Social and Ethical Challenges in Dementia Diagnosis: A Case Study of Dementia Policies in England and Wales

Abstract

Background and Purpose: Dementia has become a major global health issue due to the burden on patients, carers and on health and social care systems. The approach of early dementia diagnosis being financially incentivised in England and Wales has been met by controversy. This case study allows an overall picture of the developments in dementia policies (2009-2016) and a reflection of the policies’ impact on the services and patients. Social and ethical challenges in dementia diagnosis are explored from three perspectives: policy/services, research and clinical practice. Methods: Policy documents and expert interviews were combined. Policy documents showed developments and achievements related to dementia diagnosis. Experts in dementia policies/services reflected on practical challenges and strategic concerns that have informed dementia policy. Clinicians from a memory clinic reflected on their approach to diagnosis and the policies’ impact on clinical practice. Researchers offered their expertise regarding diagnostic technologies, discussed the value of an early diagnosis and a potential screening programme for patients and families. The data was analysed by using Mayring’s Qualitative Content Analysis. Results: Social and ethical challenges arise in the current approach of dementia diagnosis. Ethical issues include among others the lack of understanding of MCI and early dementia, the potential for misdiagnosis and overdiagnosis, the lack of effective treatment and prevention strategies, patients’ feelings of disorientation and increased fear around dementia, and the impact of stigmatisation on people’s lives. Social issues include pressures on the social and health care system and the resulting lack of specialist services and post-diagnostic support. Conclusion: The benefits of knowing about one’s MCI and early dementia might not confidently outweigh potential harms as yet. Awareness raising without incentivising dementia diagnosis might be sufficient in motivating people to receive an assessment. Timely diagnosis instead of early diagnosis seems to be the more appropriate option.