On a fine Friday Summer evening, most of us have better things to be doing than reading about the grim facts of life for certain people during this pandemic.
We often choose to forget how interchangeable our existence is with people suffering from dementia – a disease that can strike at any time in later life.
GPs and healthcare professionals in general are often privileged to have an insight into the lives of people suffering from dementia – and their carers – so the news today from the Alzheimer Society will not be so much news to them, as much as a continuing and depressing narrative.
A report from the Society released today details how the pandemic has led to a significant and irreversible deterioration in the condition of many people living with dementia, with their world becoming smaller and even more frightening.
The report, Caring and Coping with Dementia During COVID-19, told us what many of us would have already guessed – family carers are at breaking point. Their own health has been dangerously compromised by the pressures of looking after a family member suffering from dementia.
It’s helpful to have figures, even if they are somewhat meaningless. Eighty-one per cent of respondents were concerned about the decline in the person with dementia.
Presumably all respondents were concerned about the decline of the person, so we must presume that this 81% refers to people who feel the pandemic has caused – or been primarily responsible – for a decline in the cognitive ability of the person for whom they care.
Fifty-four per cent of family carers reported a decline in their own mental health and 40% reported a decline in their physical health. Twenty-eight per cent of family carers reported considering a move to long-term care for the person with dementia, with 65% saying that this has become a consideration sooner than expected – due to the pandemic.
I say the figures are ‘somewhat meaningless’ not in a disparaging way. The Alzheimer Society is trying to reflect what we all know – life for many older people, already difficult in many cases – got a whole lot worse during the pandemic. We didn’t really need a survey or report to tell us that.
But we do need to be reminded that it is these most vulnerable people that should be at the top of our list when it comes to trying to repair some of that pandamage.
Indeed, the pandemic has thrown normal triage a curveball. We already had waiting lists that were strained, but coping. Healthcare was being examined and analysed on a regular basis in the media, and shortcomings were being addressed.
Now the pandemic – further exacerbated by the cyberattack on the Department of Health and the HSE – has created a perfect storm whereby almost every service in health has fallen behind, and is in need of a cash injection to bring it back even to where it was in March 2020.
Dementia patients and their carers have suffered badly, but one imagines the whataboutery has already started in various healthcare accounting circles to insist that cancer services or maternity services or cash bonfires such as the Children’s Hospital project are even more deserving of any extra loot.
If that is the case, we are looking at this all wrong.
It’s not a case of robbing Peter to pay Paul – if we go down that route of allocating money post-pandemic, shifting the money around, we’ll never get anywhere. We need to prioritize health to make basic care accessible to all, and to make sure that no-one suffers unduly and unnecessarily. That should be the goal of any decent society.
We need to look more broadly at how healthcare fits into our society, and how we can provide a decent service for people. The fact that we are looking to the Alzheimer’s Society to ‘argue’ for funds – their right to funds – is wonderfully democratic, but woefully unfair. In healthcare, the squeakiest wheel gets the grease, and it was ever so. We really need to do better than that.
Of course, healthcare funding is ultimately all about whataboutery – and who gets what and when. We don’t really have a Minister for Health; we have a Minister for managing the resources we’re currently allocating to healthcare.
Even that is a joke as we use different criteria to many OECD countries as to what constitutes ‘healthcare’, and then when the figures don’t match up, use that discrepancy to argue for even more discrepancy to quieten that squeaky wheel, while many of the passengers fall out the back of the truck.
There’s no doubt that the pandemic has taken a toll. It may take even more before its finished, though it looks like – at least for Ireland – we are coming to the end of major hospital admissions and widespread deaths.
The human toll is obvious, but the charge for the mental toll is only just being acknowledged. It is hard to have to think about death and danger every day. It is hard to have to contemplate the suffering or loss of a loved one. Mostly, people don’t. They focus on the positive. They focus on children, cheerfulness and the cherry on top.
It’s too hard to be focused on death and suffering. Even doctors up close to sickness and death find a balance in their heads to deal with it. They say that every doctor loses the fight for every patient eventually, but they get to fight for years and years first. And that’s the important bit. It’s the fight, not the result, which is pre-determined.
We don’t know exactly how devastating the mental effect of the pandemic will be. But perhaps the first step is to stop the debate of which service should get support over another, and instead focus on what needs to be done to create the best service. This is something we should aim for – more than concepts like ‘increased economic growth’ or ‘more FDI year-on-year’. These things are just ‘concepts’ and while they might look good on some Minister or civil servant’s CV, that’s about the end of their practical use.
An increase in GDP, or FDI, or PUP is not much good to a person suffering from Alzheimer’s who has been locked away in a physical room for over a year, and locked out of their family and friends by their own diminishing capacities. They lack even the ability to protest at the lack of facilities and supports to help them.
That’s why helping the most vulnerable, the most ill is the vital first step in recovering from the pandemic, and must be everyone’s first priority until some type of normality is resumed.