Coping with dementia

FAU researchers develop test to assess everyday practical skills

Impediments to mental performance and especially mounting difficulties in everyday life – these are the main symptoms of the different forms of dementia. In order to reliably evaluate whether and to what extent dementia patients are already restricted in everyday life, researchers at the Department of Psychiatry and Psychotherapy at Universitätsklinikum Erlangen are developing a performance test that can measure the status of everyday abilities in patients especially with mild dementia – which will be done by working directly with the patient. So far, doctors have had to primarily rely on assessments by other people in the patient’s life. The project has received funding of 60,000 euros from DFG as part of a health service research workshop for early career researchers (Nachwuchsakademie Versorgungsforschung).

Our society is ageing – and sooner or later the elderly have to ask themselves how long they can continue living in their homes and when it is perhaps time to find a carer. This question is especially important for dementia patients. Activities of daily life (ADL) skills are an important measure of a patient’s ability to lead an independent life. Currently, no performance test exists for an economical, sound and reliable assessment of ADL skills in patients with mild dementia. Instead, medical professionals have relied on subjective assessments to measure any restrictions in ADL skills. Existing performance tests have methodological weaknesses due to their lengthy duration and debate as to whether a specific skill they are measuring has been proven to be relevant to daily life.

This is to change now: a research team led by Dr. Katharina Luttenberger are developing and piloting a new comprehensive performance test which will have several benefits in comparison to existing methods. The test must be efficient and simple to carry out (duration: 15 minutes) and demonstrate restrictions in patients with mild dementia in a scientifically-valid and consistently verifiable manner which will be demonstrated with a sample of 120 patients.

During a comprehensive preliminary study, the research group has already devised a set of twelve tasks in conjunction with focus groups of experts and relatives, which have been tested on 30 individuals with mild dementia for feasibility and acceptance. The final project will include 20 tasks which will be set to all 120 participants. The study includes tasks that are essential to everyday activities in communication, mobility, self-sufficiency and household activities which affect patients with dementia.

Researchers will then produce a list of five to six tasks from the test pool which proved most accurate and appropriate in measuring activities of daily life skills. An example of a task in the Communications category may be to call a doctor and arrange an appointment – including searching for the number, recognising an answering message or communicating with a receptionist. Self-sufficiency tasks could include preparing meals or shopping, household activities may include using the microwave safely and mobility could assess the patient’s ability to judge the correct right-of-way or follow traffic lights correctly.

Finally, the test must meet stringent requirements in accuracy, validity and objectivity. Dr. Katharina Luttenberger and her researchers will tackle these areas by cross-checking their results with existing performance tests and other methods for measuring cognitive ability and mood. The final set of tasks must also address the difficulty level of everyday challenges to ensure an accurate evaluation of the severity of restrictions faced by the patient.

The complete test is due to be presented in 2014 and is essential in research to describe if and how therapies are effective in the treatment of dementia.

At the same time, the test is also needed desperately in clinical routine. The current research project is based on previous research by Prof. Dr. Elmar Gräßel, Director of Medical Psychology and Sociology at Universitätsklinikum Erlangen, who is also mentoring the current project. Professor Gräßel and his team focused on devising performance tests for patients with severe and intermediate dementia. According to observations by FAU researchers, these performance tests have proven to be relatively reliable in the prediction of patient care stages and when patients will enter the next care stage.

‘Most importantly, patients will receive appropriate therapy based on the test results,’ says Dr. Luttenberger. ‘We have already shown in previous studies that dementia patients are capable of continuing to care for themselves over long periods of time with the appropriate therapy and training. The tests will help to identify at-risk groups whose performance remains acceptable but is beginning to deteriorate. We can provide a wide range of support for such patients.’

Facts and figures on dementia in Germany

• Over 1.45 million are affected by dementia in Germany (Bickel 2012) and all of these people have restricted activities of daily live skills of varying severity.
• Approximately two thirds are cared for at home, in 90 percent of cases by relatives.
• With intensive multi-modal therapy, activities of daily life and cognitive skills can be maintained for at least twelve months (Gräßel, Stemmer et al. 2012, www.maks-aktiv.de).
• Less than 25 percent of patients have been prescribed anti-dementia medication.

Further information:

Dr. Katharina Luttenberger
Phone.: +49 9131 8534650
Katharina.Luttenberger@uk-erlangen.de