Sunday, 31 May 2015

Recognition for Mild Cognitive Impairment / final blog

I These days we are hearing of a lot of people being diagnosed as having Mild Cognitive Impairment.

We are also hearing of a lot of people formally diagnosed as having one form of dementia or another,  then being re diagnosed as having Mild Cognitive Impairment, because they did not deteriorate fast enough.
Some people these days get a diagnosis of Mild Cognitive Imoairment, until the doctors can work out whether you have dementia.

With this in mind many people are saying,  that more needs to be done to give this form of illness more recognition than it has at present. Fine it may not be dementia, but it does involve memory and day to day living, and coordination problems.

In some circles there seems to be something odd when it comes to MCI, you are neither one thing or another, but in fact you could be one of those people who may well go on to get Alzheimer's or Dementia.   You may also go on to live without getting either of these illnesses. 

To label someone with this illness and not to look any further seems to me to be very odd, when we consider that there are many neurological illnesses where these symptoms appear.

I do think many doctors treat people with contempt when it comes to this illness. They just say, You have Mild Cognitive Impairment, but never look any further to explore the causes of it.

It has been stated that many professionals are simply splitting hairs, like gardeners deciding whether a rose is a true hybrid or not. 

The problem is that it's the patients who are coming off the worst because they are hung out to dry, because some of the doctors simply do not understand this illness in the first place.

I have heard many people being diagnosed as just being depressed, when in fact they had dementia, or some other neurological illness, but the doctors had no intention of looking to see why you were "depressed". 

This could in many cases be due to the fact that you are losing control over your lives, or maybe your job, but these doctors simply cannot see the obvious.

I have lost my job as an Engineer, simply because I totally forgot how to do it, and was then classed as unsafe to do it. 
I was employed to oversee all contractors and maintenance staff, but my main role was Electrical Maintenance and estimating. I used to run two large budgets, yet I ended up counting on my fingers, something I found to be very frightening, fine these days it's gone, and my wife deals with money and paying the bills etc. 

My wife talks of the time when I retired the College Chapel,  yet this has all gone, so what on earth happened. These days I cannot fit a 13amp plug without getting my son to check that its been done properly, all my experience has gone down the plug hole. 

So this makes mild cognitive impairment, something to be highlighted, because when things go wrong like this, it's a major problem and something which should not be taken lightly.

So let us hope that someone picks up the mantle in the future, and raises the profile of those diagnosed as having this illness, otherwise they risk being forgotten about in the future.
 

Final blog

I have decide to stop writing on this blog because it is about Living with Lewy Body Dementia. 

I will leave this running, but may well Start a new blog about Mild Cognitive Impairment and memory problems. Thank you all  for your kindness and support. 

What started out as an online diary has now been read in 112 countries by over 114-000 people, truly amazing 
 


Setting up routines

When I was diagnosed as having Lewy  body dementia in Durham, my consultant told me to set up a routine.

This would get me through the day without the permanent support of others like my wife, because she like other carers, have enough problems to deal with on a daily basis, without watching over our every move

It was also recognised that I did struggle at times, with short term memory problems. 

Since my diagnosis has been changed to mild cognitive impairment, I am still the same person with the same problems including memory.
It's not easy getting used to this re-diagnosis, partly because, I am still under a consultant to see if it's all Parkinson related. But I have to be positive, while this is going on, because as I said before, my problems are still the same, and my family are relying on me to keep fighting this illness.

 I still use my routines as I did before, although these days I am starting to forget to take my medication  more than I did earlier, but that's life. 

I know that when this diagnosis of mild cognitive impairment is finalised, I will be taken off my Exelon medication as it's not recommended for this  illness

However It's all well and good telling people to set up routines, but when you have memory problems, it only takes a little thing to distract you and your routine goes out of the window.

It's not the first time that I have got started on my daily routine, when the telephone or door bell rang, or someone spoke, and everything went out of the window.

Some days you can pick up where you were, but in other days, it's all gone.

I was once stopped when I was shaving, and only realised later in the day, that I had shaved one side of my face, while the other side was left unshaved. 

This was very embarrassing,  because my wife and I only realised when we were shopping, by which time I could not wait to get home again. 

