Hidden no more: dementia and disability

All-Party Parliamentary Group on Dementia, June 2019

All-Party Parliamentary Group on Dementia report that identifies that according to domestic law and international convention, dementia is a disability. Thousands of people who responded to an All-Party Parliamentary Group (APPG) inquiry agreed that they see dementia as a disability. But they told the APPG that society is lagging behind and failing to uphold the legal rights of people with dementia. The evidence reveals that, across the country, people with dementia are not having their disability rights upheld. This report seeks to highlight the human impact that this has on people living with dementia. It focuses on themes of equality, non-discrimination, participation and inclusion.

Click here to view the full report.

Limbic-predominant age-related TDP-43 encephalopathy (LATE): consensus working group report

Brain, awz099, https://doi.org/10.1093/brain/awz099
This study describes a recently recognized disease entity, limbic-predominant age-related TDP-43 encephalopathy (LATE). LATE shares similar symptoms to Alzheimer’s disease, but it is a distinct disease linked to different brain proteins.  Interventions designed for Alzheimer’s disease will therefore be ineffective for LATE.  Developing an understanding of LATE will hopefully lead to new avenues of research into dementia treatments and care.
Click here to access the paper.

Exploring dementia and agitation: how public policy needs to respond

International Longevity Centre UK, March 2019
The MARQUE (Managing Agitation and Raising Quality of Life in Dementia) project is the largest ever study involving people living in care homes.  The study examined critical issues for people living with dementia and their paid and unpaid carers, particularly around the challenges of agitation. This report summarises a number of key findings from the study and makes recommendations for how public policy should respond.
Click here to view the full report.

Independent Evaluation Of The Guinness Partnership’s Dementia Project

Housing LIN, November 2018
Evaluation of the progress made in becoming a more dementia-friendly organisation. The Guinness Partnership implemented a two year project in 2015 to take forward developments, initially in two pilot areas of Havant and Manchester with a view to rolling out successful approaches more broadly.
Click here to view the full report.

Assessing the Preparedness of the Health Care System Infrastructure in Six European Countries for an Alzheimer’s Treatment

RAND Corporation, October 2018
This research analyzes the preparedness of the health care systems in six European countries — France, Germany, Italy, Spain, Sweden, and the United Kingdom — to ensure timely diagnosis and treatment of patients if a disease-modifying therapy for Alzheimer’s becomes available. It finds:

  • The burden of Alzheimer’s disease in high-income countries is expected to approximately double between 2015 and 2050. Recent clinical trial results give hope that a disease-modifying therapy might become available in the near future. The therapy is expected to treat early-stage patients to prevent or delay the progression to dementia.
  • This preventive treatment paradigm implies the need to screen, diagnose, and treat a large population of patients with mild cognitive impairment. There would be many undiagnosed prevalent cases that would need to be addressed initially, and then the longer-term capacity to address incident cases would not need to be as high.
  • We use a simulation model to assess the preparedness of the health care system infrastructure in six European countries — France, Germany, Italy, Spain, Sweden, and the United Kingdom — to evaluate, diagnose, and treat the expected number of patients.
  • Projected peak wait times range from five months for treatment in Germany to 19 months for evaluation in France. The first year without wait times would be 2030 in Germany and 2033 in France, and 2042 in the United Kingdom and 2044 in Spain. Specialist capacity is the rate-limiting factor in France, the United Kingdom, and Spain, and treatment delivery capacity is an issue in most of the countries.
  • If a disease-modifying therapy becomes available in 2020, we estimate the projected capacity constraints could result in over 1 million patients with mild cognitive impairment progressing to Alzheimer’s dementia while on wait lists between 2020 and 2050 in these six countries.

Click here to view the full report.