and Impairments Questionnaire (Persons aged 6 years and over) 2. Limitations and Impairments Questionnaire (Children aged under 6 years) 3. Household Questionnaire 4. Health Questionnaire - Main concepts definitions (World Health Organizations recommendations: the International Classification of Impairments, Disabilities and Handicaps)

8. In this presentation Objective: Analyze the relationship between disabled people and their immediate environment, the family and household. The family environment provides most of the support given to people requiring special care. Objective: Analyze the relationship between disabled people and their immediate environment, the family and household. The family environment provides most of the support given to people requiring special care. Disability: Every major limitation caused by a deficiency that a person suffers from at the present moment and affects for a lasting/long period in a particular activity of that person. They are the consequences produced by a disease or a deficiency on a person’s function level. Objective: Analyze the relationship between disabled people and their immediate environment, the family and household. The family environment provides most of the support given to people requiring special care. Disability: Every major limitation caused by a deficiency that a person suffers from at the present moment and affects for a lasting/long period in a particular activity of that person. They are the consequences produced by a disease or a deficiency on a person’s function level. Deficiency: Any lost or anomaly produced in an organ or on the own function of that organ. Objective: Analyze the relationship between disabled people and their immediate environment, the family and household. The family environment provides most of the support given to people requiring special care. Disability: Every major limitation caused by a deficiency that a person suffers from at the present moment and affects for a lasting/long period in a particular activity of that person. They are the consequences produced by a disease or a deficiency on a person’s function level. Deficiency: Any lost or anomaly produced in an organ or on the own function of that organ. Dependency: Any person who needs personal care or another person’s assistance to carry out anyone of the Activities of the Daily Living (ADL). There are different levels or degrees of dependency depending on the severity and the kind of those activities. Objective: Analyze the relationship between disabled people and their immediate environment, the family and household. The family environment provides most of the support given to people requiring special care. Disability: Every major limitation caused by a deficiency that a person suffers from at the present moment and affects for a lasting/long period in a particular activity of that person. They are the consequences produced by a disease or a deficiency on a person’s function level. Deficiency: Any lost or anomaly produced in an organ or on the own function of that organ. Dependency: Any person who needs personal care or another person’s assistance to carry out anyone of the Activities of the Daily Living (ADL). There are different levels or degrees of dependency depending on the severity and the kind of those activities. Data: Population aged 6 or more

9. Activities of the Daily Living, ADL ACTIVITIES OF DAILY LIVING (ADL) = BASIC DAILY LIVING ACTIVITIES (BDLA) + INSTRUMENTAL DAILY LIVING ACTIVITIES (IDLA)

10. Proportion or incidence of disability, by age and sex. Basque C., 1999 ResultsCharacteristics of disabled people Distribution of disabled population, by age and sex. Basque C., 1999 Distribution of disabled people, by age, sex and marital status. Basque C., 1999 Source: DDHS-99

11. Distribution of people with disability and people in dependency situations, by age and sex. Basque C., 1999 ResultsCharacteristics of disabled people Proportion of people with disability and with dependence for Activities for Daily Living (ADL), by age and sex. Basque C., 1999 Source: DDHS-99

12. ResultsCharacteristics of disabled people Proportion of people with or without dependence for Activities for Daily Living (ADL), by age and type of household. Basque C., 1999 Source: DDHS-99 and estimated from Social Services Statistics data (Eustat, Basque Statistics Office)

13. ResultsCharacteristics of the main caregivers Distribution of the Main Caregivers, by age, sex and marital status. Basque C., 1999 Source: DDHS-99

14. ResultsCharacteristics of the main caregivers Proportion of people who practice at each age as Main Caregiver, by sex. Basque Country and Spain, 1999 Source: DDHS-99

15. ResultsCharacteristics of the main caregivers Proportion of people who practice at each age as Main Caregiver, by sex and economic activity status. Basque Country and Spain, 1999 Source: DDHS-99

16. ResultsCharacteristics of the main caregivers Kinship tie between the Main Caregiver and the care recipient. Basque Country, 1999 Source: DDHS-99

17. ResultsWho cares for who? Kinship tie between the Main Caregiver and the care recipient. Basque Country, 1999 Source: DDHS-99

18. To take into account • Every time more people living till very old ages • Every time more nonagenarians/centenarians • Every time more people whose old parents (even both) are alive • Every time more people living till very old ages • Every time more nonagenarians/centenarians • Every time more people whose old parents (even both) are alive • Positive correlation between age/disability and age/dependency • The absolute number of people suffering from a disability and dependency is increasing • Every time more people living till very old ages • Every time more nonagenarians/centenarians • Every time more people whose old parents (even both) are alive • Positive correlation between age/disability and age/dependency • The absolute number of people suffering from a disability and dependency is increasing • Is postponing the emergence of disability? (Healthy active ageing) • The compression of morbidity (J. Fires) vs. Expansion of morbidity (Gruenberg) • Every time more people living till very old ages • Every time more nonagenarians/centenarians • Every time more people whose old parents (even both) are alive • Positive correlation between age/disability and age/dependency • The absolute number of people suffering from a disability and dependency is increasing • Is postponing the emergence of disability? (Healthy active ageing) • The compression of morbidity (J. Fires) vs. Expansion of morbidity (Gruenberg) • Great importance of informal caregivers (specially, family members and women) • Increasing activity rates of women (pressure on the bulk of the caregivers)

19. To take into account Activity rate, by age and sex. Basque Country, several years Source: Population census, several years (Eustat, Basque Statistics Office)

20. To take into account Activity rate, by age and sex. Basque Country, several years Proportion of people who practice at each age as Main Caregiver, by sex. Basque Country and Spain, 1999 Source: Population census, several years (Eustat, Basque Statistics Office)

21. To take into account • Every time more people living till very old ages • Every time more nonagenarians/centenarians • Every time more people whose old parents (even both) are alive • Positive correlation between age/disability and age/dependency • The absolute number of people suffering from a disability and dependency is increasing • Is postponing the emergence of disability? (Healthy active ageing) • The compression of morbidity (J. Fires) vs. Expansion of morbidity (Gruenberg) • Great importance of informal caregivers (specially, family members and women) • Increasing activity rates of women (pressure on the bulk of the caregivers) • The high age average of the caregivers (34% are retired) • Every time more people living till very old ages • Every time more nonagenarians/centenarians • Every time more people whose old parents (even both) are alive • Positive correlation between age/disability and age/dependency • The absolute number of people suffering from a disability and dependency is increasing • Is postponing the emergence of disability? (Healthy active ageing) • The compression of morbidity (J. Fires) vs. Expansion of morbidity (Gruenberg) • Great importance of informal caregivers (specially, family members and women) • Increasing activity rates of women (pressure on the bulk of the caregivers) • The high age average of the caregivers (34% are retired) • Changing the point of view of women about significance of care • Every time more people living till very old ages • Every time more nonagenarians/centenarians • Every time more people whose old parents (even both) are alive • Positive correlation between age/disability and age/dependency • The absolute number of people suffering from a disability and dependency is increasing • Is postponing the emergence of disability? (Healthy active ageing) • The compression of morbidity (J. Fires) vs. Expansion of morbidity (Gruenberg) • Great importance of informal caregivers (specially, family members and women) • Increasing activity rates of women (pressure on the bulk of the caregivers) • The high age average of the caregivers (34% are retired) • Changing the point of view of women about significance of care • Development of social services

22. Centre d’Estudis Demogràfics Disabled people families. Some preliminary results for the Basque Country from the ‘Disabilities, Deficiencies and Health Survey of 1999’ Ainhoa Alustiza Galarza aalustiza@gmail.com