Christmas is a tough time for many, especially carers

About twenty years ago, I was a newly qualified house officer working the Christmas period at Addenbrooke’s. Addenbrooke’s Hospital is up Hills Road, in Cambridge. Christmas Day was a very quiet day, but Boxing Day was very busy.

When I was caring for my mum, in the last few years of her life, it felt odd. The paid carers would come as usual four times a day. It would be hit or miss whether Mum would want to take her tablets, or even eat her breakfast. Towards the end, we tried very hard to vary her diet. But she would eat a few bites of some toast, and drink a bit of tea. And that was that. I used to end up feeling demoralised most of the time. I’d put the TV on for her, and she tended to stare blankly at the screen.

But it always struck me how tough it was for the paid carers. The care provider used to provide private hire cabs for them to get to their clients. They could not really rely on the public transport. In the last few years, the buses here in Camden had become most unreliable anyway. Even calling an ambulance on the last occasion led to a fifteen minute to wait to speak to a call operator. In the old days, that would have been more than enough time for a stroke to do its damage. It won’t surprise you to know that the whole infrastructure had deteriorated beyond my wildest expectation within the last few years. So much for the absurdity of ‘dementia friendly communities’ then.

I understand why children will want to put a parent with dementia into a care home. I was talking only this week with my GP (who happens also to be my mum’s GP) about how I was nearly driven to put mum into residential care. Her behaviours became wilder and wilder, and it became impossible for me to leave the house safely without running the risk of her falling over while trying to turn the TV off, or even wandering outside of the front door and never being seen again. In the end, what stopped me was the threat that she might catch COVID in a care home, and I might not be able to visit her. In the end, she did catch COVID, I transferred her to hospital, and she died. I was far too late to realise that she was in fact ‘end of life’. She did have a ‘good death’ – uncomplicated, but all alone. It happened at 2 in the morning. It was shocking, not surprising and totally inevitable.

I did try to go through the motions of pulling crackers with mum on Christmas Day. She certainly didn’t understand Christmas party hats. Cooking a special meal for her would have been a waste of time given her swallowing problems. Anyway, it wasn’t really her religion as she had kept on telling me during my childhood – although it was engraved on my mind that Jesus is a prophet in Islam. For that matter, virtually for the entire4 time, Mum never felt that she even had dementia. She never understood why we all wore masks in the pandemic. This ‘anosognosia’ is quite common for people who really have dementia.

Yes, Christmas felt like a lonely time. While mum was physically with me in our small flat in Camden, it felt like just another day. I would end up feeling exhausted, and not quite knowing when the next disaster would happen. Being a family carer was emotionally exhausting, but it left me concluding that despite the fact dementia is the cruellest disease possible I loved my mum so much.

@dr_shibley

Changing hearts and minds about dementia. Implications of an identity crisis.

About ten years ago, a leading dementia ‘activist’, an advocate at the time employed by a national corporate strategy, said that part of the problem were media depictions of everyone with dementia “dribbling onto their napkin”.

At the time, this coincided with a drive from numerous corporate strategies, simultaneously from the Alzheimer’s Society, Alzheimer’s Association and Dementia Australia, to encourage the construct of “dementia friendly communities”. I never stopped to think about how a number of national dementia charities had converged on the same policy at once, but they did converge on an ideological harmony. That is, that society could be ‘friendly’ to those with dementia and to include them normally in society.

I also never stopped to think about how this exactly coincided with a small state ideology. I mean by this a drastic under-resourcing of care services. The result was that there was an increasing drive to present people with dementia in the media as ‘living well’. Extremists of this argument accused people of ‘not wanting people with dementia to live well’. This was clearly an offensive and ridiculous argument.

The upshot was that argument ran that the stigma against dementia could be reduced by ‘normalising dementia’. This was a simultaneous line of attack from prominent people ‘living with dementia’ that they would be told, “I never knew you had dementia”. To which they replied, in unison: “What does a person with dementia look like? 2 noses and 4 feet?”

But sadly media depictions of later stages of dementia became airbrushed from the narrative. There would be co-production with people ‘living with dementia’ – but never with carers. The experiences of carers could not be disputed. People with dementia couldn’t prepare their meals, couldn’t swallow safely, would lash out, might wander out of the front door at 2am, had trouble sleeping, and couldn’t remember the thread of a conversation. But often people ‘living with dementia’ showed no cognitive deterioration even after a decade, and apparently took any comment about potential misdiagnosis very ‘hurtful’. For people like me who basically gave up salaried employment to nurse my late mother, I could never believe why being diagnosed with dementia ‘was a blessing’.

There was never a plan to assess the outcomes of such dementia friendly information campaigns. Prof Sube Banerjee as the author of the ‘Living well with dementia’ national strategy in dementia in 2009 had made successfully the case for an information campaign. This was delivered just in time for the period of protracted financial austerity which was to follow in the UK.

My problem with the ‘Dementia Friends’ campaign from the Alzheimer’s Society and Public Health England is that it always seemed like a mechanism to promote the Alzheimer’s Society, its CEO and their favourite ‘friends’ (who were amply rewarded in the Queen’s New Years Honours List).

