All party parliamentary group on dementia: Five dementia priorities for the next Government

All party parliamentary group on dementia: Five dementia priorities for the next Government

FOREWORD The UK has much to be proud of in the progress made on dementia over the past decade. Both the previous Labour administration and current coalition government have made significant strides towards improved awareness and understanding of dementia and a better quality of life for people with the illness and their families. But the hard truth is that life is still very difficult for people with dementia and their carers. The All-Party Parliamentary Group (APPG) on Dementia is at the forefront of policy debates on dementia. We have influenced the government in a number of areas, such as the use of antipsychotic drugs, which fell dramatically after our inquiry, Always a last resort. We also influenced the content of England s first National Dementia Strategy. We ensure our work is rooted in what people with dementia want and need, and regularly hold meetings in parliament to give people with dementia and their carers the chance to hear from and question leaders in health in the UK. We are calling on the next government, of whatever colour, to maintain the momentum that has been generated over the last five years. Last year saw the end of the National Dementia Strategy for England (NDSE) and the Prime Minister s Challenge on Dementia will finish in March. There is no doubt that a new, more ambitious national dementia plan will be required, with the highest level of leadership, to take forward the change people with dementia need and deserve. The five areas identified here should be included in any new national plan. Whilst not exhaustive, they are achievable, practical suggestions that, if implemented, will considerably improve the lives of people living with dementia now and provide hope for those affected in the future. Baroness Greengross OBE Tracey Crouch MP Rt Hon Hazel Blears MP Co-chairs of the APPG on Dementia

1 Research Increase investment in research into and the search for a cure Finding a cure for dementia is of upmost importance. We hope that one day there will be a world without dementia. However, dementia research has suffered from a chronic lack of investment for far too long. A sustained increase in dementia research is needed to search for a cure and find a disease-modifying treatment by 2025, in line with the G7 commitments. By the time of the general election there will be 850,000 people living with dementia in the UK. 1 They are unlikely to benefit from current biomedical research, so it is vital that we see increased investment in dementia care research to improve their quality of life. Research into dementia care will always be important it is not just a stopgap until we find a cure. We call on the government to increase investment in dementia research from 66m in 2015 to at least 132m by the end of the next parliament. With the number of people living with dementia set to rise to almost one million by 2020, it is vital that this includes a proportional increase in the amount invested in care research. Increased public funding will in turn generate additional private investment evidence shows that for every 1 of government investment in research, the private sector invests around 5. Remove regulatory barriers to the development of new drugs From our conversations with industry, we know that a number of regulatory barriers make breakthroughs in dementia research harder to achieve. The government must create the best environment possible for research to thrive and play its part in facilitating conversations to enhance the international regulatory regime and speed up the process. We call for a commitment from government to work with regulatory authorities in the UK and other countries to agree new avenues that will encourage investment in drug discovery. By the time of the General Election in 2015 there will be 850,000 people living with dementia 1. http://www.alzheimers.org.uk/dementiauk, Alzheimer s Society, 2014

2 Diagnosis and post-diagnosis support Raise the ambition on dementia diagnosis Despite a significant increase in dementia diagnosis rates, too many people with the illness still do not receive a formal diagnosis, denying them access to potential treatment and support to help them live well with the condition. At the start of this parliament, only 33% of people with dementia were getting a formal diagnosis. In England, the NHS aims to increase this to 66% by March 2015, although whether this target will be met remains to be seen. We call on the government to go beyond the 66% diagnosis ambition and look to ensure that, by 2017, 75% of people living with dementia have a diagnosis. This will give thousands more people the certainty of a diagnosis, allowing them to plan for the future and access potential treatment, care and support. Make post-diagnosis support a priority While it is crucial to ensure more people with dementia get a diagnosis, it is also vital to ensure they have access to the follow-up care and support services they need. With the right information and support, people can live well with dementia. However, throughout our in-depth inquiries and at the many events we hold in parliament, we regularly hear from people with dementia and their carers about the lack of support they received after their diagnosis. We call on the government to introduce a minimum standard of post-diagnosis support services for people with dementia. This would mean everyone having access to a support worker, such as a care co-ordinator or dementia adviser, after their diagnosis. The support worker s role would be to signpost people with dementia and carers to local services, provide emotional support to help them come to terms with the diagnosis and help them to plan for the future.. Dementia costs the UK economy 26.3bn each year

