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Parallel Session: Assistance and support (Home and respite care)

Abstracts and presentations

Team of care at home in severe dementia

Magda Tsolaki, Greek Association od Alzheimer’s disease and related disorders, Greece,
Co-authors: Marina Eleftheriou, Ioanna Tsokanari, Evgenia Gavopoulou, Pantelis Maiovis

The team of care at home of the Center of Alzheimer’s disease "Saint Helen", is comprised of a medical doctor, a dentist, a psychologist, and a social worker. The team visits patients with dementia in the final stage or less advanced stage that for various reasons are not able to reach the centre. The doctor’s field of action consists of four levels: a. initial estimate, b. estimate of needs and current problems aimed at the optimal planning of action, c. benefit of health services and realisation of interventions and d. evaluation of results, feedback and new planning. The dentist of the team initially makes a general evaluation of the dental and oral condition of patients. Then she carries out actions of preventive dentistry and gives advices and directives on early diagnosis of oral problems and proper oral hygiene.

The psychologist of the team proceeds in the neuropsychological assessment of the patient. Also, she investigates the psychological situation of the caregiver with suitable scales and questionnaires and then she intervenes by counselling and supporting so that she helps them to manage and overcome their difficulties. The social worker of the team proceeds in the reception of social background and the evaluation of the social needs of family. She provides support and advice regarding to the social re-activation of the family and provides information regarding to the institutions from which they can draw help. Also, information is given regarding the benefits that they can have from their insurance funds and she assists them in the sorting out several matters with their insurance.

Finally, the main concern of the team is the permanent education of the caregiver as well as clarification of queries about the disease and learning simple techniques that can however improve effectively the daily care of the patient and the family’s quality of life. The team has served almost 210 families in urban and rural areas of Thessaloniki, Northern Greece since March 2007, with repeated visits to each house depending on the size and the type of problem.

Evolution of the concept of respite and respite care services: an international perspective

Marion Villez, Fondation Médéric Alzheimer, France,

Respite care is a priority of the third French Alzheimer Plan 2008-2012. On behalf of the governmental follow up committee, Fondation Médéric Alzheimer established a typology of the different respite care services, based on an international literature review.

Our study is the result of professional focus groups, interviews of family carers and people with dementia, and on field visits for practice and projects observation. We observed a real paradigm change about respite care design and implementation over the past few years. One of the major features is the new consideration of quality of life for both people with dementia and their carers and not only the satisfaction of carers respite needs alone. To illustrate these new trends, we will present different initiatives directed jointly towards people with dementia and their carers, or offering mobile community services to get closer to both users. We will show how these new pragmatic approaches allow the adaptation of intervention modes to complex life situations, within different family contexts. These new solutions attempt to create more accessible, acceptable and effective respite care services.

Respite care services for people with Alzheimers disease and their carers: a socio-political review

Laëtitia Ngatcha- Ribert, Fondation Médéric Alzheimer, France,

A number of institutional and ambulatory respite care services for people with Alzheimer disease and their carers have been implemented in the last decades. Only a few of them have been evaluated and/or have reached satisfactory scientific requirements. A review of literature on this topic, lead by the Foundation Médéric Alzheimer in 2008 on behalf of the 3rd governmental Alzheimer’s Plan follow-up Committee, enabled us to enlighten the links between respite services and socio-economical evolutions.

In this communication, we propose to analyse research literature as well as meta-analytic reviews on evaluations of respite care services, and to focus on the main outcomes of such services on people with Alzheimer’s disease and related disorders and their carers. We will outline the formulas that have demonstrated efficacy and other promising techniques. After a brief summary of the French political landscape concerning people with Alzheimer’s disease and their carers, we propose to dress a portrait of the state of the art and the needs for implementation of respite care services and future research on this area of interest.

Economic valuation of formal and informal care for French disabled elderly living at home

Bérengère Davin, Université Aix-Marseille, France,
Co-author: Alain Paraponaris

Objectives: Population ageing leads to demographic and social changes that raise challenging issues about the management and financing of long-term care for the elderly. Taking care of disabled elderly involves public cost, but also private expenses paid by the elderly themselves, as well as by their family. Yet, although informal care is the main source of assistance, its economic value remains puzzling. The study aims at assessing its cost in the French case.

