1. ESRC Genomics Network (archive)
  2. Gengage
  3. The Human Genre Project

Cesagen · Research

Ethics in Practice: An ethnographic study of decision-making and their implications in dementia care

Alexandra Hillman

Start date



hillmanae1@cardiff.ac.uk, Tel: 02920 879602

Funded by

Wellcome Trust


Current UK policy reflects a commitment from government to the care and treatment of those with dementia (DoH 2009; 2010) and early detection is at the core of this commitment. Alongside this policy concern are numerous successes in dementia related research focussed on early detection (genetic susceptibility, biomarkers and imaging). This study seeks to explore the uncertainties that surround the diagnosis of dementia, particularly in its early stages. Diagnosis of dementia is currently based solely on a patient’s medical history and neurological examination and is often inconclusive in early stages of the illness. There is also little known about what a diagnosis means for the lives of those who receive it. Due to the current trend towards early detection, an appreciation of how information about memory problems is provided to patients and families and what this information means is essential and currently missing from the dementia care debate.


The purpose of this study is to evaluate how clinicians engage in processes of diagnosis and disclosure in the care of people with memory problems, particularly in the context of new bio-technology (such as new imaging techniques or genetic testing) and the knowledge these produce. The project will also embed clinical encounters within the broader context of older peoples’ and their families’ experiences of memory problems to better inform what ought to be considered in making decisions about what information to communicate to patients and their families, how and when.

Study Objectives:

  1. To inform what ought to constitute an ethically informed clinical decision about the sharing of clinical information about memory problems?
  2. To gain greater understanding of the factors that should be considered when developing ethical guidelines over the introduction of new bio-technologies into diagnostic and disclosure processes directed towards those with memory problems and their families?


This is an ethnographic study involving observations in two memory clinics in major UK teaching hospitals. Qualitative interviews will be carried out with patients from each memory clinic and a member of their family/carer/friend to explore their views and experiences. These will be complimented with qualitative interviews with memory clinic staff to explore how they decide upon the information they provide their patients and experts in dementia research to explore how new diagnostic techniques may impact upon the information available to patients and relatives and what this information might mean.

Further information

For further information, please contact