On other days I have forgotten to take my mediation, which is usually on a table beside me. 
This medication is always sorted out by my wife on a weekly basis, but it only takes a slight distraction and it's all gone hay wire.

I had to stop cooking when I burnt two pans, by putting something on the cooker, only to forget that I had done it in the first place. 
When you smell something burning, or the smoke detector goes off,  you realise that something is wrong, but by this stage it's too late.
So now my cooking is done in the microwave.

So no matter whether you have dementia or mild cognitive impairment, it still effects the memory, and once that plays up, you really do have problems. 

It's not the first time I have got out of my chair, to walk to the computer, only to forget what I was going to do. 
I use voice activated software on my computer and iPad these days, so that I do not forget what I am trying to write. 
At least with this,  I just speak and let the computer write it all down. I no longer have to look down at the keyboard and back up to the screen, until it's all finished and ready for corrections to be done. 

So it's a case of using any assistive technology available, as and when you can, as it will help you get through the day.

I no longer give people directions these days, because I always say turn left when I mean right. This is because my co ordination has gone. 

On top of this I still have a letter telling me that I have brain shrinkage, which according to our family doctor is not linked to normal ageing. 

But life has to go on, and now  I need to decide what to do with things this blog in the future. 
I guess I will put the blog on the back burner until this is all sorted out. 





Mild Cognitive Impairment

Like many I have struggled to understand what Mild Cognitive Impairment is, and how it differs from a dementia.

The other day I found a document on the Northumberland, Tyne and Wear NHS, website, and found that this explained things a lot easier than anything else had in the past three months.

I suppose that like many other people I wondered if Mild Cognitive Impairment was just a cop out.

 But having read this, it explains many of my problems, apart from things like my graphic nightmares.

This makes me wonder just how many people living with dementia, will have their diagnosis reversed at some later stage. 

Mild Cognitive Impairment

Introduction

The aim of this leaflet is to provide you with information about Mild Cognitive Impairment.

If you are not sure about anything please ask a member of staff

What is Mild Cognitive Impairment (MCI?) 

If you are told that you have Mild Cognitive Impairment (MCI), this means that your mental abilities (cognition) are not as good as they used to be.
This usually refers to problems affecting memory, but involve a change in problem solving, thinking, attention, concentration, language or visual ability.

MCI is more than just normal forgetting, and means a difficulty, that is greater than it would be expected for normal ageing.


MCI is not the same as Dementia 
  People with MCI can be at risk of developing dementia in the future, but many do not develop more problems and a small number can recover

What causes MCI?  
 There are many different reasons why people develop MCI
Often it can be difficult to identify the underlying cause. Your doctor may or may not be able to say what the underlying cause of your difficulties is

What difficulties can be expected? 
The difficulties that those with MCI experience can vary and depend on what part of your cognition is affected.
The cognitive assessment that you completed, will have helped highlight the strengths and weaknesses in your ability.

Difficulties seen in MCI can include:-

Memory
Misplacing items
Difficulty retaining information, such as recalling phone messages or shopping lists
Forgetting what you have done recently and events you have attended
Forgetting what you are planning to do in the future, such as remembering appointments and dates
Forgetting what you went into a room to collect or do
Recalling the names of people or things.
Difficulty concentrating on tasks
Losing track of what you wanted to say in a conversation

Language
Word finding difficulties - finding the right word you want to say in a conversation
Difficulty in describing objects or situations
Being less fluent in conversations with others

Problem solving
Difficulty planning and problem solving in relation to carrying out tasks, such as cooking, household chores, DIY tasks.
Difficulty adapting to changes in routine
A change in judgement, personality or behaviour

Visual
Experiencing more difficulty navigating and recalling directions
Difficulty judging distances
Difficulty coordinating tasks such as dressing

Other symptoms
 Low mood
Increased feelings of irritability or having more difficulty coping with stress
Apathy - loss of enthusiasm for previously enjoyed activities
Feelings can include sadness, anger, worry, or frustration

What can I do to help memory/cognitive difficulties?  
There are many different coping strategies that can make life easier, if you have noticed a change in memory

Making changes to your environment 

You can adapt your environment to help with memory difficulties, so that you do not need to rely on your memory as much

Use a notebook, calender or diary, to help you remember things
Put a notebook by the telephone to note down and phone calls and messages
Write important dates and appointments on a calender
Decide on a special place to keep items such as keys, or glasses. Make sure you put them back in the same place after using them, so you always know where to find them
Put information on a notice board
Use a pill box or weekly dispenser for tablets. These can be requested free of charge via your Doctor

Setting up a routine  
Another way to make life easier is to set up a routine. This can reduce any memory problems as you get used to expect, e.g. taking night time medication straight after cleaning teeth, or doing the weekly shopping on a Tuesday

Using memory aids

Memory aids can be important. These can take over some tasks that your memory does, and also reduce the number of things that you have to remember, which helps your memory work better.
All memory aids work best if you can make them part of your routine

Using a diary - to record what you do on a daily basis and keep track of your appointments

Notebook - to write down information that you want to remember

Calender - displayed in a prominent place can be a good way to note future appointments and social events. It is important to check this each day.

Making lists of what to do to stop doing - e.g. shopping lists
Notice board or wipe dry board - this is useful for leaving messages for family members and writing reminders to yourself. You could also record important phone numbers that you need to remember.

Sticky backed notes - these can be left in places around the home to remind you to do things.
Alarm clocks - timers, mobile phones - can be used as a prompt for activities such as taking food out of the oven

A tape recorder or Dictaphone - this is useful to record anything you want to remember.
Getting a newspaper daily - this can be a good prompt for the date

Maintaining well being

It is important to reduce any stress, anxiety or low mood as much as possible.
These difficulties have a negative impact on memory and concentration and can worsen memory problems
Continue to lead an active life and maintain all interests and activities that you enjoy - try not to stop any interests
If you notice that you are becoming low in mood or anxious, talk to close friends about your feelings
It can also be helpful to tell family and friends, about what difficulties you are experiencing and how they can support you, such as providing prompts and help with memory.

Try not to become concerned or embarrassed if you forget something.
If you have difficulty finding the right word or piece of information, try not to worry about this or try too hard to remember
Once you stop trying it will come back to you
Try to do one task at a time, as tackling too many things at once can become confusing
Take your time - there is no need to hurry
Break up tasks into small steps, to make them more manageable

Will my difficulties get any better?

For a few people with MCI, difficulties can get better if identified problems are due to physical health problems, or anxiety/ stress or low mood, and there is a subsequent improvement in well being
But for the majority of people with MCI, it is likely that problems will not ever get better.
However, problems might not get any worse either.
Some people with MCI can later experience a progression of their problems which might subsequently lead to a diagnosis of dementia. Of those only 10-15% per year develop dementia.

Can memory medications be used in MCI?
A number of studies completed have shown that using memory drugs for the treatment of MCI do not improve memory and will not prevent difficulties from getting worse.
The side effects are more pronounced when used in MCI and include higher rates of nausea, diarrhoea and leg cramps.
Therefore the memory drugs are not used in MCI.

How can someone have the best chance of avoiding dementia in the future?
Research has suggested that life style can affect a person’s risk of developing dementia.
There are steps that can be taken to reduce risk:-

Take regular exercise such as walking or swimming
Maintain the range of interests and activities that you previously enjoyed, such as socialising, with friends
Keep the mind active - doing crossword puzzles or word searches - as long as these are activities that you enjoy
Look after your health - stop smoking, refrain from exceeding the recommended amounts of alcohol, and avoid eating too many fatty foods

What would be the signs that my problems are getting worse

In the future, should you feel that your memory/ cognitive difficulties are getting worse, please discuss this with your doctor, who may re-refer you to the service.
Possible signs of difficulties getting worse are:-
Cognitive problems getting significantly worse and occurring more often.
It can also be helpful to check whether the family or close friends have noticed any changes

 Noticing difficulties occurring in other areas of ability such as attention/concentration, problem solving, language or visual ability.

Noticing a change in your ability in everyday life, to do tasks such as cooking, shopping, household chores

It is also worth considering how you have generally been feeling lately as increased stress, low mood, or an experience of loss can result in a temporary worsening of memory

MCI and driving

  
If driving is not affected then the DVLA (Driving and Vehicle Licensing Authority) does not need to be notified.
However for some people with MCI, the cognitive difficulties being experienced can impact on the driving ability.
 This might come to light through specific difficulties being identified from cognitive assessments, such as visual problem solving difficulties, or concern being raised about the possible change in the driving ability.
In these instances the DVLA should be notified to allow enquiries to take place

You will be advised as to whether you need to notify the DVLA.
Notifying the DVLA does not mean that you will be automatically stopped from driving, instead enquiries will be made to reach a decision around driving ability

In some cases a driving assessment may be required
































































































Coping With Mild Cognitive Impairment








Coping With Mild Cognitive Impairment

About 10 to 15 percent of adults age 65 and older are believed to have mild cognitive impairment — a condition commonly characterized by memory problems, well beyond those associated with normal aging.
Alarmingly, mild cognitive impairment, or M.C.I., can signal serious problems ahead: About half of people with this condition go on to a diagnosis of Alzheimer’s disease or another dementia within five years.
Yet when researchers from the University of Toronto searched worldwide for programs that educate people about M.C.I. and how to adapt to it, they found only five — three in Canada, one in Germany and one in Rochester, Minn., home to the Mayo Clinic, which first defined M.C.I. in 1999. Similarly, a North American search for support groups for people with M.C.I. turned up just a handful.
The University of Toronto researchers set out to rectify this lack of attention by writing “Living With Mild Cognitive Impairment,” published recently by Oxford University Press. One of its authors, Nicole Anderson, an associate professor of psychiatry at the University of Toronto, spoke with me at length, and our conversation has been edited for clarity and length.
Q.
There’s some confusion about mild cognitive impairment. Is it the earliest stage of dementia or something else?
A.
Most often, it is the earliest, preclinical stage of dementia. That means symptoms are not severe enough to meet the criteria for dementia. But pathology is developing in the brain that will likely lead to dementia.
Sometimes, however, people have other health problems that lead to an M.C.I. diagnosis, and once these are treated their cognition improves.
Q.
What cognitive functions are affected by M.C.I.?
A.
The most typical one is memory. Also common are subtle language difficulties and executive functioning deficits. This refers to an ability to multitask, switch back and forth between two tasks, or inhibit irrelevant information and stay focused on what’s important.
Q.
What isn’t affected?
A.
People’s general knowledge. Their vocabulary. Their intellectual ability. And by definition, people with M.C.I. do not have deficits in their ability to engage in activities of daily living, such as bathing, eating or cooking.
Q.
What about work?
A.
People will still be able to work. But they might find they need to put some more supports in place. They may become more reliant on Day-Timers or need more reminders from a secretary keeping track of their schedule. And they might find it takes them longer to do complicated activities.
Q.
What changes in the brain are observed with M.C.I.?
A.
A vast majority of research has been done on people with “amnestic” M.C.I. – the kind involving memory loss. There we see shrinkage of key brain areas important for memory: the hippocampus and other areas around it in the medial temporal lobes. We can now also scan for amyloid protein in the brain, and often we will see elevated levels.
Q.
Yet high concentrations of amyloid don’t always signify dementia.
A.
That brings up the whole notion of cognitive reserve. This refers to the idea that people can engage in certain activities in their lives — getting higher levels of education, exercise, eating a healthy diet, being bilingual — that help protect them against the clinical impact of various brain diseases, especially dementia.
Q.
How does that work?
A.
We don’t know for sure, but people with larger reserves often have greater connectivity between different brain regions and use different areas of the brain to do different tasks.
Q.
Why is this important?
A.
We don’t have any medications at this point to prevent or treat M.C.I. or dementia. Yet we can engage in activities that will help reduce the impact of the disease and maintain our level of functioning.
Q.
What contributes to cognitive reserve?
A.
The most studied and validated factors are education, exercise and Mediterranean-style diets. There is also some evidence that the more complex your occupation is, the less likely you are to develop dementia. And people who have larger social networks are less likely to develop dementia, especially if the social connections they have are meaningful or rewarding.
Q.
What diminishes reserve?
A.
Having a prior head injury. Having high blood pressure, diabetes, high cholesterol.
Q.
What are M.C.I. symptoms to watch out for?
A.
A. Repeatedly asking questions or making the same comments. Getting lost in a place that you’re familiar with. Forgetting an important event — say, a big meeting coming up — when that’s not something you would have done before.
Q.
Do people who come in for testing often have negative results?
A.
That is common. We see a lot of the worried well. Usually, what we detect with them is normal aging.
Q.
What is normal, when it comes to the aging brain?
A.
As we get older, our memory starts to decline, starting in our 20s. Primarily affected is the ability to get new information stored in long-term memory. How fast we think and do simple mental activities slows down. And word problems become more prevalent as we become older.
Q.
Are there other reasons older adults might have cognitive problems?
A.
Absolutely. Thyroid problems, a vitamin B12 deficiency and depression can all be involved, and it’s important that all these be ruled out.
It’s notable that research also shows about 25 percent of people initially diagnosed with M.C.I. turn out to be normal. That tells us we don’t have a perfectly accurate way of testing for this yet.
Q.
You’ve said there are no medical treatments for M.C.I.
A.
True, but there are ways of elevating the levels at which a person functions so that the impact of M.C.I. will be smaller. I’ve mentioned several already. I’d add to those developing a good set of memory strategy habits.
Q.
Can you give some examples?
A.
There are a number of them. One, for remembering things in the future, involves regularly using a Day-Timer or a personal digital assistant. A lot of older adults just have the fridge calendar at home. It’s a problem because it’s at home — it’s not with them when their friend says, “Let’s have lunch next week,” or the doctor says, “Let’s schedule a new appointment.”
We really encourage people to carry a memory book with them at all times, including a section for making notes and lists, a calendar, a phone book, a to-do list and essentials like a record of their medications. It absolutely helps. There’s research going on here that when you train people with profound amnesia to use devices like an iPhone they can live independently.
Another memory strategy is spaced retrieval. That involves repeating a word or phrase, then waiting a few seconds, then waiting a few more, and then waiting a few more before each repetition.
That way, you’re putting what you want to remember into long-term memory and pulling it out again.
A big problem with memory is that we don’t pay attention. So, what most of these strategies are doing is forcing us to pay attention. Another way to do that is to say out loud, “I’m going to go into the other room and get my book,” when that’s what you plan to do. Then, imagine yourself walking into the room and picking up the book. That forces you to pay attention to your intention and solidifies it in memory.
Q.
You and your co-authors are involved in a program for people with M.C.I. and their families in Toronto. What have you learned?
A.
It’s hugely beneficial for people. We have eight sessions, each two hours long. In the first hour, everyone is all together and there’s an educational session. The second hour, the family members go to another room where they meet with health care professionals who talk to them about diet or community resources or estate planning.
Meanwhile, the people with M.C.I. stay in the room and learn practical memory strategies. They practice them over and over again. Then they get homework during the week to implement those strategies. What we hear from people is that this helps them regain their confidence because now they’re armed with ways of combating the effects of cognitive symptoms.
Q.
Why aren’t there more programs of this kind?
A.
I think the world is just catching up with M.C.I. Knowledge about M.C.I. and interventions for M.C.I. has unfortunately lagged behind.
Is there a program serving people with mild cognitive impairment in your area? Share your questions for experts, your experiences about caring for someone with M.C.I., and your tips about available resources here.

Having read this article I now understand more about this illness than before. Its a great pity that many National Health Authorities in the UK do not explain this, but leave people to find  out themselves  

Monday, 25 May 2015

Rediagnosis from one dementia to MCI

A lot of people are finding these days, that their diagnosis is being changed, from one dementia or another to Mild a Cognitive Impairment.

This I understand is because things have moved on these days. 
Years ago you were diagnosed as having Alzheimer's or Dementia, going by your symptoms at the time. But it is now recognised that if you were diagnosed 15  20 years ago and have not deteriorated, as  expected, you no longer have that illness, but have mild cognitive impairment.

This causes many problems because some people have the scan results to prove, that their brains have shrunk to the stage that there can be no other diagnosis available.
In my own case we have letters to prove that my brain has shrunk, more than it should have done for my age

But this leaves some doctors arguing about the true diagnosis you should be given.

This is why these days you are initially given the diagnosis of mild cognitive impairment to start with, and then if you deteriorate you are told you have one firm of dementia or another.

I personally do not understand this because there are quite a few well known people around the world who have had dementia for up to or over 20 years, and are still going well.

I understood that this was because they remained active and never stopped, but a consultant I came across recently rubbished this.

In there words if you have not deteriorated within 5-10 years, you never had it in the first place?

 One doctor told me recently that this is down to specialists splitting hairs, about the definition of dementia, the same as gardeners argue about a true type of Rose?

But this does raise concerns, because many like myself lost their jobs etc, after being given a diagnosis of Lewy body dementia etc, and are now being re diagnosed as having MCI.

The symptoms have not changed, the problems are the same, just the title has changed. 

This then leads to other knock on problems with things like the driving licence, holiday insurance, etc as people rightly want to know why the diagnosis has changed, and why you are taken off the medication etc.
In my own case the DVLA have dragged out returning my driving licence, which should have been replace on January 5th of this year, and 20 weeks later I am still none the wiser.

It also leads me to winder what happens if and when the medication is stopped,  and you deteriorate faster than before. There is no going back again. 

 Perhaps one day things will be a lot clearer for all including the patient to understand.



Saturday, 23 May 2015

Dementia sufferers and their carers are being invited to take a step into the digital world.

Sessions aim to open up digital world 
to dementia sufferers and their carers


Dementia sufferers and their carers are being invited to take a step into the digital world

Age UK South Tyneside has been handed a pot of cash to launch a digital skills programme.
The NHS Widening Digital Participation pathfinder programme aims to promote access to health information using new technology.
It has been designed to support older people with dementia and their carers to enable them to carry out health-based transactions online, such as registering with a GP’s practice, booking appointments to see a doctor, ordering repeat prescriptions, finding information on NHS Choices to check symptoms or even reviewing reports on primary care practices.
John Briers, chief executive of Age UK South Tyneside, said: “Dementia can happen to anyone in later life.
“Life doesn’t end when dementia begins. Being diagnosed with dementia doesn’t mean that you have to stop doing the things you love or try new things. If diagnosed early enough, there are lots of things that can be done.
“Helping older people with dementia and their carers to find information, build support networks and interact online is just one of the many things that we can provide support with to help you to live well with dementia.”
The new service has been launched as part of Dementia Awareness Week, running until Sunday.For information on the digital programme, call Age UK South Tyneside on 0191 456 6903 or send an e-mail to info@
ageuksouthtyneside.org.uk
•An event will be held today from 10am until noon at Cleadon Park Primary Care Centre in South Shields to raise awareness of the early signs of dementia.

Project aims to make York dementia friendly




Project aims to make York dementia friendly


Siân Balsom, manager of Healthwatch York
Siân Balsom, manager of Healthwatch York


A HEALTH watchdog is set to investigate how York can be improved for people living with dementia.
Healthwatch York has received funding from Joseph Rowntree Foundation (JRF) in order to carry out a two-year project with the aim of taking York closer to being the first dementia-friendly city in the UK.
The organisation will make clear recommendations on what the city needs to do to better support people living with dementia and their carers.
The report will be presented to key city organisations with practical ideas on how policy and service delivery could change to improve people’s lives.
Siân Balsom, Healthwatch York manager, said: “The project will be grounded in the experiences of people living with dementia, their carers and the organisations who are supporting them.
She added: “It will outline the necessary changes that will allow everyone in York to work effectively together to meet the challenges of being a dementia friendly city.”
She said Healthwatch hoped to replicate the success of its report into access to services for deaf people which saw a number of its recommendations implemented and positive changes made.
Katherine Blaker, community development manager at Joseph Rowntree Foundation, said people living with dementia had reported different experiences in terms of the speed of their diagnosis and the support available. She said: “This piece of work by Healthwatch York will, over the next two years, systematically collate the experiences of people living with dementia across the city and seek out solutions from responsible agencies to improve the support for every one of us who may be affected by dementia now or in the future.”
The funding for the project which amounts to just over £20,000, was announced during Dementia Awareness Week this week. Organisations and individuals interested in being part of the new project should phone Healthwatch York on 01904 621133 or email healthwatch@yorkcvs.org.uk

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham...