RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study

YesBackground: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling and support to this vulnerable yet underserved group. Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer’s disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.RHAPSODY is an EU Joint Program - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organizations under the aegis of JPND (www.jpnd.eu). France: National Research Agency; Germany: Ministry of Education and Research; The Netherlands: The Netherlands Organization for Health Research and Development; Portugal: Foundation for Science and Technology; Sweden: The Swedish Research Council; United Kingdom: Economic and Social Research Council

Tackling psychosocial maladjustment in Parkinson's disease patients following subthalamic deep-brain stimulation: A randomised clinical trial

Subthalamic nucleus deep brain stimulation (STN-DBS) is an effective treatment for the motor and non-motor signs of Parkinson's disease (PD), however, psychological disorders and social maladjustment have been reported in about one third of patients after STN-DBS. We propose here a perioperative psychoeducation programme to limit such social and familial disruption

RHAPSODY – Internet-Based Support For Caregivers of People with Young Onset Dementia: Program Design and Methods of a Pilot Study

Background: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling and support to this vulnerable yet underserved group. Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer’s disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers

Electrode locations on postoperative MRI in the 17 PD patients operated for STN-DBS.

<p>Superior view of the STN after fusion with the three-dimensional MRI acquisition, an axial plane of which is shown. Electrode localisation is presented along the long axis of each electrode with transparent rendering of the three STN territories (limbic, yellow; associative, purple; motor, green). The active contacts are blue and the non active contacts are grey. Using this strategy, the mean mediolateral, anteroposterior and dorsoventral coordinates of active contacts in the 17 PD patients were 11.4±1.5 mm, 9.3±1.4 mm and 3.0±1.7 mm, in the anterior commissure-posterior commissure (AC-PC) space respectively. Panel A shows the electrode locations for the 7 patients who received the perioperative psychoeducation programme. Panel B shows the location of the electrodes in the 10 patients without perioperative psychoeducation programme.</p

Social adjustment modifications at 1 and 2 years after STN-DBS.

<p>Changes in the different domains of the Social Adjustment Scale (SAS) 1 and 2 years after surgery in PD patients were operated for STN-DBS without (above) and with (below) the psychoeducation programme. Aggravation is defined as an increase of ≥1 point of the SAS domain, improvement is defined by a decrease of ≥ 1 point of the SAS domain, in comparison to before the surgery.</p

Flow-chart of the study.

<p>Flow-chart of the study.</p

Randomised, single-blind, parallel design of the study.

<p>Patients were included and randomised 6 months before surgery for the psychoeducation programme (above) or usual treatment (below). CCA: Complete clinical assessment; Q&A: Question and Answer; * Individual session.</p

Prevention of progression to dementia in the elderly: Rationale and proposal for a health-promoting memory consultation (an IANA task force)

International audienceAlzheimer's disease (AD) is the most frequent form of dementia and according to the most recent estimation it affects nearly 27 million people in the world. The onset of the disease is generally insidious. It is becoming increasingly evident that the underlying pathophysiological mechanisms are active long before the appearance of the clinical symptoms of the disease. In the current context, it is important to develop strategies to delay the onset of cognitive decline. Delaying the onset by 5 years would reduce the prevalence by half at term, and a delay of 10 years would reduce it by three-quarters. The effectiveness of currently suggested preventive approaches remains to be confirmed, but certain strategies could be applied straight away to at-risk subjects. We propose that a health-promoting memory consultation should be set up for elderly persons who have attended a specialized memory consultation and in whom the diagnosis of dementia and of AD in particular, has not been established by standardized tools. Through this consultation, they would be offered full multidimensional investigation of all aspects of their health status, follow-up could be organized, general practitioners in private practice could be made more conscious of this population and the elderly could be made more aware of the risk factors to which they are exposed. The development of an information policy for the elderly would meet a present need. In our reflection, we must take into account the question of how to give this preventive consultation its due place in the healthcare pathway of the elderly person in order to ensure coordinated follow-up with all the other health professionals involved. The principle of the health-promoting memory consultation is undergoing validation in a large French multicentre preventive trial in 1200 frail elderly persons aged 70 years followed for three years, the Multidomain Alzheimer Preventive Trial (MAPT)