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Experiencing memory loss in dementia and how it feels as a patient

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Memory loss is one of the first few signs to occur when an individual is diagnosed with dementia and it definitely takes a toll on the patient’s mental and cognitive functioning. Initially, lapses in memory may be considered as normal age-related forgetfulness which occurs as a person grows older. However, memory issues in dementia are much more persistent and severe, and they even interfere with an individual’s day to day activities.

Memory loss and the consequent problems affect each person differently. For some people, it is easier to retain certain skills associated with memory till the very end or till a much later stage. They may be able to recall a great number of facts and experiences, dates, names and even earlier memories. For others, however, memory lapses are consistent from the very start which drastically affects them and their routine functioning.

The loss of memory is often explained by damage to the brain cells which weakens the ability and functioning of those brain cells to communicate with each other. This gap in communication subsequently affects feelings, behavior and the ability to think. Different parts of the brain get affected by this condition which leads to different types of dementia. One of the major parts of the brain that gets damaged is the hippocampus which plays a very crucial role in retaining a person’s memory.

Even though memory loss in dementia affects everyone differently, there are some common memory-related problems that are experienced by many dementia patients. These include forgetting recent events or conversations, missing out on important dates and appointments, not being able to remember names of people or objects, struggling to find the correct word in a conversation, forgetting taking their medication and being unable to recognize faces that were once familiar.

People with dementia also tend to become disoriented in time and space which may be the consequence of lapses in memory they face. Their whole routine which also includes their time to eat, sleep, etc. gets significantly disrupted as well due to memory issues. This disorientation often also causes them to believe that they can get lost in their own home or that people around them, caregivers, for instance, have been gone for hours when in reality they just leave their side for 5 minutes.

If anything at all, these memory issues and problems cause significant distress and anxiety among dementia patients. For them, the main problem might not be the inability to remember time and date or the difficulty they face in recalling certain information. It is actually more about how these daily disruptions make them feel. That feeling of anxiousness that lingers around them each day and the fear of the unknown is terrifying, to say the least. Not knowing whether they’ll be able to find the way around their own home, getting lost in a busy crowd or detaching from their caregiver can really mess with their mind. The fact that it is midday or midnight may not be as important for dementia patients but the thought of having missed lunch or dinner with family or missing out on an important event may cause them great distress.

Even if these patients are disoriented in space and time, they may still experience a great level of anxiety and anxiousness mainly because of the fact that their days and nights have no structure and they don’t know what’s going to come next or that anything can happen in the strange environment they live in.

It can be equally upsetting and frightening for dementia patients to not be able to remember things or relationships from the past. Even things and people from the present may seem unfamiliar to them. Dementia patients can experience great difficulty in being able to recognize their spouse or children which can drastically impact their personal and social relationships.

When asked what dementia feels like, Wendy, a patient, went on to explain that every day is different. On bad days, the brain is super foggy and confusion kicks in from the second you wake up. The feeling is almost like there is not enough left in your brain to get you through the day. She also says that on some days, the level of confusion is so heightened that it’s a struggle to remember what day of the week it is and what is it that you are supposed to be doing. You feel all tangled up from the inside and one by one you have to untangle those knots to feel calm and be at peace. If you are unable to bring peace and figure out what day it is and what you are supposed to do, panic makes its way into your body. In situations like these, you feel out of control and it can feel like your head will explode.

Another patient, Kate Swaffer, on the other hand, responded to the same question by saying that it narrows down to a few feelings that are constantly recurrent in nature; frustration, confusion, embarrassment, isolation, anger, irritation, loneliness, and a deep sadness. One of these feelings is also that of worry because one is constantly faced with an “ever-changing playing field” where you don’t know which one of your functions will be impaired or lost the next day. She further added another feeling which is that of guilt and is also relatively constant. The guilt in her arises from the fact that she cannot be the kind of mum she wants to be for her boys. And that she can’t be the kind of partner or wife she hoped to be or wishes she were. The fact that her husband has to keep changing his behavior and thinking to stay well-connected with her further worsens the feeling of guilt.

While there may be better days too where people with dementia are better able to deal with their situation, it doesn’t change the fact that it is a severe condition with drastic consequences. Once that braintest gives its diagnosis for dementia, it is best to start the treatment right away and take preventive measure to stop it from progressing any further.

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