Thinking through impacts of dementia friends policy in UK
- Research was a key driver to increase memory assessment clinics – in order to recruit more people and at earlier stage of dementia – we could question whether advocating early diagnosis leads to increased frequency of insecure diagnosis (or a diagnosis which is later changed)
- Politicians joined the support for early diagnosis – Dept of Health people should have known that this would lead to increase in demand on services. Is it ethical to push for earlier diagnosis without treatment options and without appropriate care services?
- I think there is consensus from health promotion or health equity perspectives that tackling stigma and increasing knowledge about dementia amongst the public is good in itself. It has probably also been seen from the narrower perspective of improving likelihood of people coming forward to be diagnosed and hence supporting the points above. I don’t think we have good measures to assess levels of stigma or public knowledge.
- Campaigns by several charities and advocacy by individuals with dementia has all contributed to change in language use in news media. Maybe also it has increased likelihood of people coming forward for diagnosis (as diagnosis rate has increased). Public information and campaigns also has an influence on healthcare professionals which may also have increased likelihood of referral and diagnosis.
- It would be unethical of Dept of Health (as it was) for it’s policy to be to increase diagnosis rate and yet have limited support for the increased number of people who are diagnosed; therefore the Dept has to be held to account for ‘gap’ in services and support available (whether statutory or third sector).
- What are the expected or predictable effects of pushing for earlier diagnosis? At a population level:
- Increase in incidence and prevalence of diagnosis of dementia (broadly speaking)
- Increase in diagnosis of (all) specific types of dementia – including the rarer subtypes
- Increase in dementia-like conditions – ie people who are referred to MAS but are given ‘other’ diagnoses: MCI, functional neurological disorder, depression, (other neurological conditions: Parkinsons?, brain tumour?, mini-stroke?)
- Earlier diagnosis – ie leading to more people with mild dementia, and more people living longer with dementia (ie increase in survival time – similar to improved cancer diagnosis from screening)
- An increase demand, knowledge and motivation to help and support people with early dementia
The implications of these expectations are that there will
be (are now) more people with early stage dementia and more with ‘rare’ dementias also
more with MCI, functional neurological disorder. More people will be in the
community living for longer with mild symptoms. Firstly we must avoid
undermining the experiences of these expanding groups of people. Secondly, more
‘low level’ services and support will be required – dementia-friendly
communities could contribute to that. Thirdly the greater number of people at
early stage in communities will change perceptions of the meaning of dementia. Finally,
according to the social model of disability, if we can address stigma and improve
people’s lives, we may expect people to live longer, more meaningful lives,
with hopefully delayed deterioration of cognitive impairment.