I received an email this morning from a large international dementia charity launching a latest ‘anti-stigma’ initiative. I became interested in the activities of dementia charities about ten years ago, but I became tired that certain issues were going around ‘on loop’ without much apparent progress.
I have discussed, as indeed many have discussed, the slogan, ‘living well with dementia’. A point of convergence of us is that it may be achievable for most people to live relatively well with dementia. At the time that it was launched, when it was very much a policy fad, a whole schema had build up around ‘living well with dementia’.
That was, individuals could ‘live well’, independently in the community. A cost-neutral way of effecting this, it was hypothesised, would be that entire communities could have aspects which are ‘dementia friendly’. This might range from libraries, to shopkeepers, to transport.
Like many things which go awry, we can perhaps suggest that a pandemic got in the way. This would of course have been a golden opportunity for the new armies of volunteers to kick into action, to help those more lonely members of our community with dementia, and so on.
I am prepared to concede that this was well intended from an oligopoly of charities. Lurking under the surface was the notion that there might be ways of dramatically slowing down the progress of dementia, although there was never any convincing evidence regarding that. That much was clear, people with the ‘best diets’ in the world developed dementia, and even the most educated.
I think the fad was to some extent supported by a small platoon of ‘dementia advocates’, who had been apparently diagnosed with dementia, although nobody requested nor anyone volunteered much proof of that. The most striking thing about them, however, was their relative lack of clinical progression even to the most untrained eye. Specialists in dementia, who tried to draw attention to the potential problem of such ambassadors having totally different experiences to exhausted burnt out carers, painting a picture of dementia which seemed like ‘magical thinking’.
Anyway, these ambassadors still continue to give talks and continue to be given invitations to international talks. I am confused still.
In English policy, the NHS ‘living well with dementia’ pathway did not even dare to mention ‘caring well’, subsuming it under ‘supporting well’. It was if social care did not exist. To all intents and purposes, social care was existing less and less due to drastic cuts over a prolonged period of time. Social care professsionals, especially during the pandemic, have worked extremely hard.
The plight of carers has become increasingly difficult recently not least due to the ‘cost of living’ crisis. But, overlaying this, in dementia care, are two further problems which are to do the environment, and the blame cannot be laid at the feet of those people living with dementia.
Incontinence commonly happens in dementia. Community services have been stripped to the bone, so there are literally patients put into pads who had never been incontinent before. They remain unreviewed on discharge. The pads are not being used primarily for continence care. They were used in a hospital admission as a form of physical restraint. Some patients with dementia were simply unable to use their ‘call buzzer’ (more of a hazard when carers are restricted from visiting) or some caring staff didn’t want to answer them in a busy shift. It seemed much easier to strip patients of their dignity, by putting them permanently in incontinence pads. The repercussions of this are huge, as it takes persons living with dementia to an altogether different level of perceived dependence. The ultimate level, prior to death, is transfer to a residential care setting, inappropriately termed ‘institutionalisation’.
Furthermore, one care provider has decided to offer no longer dose-set boxes or blister packs, where patients and carers can simply dispense of the medications morning and night on specified days. What happened to patient choice? Carers are exhausted as it is.
On top of that, COVID cases are still going up, there are still paid carers off sick, and there are still giant rota gaps. If your loved one then gets really ill, it can be impossible to get an ambulance.
It is almost as if the pandemic gave people license to act badly, irresponsibly and unreasonably. In many ways, it has never been a worse time to be a ‘dementia carer’, paid or unpaid.
Shibley Rahman 