**3. Informal caregiver and the socio-economic burden**

Caring of Alzheimer's patients may take place in two frameworks, which may be supplemental or complementary: the formal care and the informal care.

**Figure 3.** *The number of LTC workers per 100 individuals aged +65, 2011 and 2016 (or nearest year). Note: LTC, long-term care. Source: OECD [9].*

The formal care is supplied by the public or private sector and by its health-care professionals, who provide a service and are paid for that service. Across Europe, the number of formal carers is low. In some countries, such as Portugal, the number of formal carers is extremely low, less than an average of 2 long-term care (LTC) professionals per 100 older persons aged above 65 (**Figure 3**). While in some countries the number of LTC workers per old person has increased between 2011 and 2016 (as in France and Croatia), in other countries there has been a decrease (as in the Netherlands, Estonia and the UK) (**Figure 3**).

Informal care is offered by someone who is close to the older patient, either family, friends or neighbours. Informal carers provide help in a voluntary and non-paid manner. Usually caregivers provide assistance to patients in their own home, and this assistance is mainly directed for patients' daily tasks [9].

Despite international data on informal carers is hard to compare and it is based in several sources of information, the OECD has gathered the information for several countries concerning the share of informal carers among the population aged more than 50 (**Figure 4**) [10].

In spite of being difficult to find numbers for informal carers along the time and across countries, it is expected that this number will not be sufficient to attend to the increased number of dependent older people [11].

The total cost of dementia in EU27 in 2008 was estimated in round number of \$160 billion, and 56% of these are costs of informal care. While in Northern Europe the larger proportion goes for formal care, in Southern Europe the larger share is on the informal care [12].

The importance of informal care has become a more prominent issue recently, as the share of elderly in the population began to increase and as the LTC system funding began to be a social concern. Not only informal care is a cost-effective alternative, but also it is a well-being alternative for patients who may remain at their homes. So in several countries across Europe, different public supports have been offered to informal care as a form of incentive and as a support to families and friends of patients. That being so the distinction between formal and informal and paid and unpaid care is becoming unclear in European countries [13].

Informal care is provided at home, and it basically aims to help Alzheimer's patients in activities of daily living (ADLs) and instrumental activities of daily living (IADLs) but also to give emotional support. ADLs are activities that include *The Burden of Informal Caregivers of Alzheimer's Patients: An Estimation to Portugal DOI: http://dx.doi.org/10.5772/intechopen.90673*

#### **Figure 4.**

*Informal carers as a % of total population, EQLS 2016. Source: EQLS 2016, figure adapted from EQLS overview report [10].*

basic self-care tasks such as walking, toileting, bathing, feeding and dressing. IADLs are self-care activities, which require some complex thinking, skills and organisation. These include managing finance, transportation, shopping, meal preparation, communication and managing medications.

Helping with these activities systematically along time is uncomfortable, unpleasant and overwhelming. Informal caregiving is emotionally rewarding, bringing up self-esteem and sense of worthiness and life mission. But it is a very demanding role, and informal carers very often suffer burnout and health problems [14]. On top of this, several carers have difficulties combining the care with their labour responsibilities, and some quit their jobs to be able to respond the patient needs. In fact, this decision may be harmful in their future as it compromises future employability and leads to permanent drop-out from the labour market [15].

Several studies have been devoted to estimate the cost of taking care of Alzheimer's patients. In general, these costs depend on the number of hours of care, the severity degree of the disease, the use of formal care and the weather the carer is cohabiting with the patient [16].

The most used methods to estimate the monetary value of informal care to Alzheimer's patients are those based on "stated preferences" and those based on revealed preferences, which include the "proxy-good method" (also called market cost method) and the "opportunity cost method" [17].

"Stated preferences" is a method to provide a monetary value to something that has no market value. It is based on questions collected by a survey. The answers are given in the form of monetary amounts, choices, ratings or other scales which allow the monetary value.

The "proxy-good method" values time spent on informal care at the market prices of a close market substitute. So an almost perfect substitute in the market needs to be found and used as a reference. The "opportunity cost method" values the informal caregiver's benefit forgone due to spending time on providing informal care. Usually this is done using the individual's wage rate. Both these methods do not cover all costs and effects of informal care, and so they are usually used as complements [17]. However, in our work due to the data availability, only "proxy-good method" is used.

#### *Evaluation of Health Services*

Concerning the care provided, data is collected using the instrument called Resource Utilization in Dementia (RUD), which provides information relative to the formal and informal care given to the patient according to his level of dementia [18].
