Dementia Action Week is 15–21 May. It is a week of awareness promoted by the Alzheimer’s Society in the UK. There is plenty of information on their site about the theme chosen for 2023, which is ‘Diagnosis of Alzheimers’. The purpose of this article is not to sum up the plentiful information and advice found there and on the social care site. Rather, it is to add some personal stories and impressions from my own experience as the wife of someone now suffering from advanced dementia.
The first diagnosis
The first diagnosis we got was when my husband was sent for a brain scan. We were told that his brain showed signs of vascular dementia. We were also told that an operation to put a shunt in the brain would remove some symptoms of blocked fluid flow to the brain. At that time we were in Durban, South Africa, with access to excellent private healthcare funded by the medical aid that was attached to my employment contract. But being under private healthcare means that every decision for medical care is also a financial decision. Although one expects all medical professionals not to be money-grubbing, the thought usually prances around in the back of the brain – how much of this advice is financial and how much medical?
It is wonderful now to be back with the NHS, where this does not loom over every personal treatment decision. It does still affect treatment that requires very expensive drugs, but that is a decision far removed from the patient and in the remit of the PPRS (Pharmaceutical Price Regulation Scheme).
In the event, my husband refused to even consider an operation on his brain. I tried to ask the specialist what we could expect. He said we could just continue. Slow decline was likely, but it was also possible that there would be a sudden crisis. I don’t think my husband really took in the implications. But then, that seems to be one of the symptoms of such neurodegeneration, a kind of detachment from reality. Or maybe he did grasp it but just could not communicate about it. Actually, he continued with slow decline across eight years.
Power of attorney
When we arrived back in Kent in 2017, we signed up with a local GP. This presented some difficulty, as there was a queue, so we had to turn up at 6am to be sure of getting on the list. The GP had to do an initial assessment (the usual questions – what day of the week is it; where do you live; what are the names of your children). His say-so is required for referral to further mental health services, and his signature also for UK power of attorney.
It is important for next of kin to wise up about power of attorney for money and property affairs, because a dementia sufferer will become unable to manage the administration of money quite early on. My husband could continue to use cash but could not draw money from cash tills or, of course, track his bank account or make budget decisions.
Power of attorney is a legal document requiring formal signatures. Other next of kin also need to be prepared to step in if the primary signatory is out of action. Once achieved, it is a digital document that other institutions like banks and the tax office will accept.
More detailed assessment
The referral to Kent Mental Health (KMHT) services meant an appointment for another, more detailed assessment. As I have long had an interest in language assessment, I sat in on this test. Most of it was laughably inappropriate for my husband. Made in Australia, it must have been standardised on Australian norms, with questions like ‘name one marsupial’. There was my husband, who could name umpteen large African animals in about six languages, yet he had never come across ‘marsupial’ even for Scrabble (which he used to be rather good at). He was also stuck when asked who the Prime Minister is (which country? he had only arrived here last month). However, his drawing of a misshapen clock face was a convincing sign of trouble with visualisation. So, he was duly put on the lists of the local mental health nurse. I was named as his carer.
Living at home
So then, for the next five years, he continued to live at home. Initially, we attended appointments with the mental health doctor (about every six months) and the nurse (about every three months). The doctor saw to the various pill prescriptions, while nurse Tom engaged my husband in conversation. This is quite a skill. Dementia patients tend to try to overcome their affliction by using routine phrases but not engaging cognitively with the topic (or not finding the words for it). What my husband also used to do was turn to me to finish his sentences. So, I withdrew from the interviews with nurse Tom so that he could better assess the communication failures.
These conversations also turn on what the patient has been doing lately. My husband was in fact doing quite well on this, having enthusiastically started work on the allotment we had acquired. On most days he would visit it. There was one huge achievement proudly reported to nurse Tom. The allotment management put a new padlock on the gate with a new security number. My husband carefully wrote this down, but we still needed several lessons and trials at the gate before he got the procedure right, and could thus gain access to the allotment on his own.
