Five reflections on discussions stimulated by Alzheimer’s Society ‘died again and again’ advert – the context of changing policies

 I wrote this 5months ago, following the debate on social media about the Alzheimer's Society's new campaign. It's clear that Alzheimer's Society have stood by this campaign, defending it in a complaint taken to the Advertising Standards Agency, and now, relaunching the advertising campaign.

Divisive debate on social media

Vociferous debate has followed the release of an advert featuring a carer’s eulogy of his mother, where he describes his multiple grief experiences during her deterioration with dementia. Discussion on twitter has included personal attacks, which appear to be inappropriate, but this indicates that there is a feeling of shock amongst people who were previously supporters of the charity. They perceived a substantial change in ‘tone’ and language in the advert, compared to, for example the charity’s guidelines about what language should and should not be used in the media. On the other hand, carers and some professionals received the advert positively, because they felt that previous messaging from the charity (and other organisations and ‘advocates’) had portrayed a conception of dementia which was too active and did not reflect deterioration and frailty of later stage dementia.

My first reflection; the advert caused, or maybe brought to the surface, a divide between carers and people with dementia.

Policy and third sector context

The major policy context since 2012 has been Prime Minister Cameron’s ‘dementia challenge’ which was closely linked to the approach of dementia-friendly communities and living well with dementia. Some commentary expressed concerns that charities, including Alzheimer’s Society, were inextricably linked with this policy approach. This led to some individuals being selected and promoted as advocates, invited to give speeches at conferences, and this reflected a ‘positive’ side of living with dementia which may have been at odds with the common experience of cognitive impairment and deterioration. Over the ten years of implementing the policy, there has been a critique that the public should not be encouraged to be ‘friends’ with dementia (the disease), and the ‘dementia-friendly’ approach was seen as too superficial, almost too the point of glossing over problems. In my view, despite these concerns of ‘superficiality’, the policy has deeper foundations with human rights of people with disability. It has a strong message of personhood and rights of the individual, irrespective of how far an individual’s cognition has deteriorated.

Another element of the policy context is the ‘big society’ which imbued every aspect of Cameron’s Government and encouraged charities, third sector organisations and ‘civil society’ to provide a much greater proportion of the ongoing development of ‘care in the community’. Reflecting on Alzheimer’s Society activities; the organisation provided local dementia (‘memory’) cafés and in some cases had a member of staff based in diagnosis clinics (memory clinics) to signpost people at the time of diagnosis to their memory cafés, and other local (non-state) support. The majority of these services are commissioned, or receive some financial support from local or national Government.  

My second reflection; a ‘positive’ portrayal of dementia was associated with policy context and the ambition for charities to provide community-based support.

False equivalence with cancer

‘The big D’ is often used to refer to dementia, echoing previous labelling of cancer as ‘the big C’. This language indicates two things; that cancer is no longer the big fear and stigma that it used to be, due to survivorship (of many types of cancer) and secondly that dementia is becoming the condition which carries the greatest stigma. If these are two broad categories of disease are mentioned in the same sentence, I would argue that this is false equivalence. For example diagnosis; due to government / NHS campaigns there is a huge public awareness of the need for early diagnosis of cancer and the range of treatments available, leading to substantial proportion of those diagnosed surviving cancer. Dementia, is almost opposite; there are few national agency campaigns (NHS, or public health) and early diagnosis does not lead to (disease modifying) treatment; the best that can currently be hoped for is slower decline and deterioration. Another distinction is that for dementia the impetus for early diagnosis has come from research and drug development, rather diagnosis being the start of a clinical intervention ‘pathway’. People experience feeling dropped off a cliff after dementia diagnosis, due to lack of state services (NHS or social services), as compared to the rapid access to medical or surgical interventions for cancer. Government policy for early diagnosis, along with expected increase in demand due to hope of new disease modifying pharmaceuticals (still not available within NHS) is anticipated to lead to a large increase in numbers of people with a diagnosis at early stage of dementia. Without the survivorship narratives of cancer, the growing population with an early-stage diagnosis are most susceptible to anxiety and depression, due to negative messaging, and yet a lack of therapeutic services.

My third reflection; while the headline about dementia overtaking cancer as leading cause of death is noteworthy, it does not mean that cancer messages should be applied to dementia.

Recent policy shifts – assisted dying and retreat from dementia strategy

Changes in policy have potentially led to changes in Alzheimer’s Society public messaging. The UK Government have delayed updating the national dementia strategy (it is now outdated). Instead, a multiple conditions strategy includes dementia and this may represent a retrenchment from the goals of dementia friendly communities. The national organisation which supported the latter, Dementia Action Alliance, has been disbanded. A few years previously, Alzheimer’s Society had a change in strategy and stopped providing dementia cafés.

My fourth reflection; as the dementia friendly policy has been shelved, charities may have stepped back from attempts at ‘positive’ portrayal and instead have reverted to messaging around urgency. This may indicate that the charity has refocused on pharmacotherapeutics, as the first wave of disease-modifying drugs are being tested for approval (in UK).

The Scottish context should not go without comment. Scotland has recently published their dementia strategy, which includes community support. It is interesting to consider whether the renewed policy debate on assisted dying, in Scotland, has also fed into development of the ‘death’ wording of the advert. Public discussion of death and dying should be welcomed as another taboo being broken. However recent debate about the value of life of older or frail people, particularly during COVID, has revealed the negative side of taboos being broken as some commentators feel able to voice opinions which would have previously been considered not too far from the realm of eugenics.

At the global level, the Alzheimer’s Disease International continues to advocate for Governments to have active dementia strategies. Hence, my fifth reflection; the UK appears to be an outlier in retracting from this global policy direction. 

Language use in media

I’ll finish with a question – will Alzheimer’s Society now renew their guideline for language use in media, as it’s OK now to say that people with dementia have died, or died multiple times (undead?). Alzheimer’s Society used to be about promoting agency and personhood of individuals with dementia, I can’t think of a worse way to undermine agency than saying that person has died to me.