Important issues arise from the lack of progress on public attitudes towards dementia

I found the World Alzheimer Report 2024: Global changes in attitudes to dementia" sobering reading, and in the most part quite surprising.

The report is here.

It really is a beautiful and remarkable piece of work.

It struck me how little the "dial" has indeed shifted. I actually went to the Alzheimer's Disease International conference in Perth, Australia, close to a decade ago. In the meantime, we've had major initiatives from leading dementia charities to promote "dementia friendliness", e.g. Alzheimer's Society, Alzheimer's Association, Dementia Australia.

These initiatives for 'dementia friendliness', a much more unhelpful phrase than 'dementia inclusiveness', were 'sold' as being cost-neutral, especially enticing as neoliberal jurisdictions embraced the shock doctrine of austerity in response to the capitalism crash of around 2008.

My time caring for my mum at home, unpaid, was a real eye opener. This was in Camden, England, from 2016 to 2022. I had a birds'-eye view of the effects of dementia, and where my mum was 'situated' with that, as Simone de Beauvoir would perhaps put it.

My 'beef' is that carers often identify as 'carers', despite the fact they're doing the job, a full time job, 24/7. It's an incredibly demanding r?le, for which people like me invariably feel pretty unfair.

From the ADI 2024 report:

"Support carers. This survey revealed the true impact of experienced and anticipated discrimination on carers. They experience more loneliness and reported a poorer quality of life than the general population and health and care professionals. Whether due to societal prejudices or internalised stigma, the burden of dementia should not be carried alone. ADI calls on governments to provide solid support networks and person-centred services to create truly dementia-inclusive communities, in which those living with the condition– and those who care for them – no longer feel isolated and cast aside. Individuals who care about dementia, whether they are directly affected or not, should also be encouraged to take action to change the way dementia is discussed and treated."

I remember almost ten years ago asking the then CEO of the Alzheimer's Society UK how we would know that we had achieved the "outcomes" of the dementia friendly initiatives initiative. The answer was never convincing. I feel that the issue of changing the supertanker of public attitudes on this came in real life arrived with the global pandemic. There were virtually no reports of "dementia friends" helping out people with dementia, such as delivering food or groceries, but that might have been due to the infection risk (people with dementia are at greater risk from coronavirus, because of the risk of delirium.) The question was whether there would be a fundamental shift in 'rights consciousness' - and there wasn't.

Knowledge

80%* of the general public think dementia is a normal part of ageing, a dramatic increase compared to 66% in 2019.

65%* of health and care professionals (HCPs) believe dementia is a normal part of ageing, up from 62% in 2019.

Over 96% of the general public believe in the value of a medical diagnosis.

Over 93% of the general public believe there are things we can do to improve the lives of people with dementia.

Over 58% of the general public believe dementia is caused by an unhealthy lifestyle. This number increased since 2019 across high-income countries (HICs) and upper-middle income countries (UMICs) but decreased dramatically in lower-/lower-middle income countries (LMICs).

Over a quarter of people globally believe there is nothing we can do to prevent dementia, with an increase from 2019 to 37% in LMICs

I'd be very surprised if the majority of UK medical graduates thought that dementia was a normal part of ageing, and I would hope that these statistics represent a global picture. Certainly, substantial sustained efforts have been put in by the leading stakeholders to educate the workforce such as this core curriculum.

My disappointment with some of the overzealous promotion of the newer pharmacological interventions for dementia is substantially one of the hype taking up valuable air space. There seems to be little effort which goes into campaigning for the equity of social care, and yet this is a lifeline for many carers of people with dementia. Not all people live independently, and they require support in the form of care.

I think my colleague Rob Howard is completely correct, for example, in his latest assessment that the benefits of lecanamab are minimal and uncertain, in keeping with the NICE assessment.

