I have been residing in this particular Care Home for over two years now. When I arrived it was from another Care Home and before that I’d been in hospitals for a few months, as I recovered from a heart issue as well as getting Covid-19, which I contracted whilst in hospital. It was clear from my health and mobility issues that I simply could not manage living on my own any more, as I had previously been in an attic flat where the building had no lift, just stairs and a handrail on only one side. I soon noticed that many of the inmates in this Care Home had dementia, there were some worse than others and I saw how it affected them in so many ways. Before this I’d had very little experience in such matters, as my only previous knowledge had come from a lovely lady I had known in Whittlesey and whose character was at one time very bubbly and outgoing, but she changed so very much and near the end of her life she didn’t recognise me at one visit but would then scold me for not visiting her the next. But I was only a teenager then. My time here has brought back those memories and I wondered if in fact dementia is classed as a mental illness that can be cured? The answer I found was that Dementia is the name given for problems with mental abilities caused by gradual changes and damage in the brain. It is rare in people under 65 years of age and whilst it does affect mental health, in itself it is not classified as a mental illness because it is a disorder of the brain which causes memory loss and trouble with communicating. Our brain is a control centre and it controls everything we do, say and think. When the brain is unwell or damaged, we have problems with all our actions which then includes remembering, speaking, understanding and learning new skills. As a result, it seems that at present there is no certain way to prevent all types of dementia, but researchers are still investigating how the condition develops. However, there is good evidence that living a healthy lifestyle can help reduce the risk of developing dementia as we grow older, as well as helping to prevent cardiovascular diseases such as strokes and heart attacks, which are themselves risk factors for Alzheimer’s disease and vascular dementia, the latter being a common type of dementia caused by reduced blood flow to the brain. It is estimated to affect around 150,000 people in the UK. During my time here I have been allowed, in fact encouraged, to do as much for myself as possible but also know that help will always be provided when asked for or clearly needed. We are all different, we may be ‘classified’ as humans but each and every one of us is different. We are clearly individuals. I saw a question online recently, asking “Why does modern science classify humans as animals, even though humans are clearly distinct and different from animals in many ways?” But we are, because humans can move on their own so they are classified as being in the animal kingdom. Further, humans belong to the animal phylum known as chordates because we have a backbone. The human animal has hair and milk glands, so we are placed in the class of mammals. Within the mammal class, humans are placed in the primate order. Unlike plants and algae, which produce their own nutrients, animals are heterotrophic, feeding on organic material and digesting it internally. That’s enough biology, I think! I found a further reply to this ‘animal’ question, which included a picture of two skeletons that at first glance one could easily imagine were of a fat man and a skinny one as, except for their proportions, the similarity was clear. However the skeleton of the ‘fat’ man is actually that of a gorilla. It was also pointed out that gorilla and human DNA are 98% identical.
But back to the world of Care Homes. Here we have around thirty ‘inmates’ as I like to call us and naturally, each and every one of us is different. We all go through the day in our very different ways, creating new memories and I think back to 2020 when I was in hospital after my last heart problem. I have vivid memories of that time, at first not knowing quite where I was or even who I was. For all I knew I might have died! Then I saw a television on the wall and was pretty certain that I was still ‘me’, I was still human and still on Earth. I am also reminded of the time back in January 2016 when I had my teeth out and was given Temazepam, it took me a few hours to recover from taking that and starting to recognise the world around me once more. To this day I have no real memory of the few hours which passed as I was having my teeth removed! But I suddenly found myself back in my flat and I heard a friend of mine who had been with me and got me safely home chuckle and say “Oh, you’re back with us again now are you?”. He is a good friend. I have heard about folk getting ‘high’ on drugs, also of people drinking so much alcohol that they lose the memory of where they are or what they are doing so I don’t know how folk who take drugs on a regular basis can possibly manage. I guess it is why some folk turn to theft in order to fund the habit. I have needed regular medication for very many years now to control my epilepsy and later my heart, but even those are carefully monitored. We are born, we grow, we develop individual characteristics. I have seen how identical twins each have their own personalities, despite being brought up together. That individuality remains but our personalities can alter as this does depend on our interaction with others. For example someone with a strong personality might become a narcissist and attempt to ’take over’ the behaviour, actions, thinking and ideas of another person, getting them to do what they might not otherwise do. Alternatively there may be someone who decides to live by themselves and to have minimal contact with others. A great many will have a personality whereby they want to be the centre of attention, or perhaps know everything about everyone, even simply having to be ‘right’, or never willing to accept change. Equally there will be some, perhaps a bit like me, who prefer a quiet life, to read, to learn, share and hope to teach others of things they might not otherwise have known. I see many different people here and am learning how they are needing, some more than others, help in their daily lives, even in just the simplest of things. I have more of an idea now of the levels of dementia and I have detailed just a little of the basics below. So the staff here in this Care Home have to be quite alert to the ways and habits of each and every one of us. They really have to be. A little while ago I heard a ‘new’ inmate say “Does anybody know why we can’t go out?”, whilst another time an inmate felt they had no money and thought they had to pay for the food being served. They were told it was already paid for and not to worry. Then later I saw another inmate being led back from an adjacent care home on the same site. We share the same lovely garden. So whether that inmate was just exploring, was lost or looking for a way out, I have no idea. I will detail more on here later with regard to the effects of dementia.
