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Parallel Session P 8 - Organisation and financing of care

Detailed Programme and abstracts

Friday, 1 October – 14.00-15.30 (Green Room)

P8.1. Informal care received by people with dementia aged 75 years and older: empirical evidence from the French National Survey Handicap-Santé Ménages 2008

A. Paraponaris 1, 2, 3, G. Taché 1, 3, B. Davin 1, 3

1 INSERM, UMR 912 (SE4S), Marseille, France

2 Université Aix Marseille, IRD, Marseille, France

3 ORS PACA, Observatoire Régional de la Santé Provence Alpes Côte d’Azur, France

Background: In France, the majority of people with dementia live in the community. Dementia is often associated with a progressive loss of autonomy in activities of daily living. Thus, most of those people receive informal care, whose features mainly remain unrecognised. The survey Handicap-Santé Ménages was carried out in 2008 by the French National Institute for Statistics and Economic Studies (INSEE) and the French Ministry of Health; it gives valuable insights about that issue.

Objective: We measure the need for assistance with activities of daily living (ADLs) and instrumental activities of daily living (IADLs) faced by people with dementia aged 75 years and over. A description of human care received to perform these activities is also done. We focus on informal caregivers and the impact of caregiving on carers’ lives. Then, we compare the care received by people with dementia with that received by people who need personal assistance but do no have dementia.

Materials and methods: The sample is made of 4,678 people aged 75 years and older including 513 persons with dementia. Among them, 2,276 persons (480 individuals with dementia and 1,796 individuals with no dementia) reported needing help with at least one ADL or IADL. People in those two subsamples have been matched with the Propensity Score Matching method, using a logit link function, and controlling for observable heterogeneity due to differences in some socio-demographic characteristics. Comparison tests about the structure and the care hours received by the two populations have been computed.

Results: About two thirds of people with dementia aged 75 years and older need human assistance for ADLs and more than 90% for IADLs. Among them, more than 80% receive informal care. Most carers are spouses and daughters. Whereas husbands and wives are retired, daughters are often employed, which frequently implies work arrangements: two thirds of working informal carers have arranged their working time with flexible scheduling and reduced working hours. A third of the carers living with people with dementia spend up to 3 hours a day giving care, and two thirds spend from 4 to 12 hours a day. As far as carers who do not live with people with dementia are concerned, 80% spend up to 3 hours a day helping for ADLs and IADLs. People aged 75 years and older with dementia receive significantly more care hours in a week than their counterparts without dementia.

Conclusion: Care to people with dementia requires extended time that informal carers have to devote to their relatives with dementia. For working carers, it often includes working time arrangements and rescheduling, which can be deleterious for the professional earnings and career and, more generally, for health and quality of life. Informal caregivers obviously need to be supported and among them, working carers ought to benefit from legal and compensated arrangements of working conditions.

P8.2. People with dementia and care insurance in Luxembourg - Survey after more than five years

Dr med JC Leners et al.

Since 2000 care insurance is guaranteed for all people living in Luxembourg.

At the beginning it was not clear if this new law would also allow people with dementia to get the same amount of care as persons suffering from a physical disease.

As more than 10,000 persons have been evaluated over ten years, any kind of dementia is the second highest percentage of medical diagnosis for care insurance (20%), only topped by osteoarthritis and related diseases.

Looking more in detail the results over the last years, we may see that the total amount of hours allocated for persons with dementia is nearly 29 hours per week and largely above the mean average for all persons evaluated.

We will relate the fundamental differences since the law changed in 2007 in respect to people with dementia and again in 2009 for palliative care.

Even if 60 % of persons with a type of dementia are living in institutions, we can prove by statistical data that a higher percentage of people with this disease is living nowadays at home compared to the year 2000. The details for this change of paradigm will be analysed.

More than 2/3 of the hours allocated by care insurance are indeed for activities of support ; compared to persons with psychiatric diseases, this amount is 50% higher for people with dementia.

Quality management over the last years has shown that the hours of support allocated must be in relation to the activities of daily living.

Data of two different types of nursing homes: a general one and one specialised in care for persons with dementia will be shown in order to understand the different philosophies of care in the general context of a compulsory care insurance in Luxembourg.

As for the research in Luxembourg in this field, we can summarise some preliminary data of the only and unique project related to the prevalence and incidence of mild cognitive impairment.

