Phases of Dementia
through the eyes of relatives
Dementia is a neurocognitive disorder characterised by a global cognitive deterioration, resulting from a progressive and irreversible declinein brain function. Depending on the stage of the disease, in addition to cognitive impairment, dementia also involves other pathological manifestations in the behavioural and emotional spheres.
Depending on the stage of the disease, dementia takes 3 forms:
1. Mild dementia
2. Moderate dementia
3. Severe dementia
Mild dementia
Mild dementia is the early stage of the disease. Cognitive impairment begins to occur, but it is mild, so both patient and carer do not attach much importance to it or blame it on normal ageing.
Often the patient, often accompanied by a family member, presents himself to the psychiatrist for other mental symptoms and not for the cognitive ones. The family member reports to the doctor that the patient has changed, he is no longer the same person, he is sadder, more dejected, he no longer laughs, he no longer socialises like he used to”. Then during the dialogue between the doctor and the patient, when the doctor asks various questions to test the cognitive abilities, the relative becomes very confused, surprised but also indignant about the answers given by the patient, retorting, “how can you not know these things?” “but he knew them at home, doctor”. It is only at that moment that both the patient and the relative realize that in addition to the affective symptoms they noticed and for which they went to the doctor, there are also other problems, such as cognitive ones.
The clinical picture of mild dementia is composed of the following types of symptoms:
Affective symptoms:
👉 irritability
👉 irritability
👉 apathy
👉 lack of energy
👉 diffuse anxiety
👉 headaches
Cognitive symptom:
👉 short-term memory impairment, miscalculation. 👉 attention deficit disorderSleep disorders
👉 insomnia of falling asleep 👉 waking insomniaAt this stage of the disease the patient is independent in terms of daily activities. However, periodically, a carer should check on the health. This stage is often missed by patients and carers, who come to the psychiatrist at a more advanced stage of the illness.
Moderate dementia
Moderate dementia is the stage in which cognitive symptoms become apparentespecially for the caregiver, sometimes also for the patient.
At this stage of the disease the caregiver notices the appearance of memory and attention disorders of the patient as well as difficulties in temporal-spatial orientation or difficulties in performing certain daily activities (Caregivers state: “he doesn’t judge properly, he doesn’t do things properly, he does them halfway, he forgets where he puts certain objects and then he looks for them for hours and because of this he gets angry and becomes verbally aggressive. He doesn’t know what date we are, he barely knows the town he lives in and maybe the year we are, that’s all. He has days when he sits unkempt, goes to bed in the same clothes he wears all day.”
On the other hand, some patients tend to deny these issues, blaming the symptoms on a poorer mood or a single episode of memory and attention decline. However, there are also patients who are aware of these memory losses that are becoming more and more frequent and affect their daily life, telling the doctor “I forget, doctor, I forget more and more often. Sometimes I forget why I went into the room or forget where I put something 5 minutes ago. I’m not me anymore, I can’t concentrate on doing things right.”
At this stage of the disease, during the consultation, when having to answer certain questions asked by the doctor or psychologist, the patient tends to turn their head to the carer to get their assurance as to whether or not they have answered correctly or even to ask them the answer to the question they have been asked.
Also in the socio-familial environment the patient tends to ask the same question 2 or 3 times in a short period of time, completely forgetting the answer received or not being sure if the answer was well remembered. This continuous insecurity of the patient leads to the accumulation of inner frustrations, to a state of irritability and irritability, to a decrease in daily performance and leads to feelings of uselessness and hopelessness, to a decrease in self-esteem and to the development of a generalized state of anxiety.
The accumulation of these cognitive, affective and behavioural symptoms has a major impact on both patient and caregiver. In this sense, the carer has to find a solution so that the patient is safe and the quality of life is as good as possible, while the patient has to accept that he/she is no longer 100% independent and needs someone to support him/her in certain situations. This is often where the patient’s categorical refusal to accept this help from someone outside the family comes in.
The symptom picture of moderate dementia is represented by:
Affective symptoms:
👉 sad mood
👉 irritability
👉 irritability
👉 low tolerance for minor frustrations
👉 psycho-emotional lability
👉 apathy
👉 decrease in personal useful yield
👉 low self-esteem
👉 feelings of worthlessness and hopelessness
👉 tendency to social isolation
👉 impulse censorship difficulties
👉 generalized anxiety
Cognitive symptom:
👉 memory fixation disorders (short-lived)
👉 evoked (long-term) memory impairment,
👉 miscalculations
👉 decrease in spontaneous and voluntary attention.
