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.