Millions were pumped into various outlets, like advertising/PR agencies and an online platform so that people could ‘game’ becoming a ‘Dementia Friend’. The number of ‘dementia friends’ shot up once it became possible to watch a video briefly online rather than attend an interactive session in person.

But did the ‘Dementia Friends’ programme actually combat loneliness or people with dementia living on their own without friends or families? Did it improve diagnostic rates?

Did it help anyone struggling with their shopping or other day-to-day activities during the famous pandemic which was to follow 2019 for a few years?

Unsurprisingly, no. The emphasis was always to help people to be seen to be doing something about dementia, whereas it did very little for those millions of unpaid family carers languishing on their own, financially unsupported and suffering in silence.

If anything, these unpaid family carers became the platoons of ‘slave labour’ which Edmund Burke had so kindly predicted ahead of David Cameron’s ‘Big Society’. David Cameron also was to wish for a ‘cure for dementia’, meaning a psychopharmacological cure for Alzheimer’s disease, by 2025. That’s the year after next. You will also notice that under him and George Osborne social care has been decimated.

There is at the time of writing still no plan for social care including domiciliary care. Retention and recruitment of the workforce is dire. Private providers are going out of business at the drop of a hat due to market failure, and it’s absolutely crucial to understand why leveraged management buyouts are ensuring a good financial return on private equity investments paid carers still don’t have a fair salary, good working conditions or sufficient respect in society. Take for example the recent anti-immigration hostile rhetoric from the current government?

I am exasperated by the state of English dementia policy. The experiment with dementia friendliness, a glorified experiment in benevolent othering, was relatively short-lived I suppose. But what would I know about policy anyway?

@dr_shibley

Whisper it softly. “Dementia friendly communities” might actually exacerbate stigma.

Dementia friendly communities, from Japan to America, are big business. It’s the bandwagon that won’t stop travelling.

Indeed, the need to challenge stigma, in relation to HIV or mental illness or issues of disability, has been a recurrent campaign over the years. Dementia has embraced this campaign full on, one Twitter infogram after another.

According to the Canadian sociologist Erving Goffman, the term ‘stigma’ describes the ‘situation of the individual who is disqualified from full social acceptance’.

For example, homosexuality, one of the categories of stigma featured prominently in Goffman’s study, was once defined by doctors as a disease and by the police as a crime. Yet, in 1974 it was removed from the list of psychiatric disorders recognised in the US while the gay movement helped to transform a stigma into a politicised identity. This does not mean that prejudice has disappeared, or that “people who are gay” do not still experience discrimination or abuse.

It is a popular motif when writing a grant for monies to say that your initiative raises awareness and minimises stigma. Most definitely, “low hanging fruit”. But I should like to argue that it is, in fact, rarely scrutinised what this actually really means.

At worst, the identity of “dementia friendly communities” assumes an endorsement of a culture of victimhood which has encouraged people to embrace labels, that would once have been considered stigmatising, rather as badges of status and entitlement.

This means it’s cool to ‘live well with dementia’, and you could even benefit from an enhanced shopping or dining experience. It is normalising something, without removing the deep-seated prejudice, which might occur, for example, with other ‘spoiled identities’ such as homosexuality.

Persons living with early dementia cannot be blamed for, far from regarding the label of ‘disabled’ as shameful or embarrassing, seeking medical or societal endorsement of this status so that they can claim privileges in relation to driving, parking, and bus transport.

But I feel that this is turning a blind eye to those people with dementia who are far more advanced with their conditions, which are in no position to claim such privileges as they do not have the cognition to operate a complex machine, let alone speak, swallow or remember.

If a critical driver for ‘dementia friendly communities’ is arguably social acceptance, stigma  perhaps at worst is a form of “social death.”  The victim can internalise the stigma into self-hate and at worst a person with “early dementia” might even not recognise the person with advanced dementia as a potential fate of himself or herself.

And of course a few of these individuals, by the law of averages, with “early dementia” will never go onto be people with advanced dementia, as they have something totally different, such as a misdiagnosis of dementia, a functional psychiatric disorder or “minimal cognitive impairment” (very potentially a dustbin diagnosis for clinicians who cannot make up their mind what the diagnosis is). But the point is that these people with “early dementia” are anyway closer to the identity of someone without dementia, through the magic of dementia friendly communities.

That said, I feel the biggest ideological mistake of dementia friendly communities is that rather than encouraging inclusivity through integration it encourages a sense of ‘otherness’ and segregation (e.g. the brand of “dementia friendly cafés). Will the big charities care? No, because their brand equity and fundraising capacity goes up regardless.

However, an untoward effect of ‘dementia friendly communities’ is that the vast majority of symptomatic persons with dementia are actually stigmatised by those with “early dementia”, banging the “dementia friendly communities” drum, and this is undeniably a ridiculous position for any society wishing to provide equitable, fair health and social care.

Whisper it softly. “Dementia friendly communities” might be doing much more damage than good.

An assets-based approach to dementia friendly communities

The ‘deficits model’ is pervasive in medicine and policy, but altering the narrative towards one of assets and civil society, including the promotion of health and wellbeing and respect of human rights, would be a big help, I feel.

Slides: here.