3 The dementia workforce Increase the status and pay of staff working in dementia-related roles across the spectrum A key change is needed in the status of people working across the field of dementia. There are huge numbers of talented individuals doing outstanding work across the sector, from care workers providing excellent personalised care to researchers working at the cutting edge of science or Admiral Nurses helping families at the end of a person s dementia journey. Looking after our older people should be seen as the highest calling, with those dedicating their lives to the search for a cure for dementia held in similar high regard. In our report, The National Dementia Strategy: Change, progress and priorities, published last year we called for a major culture shift to improve the status and morale of care work. We want to see this replicated across the sector in order to attract the very best people to dementia-related roles and give those working to improve the lives of people with dementia, whatever their profession, the recognition and reward they deserve. We call on the government for sustained investment in the recruitment, education and training of the dementia workforce to ensure the very best individuals are caring for our vulnerable older people. This should mean everyone working in the sector being paid at least the living wage.. 4 Carers Introduce a carers test for government policies Dementia doesn t just affect the person with the illness. It has a huge impact on their family members too in particular those who take on a caring role. Research from Alzheimer s Society shows that dementia costs the UK economy 26.3bn each year. 2 People with dementia, their families and carers pick up a staggering 17bn of these costs. They are regularly forced to dip into their savings to pay for day-to-day care costs, and often to cover the cost of a family member giving up work in order to provide unpaid care. For too long, carers of people with dementia have been the forgotten heroes, looking after their loved ones through challenging circumstances, often with little or no support. Without them, our health and social care system simply wouldn t be able to cope. The Care Act, which covers England, passed in this parliament enshrines in law the right of every carer to a carer s assessment. This is a good step forward and we commend the government for this piece of legislation. However, the needs of dementia carers are specific and unique, and many carers remain unsupported. For this to change, an in-depth understanding of carers needs must be integral to the development of policies that are designed to improve the lives of people with dementia. We call for the introduction of a carers test for all dementia-related Department of Health policies. Simple questions should be asked to ensure that the needs of carers are always considered when such polices are drafted. In addition, channels should be set up to enable discussions between policy makers and carers, so that carers can inform dementia policy at the drafting stage. 2. http://www.alzheimers.org.uk/dementiauk, Alzheimer s Society, 2014

5 Dementia-friendly Communities Every public sector organisation to commit to becoming dementia friendly The scale of the dementia challenge calls for a response not just from policy makers, but from society as a whole. We know from talking to people with dementia and their carers that it is possible for those with dementia to play an active part in their local community. However, far too many people living with the illness do not currently do so. Research shows that nearly 50% of people diagnosed with dementia only go out to do things in their local area once a week or less. 3 Things are moving in the right direction. During this parliament, over 70 communities across the UK are committed to becoming dementia friendly. Alongside this, the Dementia Friends programme run by Alzheimer s Society aims to recruit one million dementia friends by 2015. This will mean a million more people will have a greater understanding of dementia and the small things they can do to make a difference to a person s life. The UK Parliament has also committed to becoming the first dementia friendly Parliament in the world. The initiative aims to increase awareness and understanding of dementia among MPs, Peers, their staff and staff across the parliamentary estate. However, more can be done to make sure that our communities, businesses and civic organisations are set up to be truly dementia friendly. We call for all public sector organisations to follow parliament s lead and commit to becoming dementia-friendly organisations. Nearly 50% of people diagnosed with dementia only go out to do things in their local community once a week or less. 3. http://www.alzheimers.org.uk/dementiauk, Alzheimer s Society, 2014

About the APPG The All-Party Parliamentary Group (APPG) on Dementia is a group of cross-party parliamentarians with an interest in dementia. It was created to build support for dementia-related issues and encourage it to become a publically stated health and social care priority in order to meet one of the greatest challenges presented by our ageing population. APPG on Dementia Officers Baroness Sally Greengross OBE Tracey Crouch MP Rt Hon Hazel Blears MP Stephen Lloyd MP Rt Hon David Blunkett MP Rt Hon Paul Burstow MP Debbie Abrahams MP Tim Farron MP Mike Hancock MP Co-chair Co-chair Co-chair Acknowledgements Alzheimer s Society provide the Secretariat to the All Party Parliamentary Group on Dementia. The Group would like to thank Alzheimer s Society for its assistance in organising this work in 2015. We would like to thank Sam Gould, Senior Public Affairs and Campaigning Officer for writing the manifesto and Methela Haque, Public Affairs and Campaigning Assistant for organising and supporting the meetings.