The need for care will also induce an increment in the direct an indirect costs that will have to be hold up by the socio-sanitary national protections systems. The aim of our study is : 1 to know the profile of the caregivers and patients we have now at the south of Spain, 2 Identify the class of service they demand since the application of the new Promotion of Personal Autonomy and Long Term Care Law system for the autonomy and dependence attention- SADA , 3 To establish hypothesis for a further study of the indirect cost of AD.
We have had interviews with families, who filled up a test made by a social worker or a psychologist linked to the ADAs. The assistance most valued for families was the intensive in time, so that was the reason why they preferred programs more intensive in hours per day. All the studies reviewed, and ours too, shows that the more important side of the costs of AD is the one provide by the social system and in particular by the informal cares families.
It is represents a growing aspect to be bear in mind for policy makers, and specially when the caregivers profile is changing and it is going to be needed to prepare new social services for a new reality, which is essential to assess the contribution of the cost, and especially to know the value of indirect cost provided for the family. Austria, a federal country with 8. Service utilization is recorded in many different databases, with different structures and semantics, and only partly with a unique patient identifier UPI.
The aim of the present study was to identify pathways of care of patients with dementia. Since their first contact with health services usually occurs in the primary care and outpatient sector, where no coded diagnoses are reported in Austria, prescription of anti-dementia drugs ATC N06D was taken as a proxy for case definition.
The methodological challenge was to link records of many different databases. A countrywide database GAP-DRG covering the whole population was established for and , in which service utilization records can be linked after pseudonymisation of the UPI and by special matching methods.
The database covers the whole range of health services, including hospital, specialized outpatient and primary care, as well as pharmacies. Co-prescription for physical disorder and type of prescribed anti-dementia agent were found to be important determinants of service utilization. Overall, the study shows that record linkage across multiple routine databases is possible and can provide important information on pathways of care.
Is Alzheimer's disease hereditary? Is there a test that can predict Alzheimer's disease? How is Alzheimer's disease diagnosed? Diagnosis of dementia Disclosure of the diagnosis Facing the diagnosis Taking care of yourself Developing coping strategies Maintaining a social network Attending self-help groups Accepting help from others Dealing with feelings and emotions Changing roles and how you see yourself On a more positive note Organising family support Dealing with practical issues Financial and administrative matters Driving Safety issues Employment issues Healthy eating Contact and communication Speaking, listening and communication Signs, symbols and texts Personal relationships Talking to children and adolescents Changing behaviour Lack of interest in hobbies Disorientation Managing everyday tasks Keeping an active mind Services Caring for someone with dementia The onset of the disease Diagnosis: should the person with dementia be told?
Dealing with emotions Arranging who will be responsible for care Determining to what extent you can provide care How will Alzheimer's disease affect independent living?
The contingent valuation method in health care. An economic evaluation of Alzheimer's disease.
What progress so far? Medical ethics and bioethics in Europe The four common bioethical principles Respect for autonomy Beneficence and non-maleficence Justice Other ethical principles Solidarity and interdependence Personhood Dignity Cultural issues linked to bioethical principles Ethical issues in practice Intercultural care and support Introduction Understanding dementia and help seeking Diagnosis, assessment and treatment. Support and care Professional and informal carers Conclusions References Members of the expert working group Terms and concepts Dementia as a disability?
Why PharmaCog? Who are the PharmaCog partners? Academic Partners Pharmaceutical companies SMEs, patient group and regulatory authorities What do the partners bring to the project? Coordination Management approach Collaboration with other projects Who financially supports PharmaCog? How will PharmaCog benefit patients? Why do we need research? Who can take part in research? Benefits of taking part in research Risks in taking part in research Questions to ask about research Tests used in dementia research Ethical issues Types of research Philosophies guiding research The four main approaches Research methods Clinical trials What is a clinical trial?
What are the official requirements for carrying out clinical trials in the European Union? Types of clinical trials Phases of clinical trials Continence care Guidelines What do we need from service providers and policy makers? Alzheimer Nederland — Young onset dementia P2. Memory clinics and centres P3. Needs and experiences of people with dementia and their carers I P4.
Awareness and policy campaigns P7. Technology P8. Alzheimer Nederland — Social innovation P Post-diagnostic support P Needs and experiences of people with dementia and their carers II P Neuronet: From risk, to dementia — Understanding disease progression and its causes P Inter National dementia strategies P This study analyses the monetary value of informal caregiving in two different regions of Spain.
This assessment has been carried out applying different techniques, which provide very different figures depending on the approach considered.
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Although the selection of carers was not carried out looking for representation at the national level, our results show the high number of informal caregiving hours for family members and friends of the caregivers interviewed. In this sense, it should be stressed that there is a high heterogeneity between OECD countries in the provision of such service. This is a very relevant issue to be considered when taking into account the composition of the LTC system in Spain, in which family plays a dominant role as it is the safest care provider to cover the needs of people in situations of dependency, while the public-sector support is secondary [ 37 ].
