Banerjee S (2023) Be alert to this assault on dementia care. Journal of Dementia Care 31(5)7
Sube Banerjee is professor of dementia and executive dean at the University of Plymouth. He has worked in national and international health policy and is an applied health researcher focusing on quality of life and quality of care in dementia.
The amazing work of the past two decades moving dementia from obscurity into the light was powered by the need to address deep injustices and inequalities in health and care faced by people with dementia and their family carers. The papers in this issue of JDC chart emerging recognition of the diversity in dementia and provide hope and positive ideas about the value of inclusive dementia services.
However, there remains profound inequity in how those with dementia are treated relative to other major disorders. The disproportionate death rates of people with dementia during the Covid-19 pandemic laid bare the discriminatory nature of health and care systems worldwide which systematically undervalue their lives and wellbeing.
Until recently there has been the possibility that things were moving in the right direction, that we were on a path to acknowledging the breadth and depth of the impacts of dementia on society and working to change things for the better. That may no longer be the case. Dementia in the UK appears, in effect, to be being “disappeared” as a balanced health and care priority.
This assault has two fronts. First, government has abandoned its commitment to a 10-year comprehensive dementia strategy. Instead there is to be an ill-defined, non-specific “Major Conditions Strategy” including cardiovascular disease, chronic respiratory disease, mental health conditions, and cancer as well as dementia. Any such approach is likely to entrench and even broaden inequity since the evidence base and systems of service provision for those other conditions are much further developed than those that exist for dementia. The generality implicit in such approaches provides licence for the government to avoid meaningful and operationally achievable targets and actions.
And, second of the two fronts I have identified, there is a potential unintended consequence of the emerging first generation of disease modifying treatments for Alzheimer’s disease. This is a powerful proof of concept that drug treatment can help. But, in a quest to find simple answers to complex problems, we face the real prospect of a narrowing of policy focus onto drug treatment alone.
There is understandable enthusiasm from the pharmaceutical industry and some researchers to see diagnosis and care pathways simply from the viewpoint of the delivery of disease modifying treatments. This, however, neglects the fact that current systems of dementia diagnosis and care are almost universally patchy, of poor quality, and thinly resourced. Actions to re-engineer systems to deliver these drugs may diminish already poor services for the very large majority of those with dementia who will not be eligible for drug treatment.
Our problem is not that we do not have treatments that work: this journal is full of powerful positive changes that can be made that would allow people with dementia to live well. With will, we could already provide great dementia care. Instead we must be alert to a narrowing of the definition of “success” to slowing the progress of cognitive impairment. This runs the risk of creating exclusively drug-focused dementia services which would fail the majority and miss delivering so much good that could be done.