Methods: The analysis uses data from a French representative survey on disability, gathered in 1999 among people living at home. The sample is about 3,500 older persons aged 60 and over, who reported needing help with activities of daily living. Cost of care is valued according to the proxy good method. First, the number of care hours provided to the elderly is estimated, using a methodology developed by French social experts. Second, the amount of care hours is converted into monetary value by applying an hourly wage rate.

Results: The economic value of informal care would lie between EUR 6.1 and 8.3 billion. Formal care received by older people would vary from EUR 3.5 to 4.7 billion. Thus, care provided by family, friends or neighbours would account for more than 60% of the total cost of care for daily activities.

Conclusion: The public financing of care for disabled elderly still remains insufficient to cover the whole costs. It may have serious implications on the health of the elderly and their carers. Yet, until now, French policies and public plans devoted to disability have not really paid attention to informal caregivers. Neglecting them may skew the assessment of the effort that the whole society, and not only families, would have to do for the intergenerational solidarity

Purchasing integrated dementia care

Julie Meerveld, Alzheimer Nederland, Netherlands,
Co-author: E. Heitink

In June 2002 the Ministry of Public Health, Welfare and Sport asked ‘Alzheimer Nederland’ and the Netherlands Institute for Care and Welfare (Vilans) to develop an instrument for regional providers of care, welfare and cure of dementia to improve dementia care from a client perspective: a collaborative project called the National Dementia Programme (LDP). This was continued by a 4-year programme (2005-2008) in which 57 regions in the Netherlands (covering 90% of the country) worked on improving care for people with dementia and their families. In each region providers of care, welfare and cure worked together with volunteers of the Alzheimer Nederland, to solve the problems clients and their families encountered with care, and to realise integrated care. As a result, 206 projects in total operate throughout the country. ‘Alzheimer Nederland’ collected the wishes and demands of clients and their families in focus groups (N=160) and the “LDP-questionnaire” (N=1,500).

In 2008 the LDP was succeeded by the programme: ‘Purchasing integrated dementia care’, with as participants Alzheimer Nederland, ZN (the sector organisation representing the providers of healthcare insurance in the Netherlands) and the Ministry of Public Health, Welfare and Sport. The good practices of the LDP were used to describe the “ideal region” for people with dementia and their informal carers from the first signals of the dementia until the end, based on the client perspective. ZN made guidelines to finance the integrated care. Care providers who develop integrated dementia care including casemanagement receive extra budget. Volunteers participate as patients’ advocates being spokesmen for people with dementia and their families in the region.

Each of the first 16 participating regions in the purchasing programme care providers have developed action plans in December 2008 for the purchase of the integrated dementia care. Positive advice of the volunteers of ‘Alzheimer Nederland’ is necessary for the extra funding for integrated care. The experiences of the first year with purchasing integrated dementia care will be used to make adjustments. In 2009, other regions will follow and purchasing integrated dementia care will be implemented nationwide by 2011.

Frontotemporal dementia in the Netherlands

Yolande Pijnenburg, VU University Medical Centre, Netherlands

Frontotemporal dementia (FTD) is the second commonest cause of early onset dementia.

It is characterised by profound personality change, language and executive dysfunction, with relative sparing of memory function and other cognitive domains. People with FTD and their relatives often experience a diagnostic delay of several years, leaving them in long term uncertainty and risking emotional and material damage. As people with FTD have no complaints themselves, it is very important to listen to their families and to educate their families after the diagnosis is made. The behavioural aspects of FTD, such as disinhibition, aggression or apathy, often lead to problems in daily care, frustrating their caregivers. As in up to 20% of cases FTD is familial, often, questions about heredity arise among relatives. Specialized day care institutes and nursing homes are limited. No uniform way to manage behaviour in FTD exists.

The Dutch frontotemporal dementia experts group was founded in 2007 in collaboration with the Dutch Alzheimer association. Their goal is to provide easily accessible information for professionals and to increase professional knowledge about FTD. The group consists of 15 members, uniting the most relevant professional disciplines in this field. They have created a website ( and aim to provide a best practice model for the diagnosis, management and care of FTD patients and their families. Awareness of the specific problems in FTD among Alzheimer associations could support this group of younger people with dementia and their relatives.



Last Updated: Thursday 17 December 2009