When I was moved to this care home in July 2020, it was in the middle of the Covid-19 pandemic and all the staff were very careful to ensure that us inmates were all kept isolated as far as possible. In any case I had transferred from another care home, so mine was a mandatory fourteen-day isolation even though I had been given the ‘all-clear’. That suited me, it gave me time to adjust to my new surroundings, for which I was grateful. I was then able to mix with the other folk here, but because we were kept isolated as much as possible and not allowed to leave the building on our own, it felt like we were in prison, albeit for our own good as much as anything else. Hence the reason for me humorously naming this blog as I have! But I have seen how dementia affects the people here and so was determined not to ‘lose’ myself. I began writing, something a good friend had suggested when I was busy with my photography work. This weekly blog has been going for over two years now and I am enjoying the work as it keeps my mind active, I am learning all the time and my blog posts seem to be recalling past memories for some. So I began to refer to the others residing in this care home as inmates, not in a detrimental way but as a bit of gentle fun. But I did have to change the title of my blog from “Diary Of An Inmate” to “Diary Of A Care Home Inmate”, as some readers thought I really was in a prison, which I most definitely am not! But the inmates here have to be kept a close eye on and carers notice if one isn’t where they are expected to be. I tend to stay in my room here, going to the tv room and walking up and down, sometimes going to the dining room for lunch then sitting in the gardens if the weather is fine. But with temperatures becoming so high recently I have had to adapt and find cooler areas to sit. This heat has been almost too much for me, but happily there are electric fans strategically placed and things have begun to cool down.
As I have said, dementia is a brain condition, our brain is a control centre and it determines absolutely everything we do, say and think. When the brain is not well we have problems with all our actions, doing basic things like eating, drinking, remembering things, speaking, understanding and learning new skills. That has become very clear to me here as I see the people around me who have dementia. However, it seems that there are specific stages of dementia which are commonly assigned, based on symptoms. My research has also shown that it can be quite helpful for Carers to know how symptoms change over these stages. I have learned that health professionals often discuss dementia in terms of the stages which refer to how far a person’s dementia or Alzheimer’s disease has progressed and defining these stages helps physicians determine best treatments as it aids communication between doctors and caregivers. Dementia is generally considered in three stages, these being mild (or ‘early’), moderate (or ‘middle’) and severe (or ‘late’). But a more specific stage of dementia is commonly assigned based on symptoms. It can also be helpful to know how symptoms change over the stages, as Alzheimer’s and similar diseases can cause dramatic swings in mood and behaviour, because the activities a person is physically able to do will change as their level of dementia progresses. This causes stress for friends and relatives, but knowing what is coming can help prepare for social, medical, and personal needs. So rather than simply using ‘early stage’, ‘middle-stage’ and ‘late-stage’ dementia as descriptors, there are scales that provide a more comprehensive description and these scales help better understand the different stages of Alzheimer’s disease based on how well a person thinks (cognitive decline) and functions (physical abilities). I found a few different websites on all this, one which said that these scales are known as the Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS), the Functional Assessment Staging Test (FAST), and the Clinical Dementia Rating (CDR). I believe these are American terms, but I think the ideas are all basically the same. Of the ones I have mentioned, the most commonly used scale is often referred to simply as GDS. It is divided into seven stages based on the amount of cognitive decline and this test is most relevant for people who have Alzheimer’s disease because some other types of dementia do not always include memory loss. Those in Stages 1 to 3 do not typically exhibit enough symptoms for a dementia diagnosis, so by the time a diagnosis has been made a dementia patient is typically in stage 4 or beyond. Stage 4 is considered ‘Early Dementia’, stages 5 and 6 are considered ‘Middle Dementia’ and stage 7 is considered ‘Late Dementia’. So Stage 1 displays no cognitive decline, the brain has