Probably as the most junior participant, as a volunteer, unpaid but still pretty enthusiastic, I received an email from the campaigns team of the Alzheimer’s Society. It was sent by Kath, a national influencing officer, and the team.
At the age of 49, I prefer not to be paid actually for anything or to become too committed in any way. This is because I can speak my mind. For all the noise about ‘dementia friendly communities’, a laudable aim in itself in proposing a cost-neutral way of improving lives for people with dementia through better NHS hospitals, schools, transport, and so on, for me it made no sense to campaign for this, but still silently endorse savage austerity cuts. It suited the Government to the ground for them to campaign for dementia to best served in the UK, and to launch an awareness campaign. But look at the facts. Around the world, the people who drove this were not the million ‘dementia friends’, amassed latterly online. The ‘dementia friends’ were largely nowhere to be seen in the devastating pandemic of 2019 onwards. This is especially a tragedy as many people face other people affected by dementia alone. This is due to a plethora of reasons, like never receiving funding for proper care, or never receiving a diagnosis in the first place.
I am happy to be an ultra small cog in the wheel. I have published many peer-review scientific papers on dementia (and its close relative delirium). And books. I did my Ph.D. in Cambridge in it. I have written books on it. I cared for my late mum at home for about six years from diagnosis to death with it. Please note there that anyone who received a diagnosis of dementia close to ten years ago would be expected by now to be showing significant cognitive or behavioural changes. There’s no sanitising the fact that dementia is a progressive condition. And it is emotionally, financially and physically exhausting as a carer. That’s not to say that people should be stripped of all hope. I found caring for my mum, along with paid carers from NHS continuing care, who were in reality all Somalian muslim women and family to me. It was the best of times and the worst of times. I never saw myself as a carer, only her son. I felt a 24/7 responsibility for her, which is unusual. It is also inadvisable in that I could never ‘switch off’. But I cared always for mum out of love. My medical knowledge helped me always to spot warning signs of her medically. I was able to refer her immediately to clinicians straight away or get her into hospital straight away.
Back in 2016, I knew something was wrong. The water bills were going through the roof, as she would leave the water tap on for her morning shower longer than for necessary. Then she had an episode of delirium, and her ability to manage herself went through the floor. I never had time to stop to think really that my mum was diagnosed with dementia. The hospital arranged for her diagnosis to be made straight away by memory clinic. That diagnosis, while ultimately devastating, was a pivotal life event. I was able to organise her lasting power of attorney – without which I could not have sorted out her bank accounts or managed with her accountant her property affairs. I was able to liaise with her GP, plan for her care, complete a carers’ assessment, get funding for her NHS care, explain to friends and family what she was going through (always preserving her dignity and the sense of her importance to me). She remains the most important person to me, quite simply as she gave birth to me and I have always felt filial piety to her within Indian culture. The organisation of care, including night care, dressing, feeding during the day, would have been impossible for me during every day (let alone financially difficult). I was able to get her assessed for Attendance Allowance which meant that she was entitled to a full discount on her council tax. I don’t hear of any dementia advocates ever advocating for any of this. I do wonder why.
I was struck by one line in particular in Kath Falconer’s email: “We know that each one of our campaigners has their own personal connection to dementia. ” One thing I do know as I approach 50 is that everyone has a back story you’re completely unaware of. It’s easy to think that other people aren’t as interested in dementia as you, they’re only doing it because they have to. But it’s actually impossible to find anyone who hasn’t been personally affected by dementia. As a physician, in older people, I am well aware that dementia never travels alone. In other words, if you have dementia, you’re likely to have a number of different medical conditions. But it is undoubtedly as there must be about a million people in the UK with it – many undiagnosed, and many having to be cared for by family or friends unsupported. It is also a deeply traumatising condition potentially – where someone’s ability and personality changes. This is very profound, if that person is your mother, brother, sister, son, and so on. And to emphasise there are some people with dementia entirely on their own.
The dementia diagnosis was crucial for me. First and foremost, it helped me understand what mum was going through, allowed me to access medical treatments which would improve her symptoms (whether for memory in the early stages, or for behaviour in the late stages). Don’t get me wrong. Some people to all intents and purposes do live well with dementia, or so it seems. But it is wrong to normalise dementia completely. Take for example my mum in the last stages. She was spitting on the floor, or sometimes start screaming in the middle of the night. Sometimes she would never take her meds, or eat her food. It was very easy for me to feel like a failure as a family carer. But I was giving it everything I could. I gave up a career, ironically in medicine, to look after my mum.
