Dementia Support Line
Our position on key dementia challenges
Learn about our policy work and what we stand for on a wide range of issues related to dementia.
We're making change happen
Dementia diagnosis
Getting a diagnosis can help people living with dementia to plan for their future and gain access to care, treatments to manage symptoms, information, advice and opportunities to participate in dementia research.
Over 90% of people surveyed by Alzheimer’s Society said they saw a benefit to getting a diagnosis.
But over a third of people living with dementia in England and Northern Ireland, and nearly half of people living with dementia in Wales, do not have a diagnosis. This leaves them, and their families, without vital care, support and treatment, at risk of crisis.
Read more about our work on diagnosis.
Getting ready for disease-modifying treatments
Breakthroughs in dementia research mean there are now disease-modifying treatments (DMTs) which can slow the progression of early-stage Alzheimer’s disease.
DMTs have the potential to transform the lives of people with dementia. However, the NHS isn’t ready to deliver them.
Preparing for the delivery of these new treatments will take time and it’s vital that the changes that will also benefit people living with dementia today, start now.
Two drugs, lecanemab and donanemab, have been approved by UK regulator, the Medicines and Healthcare products Regulatory Agency (MHRA), marking a milestone for Alzheimer’s disease. However, they’ve not been recommended for use in the NHS in England or Wales by the National Institute for Health and Care Excellence (NICE), or for use in the health care system in Northern Ireland. This is due to them not meeting the NICE threshold for cost effectiveness.
In other diseases, like cancer, treatments have become more effective, safer and cheaper over time. With over 100 Alzheimer’s disease drugs in clinical trials, we hope to see the same progress for dementia.
We need to see clear action in the following areas:
- Governments across the UK must commit to long-term investment in dementia diagnosis, recognising that improving dementia diagnosis is vital to being ready for the DMTs of the future.
- This investment in diagnosis will also deliver benefits for people living with dementia today, as a diagnosis unlocks access to information, care and support to help manage symptoms and reduce risk of crisis.
- National and local healthcare leaders should prioritise improvements in dementia diagnosis, to increase the number of people who get a diagnosis and who get a diagnosis at an early stage of the disease progression.
- National and local healthcare system leaders across England, Wales and Northern Ireland should have agile plans in place for delivering DMTs and should review the status of these plans on a regular basis. This should be informed by all the relevant evidence to ensure appropriate preparedness.
Read more about our policy for disease-modifying treatments.
Social care
Getting social care right for people with dementia and those who care for them is vital, yet currently social care systems across England, Wales and Northern Ireland are not delivering for people living with dementia, or their carers.
Our vision is for people living with dementia in England, Wales, and Northern Ireland to be able to easily access affordable, high quality social care that meets their specialist needs, delivered by a well-trained workforce.
We also want to see unpaid carers receive the statutory support to which they are entitled, and for them to be able to take breaks through access to dementia-specific respite care.
Through investment and prioritisation in the right areas, we can make significant progress towards achieving this vision.
What we want to see for social care
- A well supported, professional social care workforce, trained in dementia.
- More support for unpaid carers.
- More investment and fairer funding.
Read more about our position on social care.
Our position on other areas
The subject of assisted dying triggers strong feelings for many people. While we appreciate that this is a heavily debated subject in our society, this is not an area that our charity works upon actively. Our focus is on giving help to those living with dementia today through our services, and providing hope for the future through our research and our influencing on diagnosis, social care and research policy. We will continue to monitor discussion and debate around the Terminally Ill Adults (End of Life) Bill.
We believe that people with dementia are entitled to good quality end-of-life care and should receive the treatment and care that best meets their individual needs and wishes.
People with dementia have the right to refuse treatment at the end of life. Professionals should be open to discussing end-of-life care at any stage of a person’s dementia pathway, including, where relevant, the options of advance care planning and advance decisions to refuse treatment, which are available under the current law.
More information on the help and support available at the end of life.
Alzheimer’s Society is a member of the Association of Medical Research Charities (AMRC) and supports its position statement on the use of animals in research.
We recognise the importance of the pharmaceutical and medical technologies industry in dementia research and have clear commitments for any work we undertake in partnership with the med-tech sector.
We commit to following a clear policy to ensure we maintain our integrity and independence, as well as transparency in our relationships. All partnerships must bring progress and benefit to people affected by dementia, today and in the future.
Our key commitments when working with the pharmaceutical and medical technologies industry include:
- Upholding our principles of independence and impartiality
- Being open and transparent
- Responsible partnerships and financial support.
We need to see clear action to: