A systematic review of qualitative studies on patient and carer experiences of dementia diagnosis and treatment
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
This study presents a thematic analysis that could be useful to professionals working with people with dementia. The authors suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Pubmed link is available below.
Evidence from a meta-analysis of voxel-based morphometry studies
The number of people with Parkinson’s disease (PD) who have cognitive symptoms is difficult to pinpoint, mainly due to the use of various definitions of cognitive impairment and dementia. Realistic estimates suggest that at least 50% of people with Parkinson’s have some mild cognitive impairment, with as many as 20-40% with more severe symptoms or dementia. Another problem is that PD often overlaps with other degenerative brain disorders that can cause dementia, such as Alzheimer disease and vascular disease. This study gives further insight into the pathophysiological basis revealed by the brain structure abnormalities in Parkinson’s disease dementia. The meta-analysis from this review provides strong evidence of Parkinson’s Disease-related brain atrophy in the medial temporal lobe and the basal ganglia areas of the brain, thus implicating these areas in Parkinson’s disease with Dementia.
Pubmed link is below:
JPND is inviting calls for proposals from research teams across Europe to increase understanding of the factors that put people at risk of developing neurodegenerative diseases such as Alzheimers and also to evaluate health and social care strategies for people living with these debilitating illnesses.
The incidence of Neurodegenerative diseases such as Alzheimers and Parkinsons is exploding due to aging populations, which are creating huge social, economic and healthcare impacts across the world according to Professor Philippe Amouyel, Chair of the JPND Management Board. With this in mind, European Member States have identified these two areas of greatest need for targeted investment in order to delay progression or prevent ND and to improve the care provided for those living with these diseases and their carers. Professor Amouyel added This investment is part of a series of annual JPND funding initiatives over the next three years, aimed at addressing priority areas identified in our European Research Strategy. This years calls will see approximately 25 million euro made available to applicants from over 20 countries.
According to Professor Thomas Gasser, University of Tübingen and Chair of the JPND Scientific Advisory Board, these actions are an important step towards realising the ultimate goal of JPND finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases.
The following neurodegenerative diseases are included for both calls:
Alzheimers disease and other dementias
Parkinsons disease and PD?related disorders
Prion disease
Motor neurone diseases
Huntingtons disease
Spinocerebellar ataxia (SCA)
Spinal muscular atrophy (SMA)
Call 1: Assessing risk factors for ND The first call for proposals aims to attract international teams of researchers who will explore the different processes at work in normal aging versus neurodegenerative aging and determine what role genetic and environmental factors can play. Factors such as family history, gender, stress levels, nutrition and others, can affect an individuals risk, and provide protection from, or even resilience to, neurodegenerative diseases. However, it is likely that a combination of factors are involved, so a critical step will be to establish the relationship between genetic, epigenetic, environmental and social factors and their relative importance in order to identify those factors that can be changed or modified.
Modern research techniques have allowed researchers to create models of risk and protective factors. The aim of this call is to engage researchers to use these techniques and apply them to neurodegenerative diseases. The ultimate aim will be to use the knowledge generated to develop strategies that can delay or even prevent these diseases.
Call 2: Evaluating health and social care policies, strategies and interventions for ND It is widely accepted that better integration and coordination of approaches to health and social care across Europe would help to reduce costs and improve the quality of care for patients with ND and their carers. In order to tackle this issue, the first step has to be an assessment of the strengths and weaknesses of formal (e.g. hospitals) and informal (family- and home-based) care. Establishing what works best will create a firm foundation to support new initiatives that tackle inequality and inefficiency and build equal, fair and efficient health and social care systems for ND.
This call asks research teams to assess and compare the policies, strategies and interventions related to neurodegenerative disease care, with regard to quality, access and cost-effectiveness. Examples of areas to be evaluated include care pathways, psychosocial interventions, end-of-life strategies, and educational programmes that benefit not just persons with neurodegenerative diseases, but also their carers and families. The call will also seek proposals to improve the various outcome measures currently used to assess the impact of healthcare and social care interventions on the quality of life of patients and carers for example inclusion of the patients and carers perspective.
More information on the participating countries in both calls, in addition to specific grant practicalities is available athttps://www.neurodegenerationresearch.eu/initiatives/2012-joint-transnational-calls/open-calls/
Media enquiries should be directed to: Derick Mitchell[email protected]+353 1 2345103
JPND is inviting calls for proposals from research teams across Europe to increase understanding of the factors that put people at risk of developing neurodegenerative diseases such as Alzheimers and also to evaluate health and social care strategies for people living with these debilitating illnesses.
The incidence of Neurodegenerative diseases such as Alzheimers and Parkinsons is exploding due to aging populations, which are creating huge social, economic and healthcare impacts across the world according to Professor Philippe Amouyel, Chair of the JPND Management Board. With this in mind, European Member States have identified these two areas of greatest need for targeted investment in order to delay progression or prevent ND and to improve the care provided for those living with these diseases and their carers. Professor Amouyel added This investment is part of a series of annual JPND funding initiatives over the next three years, aimed at addressing priority areas identified in our European Research Strategy. This years calls will see approximately 25 million euro made available to applicants from over 20 countries.
