Launched on 20 September, the report combines analysis of the world’s largest survey on attitudes to dementia, as well as expert essays and case studies from across the world, including from NDAA’s own Campaign and Partnerships Manager – Sarah Tilsed. It concludes by providing some recommendations for governments, agencies, civil society, and policy-makers, to improve the experiences of people living with dementia, their carers and loved ones, across the globe.
About the report
The report reveals the results of the largest attitudes to dementia survey ever undertaken, with almost 70,000 people across 155 countries and territories completing the survey. It spans four demographic groups: people living with dementia, carers, healthcare practitioners and the general public. Analysis of the survey was carried out by the London School of Economics and Political Science (LSE). We intend for the data to form a baseline from which to measure the efficacy of awareness campaigns such as World Alzheimer’s Month and monitoring attitudinal change.
The report reveals astonishing attitudes towards dementia:
- Almost 80% of the general public are concerned about developing dementia at some point and 1 in 4 people think that there is nothing we can do to prevent dementia
- 35% of carers across the world said that they have hidden the diagnosis of dementia of a family member
- Over 50% of carers globally say their health has suffered as a result of their caring responsibilities even whilst expressing positive sentiments about their role
- Almost 62% of healthcare providers worldwide think that dementia is part of normal ageing
- 40% of the general public think doctors and nurses ignore people with dementia
The report reveals that stigma around dementia is preventing people from seeking the information, advice, support and medical help that could dramatically improve the length and quality of life for people living with dementia. The survey findings are brought to life by 40 expert essays and case studies, which contextualise the scope and scale of the global challenge we face.
These findings are powerful in themselves, but they need to stimulate action.
The report’s key calls-to-action:
- Governments and agencies must implement public health awareness campaigns which should be targeted and include indicators for measuring their effectiveness, in line with action area 2 of the WHO global action plan on dementia.
- Governments must provide services to enable timely diagnosis and better post diagnostic support for people with dementia.
- Civil society, policy-makers and local governments should contribute to the evolution of dementia friends programmes and dementia friendly/inclusive communities – with people living with dementia and carers at the heart of their design, implementation and evaluation.
- All stakeholders must create an enabling environment for public advocacy of people living with dementia and carers to amplify the voice of the lived experience.
- Governments, in consultation with civil society and people with dementia, must develop specialised education about dementia-related stigma and person-centred care practice for healthcare practitioners.
- Local governments must work to increase the funding, range and quality of community services for people living with dementia.
- Policy-makers must make changes to policies relating to employment, health and insurance for both people living with dementia and their carers
- All stakeholders must embrace a rights-based approach to dementia including full compliance with the Convention on the Rights of Persons with Disabilities (CRPD).
- A minimum 1% of the societal cost of dementia to be devoted to funding dementia research including basic science, care improvements, prevention and risk reduction, drug development and public health; and in better understanding and combating stigma.