However, instead of offering services in-kind, the monetary benefits from providing care to their relatives have become a common practice because they are not only more affordable than investing on or contracting out service provisions, but also because cash benefits are preferred by families they represent an income entry for the household and they do not have to bear the co-payment for in-kind services [ 37 ].
Then, due to the high number of hours of caregiving, the composition of the LTC system as well as cultural aspects, the care provided by family members plays a fundamental role within the LTC system in Spain, and, therefore, it needs to be considered when designing policies focused on personal care of people with limitations in their activities of daily living.
However, this is not limited to the Spanish sphere, but is extended to all of Europe, since the traditional distinction between professional and non-professional informal care is being transformed in the context of the evolution of long-term care systems [ 38 ]. In this sense, the literature has studied the relationship between formal and informal care from several alternative ways.
Firstly, the compensatory model holds that caregivers may lean on formal care when no other alternatives are available. This model establishes that the family is the first group in terms of importance in the support of people who need it and that the patterns of assistance follow a hierarchical order determined by the preferences of the individuals.
Each of the groups -first the family, followed by friends and neighbours, and finally the formal services-, provides assistance when the previous preferred sources of support are not available substitution model or are insufficient complementarity model.
Finally, the task specific model considers that what determinates the type of care provision is the nature of the task informal care is usually used for tasks in which an affective relationship is present as well as in tasks of supervision care [ 39 , 40 ]. Our estimates actually indicate that services received at home are complementary to informal care while services received out of home are substitutes to informal care. This conclusion is in line with the previous literature in which different assumptions about the relationship between formal and informal care are considered [ 41 ].
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Moreover, taking into consideration all the aforementioned assumptions, the literature reveals that the relationship between these two types of care would depend on the health status of the person who is cared for such as the diseases suffered from , tasks needed, the relationship between the carer and the dependent person, household income and sociocultural factors [ 42 — 47 ]. Our statistical analysis reveals that the main variables associated with the amount of caregiving time provided were gender, age, region, level of dependence as well as the reception of social services.
On the other hand, contrary to the literature that indicates more intensive care in women [ 48 — 50 ], our study indicates that women have a lower probability of caring intensively than men. Possibly this could be due to the fact that the profile of male caregivers of the sample are mostly older men who take care of their wives at home, while women have a more heterogeneous profile [ 13 ]. Another relevant result from our analysis confirms that the election of the valuation method applied has a considerable influence in the result as the average cost ranged from EUR 80, per year when considering replacement method to EUR 14, WTP , going through EUR 27, opportunity cost method and EUR 29, WTA.
This high disparity in the value of informal caregiving time implies that the choice of the valuation method is not neutral. So, if the election of the approach has a strong influence on the estimated values of the cost of a disease, it could also influence the results of the economic evaluations of health interventions in diseases that require intensive informal care. In any case, and even using the most conservative estimates, the results indicate the great importance of informal caregivers in Spain as a care network for people with limited autonomy. This can be proved by comparing the results of our estimates with the public prices tariffs of professional formal care published by Spanish public institutions [ 31 ].
This means that the estimated annual opportunity cost of informal care estimated in our work exceeds the cost of a residential place. On the other hand, the public price of a residence is much lower than the estimated value of informal care using the replacement cost, although we should consider that the cost of replacement is established based on a home care service while the residential place would mean changing the environment of the person cared for.
P11. Socio-economic cost of dementia
Considering the great importance of informal care in Spain, as well as the predictions stating that future demand of informal care will exceed the supply [ 51 , 52 ], a prompt replacement of informal care for professional services would collapse the long-term care system and make it financially unsustainable.
Therefore, it is essential to consider the current role of informal care not only in Spain but also in most European countries in order to evolve towards a LTC system that provides much more support to informal caregivers and where the transition between informal care and formal care is carried out in a smooth and programmed manner. Some limitations should be highlighted. Firstly, the survey used is a cross-sectional and not longitudinal data. A consequence of such limitation is the impossibility of establishing a causal association between the caregiving time and the elements analysed.
Secondly, the sample involves carers living in two different regions of Spain. Therefore, it is not a representative at the national level. Consequently, caution is needed when extrapolating such results to the entire population or population caring for individuals with specific diseases. Third, when estimating the value of informal care using the opportunity cost approach, the shadow price applied to leisure time has been the same as that applied to unpaid production time. The absence of Spanish studies on the value of leisure time has advised acting in this way.
Finally, with respect to the methods of assessment of informal care, each of them has advantages and limitations [ 7 ], so there is no single commonly accepted method of assessment. This is not a limitation proper of this work and suggests that, in the estimation of the value of informal care, it is useful to consider the application of several methods to enrich the analysis.
In fact, a possible limitation of the study is that caregivers who have not had any contact with health or social services have not been included.
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