Attitudes towards prediction and early diagnosis of late-onset dementia: a comparison of tested persons and family caregivers

Abstract

Background: The focus on early detection of dementia and Mild Cognitive Impairment (MCI) diagnosis has entered the clinics’ daily routine. However, there exist epistemic uncertainty and moral concerns whether early detection and prediction of dementia is clinically meaningful for the people affected, primarily due to the lack of effective treatment options.

Methods: In this study, we adopted qualitative research methods. Twelve face-to-face interviews with tested persons with MCI and early dementia and five focus groups with family caregivers were conducted in Germany in order to explore and analyze their understanding and assessments of early detection and prediction of dementia in memory clinics.

Results: Our study revealed that there was much uncertainty among the participants diagnosed with MCI especially when compared to the participants with an early dementia diagnosis. Their uncertainty concerned the meaning of a ‘MCI’ diagnosis as well as the validity of specific biomarker test results. Moreover, we identified different lines of moral issues for and against the tests among the participants. They include a) inter-familiar conflicts of interest in the initial phase of memory problems, b) the hope for (future) therapy and prevention, c) the desire for easier access to experts in memory clinics, d) advance planning, e) stigmatization, as well as, f) suicide as an option to avoid the future loss of self-determination.

Conclusions: Current clinical and communication strategies only partly address the perspectives and needs of the affected. A standardized and ethically reflected procedure of the information provided by professionals before testing and afterwards, during disclosure, seems necessary. Further, longitudinal studies are needed to improve our knowledge about the experiences tested persons and family caregivers have with different levels of stigma.

Keywords:

• Biomarker
• mild cognitive impairment
• early diagnosis of dementia
• focus groups
• face-to-face interviews

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Due to data protection and privacy, we did not have access to the files of the tested persons. Hence, we took the self-reports regarding the diagnosis for granted. It should be noted that even in the clinical practice, it is difficult and not very clear to categorize the early stages of dementia. To be at risk of dementia, SCI/MCI and prodromal stage of AD is very fuzzy and the categorization of these early stages is very broad varying according to self-diagnosis (i.e. observations in daily life). Our study does not rely on clinical diagnosis, but on self-reported diagnosis by family members and persons themselves. Our sampling strategy is very broad and shows heterogeneity in that sense, which presents a better picture of prodromal stage of AD in everyday life.

Additional information

Funding

This work was supported by the German-Israeli Foundation for Scientific Research and Development (G.I.F.) under Grant No: G-1413-119.4/2017.