normal function and no memory loss so there is, quite naturally, no expected duration. Stage 2 displays very mild cognitive decline where names are forgotten and familiar objects are misplaced, but symptoms are not easily evident to loved ones or doctors. There is no known expected duration at this level. Those in Stage 3 display mild cognitive decline with increased forgetfulness, slight difficulty concentrating, decreased work performance, a difficulty finding right words, they get lost more frequently and it is at this stage that loved ones begin to notice. The average duration of this stage is between two and seven years. In Stage 4, early-stage dementia, they display a moderate cognitive decline with difficulty in concentrating, forgetting recent events, an inability to manage finances and an inability to travel alone to new places. They have difficulty completing tasks, they are in denial about symptoms, they have socialisation problems and withdraw from friends or family. It is at this point a physician can detect cognitive problems. The average duration of this stage is two years. At Stage 5, moderately severe cognitive decline, they display major memory deficiencies, they need assistance with basics like dressing, bathing, etc., they forget details like their address or phone number, they do not know the time or date, or even where they are and the average duration of this stage is one and a half years. In Stage 6, which is severe cognitive decline (Middle Dementia) they cannot carry out basics without help, they forget the names of family members, of recent events and of major events in past. They have difficulty counting down from 10, they suffer from incontinence (loss of bladder control) and they have difficulty speaking. There can be personality and emotional changes, delusions, compulsions and anxiety. An average duration of this stage is two and a half years. Then in Stage 7, this being very severe cognitive decline (Late Dementia), they cannot speak or communicate, they require help with most activities, there is a loss of motor skills and they cannot walk. The average duration of this stage is one and a half to two and a half years.
There is also the Functional Assessment Staging Test (FAST) which is another scale that describes the stages of dementia and like the GDS Scale, FAST is a seven-stage system but based more on one’s level of functioning and ability to perform Activities of Daily Living (ADLs) than on cognitive decline. It should perhaps be noted that a person may be at a different stage cognitively (GDS stage) than functionally (FAST stage). FAST also has seven stages, where Stage 1 (normal adult) has no functional decline, Stage 2 (normal older adult) has personal awareness of some functional decline, Stage 3 (Early Alzheimer’s) displays noticeable deficits in demanding job situations, Stage 4 (Mild Alzheimer’s) requires assistance in complicated tasks such as handling finances, travelling, planning parties, etc., Stage 5 (Moderate Alzheimer’s) requires assistance in choosing proper clothing, Stage 6 (Moderately Severe Alzheimer’s) requires assistance with dressing, bathing, and toileting and experiences urinary and fecal incontinence whilst in Stage 7 (Severe Alzheimer’s) their speech ability declines to about a half-dozen intelligible words. There is also a progressive loss of ability to walk, to sit up, to smile, and to hold head up. I have also found that there is the Clinical Dementia Rating (CDR) scale, which uses a five-point system based on cognitive (thinking) abilities and how well a person functions. This scale is widely used in dementia research, not as a tool for communication between medical professionals, patients, and their families.
I have found all of the information detailed regarding GDS, FAST and CDR directly from the Internet via the Dementia Care Central website. As you might expect, there are other websites but it seems that the descriptors are pretty much the same. Whilst I hope you find all this useful, it is not my intention or my place to offer advice on such matters, merely to share what I have found in my research. I believe that any further information should be directed to a healthcare professional, as there is advice available from them on caring for someone and which is based on a person’s stage of dementia, including technology, that can help each individual and their carers, also which types of assisted living homes, if required, are most appropriate. I know I have learned much during my time here.
This week…
An American, a French man, a Spaniard and a German were all attending an ‘online’ Zoom meeting. The supervisor asked them, “Can you all see me ok?” To which they answered,
“Yes” “Oui” “Si” “Ja”
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Diary of a Care Home Inmate 