What we did
The Cambridge Institute of Public Health, with support from Alzheimer’s Society, has reviewed international research on the public’s opinion of population screening for dementia. The study team wanted to add to this research by including the perspectives of patients, carers, and the general public via a Patient and Public Involvement workshop. The event, held on 6th June 2013 in Cambridge, was well attended with 36 members of the general public from across Cambridgeshire and eight Alzheimer’s Society Research Network volunteers.
We were particularly interested in exploring whether people would be willing to be screened for dementia. After a general introduction of what population screening is, attendees discussed in small groups their general attitudes, preferences, and reasons behind their views towards dementia screening. They were then asked to react to key findings from the review of international research and engaged in a healthy closing discussion on whether screening for dementia is a good idea.
What we found
Several key themes were discussed. These include the accuracy of the screening test, the practicalities in providing the screening programme, the role of family and support, and the implications of knowing the result.
The screening test
A number of attendees were concerned about the accuracy of the test and many wanted to have evidence that the test was effective before undertaking screening. Individuals’ experience of other screening tests and programmes was discussed in the groups; the experience of other screening tests may impact on decision making, however the subject was not discussed in enough depth to draw meaningful conclusions. The suggested age for those eligible for screening also varied between groups and we did not find a consensus. However, the groups did agree that the individual administering the screen needed to be trained to do so. There was no consensus on the screening tool. Some attendees were concerned that a “paper and pen” test could be learnt over time and so would become less useful for screening.
Practicalities of the screening programme
For most attendees, cost was a major factor against developing a screening programme and they were concerned that screening for dementia would put more pressure on GP resources. The patient-doctor relationship was seen as central to the decision of whether we should screen for dementia and for some attendees it was difficult to separate this relationship from the existence of other medical conditions. There were multiple views regarding the ways relationships between the patients and doctors could affect screening, depending on whether this relationship was positive or negative. A number of attendees believed that there could be a financial motive for screening which would not be in the interests of patients. GPs, pharmaceutical companies, and insurance companies were suggested as having self-interested motives.
The role of the family and support
Responsibilities towards children or other dependents made an impact on the decision to screen. The majority of those with young children felt a responsibility to be screened; however, others said it was more important for them to get on with family life. The provision of support was also one of the main themes emerging from all groups. It was noted that the support available was not related to the provision of screening. In addition, previous experience of health and social care influenced attitudes; if poor care had been received or witnessed by individuals they were less inclined to be screened. Attendees from black and minority ethnic communities spoke about their experience of cultural differences; in particular regarding the role of the extended family in supporting others, which was seen as beneficial.
Implications of result
There were a number of concerns that there would be wider implications of screening such as employment and insurance issues. A number of groups raised the need for planning after the screening test with regards to arranging lasting power of attorney. Conversely some attendees within these groups said they would not attempt to plan for the future as these issues were not a priority for them. Whilst some attendees wanted to know more, for many the acceptance of a positive result was difficult and for some it was like being “given a death sentence”.
With regards to the effect that knowledge of dementia had on attitudes to screening; some who had family members with the disease were dissuaded from undertaking the screen, whilst others argued that previous experience had no bearing on what they perceived as an individual choice. There was some uncertainty over the impact the disease might have on their life in terms of family, friends, and social contacts. For some, fear of the disease increased the desire for screening whilst for some, not knowing the result was beneficial and screening was not desired. For some attendees the perceived stigma from undertaking a screen test had a negative impact on their willingness to be screened. However, it was also argued that the level of stigma encountered by those with dementia is reducing across society.
The lack of ability to change the prognosis of dementia was a concern for a large number of attendees; for some they would only attend a screen if the disease could be cured. Given the lack of ability for clinicians to change the prognosis, there was very little consensus over the benefit of screening.
Summary
We found the attitudes and preferences to population level screening for dementia were complex and influenced by numerous factors. The event raised many issues about which opinion was divided, such that there was no consensus on the benefits of population screening for dementia. However, the knowledge gained from this event was very rich and will be a unique addition to the global body of knowledge on screening for dementia.