I was one of the very few who got NHS continuing healthcare funding for my mum. By the end, I knew all twelve domains of that scheme backwards, including taking medication, mobility, cognition, breathing and so on. I enjoyed updating with the NHS continuing healthcare assessors, and updating them on her anticipated care needs. It was hard work. I remember going shopping in Selfridges on Oxford Street one afternoon, and all I could think about was her assessment. Anyway that assessment never as such materialised. She passed away from COVID a week later.
As a carer, I always feared the next hospital admission. I could never leave her alone for more than a few minutes in the flat, in case she wandered out of the front door – and then I would never see her again. Or in case she fell over if she tried to get out of her bed to turn the TV off. The TV was always kept on during the day to keep her focused, and a lowly dim night light was always kept on at night to keep her calm. When my mum got really agitated, I would massage her feet. You see, for any behavioural outbursts, I could never recourse to medical interventions. I was very mindful of her dignity and of her fundamental human rights. I think ‘drugging people up’ with inappropriate medications is a form of assault. I understand though how carers can be driven to despair. I was on many occasion. I might ring up Rob Howard as a friend, who had personal experience like many of us do. Social care is a mess, and has got worse especially under the period of ‘dementia friendly communities’. I don’t think we should be too close to Government, such that certain individual people get awards but the entire system deteriorates in parallel.
So now as we approach the King’s Speech, dementia should be a priority. Bear in mind that I felt completely out of my depth even though I had been trained to a high level in medicine including dementia. We need more money in social care, though I understand that the current Government has tried to maintain this. It is also true that a lot of money was misspent during the pandemic, and that apart from the vaccine roll out there are still important lessons to be learned from that time. We need a wholesale reform of social care, possibly to be done under the framework of integrated health and care systems; and we need to ensure fair pay and working condition agreements for all in social care too. The Government and voluntary sector need to have a robust strategy for valuing family carers too who are a critical part of the political and social economy.
We must keep up the momentum on securing diagnoses for people with dementia. But a wrong diagnosis can do a lot of damage too – in that such individuals suffer an opportunity loss of not being treated for the correct diagnosis. A correct diagnosis of the subtype of dementia allows proper drugs to be given (and more importantly perhaps certain medications to be avoided). I found that the dementia diagnosis unlocked various other aspects of the care pathway.
Finally, we do need to push for more funding for dementia research. This thought should not just be for effective disease modifying drugs early in dementia, safe and easy to monitor. But also more effort I feel should be put into developing effective medications for those troublesome behaviours later on. Such behaviours need to be addresssed if anyone is to have any chance of being cared for safely at home. The scope for carer burnout and meltdown is so enormous. I am a big fan of ‘Dementia Moonshot‘. I think we need to deliver much needed, and quite overdue, breakthroughs; but I continue to be simply amazed at the outputs of labs including PhD students and postdocs everywhere in the world. The last international conference I went to was in fact the Alzheimer’s Disease International conference in Australia nearly a decade ago. I did go to the Alzheimer’s Society annual conference in Victoria this year though, and I very much enjoyed it.
I don’t want to be hyperbolic. Medicine has taken a long time to develop drugs for the underlying disease processes. When I became a member of the Royal College of Physicians, drugs for interstitial lung disease or anklyosing spondylitis were all symptomatic – but now they can change for the better the underlying biological progression. This is awesome, and has only been possible through very sophisticated transitionary medicine. Small things can make a large difference to people. If you don’t believe me, try sleeping without a mosquito net in Africa.
This matters to me. No experience for anyone affected by dementia is ever wholly pleasant, but knowledge is power. By picturing dementia as it is we can make things better for others. We need to chip away at everything. Social care is not just doing lots of tasks to care for someone – it is an entire ethos attitude about empowering somebody to live a life as full and flourishing as possible. We know that the NHS staff, likewise, are overworked and in their own industrial dispute. However, we need to keep this focus on dementia. The Government really does need, in my eyes, to get a move on regarding publication of a new dementia strategy. That would be my ideal outcome. There are certain details which are simply not covered in a broad ‘major conditions strategy’ alone. Unfortunately, some of what I say is slightly political, but it is also deeply personal. I believe what I am saying, which won’t extrapolate to everyone. I know that. It is my truth. But it will hit a chord with some. And we are not alone.
@dr_shibley
Dr Shibley Rahman blog 