Campaign reports

Alzheimer's Society produces reports, briefings and other helpful tools as part of our work as a campaigning organisation. We also regularly carry out surveys to inform our campaigning work. You can find and download these documents using the links below.

Our reports

2017

  • Turning Up the Volume: unheard voices of people with dementia is a report containing the findings from Alzheimer’s Society’s largest-ever survey with people with dementia to hear their views and experiences of what daily life is like. This ambitious and innovative piece of research, conducted by Ipsos MORI, has people affected by dementia at its heart. Through their words you’ll hear the real story of what it’s like to live with dementia, or be an unpaid carer, in England, Wales and Northern Ireland today. The findings from this research also informed the refreshed Dementia Statements which are contained within the report. These statements reflect the things people with dementia say are essential to their quality of life - identity, care, community, carers and research. You can read about these in the report
  • Dementia in rural Wales: the lived experiences. Over 17,000 people affected by dementia live in rural Wales, yet they face barriers and challenges to accessing specialist support. Our lived experiences report uncovers what support looks like for people affected. 

2016 

  • Fix Dementia Care: Hospitals. Produced as part of our Fix Dementia Care campaign, this report looks at the quality of care people with dementia receive in hospitals throughout England.  Our report looks at the problems people affected by dementia can face on admission to hospital, the care they receive throughout their stay, the issues they can face on discharge, and the disturbing trend of falls among patients with dementia. We have discovered that poor dementia care is widespread, that the quality of care varies widely between hospitals and that millions of pounds are being wasted on substandard care.
  • Fix Dementia Care: NHS and care home report. The second phase of our Fix Dementia Care campaign, this report looks at the experiences of people with dementia in a range of health and care settings. It uses data from a survey of nearly 300 care home managers and the voices of people with dementia, their friends and families. It sets out recommendations for the government and NHS to improve the experiences of people with dementia in care homes. We will continue to campaign to ensure they are implemented.
  • Fix Dementia Care: Homecare. This report marks the third phase of Fix Dementia Care campaign and looks at the experiences of people affected by dementia in a range of health and care settings. It contains the results and stories from one survey of people affected by dementia with experience of homecare, another survey of homecare workers and a Freedom of Information request to local authorities in England. It sets out recommendations for key influencers – including local and central government and regulators to – improve the experiences of people affected by dementia in receipt of homecare and Alzheimer’s Society will be campaigning to ensure they are implemented.
  • Dementia in rural Wales (English) and Dementia yng Nghymru gwledig (Welsh). Alzheimer's Society calculates that of the 45,000 people with dementia in Wales, 17,000 live in a rural area and rurality brings about an additional set of challenges for people affected by dementia. This report brings a series of interviews that highlights the challenges faced by people living with dementia in rural areas of Wales and suggests six recommendations to tackle this problem.

2015

  • Dementia 2015: Aiming Higher to Transform Lives. This is our Policy team's annual report. It provides a comprehensive summary of the key issues affecting people with dementia in England in 2015, using the Prime Minister's Challenge on Dementia as a reference point for progress. It provides a comprehensive summary of the key issues affecting people living with dementia and their carers, and highlights the changes that need to be made in order to improve their quality of life. 
  • The Dementia Promise. This is our 2015 general election manifesto. It highlights the key pledges that the political parties need to make in order to ensure that their government can have a positive difference to the lives of people living with dementia.
  • Diagnose or disempower?. Report examining new evidence about the experiences of people receiving a diagnosis of dementia in Wales.
  • 20,000 reasons campaign manifesto. It was developed in the run up to the Northern Ireland Assembly Elections in May 2016.  It focused on 5 priorities for action on dementia which would improve the lives of the 20,000 people with dementia in NI.  This document makes the case for change and calls on political parties and the incoming Executive to reflect priorities for action in the developing programme for government. 

2014

  • Dementia UK: Second edition.  This report looks at the social and economic impact of dementia in the UK, it updates data on prevalence and cost from the 2007 report.
  • Dementia 2014: Opportunity for change. This report provides a comprehensive summary of the key issues affecting people with dementia, explores how well they are living and details the changes that need to be made to improve their quality of life.
  • Northern Ireland Right to know campaign booklet. It makes the case for people with dementia to have timely diagnosis and access to post diagnosis support. It includes brief case studies demonstrating the value to people affected by dementia of having direct access to a dementia support worker from diagnosis to the end of life.
  • Dementia UK Northern Ireland Summary. It expands on findings from Dementia 2014- Opportunity for change report. It focuses on the specifics of Northern Ireland  including the integrated health and social care system, the variable quality of care in Northern Ireland and work underway to build dementia- friendly communities.  It makes 14 recommendations for action. 

2013

2012

  • Dementia 2012- A national challenge. This report describes how well people are living with dementia in 2012 in England, Wales and Northern Ireland. It is the first of what will be annual reports charting progress and action on dementia.

2011

2010

  • The Dementia Tax 2011. A survey with over 3,700 people with dementia and carers in 2011 asked for people's experiences and views in relation to insurance for social care. It found that just three per cent of people with dementia have long term care insurance.

2009

  • Counting the cost report. This report is part of our Putting care right campaign and looks into the care and support that people with dementia receive on hospital wards.
  • Listening well report. The Listening Well report documents 1:1 interviews with people with dementia and focus groups which included people with dementia and family carers.  The research was undertaken to inform the developing Dementia Strategy for Northern Ireland.  

2008

  • Dementia: out of the shadows. This report is about the impact that stigma can have on the lives of people with dementia.
  • The Dementia Tax 2008 - Charging people with dementia for inadequate care: The evidence for change. This report looks into the types of care that people with dementia receive and the amount that they pay for care.

2007

  • Home from home report. This report is part of our Putting care right campaign and looks into the care that people with dementia receive in care homes.
  • Dementia UK. Our dementia UK report looks at the social and economic impact of dementia on the UK.

All Party Parliamentary Group reports

  • A misspent opportunity. This report examines the progress made towards the implementation of the National Dementia Strategy for England.