Profiles of Alzheimer's caregivers in Spain: social, educational and laboral characteristics

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Dementia is a progressive clinical syndrome caused by a neurodegenerative disease, characterised by inexorably progressive deterioration in cognitive ability and capacity for independent living. An individual with dementia develops care dependence, which means that, as the illness progresses, a longer amount of time is spent on care and less is dedicated to the caregiver's own life. Taking care of someone who needs increasingly more dedication consumes time, energy and financial resources. The main cause of dementia is Alzheimer's disease (AD).
Although early‐onset cases are rising 1, the amount of people who suffer from AD is continuously increasing due to the population growth of the main risk group, older people, thanks to the improvements in life expectancy. In 2012, the European Commission 2 published a prediction about population changes for the following 50 years, with various scenarios regarding the increase in public expenditure on health care between 2010 and 2060. The percentage of people aged 65 and over will rise from 17% to 30%, and the percentage of the population over 80 will increase from 5% to 12%. The increment in expenditure in the 11 scenarios proposed by the Commission ranges from a slight decrease of −0.2% in public pension expenditure of the GDP (with Constant Health scenario for the case of Bulgaria) to an increase of 5.1% (with the Nondemographic Determinants scenario for the case of Malta).
The prevalence of dementia is expanding rapidly 3. It is estimated that 35.6 million people lived with dementia worldwide in 2010, with numbers expected to almost double every 20 years, to 65.7 million by 2030 and 115.4 million by 2050. Age‐standardised prevalence for those aged over 60 years varied within a narrow band, 5–7%, in most world regions 4. The prevalence of dementia is significantly higher in women 5 and increases with age, particularly for AD. In Spain, the number of people with AD is about 650 774, with a prevalence of 6.15%. In general, prevalence in the different regions of Spain 6 lies within the range of 4.91–8.06%, and in the area where the present study was carried out, this figure is 5.63%, with an estimation of 94 805 cases of AD.
People with dementia need health care and especially long‐term care (LTC) to assist them in activities of daily living 7. LTC services involve the organisation and delivery of a broad range of services and assistance on a daily basis over an extended period of time. In most cases, this LTC is provided by a caregiver within the family 8, because when public or private services are available (usually in developed countries), they have been created to help maintain the ageing person within the family environment 9. Caregiving should be a concern for communities, governments and society as a whole and not only the responsibility of the family; however, in practice, this is the reality encountered.
Provision of LTC implies consequences for the caregiver, especially for the main caregiver 10, whose free time is increasingly reduced as the disease progresses, which results in the imposition of an ever‐heavier burden 11, and an increased risk of poor health 16. This increased risk is attenuated after adjustment for socio‐economic position and particularly after adjustment for differences in employment status; it is clear that socio‐economic factors influence caregiver's health 18.
Therefore, when we talk about dementia, the question arises: Who takes care of whom? The extended family kinship system, which was common in the past, has given way to a smaller family system, where the caregiver has no respite through the sharing of the caregiving 19 with other family members.

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