When it comes to recognising the early signs of dementia, there are often many common misconceptions with regard to the symptoms, progression and changes surrounding the condition. In the third instalment of
Exploring Dementia with Professor Graham Stokes, Graham, the Director of Memory Care Services at HC-One, delves into how we can recognise the early signs of Dementia and some top tips to help people living with dementia.
Graham, what is one of the most difficult things about noticing early symptoms of Dementia?
Dementia affects everyone differently, yet for nearly all people the early symptoms are mild and not always easy to notice. Whilst it is possible to compile a list of common early-stage signs, and at the end of this article the most well-known symptoms will be described, such an approach can never capture the lived experience of dementia, an experience when appreciated explains much that can seem exasperating and inexplicable to families and friends.
So what is the most common misconception?
In the beginning, dementia is rightly considered to be a memory problem, but this doesn’t necessarily mean the person is forgetting more than usual. The problem is actually more to do with the person not remembering in the first place. What has been done, what’s going on around them or what they intended to do never enters memory. It is thought about, heard, seen, completed and understood but it is not stored to become a memory. The person has not forgotten, instead as the parts of the brain, especially the hippocampus that enable us to concentrate and turn events, information and experience into memories, knowledge and learning are progressively damaged this no longer happens as efficiently as it once did.
As months pass, the problem with retaining information progressively worsens, however to help our understanding of how the early stage of dementia feels for the person let us speed up the process. Imagine last Monday is the beginning, the first day a few experiences are not stored. Having not been remembered, they can never be recalled. It’s as if they never happened. On Tuesday, difficulty remembering is a touch worse. On Wednesday more so. By Friday, as the person looks back at the week that’s passed their recall is patchy, but to them this is not how it feels for they do not remember they are not remembering. Yet others are puzzled why they are recalling so little. The person protests conversations have never been had. The person will have made mistakes as a result of not storing information, failing to do what they said they would do. At times they will present as puzzled when reminded by others what had happened, been done and said, even promised. They may feel they are being wrongly accused, blamed, criticized, and as a result react badly. Relationships are affected as others start to struggle with the person’s apparent inability to understand what is actually happening in their life. The person may come over as emotionally unpredictable. For example, they may have lost their temper when told they had not done something they had agreed to do, angrily denying this was so and storming out of the room, yet on their return a short while later all is ‘sweetness and light’. Why? Because once more an experience has not been remembered. To them another event has not happened. Their life is now less a continuous thread and more becoming fragmented and disjointed experiences, most remembered but as more days pass many are not.
A month passes, and every morning the person living with dementia wakes there is less and less recall of the previous day’s events. The person is less in touch with the reality of their life. Little is being remembered and that which is, is now increasingly forgotten. Effort that is tiring, and on occasions exhausting is being put into remembering because whilst they are adamant they are being unfairly accused and criticised, life feels ‘wrong’. There will also be flashes of insight that they are forgetting, which in turn undermines confidence.
So what happens when someone starts to ‘forget’?
Despite efforts to remember, they still continue to forget. In the beginning it is details that are forgotten, not the experience. The person knows there was a conversation, but what was said? They know they promised to do something, but what? They know taps are running and a meal is cooking but the bath still overflows and the saucepans boil dry because they forget to check when they should have done.
However, awareness is only partial. The person knows themselves to be a competent, responsible person, one who rarely forgets, let alone makes mistakes, so when things cannot be found, have they mislaid them, possibly lost them, of course not, somebody else has moved them, taken them or even stolen them. They might start to hide their possessions for safekeeping. Suspicions reign. Others are blamed. Is this paranoia, or are these the words of somebody who is simply trying to seek reasons for what is inexplicably happening? And as they seek understanding the knowledge they draw on is they would never be so careless for that is not who they are, so others have to be to blame.
Despite indications to the contrary, as evidenced by mistakes and mishaps, in these early times the person remains eminently sensible. Knowing they are losing the threads of conversations, forgetting names, not recognising people, even repeating themselves, they may begin to avoid people, no longer wanting to meet friends.
Some fear if they go out they may forget where they are heading, how to get there, even become lost, going out is something to avoid even if their decision appears selfish or just plain impossible to understand. Changes in routines are not welcomed, because change means life is different and difference means new information has to be remembered and not forgotten and that’s where their problem lies. The person becomes set in their ways and is sometimes unreasonably stubborn. Their actions are unquestionably out of character but that doesn’t mean their personality has changed. Instead, it’s their behaviour that is transformed because they are having to cope with the enormity of what is befalling them, a lived experience that we can barely comprehend.
Mr Bryan didn’t like people coming to their home…He would say, “No more. I don’t want people here. I make a fool of myself. I forget names. I don’t recognise people, I lose the thread of the conversation… And never again do I want to see that expression on people’s faces that immediately tells me that I have repeated myself. They can never hide it.” So if people called round, without saying anything he would get up and walk out.
Interesting. Graham, what then happens to our memories?
As days and weeks pass so much has ‘never happened’. This is the early lived experience, but let us return to that first Monday. This was the day when memory gaps first appeared. Before that day experiences have been successfully stored, those from the recent past, as well as those that are historical and accessed as joyful recollections, lessons learned or just everyday knowledge. However, as dementia progresses the areas of the brain that turn experience into memory and learning, start to lose their second function, namely to be our memory store. The loss of memories follows the principle ‘what you learnt last goes first, what you learnt first stays the longest’, therefore recent memories are the ones that disappear early on, with memories from long ago being retained.
The outcome is that there is a stretch of memory loss, all that is happening day after day is either not remembered or forgotten, and what was known disappears with latest memories going first.
