To capture the recent experiences of people affected by dementia in Northern Ireland, Wales and England, the Alzheimer’s Society commissioned a 2025 survey to uncover where significant gaps in care, diagnosis and public awareness are still present. With comparisons to the survey conducted the year before, feedback was collected between February and March 2025 from 3,487 people with experience of dementia, as well as from 15 interviews carried out with a more diverse group to provide greater detail on some of the questions presented.
Encompassing four main themes, the survey yielded the following highlights:
• Experiencing dementia leads to negative emotions including anxiety, confusion and loneliness. Whether living with the symptoms of dementia, or caring for someone who is, 76% reported a lack of independence in carrying out daily tasks. It also brings a decline in physical and mental health, hobbies, self-confidence and family relationships.
• The dementia diagnosis process is often long and stressful, delaying access to support. Poor communication and limited information leave many people unaware of the help available.
• Access to social care remains a major challenge, with fewer than one in three people finding it easy to access and nearly half unsure who to contact for help. Over half rely solely on family or friends, while satisfaction among unpaid carers is low, highlighting the need for more support in the early stages of dementia and better training for carers.
• Inequalities in the availability of dementia treatments and therapies is ongoing. One in five people have not been offered medication, and nearly a third miss out on non-drug interventions. Yet those who receive support report better well-being and confidence, highlighting the need for more consistent and equitable provision.
The report revealed that dementia continues to have a profound impact on individuals with a formal diagnosis or living with dementia symptoms, as well as on unpaid carers and people who know someone close to them living with dementia. By consulting those directly affected, there is more comprehensive understanding of complex everyday challenges being faced and crucial support to unmet needs. In addition, only 25% believe that dementia is a priority for government and health services. While this has increased slightly since 2024, it remains a minority view, highlighting persistent concerns about the visibility and urgency of dementia within national agendas. Building on these insights, the Alzheimer’s Society intends to use these results to drive national government and health and care systems to act by helping to inform policy and practice solutions for reducing stigma and, particularly, for improving the experiences of people affected by dementia.
The full report is available at: https://www.alzheimers.org.uk/about-us/policy-and-influencing/reports/survey-lived-experiences-dementia