According to Professor Thomas Gasser, University of Tübingen and Chair of the JPND Scientific Advisory Board, these actions are an important step towards realising the ultimate goal of JPND finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases.
The following neurodegenerative diseases are included for both calls:
Alzheimers disease and other dementias
Parkinsons disease and PD?related disorders
Prion disease
Motor neurone diseases
Huntingtons disease
Spinocerebellar ataxia (SCA)
Spinal muscular atrophy (SMA)
Call 1: Assessing risk factors for ND The first call for proposals aims to attract international teams of researchers who will explore the different processes at work in normal aging versus neurodegenerative aging and determine what role genetic and environmental factors can play. Factors such as family history, gender, stress levels, nutrition and others, can affect an individuals risk, and provide protection from, or even resilience to, neurodegenerative diseases. However, it is likely that a combination of factors are involved, so a critical step will be to establish the relationship between genetic, epigenetic, environmental and social factors and their relative importance in order to identify those factors that can be changed or modified.
Modern research techniques have allowed researchers to create models of risk and protective factors. The aim of this call is to engage researchers to use these techniques and apply them to neurodegenerative diseases. The ultimate aim will be to use the knowledge generated to develop strategies that can delay or even prevent these diseases.
Call 2: Evaluating health and social care policies, strategies and interventions for ND It is widely accepted that better integration and coordination of approaches to health and social care across Europe would help to reduce costs and improve the quality of care for patients with ND and their carers. In order to tackle this issue, the first step has to be an assessment of the strengths and weaknesses of formal (e.g. hospitals) and informal (family- and home-based) care. Establishing what works best will create a firm foundation to support new initiatives that tackle inequality and inefficiency and build equal, fair and efficient health and social care systems for ND.
This call asks research teams to assess and compare the policies, strategies and interventions related to neurodegenerative disease care, with regard to quality, access and cost-effectiveness. Examples of areas to be evaluated include care pathways, psychosocial interventions, end-of-life strategies, and educational programmes that benefit not just persons with neurodegenerative diseases, but also their carers and families. The call will also seek proposals to improve the various outcome measures currently used to assess the impact of healthcare and social care interventions on the quality of life of patients and carers for example inclusion of the patients and carers perspective.
More information on the participating countries in both calls, in addition to specific grant practicalities is available athttps://www.neurodegenerationresearch.eu/initiatives/2012-joint-transnational-calls/open-calls/
Media enquiries should be directed to: Derick Mitchell[email protected]+353 1 2345103
The COEN initiative has released its second call for proposals aiming to further catalyse collaborative research to drive a step change in neurodegeneration research.
The Network of Centres of Excellence in Neurodegeneration (COEN) initiative; aims to build collaborative research activity in neurodegeneration research across borders, focusing on the critical mass and excellence. COEN is aligned with JPND, although it operates as an independent entity.
The second COEN call for proposals will provide funds for Pathfinder grants for innovative approaches to better understand disease mechanisms and provide new avenues for therapeutic development, with the potential for programme level support to take forward successful Pathfinders.
The remit of the call is broad in scope: projects may include studies to understand neurodegenerative mechanisms, or create technological advances to support novel diagnostic or therapeutic approaches.
The call will be administered as for the previous COEN call, with partners funding research in their own country. Funds of £5m are available across this call.
More information can be found at the COEN website at the link below.
A systematic review has assessed the efficacy of Vitamin E in the treatment of Alzheimer’s and for the prevention of progression of mild cognitive impairment (MCI) to dementia.
The authors found no evidence for Vitamin E being of benefit in the treatment of Alheimer’s Disease or MCI. They recommend that future trials assessing Vitamin E treatments for Azheimer’s Disease should not be restricted to alpha-tocopherol.
A full copy of the cochrane review is available at the link below.
The first European report has been published of the state of deinstitutionalization and community-based care in the mental health field.
A joint initiative of the Open Society Foundations and Mental Health Europe, this report promotes a shift in the balance of care from psychiatric hospitals to a varied provision of services in the community for people with severe mental health problems.
More information at the link below (EPHA)
Johnson & Johnson, Merck and Eli Lilly plan to launch a one-stop database of global clinical trial sites
The clinical investigator database will contain key information such as infrastructure details and good clinical practice (GCP) training records.
For more information, click on the link below (Reuters)
Exposure to pesticides and head injuries together triples the risk of developing Parkinson’s disease, according to a new study.
More information at the link below (International Business Times)
The TREM2 gene, known to play a role in the immune system, triples the risk of developing Alzheimer’s
The findings, which are published in the New England Journal of Medicine on have the potential to be the most influential gene discovery for Alzheimers in the last two decades.
Funders for the study included the Medical Research Council (MRC) Alzheimers Research UK and the Wellcome Trust.
More information on the link below (Medical Research Council)