👉 decreased judgment and reasoning ability
👉 prevalent ideas of self-blame and guilt ,,are a burden”
👉 decreased self-care and self-driving ability
👉 disorders of temporo-spatial orientation
Sleep disorders
👉 insomnia of falling asleep 👉 waking insomniaAt this stage of the disease the patient is no longer 100% independent, he needs supervision and support in carrying out certain daily activities.
Severe dementia
Severe dementia is the most advanced stage of the disease and caring for patients at home is becoming increasingly difficult.
Severe dementia is the most advanced stage of the disease and caring for patients at home is becoming increasingly difficult. Due to severe cognitive decline, patients no longer have the capacity for judgment and reasoning, they no longer understand what their caregivers or others around them communicate ( “Stop judging, doctor, he doesn’t understand anything I say, it’s like he’s in another world”), they are temporally and spatially disoriented, they do not recognize close people ( “He doesn’t know I’m his daughter anymore, he calls me a different name when he sees me.”) become psychomotorally agitated and even aggressive, perform dangerous activities for themselves and others (“He wanted to light a fire and set the blanket on fire, lucky I was in the next room”).
Also at this stage of the disease patients may experience auditory or visual hallucinations that influence their behaviour, with relatives stating “I don’t know what to do with him anymore… he talks to himself, he says that a sister of his came to him and she is dead.”“he hears all sorts of things and then he gets scared and goes to bed”.
This severe cognitive decline favours the development of fulminant and other somatic conditions, increasing the risk of becoming bedridden, which has a significant impact on caregivers, who have to call in a caregiver to stay with the patient continuously or decide to admit them to a palliative care centre.
Although from the outside it looks like a fairly easy decision to make, as a parent it is a very difficult time. On the one hand, you want your mother or father to stay at home, in their own backyard where they have lived their whole lives, but on the other hand you are aware that the best option for proper care would be to be admitted to a specialised centre.
Some caregivers decide to be the day-to-day caregivers themselves, and this decision can be really challenging. It’s a good feeling to be able to care for those who gave you life and raised you, but at the same time it’s difficult to watch them progressively deteriorate without the ability to stop that decline.
Caregivers of patients with severe dementia may also experience different mental states, ranging from feelings of guilt such as “I could have done more for my parents, maybe if I’d gone to the doctor earlier it wouldn’t have ended up like this”, “I abandoned my parents at the asylum”to states of tension and exhaustion and “I can’t go on at this pace, with sleepless nights and so many problems arising daily” or feelings of resignation “We’re all going to end up like this, sooner or later…”.
At this stage of the disease the patient requires continuous monitoring and support.
The clinical picture of patients with severe dementia consists of:
Affective and behavioural symptoms:
👉 psychomotor agitation
👉 irritability
👉 irritability
👉 low tolerance for minor frustrations
👉 impulse censorship difficulties
👉 physical and verbal heteroaggression
👉 feelings of worthlessness and hopelessness
Cognitive symptom:
👉 severe attention and memory disorders
👉 lack of judgment and reasoning ability
👉 lack of self-care and self-driving ability
👉 delusional ideas of persecution and prejudice
👉 auditory and visual hallucinations
👉 total temporal-spatial disorientation
Sleep disorders
👉 insomnia of falling asleep 👉 waking insomnia 👉 daytime sleepinessConclusions
Dementia is a complex condition that goes beyond memory impairment and involves a lot of effort on the part of those around you. Thus carers play an important role in managing the various symptoms that occur during the course of the disease. Although it is a real challenge, they can influence the course of the disease by following the instructions given to them by doctors regarding treatment and care at home. ( “She’s calmer, she’s calmer, she sleeps at night.”, “She’s more oriented, more attentive, she doesn’t do things backwards anymore.”).
Author: Dr. Emanuel Voina – Psychiatrist
We, the specialists at Med Anima, inspire hope, offer help and and restore well-being. In this consuming journey we are by your side and, as sometimes it may not be easy for you to visit our clinic, we have written a Guide for relatives, under the coordination of Dr. Iuliana
Fecioru - psychiatrist.
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