P8.3. European health and social care and welfare systems for persons with dementia

Staffan Karlsson, PhD, MSc, RNT, Senior Lecturer 1, Gabriele Meyer, PhD, RN, Professor 2, Ulla Melin Emilsson, PhD in Social Work, MSc, Professor 3, Ingalill Rahm Hallberg, PhD, RNT, Professor 4 writing on behalf of the RightTimePlaceCare Consortium (EU, 7th Framework Programme, Contract Number: 242153)

1 The Swedish institute for Health Sciences, Lund University, Sweden,

2 Institute of Nursing Science, Witten/Herdecke University, Witten, Germany,

3 School of Social Work, Lund University, Sweden,

4 The Swedish institute for Health Sciences, Lund University, Sweden,

The care for persons with dementia is involving a diversity of social and health care interventions. The systems for dementia care and services vary across European countries. However, there is a lack of knowledge about the complex system for dementia care on a European level. A more comprehensive view of dementia care provision in Europe may provide knowledge that can serve as a basis for the development of best practice in the care of for persons with dementia.

The objective the study is to describe and analyse the European health and social care and welfare systems, advocacy and informal caregiver support systems for people with dementia. The presentation will focus on how data will be collected and how collaboration within the consortium will be performed.

A consortium including members from eight European countries is invited in the study. The research teams that will collect the data represent Estonia, Finland, France, Germany, Netherlands, Spain, Sweden and United Kingdom. The Swedish research team coordinates the study. The consortium members will review a suggested terminology for overall issues regarding the care system for people with dementia as well as national directives and financing. Further, data will comprise the terminology regarding descriptions of stages in the dementia trajectory, types of care provided and care providers. From this process an overall agreement on the meaning of relevant terminology is going to be obtained, and this will make it possible to describe the health and social care system for older persons with dementia in a European perspective. A developed template will be used to collect data regarding health and social care and welfare system from each country included in the study.

P8.4. Outcomes COGNOS study - Care for people with cognitive dysfunction - A Belgian national observational study

Mets T 1, Albert A 2, De Deyn PP 3, De Lepeleire J 4, Ivanoiu A 5, Pals P 6, Vandewoude M 7, Ventura M 8, Seghers A 9

1 VUB Brussels, Belgium,

2 UCL Liège, Belgium,

3 AZ Middelheim Antwerp, Belgium,

4 KUL Leuven, Belgium,

5 UCL Brussels, Belgium,

6 AZ St-Maarten Duffel, Belgium,

7 ACZ Antwerp, Belgium,

8 ghdc Charleroi, Belgium,

9 Pfizer Brussels, Belgium,

Objective: The COGNOS study aims at documenting the diagnostic, therapeutic and care management of a cohort of patients diagnosed with Alzheimer’s disease (AD) in specialized care setting. It focuses on the content and implementation of ‘the care plan’, which is requested for the reimbursement procedure for cholinesterase inhibitors in Belgium.

Material and Method: COGNOS is a study in community dwelling patients newly diagnosed with AD, with data collection amongst geriatricians/neurologists and patients/caregivers.

Data collection for physicians consisted of the completion of an electronic CRF at baseline and one at the follow-up visit, planned 6 months after inclusion in the care program for reimbursement of cholinesterase inhibitors. Data collection for patients, with/without help of a caregiver, consisted of the completion of a paper questionnaire at baseline and at follow-up.

Final Results: A total of 85 investigators enrolled 720 patients of whom 439 completed the questionnaire. Of 452 patients at the follow-up visit, 243 completed the second questionnaire. Age in geriatric care (81.3 years) was higher than in neurological care (78.6 years). At follow-up, 13.7% of initially enrolled patients were institutionalized. At enrolment 89.8% of patients were accompanied, 35.9% by a child, 54.3% by a spouse/partner. The main reason for first consultation was cognitive problems in geriatric care (81.6%) as well as in neurological care (88.8%). However in geriatric care, functional (30.9%) and behavioral (31.6%) problems were twice as common as in neurological care. Eleven percent of patients presented with an MMSE score <14, 33.3% in the range of 15-20, 50.9% in 21-26 and 4.8% >26. Overall scores of cognitive tests remained the same at follow-up. The time period between first consultation and actual diagnosis of AD was 24 days (median). Seventy percent of patients received cholinesterase inhibitors after AD diagnosis. Perception of life was significantly higher at follow-up. Help with ADL and professional help were judged significantly better at follow-up.

Conclusion: The COGNOS study demonstrates that measures taken by the governmental institution to provide reimbursement for specific medication (for example requesting a “specific and individualized care plan”) can lead to better, holistic care of a patient.



Last Updated: Wednesday 03 November 2010