Jimmy and his wife had been planning for his retirement for over two years. Mortgage free at long last meant that, with their children settled, they could save and then live life to the full. For this couple this meant travel. A map of the world was pinned on the inside of the bathroom door. Red pins highlighted places abroad they had already visited, all in Europe except the one that was placed on the west coast of Canada, their one and only far-flung holiday. The blue pins dotted across the world were the exotic and adventurous places they were going to visit. But soon after Jimmy started to mislay his keys, couldn’t remember where he had parked the car, or would forget what he was going to do next. At first his absent-mindedness was amusing. “What was I saying?” became his catchphrase. One day Jimmy walked into the kitchen and said, “Cathy, why are there different coloured pins on that map in the bathroom?” In that moment Cathy’s world collapsed.
In the same way we sped up the progression of losing the capacity to remember to help our understanding of dementia, we can understand the loss of established memories in a similar way. Recollection of most recent memories is affected first. Into this abyss of expanding memory loss falls the person, their behaviour, their feelings and their ability to be a responsible and competent person. Increasingly, the person talks about the past but to them it is not ‘the past’ for memories are experienced as current for all that is more recent has ‘never happened’ or has been forgotten.
Progressively the person’s knowledge of their world and their understanding of what is expected of them is increasingly historical so they come over as out of touch with what is truly going on around them, and words like ‘disoriented’, ‘muddled’ and ‘confused’ are used to describe them. Words that barely do justice to how they are feeling. This is the lived experience.
So what happens as the Dementia advances?
In the early stage, which crudely lasts for a couple of years after the first signs appear, dementia is very much a memory disability. However, in the intellectual undergrowth subtle changes are happening. Language is affected by minor word-finding difficulties resulting in the person not being able to find the words they need, or instead they choose the wrong word (for example, saying ‘putting it away’ when a father talking about his son not getting a job meant to say, ‘my son keeps putting it off’). Reasoning and thinking are also subtly deteriorating, so whilst problems around the house which early on result in partners and children having mounting concerns are largely to do with failures of memory, there are also likely to be errors of judgement and poor decision-making. As these and other cognitive changes come to the fore, dementia ceases to be a memory disability and becomes a general intellectual disability. The stage of moderate dementia is reached.
So what are the Early-stage symptoms of dementia?
- Memory problems - These are the most well-known early symptoms. For example, a person may not remember events, fail to put names to faces or may keep losing items (such as keys and glasses) around the house. They may start to forget details of conversations or struggle to use everyday domestic appliances. Memory loss is often the first and main symptom in early Alzheimer’s disease. It is also seen, although less often, in early vascular dementia and dementia with Lewy bodies.
- Difficulties in thinking things through and planning - A person may get muddled more easily and find it harder to plan, make complex decisions or solve problems.
- Language and communication - A person may struggle to find the right word in a conversation, or they might not follow what is being said or be unable to complete their sentences.
- Disorientation - A person may struggle with the passage of time and may no longer recognise people and places
- Visual-perceptual difficulties - This can cause problems judging distances, for example when using stairs. Shiny floors can appear wet and slippery, whilst patterned floor coverings become increasingly difficult to distinguish between design and actual objects that need to be picked up or stepped over. They are more common in early-stage Alzheimer’s disease and dementia with Lewy bodies.
- Changes in mood or emotion - The person may be more anxious, frightened or sad, and is at risk of depression, possibly because they feel out of control. It is also common to become more irritable or easily upset. A person can often be more withdrawn and feel overwhelmed by the demands of daily tasks.
What are your top tips to help the person living with dementia?
- Have a routine. An organised and well-ordered life provides predictability
- Unclutter life. With less to remember, there is less to forget. A streamlined life means there is less to do, and hence less to know.
- Never say I’ll do it in a minute. Instead do it right away
- Write things down, such as what’s been done and what needs to be done. Immediately cross jobs off the list when they are done
- Carry a notebook to keep a record of important information such as, phone numbers, names, ideas and appointments
- Place sticky notes around the home with reminders, not just on tables or on the arms of chairs, but on doors to be seen when walking around
- A place for everything, and everything in its place
There are also medicines available to treat Alzheimer’s disease. They can help to temporarily reduce or slow down the onset of symptoms in as this is the most common cause of dementia.
These medicines are donepezil (also known as Aricept), rivastigmine (Exelon) and galantamine (Reminyl) are used to treat the symptoms of mild and moderate Alzheimer’s disease. For those people for whom the medicines help, symptoms improve for around 12 months. This effect then starts to wear off, so symptoms gradually get worse over the following months.
Do you have any advice for families and friends supporting someone who affected by dementia?
- When frustrated and exasperated walk away, don’t argue
- Take time for yourself
- Never say, ’don’t you remember’ or ‘I’ve already told you’ for that risks confrontation and anger for the person is not helped by hearing they have forgotten something
Professor Graham Stokes: an expert in memory care
Professor Graham Stokes is a clinical psychologist with more than 30 years’ experience in dementia care. He is one of the most influential people working in dementia in the UK and has been involved with many leading initiatives in his field. In his previous article, Graham explored how we can keep ourselves as healthy as possible to reduce our risk of Dementia. If you haven’t read our previous article, you can find it
here.
Memory care at HC-One
Many of our homes at HC-One offer dedicated memory care services for Residents living with dementia. Our Colleagues are specially trained to care and understand the needs and aspirations of each individual living and to provide them with the kindest possible care and person-centred support. We also have homes offering nursing care for older people living with dementia, who have additional health needs that require care and support from qualified nurses.
For more information about homes in your area, please contact our friendly Careline team on: 0333 999 8699