“Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study” has been published in BMC Health Services Research. This research was supported by JPND through the Actifcare project, selected under the 2012 healthcare call.
“Supportive and symptomatic management of amyotrophic lateral sclerosis“ has been published in Nature Reviews Neurology. This work was supported in part by JPND through the ALS-CarE project, selected under the 2012 healthcare call.
At a recent meeting in Amsterdam, members of the JPND Management Board, which is the decision-making body of JPND, were invited to tour Reigershoeve, a patient-centered residential ‘care farm’ for people living with dementia.
Located in Heemskerk, about a half hour northwest of Amsterdam, Reigershoeve is home to 27 people living with dementia, according to Dieneke Smit, who started the care farm with her father, Henk Smit. The property includes a farm with animals, an art studio, a greenhouse and vast gardens. Residents are grouped into smaller homes, and are encouraged to help cook, clean and maintain the property in a community-living environment.
Thank you to Dieneke and the rest of the Reigershoeve community for welcoming the JPND Management Board and showing us around! To learn more about Reigershoeve, visit the website.
Today the Lancet Neurology Commission released a major report detailing the state of research and patient care for Alzheimer´s disease and other dementias and providing recommendations for the future. The conclusion: A concerted effort and long-term economic commitment are critical to meeting the global challenge of Alzheimer’s disease and other dementias.
The comprehensive report, which was the result of a collaborative effort between more than 30 leading researchers from around the world, will also be presented to the European Parliament Commissioners today in Brussels.
The Lancet Neurology Commission, initiated by Lancet editors, is led by Professor Bengt Winblad of the Center for Alzheimer Research at the Karolinska Institutet in Sweden. Winblad is also a member of the JPND Scientific Advisory Board and was the coordinator of BIOMARKAPD, a JPND project on Biomarkers for Alzheimer’s disease and Parkinson’s disease. Three other members of the JPND Scientific Advisory Board, Prof. Martin Knapp (United Kingdom), Prof. Bruno Dubois (France), and Prof. Philip Scheltens (Netherlands), as well as the Chair of the JPND Management Board, Prof. Philippe Amouyel, participated as experts in this report. The commission was formed with the aim of providing expert recommendations and information to politicians and policymakers about Alzheimer´s disease and related dementias.
The report encompasses the fields of health economics, epidemiology, prevention, genetics, biology, diagnosis, treatment, care and ethics. To reduce the burden of dementia, the commission advocates that public governmental agencies form large multinational partnerships with academic centres and pharmaceutical companies to deploy capital resources and share risk.
“To defeat Alzheimer’s disease and other dementias, united actions are needed, not only within research, but also within the political arena on all levels,” said Winblad. “My hope is that our work will stimulate increased national and international collaboration.”
Alzheimer’s, the most common form of dementia, accounts for approximately 60 percent of cases. The most important risk factor is age, and as life expectancy increases, the number of people with dementia is also expected to rise. In 2015, almost 47 million individuals around the world were estimated to be affected. By 2030, the number is expected to reach 75 million. By 2050, up to 131 million people are expected to be burdened by the disease. So far, no treatment is available to effectively halt or reverse the disease.
Alzheimer’s disease and related disorders are one of the major targets of JPND, which as the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases is cited in the report as an example of the sort of action needed to make meaningful progress. “To speed up progress even more, ” the report asserts, “this global collaboration must be extended to even more countries.”
For Winblad, the onus is now on governments to take action — and quickly: “What we need now is for the politicians to realise that this is a growing problem that already costs society tremendous amounts of money,” he said. “We need investments of resources in research in all areas involved in this disease, to find better drugs, but also to improve compassionate care and prevention.”
Experts in innovation in care and risk reduction recently met at the third Global Dementia Legacy event in Japan to explore how new technology can improve the lives of those with dementia, as well as looking at whether lifestyle choices can reduce the risk of developing dementia.
JPND chair, Philippe Amouyel presented JPND approaches in this area on day two of the conference. His slides can be viewed at the link below.
The fourth, and final legacy event will take place in Washington, DC, USA in February 2015.
In the UK, to support clinical and care staff, managers and estates colleagues, the King’s Fund has produced a range of resources to enable hospitals, care homes, primary care premises and specialist housing providers to become more dementia friendly.
The work that informed the initial development of the resources, the EHE dementia care programme, was funded by the Department of Health to support the implementation of the National Dementia Strategy and the Prime Minister’s ‘Challenge on Dementia’.
The EHE programme is designed to improve the environment of care for people with dementia. It involved 23 teams from acute, community and mental health NHS trusts who worked on a range of projects across the dementia care pathway and sought to make hospital environments less alienating for people with cognitive problems. Projects have demonstrated that relatively inexpensive interventions, such as changes to lighting, floor coverings and improved way-finding, can have a significant impact. Evaluation has shown that environmental improvements can have a positive effect on reducing falls, violent and aggressive behaviours, and improving staff recruitment and retention. The EHE schemes are already showing that it is possible to improve the quality and outcomes of care for people with dementia as well as improve staff morale and reduce overall costs by making inexpensive changes to the environment of care.
The King’s Fund has also published on Sept. 4th 2014, the final report of the Commission on the Future of the Health and Social Care in England (the Barker report). “A New Settlement for Health and Social Care, relations between health and social services”, makes a plea for “better integration” and warns of “hard choices” ahead.
The Dementia Friendly Communities programme, run by the Alzheimer’s Society UK, focuses on improving inclusion and quality of life for people with dementia.
The programme’s five year strategy includes a key ambition to work with people affected by dementia and key partners to define and develop dementia friendly communities.
It has produced a number of films to highlight the programme’s work.