Coping with MCI – A personal journey

This blog, was mainly created to enable me to vent some of my personal frustrations with my MCI.  However, it has turned into a spot whereby I feel I could actually help another human by sharing some of my own journey.

MCI, is frustrating.  Simple as that.  But to be able to cope with those frustrations is probably half the battle.

I’ve listed here a number of techniques/suggestions to help compensate for any memory decline that interferes with your enjoyment of life, your effectiveness at work, relationships and to help support your personal goals for the future.

I’ve tried most of them as well and they do work, those I found to help me better I’ve highlighted but in honesty it’s really the mix that works, not one element.

·         Be patient with yourself and ask your family to be patient with you.

 

·         Under that you may feel frustrated, anxious or sad at the loss of some abilities.

·         Slow down, this can make it easier to remember or complete a task.

·         Learn more about MCI (I try to assist with my blog articles), share what you learn with those around you – by sharing this will enable them to have a better understanding of the changes that are affecting you.

·         Have a plan in place for your preferences when it comes to making decisions affecting your life.  Should the MCI progress to dementia this will help with future “Best Interest” choices.

·         Like me, with this blog, find a constructive way to release anger and frustration.

·         Exercise, now I rarely do not because I’m lazy but because I spend an amazing amount of time feeling tired and exhausted.  But exercise is a good way to reduce stress, contributes to your physical health and there are reported benefits of keeping the brain healthy.

·         Talk, with close friends or a counsellor.  Depending on your age consider joining a support group for people with memory loss.  The Alzheimer’s Association has support groups for those with early stage Alzheimer’s, including people with MCI – but as I found these group are geared for an older population not someone who’s in their 30’s.  It does help to talk to others going through the same experience, or one that is similar.

·         Encourage your friends and family to seek out counselling and support to meet their needs.

·         Participate in family events if you are able – and keep in touch with friends.

·         Use visible and/or accessible reminders.  Writing notes to yourself, or having a large calendar to track appointments can help.  Thanks to modern technology I also use the reminder and alarm function on my mobile to remind me of shopping lists or upcoming events.

·         Document your own story – your personal journey. I share mine with the world but you can simply use yours to reflect and share with those close to you.  I blog but you might like to create a scrapbook or keep a journal.

·         Keep your mind active – doing things you enjoy puzzles, reading the paper, music or even learn something new. I’m currently studying online for a diploma.

·         Join me and become an advocate, promote awareness about MCI, assist community groups in training staff and professional about MCI.

And finally –

Remember you are more than someone with MCI – celebrate you and the many varied personal attributes you possess.

MCI vs Alzheimer's and Dementia

In the years, I’ve spent living with MCI I have struggled to find support and groups which match my needs.  This may be because there is an overlap between Alzheimer’s, Dementia & MCI.

All 3 can have varying interpretations, even by healthcare professionals, yet their meanings are distinctly different.

I’m in my 30’s and support seems to be tailored towards the Older generation and groups steered the same way.

It is my aim to try and promote the need for better support within the MCI community for those of all ages but to also clarify the difference to prevent further confusion.

Mild Cognitive Impairment (MCI)

In my case, MCI is slightly more than having a “Brain Fart”, for everyone it is a cognitive change within the brain. These changes are more frequent than what is “normal” for an individual at a particular age and is usually thought of as the stage between normal forgetfulness due to age and the development of dementia.

For the most part MCI memory problems may be minimal to mild and are hardly noticeable to the person – I’ve found from personal experience that writing reminders can help for these mild changes.

Symptoms of MCI can include:

·         Difficulty performing more than one task at a time

·         Difficulty solving complex problems or making decisions

·         Forgetting recent events or conversations

·         Taking longer to perform more difficult mental activities

Importantly, a diagnosis of MCI doesn’t mean doom and gloom, you’re still able to perform your usual daily activities with minimal change and difficulty.  When this is no longer the case, then dementia becomes a more appropriate term to describe the condition.

Dementia

Dementia, unlike Alzheimer’s isn’t a specific disease.  It is a group of symptoms affecting intellectual and social abilities sever enough to interfere with daily functioning.

Memory loss, which generally occurs in dementia, alone doesn’t mean dementia.  The term dementia implies there are problems with other brain functions as well, and that more than one dementia symptom is present.

These symptoms include:

·         Memory loss

·         Language problems

·         Inability to learn or remember new information

·         Difficulty with planning and organizing

·         Difficulty with coordination and motor functions

·         Personality changes

·         Inability to reason

·         Changes in behavior

·         Apathy or loss of interest in activities

·         Paranoia

And symptoms can be due to many things such as

·         An underactive thyroid

·         Vitamin deficiency

·         Brain tumours

·         Depression

Through my own research I have also found that even certain medications can cause dementia symptoms.

However, if during a medical evaluation these reversible causes of dementia are rules out then the probable cause of dementia may be due to Alzheimer’s.

Alzheimer’s

Alzheimer's causes brain changes that gradually get worse. Two abnormal structures called plaques and tangles are prime suspects in damaging and killing nerve cells, causing a steady decline in memory and mental function.

In many older people, Alzheimer’s is the most common cause of progressive dementia symptoms.

Symptoms are similar to those described above under dementia, which is why the terms are often used interchangeably.

However, dementia is simply a set of symptoms, whereas Alzheimer’s describes what is causing the symptoms.

Another reason it gets confusing is because the lines between normal age-related memory loss and mild cognitive impairment are blurred and overlap, as are the lines between MCI and early stage dementia caused by Alzheimer's.

Unlike Alzheimer’s

Unlike Alzheimer’s – where the cognitive decline is gradual – people with MCI may remain “stable” for years.

And while not everyone with MCI go on to develop Alzheimers, almost all cases of Alzheimer’s start with MCI.

It's important to note that persons with MCI do have an increased risk of going on to develop Alzheimer's disease (or another form of progressive dementia).

Science

Science, however, isn’t able to predict whether someone with MCI will progress, remain stable or improve.

Current research methods and models are focused on predicting who will get Alzheimer’s and who won’t.

I don’t have inspiring words of wisdom, or the functionality to think of way to make any of this better, what I can say is:

If you’ve been diagnosed with MCI hope for the best but plan for the worst.

**if anyone would like to help set up a support group for the under 65’s I would be happy to support it to the best of my ability**