All Party Parliamentary Group | June 2019 | Hidden no more: Dementia and disability
A new report from the All Party Parliamentary Group aims to shine a spotlight on dementia as a disability, to enable people with dementia to assert their rights to services and for their rights as citizens to be treated fairly and equally. Thousands of people who responded to the 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. Within the report the All Party Parliamentary Group identify six key areas for action which have a direct impact on people’s daily lives, these are:
Today, 21 September 2018, is World Alzheimer’s Day. Coinciding with this, Alzheimer’s Disease International have released the World Alzheimer Report 2018: The State of the art of dementia research: New frontiers.
This report is written to be of appeal to a broad audience including governments and policymakers, academics and researchers and the general public with an interest in dementia.
Essentially the report is an overview of where we are currently: the hopes and frustrations, the barriers, the enablers and the ground-breaking work being undertaken.
The report’s key calls-to-action:
Improving the sharing, using and disseminating of data and using registries in the best possible way.
A minimum 1% of the societal cost of dementia to be devoted to funding research in: basic science, care improvements, prevention and risk reduction, drug development and public health.
Attracting researchers and skill to the sector
Increasing the scale of new research with the global ratio of publications on neurodegenerative disorders versus cancer at just 1:12
Involvement of people in low- and middle-income countries (LMICs) in the research process.
Encouraging innovation, the use of technology and entrepreneurship.
To support the 2018 World Alzheimer’s Month campaign, Alzheimer’s Disease International (ADI) in partnership with ITN Productions have released the documentary film below ‘Every 3 seconds’ to help raise awareness of global impact of dementia:
Alzheimer’s Society warns of generations unprepared for astronomical dementia costs
This report contains the findings of a consultation with people affected by dementia. It reveals that nearly half of the UK adults questioned had not started saving for the care and support they might need in the future, and a third agreed that before being asked, they had not considered the cost of dementia care and support. It brings together the views of more than 3,850 people with dementia, carers and the public, in a series of in-depth interviews and face-to-face and online surveys.
This report marks the second phase of an Alzheimer’s Society campaign looking at the experiences of people with dementia in a range of health and care settings. It contains the results of a survey of care home managers and the voices of people with dementia, their families and carers. The report sets out recommendations for the government and NHS to improve the experiences of people with dementia in care homes.
Alzheimer’s Society wants to ensure that people with dementia receive the highest standards of care wherever they are: in hospital, in a care home, or in the home. Our latest report has uncovered some shocking examples of dangerous and inadequate care in hospitals throughout England.
Hospitals have a duty to be transparent and accountable to their patients, and to continually monitor and improve dementia care.
While there are notable examples of excellent care across the country, the difference from one hospital to the next is far too great and there is inconsistent understanding of the needs of people with dementia.
Our campaign is making the following recommendations to fix dementia care:
All hospitals to publish an annual statement of dementia care, which includes feedback from patients with dementia, helping to raise standards of care across the country
The regulators, Monitor and the Care Quality Commission to include standards of dementia care in their assessments
Patient benefits include: 100 per cent appointment attendance rates, minimal delays, reduced A&E care, less use of mental health services, reduction of fear and stigma, accessibility, choice, specialist tests close to home, only giving information once and having clear agreed care plans.
The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends’, released this month, has found that there are currently around 46.8 million people living with dementia around the world, with numbers projected to nearly double every 20 years, increasing to 74.7 million by 2030 and 131.5 million by 2050. There are over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds.
The report shows that the current annual societal and economic cost of dementia is US $818 billion, and it is expected to become a trillion dollar disease in just three years’ time. The findings show that the cost of dementia has increased by 35% since the 2010 World Alzheimer Report.