The attitudes on preventing dementia and 'unhealthy lifestyle' are essential in us starting a conversation with the public about behavioural change towards a healthy lifestyle. Whilst we know much about the individual risk factors for dementia, the pivotal issue is to whether any population-level interventions can have a meaningful impact in lowering the incidence of dementia, and whether there is a differential effect of this according to the social determinants of health or inequality. Addressing prevention, as well as making the NHS digital, and care 'closer to home' are key planks of the UK health policy from the incoming UK government. The 'success' of the promotion of brain health (and cognitive health) will be especially interesting to follow here.

Given issues with safeguarding finances, integrated care planning for health and social care, will/estates/probate planning, lasting power of attorney, welfare benefits, care assessments, as well as outward manifestations over the several years following a correct diagnosis of dementia, I am personally aghast how one might want to keep a diagnosis of dementia a 'secret', given the huge support needed in later stages. The 'normalising dementia' strategy has the double-edged sword of reducing stigma for those 'living well' with dementia at the earliest stages, but possibly markedly increasing stigma for those who are more disabled and more dependent, and allowing the care needs and concomitant resource allocation for those with more advanced dementia to run at a minimum. This lack of investment for people with more advanced dementia, and a proper organisation of the offering for their health needs (such as NHS Continuing Healthcare), is still a huge problem; and there is totally insufficient campaigning on this in the UK.

Attitudes

Over a quarter of respondents from the general public expressed a belief that moving a family member with dementia to a care home, even against their wishes, would be the best option. This number increased significantly in LMICs since 2019.

Over 60% of the general public believed it is important to remove family responsibilities from people with dementia to avoid stressing them, an increase from 2019 data, especially in LMICs.

More than 90% of carers and respondents from the general public said they would be encouraged to get a diagnosis if a disease-modifying treatment was available.

Over 85% of health and care professionals said they would be encouraged to give a diagnosis if there was a treatment that could prevent or slow the progression of dementia.

That over a quarter express a belief of moving a 'loved one' to a residential setting is not of course a sign of failure on anyone's part. The homecare sector has experienced a number of 'shocks' itself further to the pandemic, including funding, Brexit, or workforce issues, not necessarily independent.

That over 60% of the general public believe it's important to relieve family responsibilities is a testament to the millions unpaid family carers save the UK economy. Carers face a rewarding achievement looking after loves one, but many are exhausted and suffer from burnout.

That people would be encouraged to get a diagnosis if there were a treatment or prevention is remarkable, but here I feel the question on 'treatment' is too narrow. Like much of this survey, it is ideologically slanted towards a 'small state' framing of dementia with more emphasis on cure than care. There has been to me no progress in delirium prevention as a means of slowing down the deterioration in dementia, which is still awaiting proper rigorous scientific investigation, but it has to be noted that recurrent delirium episodes might be somehow associated with long-term impairment.

Behaviours

88% of people living with dementia indicate experiencing discrimination, up from 83% in 2019.

Carers and people living with dementia tended to report higher levels of loneliness than the general population.

Over 50% of people with dementia and their carers experienced anticipated discrimination. z 29% avoid or discontinue close personal relationships

43% stopped inviting friends over due to concerns about how they might treat their loved one

z 47% stopped accepting invites to visit friends or family

z 40% avoided joining social groups or activities due to concerns about reactions to their loved one

z 34% avoided going out in public with the person they care for due to fears of perception

z 41% of carers avoid travel or taking vacations due to concerns that the person they care for could be treated negatively.

That so many carers are "frightened to go on holiday" is a frightening statistic, and certainly chimes with my own experience. But burnt out carers, like I was, really are inadequate in meeting care needs; this could be due to being 'up all night', especially if mum can't sleep or is exhibiting distressed behaviours.

That carers also experience discrimination, 'by association' or courtesy stigma, is important, longstanding, and a cause of loneliness and social isolation for both people with dementia and carers.

It's important, I feel, to note that this discrimination can also come in the form of microaggressions, and can be intersectional (i.e. greater discrimination with having dementia or other disability, age, female).

Social inclusion and integration, and indeed 'citizenship', can mitigate against exclusion, stigma and loneliness.

Thanks to the ADI, especially Wendy Weidner , for another outstanding contribution.

@dr_shibley