Assessments at home
Towards the end of the pandemic lockdown, we had visits from various NHS assessors.
The one for physical assistance (as his mobility was increasingly suffering from an old back injury) prescribed a useful high chair to use when washing up, and a better cushion for his armchair. We could have got a rollator from the NHS, but I had already bought one as a present (he called it his bicycle).
We also had a visit for care assessment, and I was given lots of information for carers. The assessment, with detailed questions about problems with eating, sleeping and urinating, was a warning of what was to come. But we were able to continue with home care for another year.
The crisis came during the Jubilee weekend, and I was no longer able to cope. There was a seven-hour wait for South East Ambulance. The police decided to take him to hospital in their car. Do you often have to do this, I asked? ‘Yes, more frequently these days, in situations like this.’ He was admitted via A&E, initially via a short-term casualty bed for three days, then into a dementia ward. There was impressive professional care here. I liked the way they asked me to fill in some papers all about his background, preferences, activities, family, etc. Sadly, because of several more crises, I was also told about DNR (do not resuscitate) orders.
The care home
After 28 days, the discharge worker contacted me about placing him in a care home in Whitstable. He was transferred by ambulance. Our daughter and I waited some three hours there to see that he was settled in the allocated single room. He stayed there for seven months.
Initially, he did not socialise much but spent the days obsessively sketching in his room, often beautiful Picasso-like cubist images, and sometimes with recognisable outlines of scenes from his early childhood, like the roof silhouette of African rondavels and a bus. Then, this year, he abandoned that and began to spend more time in the common room, dozing beside the other residents in front of a TV programme none of them were really following.
The staff there were attentive to the needs of the residents, but this is not made easy by penny-pinching decisions, such as NHS GPs no longer arranging ear-syringing, which means more elderly patients who can’t even hear the questions about tea or coffee properly. Many staff had been working there for more than five years. I particularly liked the comment of one cleaner, who said she enjoyed working there better than her former job as a finance officer!
Residential care such as this is not under the NHS but under the budget of KCC. They assessed us and sent a bill, which calculated the cost of such care as £1,000 per week. We had to pay a proportion of this.
Then there was another crisis, and the care home deemed he needed hospitalisation. He was put in a ward under KMPT (Kent and Medway Partnership Trust for mental health). Within a few days of admission, he tested positive for COVID. This was odd, as there were no cases at the care home and he was the first case in that ward. So, he was duly isolated and under one-to-one nursing care. He survived, and under this NHS skilled care is actually improving (better weight and mobility). There has been another care assessment, with a social worker who has been doing this job for 20 years. She is trying to find a nursing home in this part of Kent that will take him for advanced nursing care under the NHS.
Dementia care in the UK
What does this account of one person’s dementia journey reveal about dementia care in this country? Firstly, I am impressed by how well-established it is. There are skilled personnel who have been working years in their career in this field. As a sector of the UK economy, dementia amounts to £34.7bn, predicted to rise to £94.1bn by 2040. This amount can be divided into costs to the NHS; social care in institutions or at home; and unpaid care by family members (which is sometimes the cost of giving up a job to care for somebody). Nationally, all told, families pay 60% of social care costs.
We should each be paying more attention to where social care fits in policy options. It is not the best topic for canvassing during elections, because none of us wants to face the reality that at some point many of us will face the need for such care.
The journey continues
Meanwhile, how does this personal journey continue? I read the advice given to carers. When I visit, I try to give the personal touch – combing his hair, or cutting his toenails.
He can still hold a pen, so I bring along wax crayons and paper. Last time, I left him copying the outlines of flowers. He also still enjoys music, so I got pre-owned CDs of jazz and African music in the charity shops to play in his care home room. For his birthday, we will organise a Zoom meeting with the grandchildren, but he no longer remembers their names. At least he still does recognise me.