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 share the changes we want to see and what we're doing to make a difference.
What we think about...
Dementia diagnosis
Getting a diagnosis can enable people living with dementia to plan for the future and gain access to care, symptomatic treatments, information, advice and opportunities to participate in dementia research. 91% of the people Alzheimer’s Society surveyed, in 2022, said they benefitted from getting a dementia diagnosis.
Yet over 300,000 people in England, Scotland and Wales do not have a diagnosis. This leaves them and their families at risk of crisis, such as unplanned hospitalisation, which can have an adverse effect on their health and wellbeing, as well as the wider health and social care system.
System preparedness for disease-modifying treatments
Recent research breakthroughs mean there are now disease-modifying treatments (DMTs) that appear to slow the progression of early-stage Alzheimer’s disease. Three such drugs are currently being assessed by regulators in the UK, and with over 100 Alzheimer’s disease drugs in clinical trials this year, we are likely to see more drugs emerging soon.
Thousands of people in the UK could potentially benefit from these new drugs if they’re approved for use, but the healthcare system is not yet ready to deliver them. This is why Alzheimer’s Society is calling on the NHS in England and Wales and HSC (health and social care) system in Northern Ireland to publish plans on how they intend to deliver new treatments. These plans must include investment in specialist diagnostic tests and the workforce required to ensure everyone with suspected Alzheimer’s disease can access a test that can confirm eligibility for treatment at an early stage in their disease progression.
Read more about our policy on system preparedness for disease-modifying treatments
We need to see clear action in the following areas:
- We need UK healthcare systems to publish plans for how they intend to deliver DMTs. These plans must include investment in specialist diagnostic tests and investment in the workforce required to support the DMTs pathway – including carrying out and analysing results of diagnostic tests, administering the drugs, and monitoring during treatment.
- This must be supported by at-pace expansion of diagnostic capacity so that people with Alzheimer’s disease are able to receive a diagnosis at an early stage of disease progression, without facing long waiting times.
- Improved access to an early and accurate diagnosis, including information on the type of dementia a person has, is beneficial for everyone – not just those who may be eligible for DMTs.
Social care
The current social care system is not set up properly to deliver care that meets the needs of people living with dementia. Decades of underfunding and neglect by successive governments has resulted in care that is costly, difficult to access, and too often not personalised to meet people’s needs. Too often unpaid carers lack the support they need.
There is hope for the future for dementia with disease-modifying treatments in development, but we must also focus on help for today and for those who will not be eligible for such drugs. Many people living with dementia will continue to be reliant on the social care system to help manage their symptoms. They will continue to require accessible, high-quality, affordable, personalised care. It is therefore vitally important that the current and future care system is fit for purpose.
We need to see clear action on:
A sustainable funding model for quality personalised care which pools the risk of care costs.
A long-term social care workforce strategy in each nation that delivers a sustainable and supported workforce with the knowledge and understanding of dementia to provide high quality, personalised dementia care.
Improved support for unpaid carers through assessments and appropriate breaks.
Animal Testing
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. Read our full position.
Assisted dying
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
Become an influencer
We work to give people affected by dementia a voice. Find out how you can help us influence change in your local area.
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We need to see clear action on: