A personal view by James McKillop.
For a start what does dementia mean? Very simply for such a complex area, it is an illness/disease of the brain
What is the difference between Alzheimer’s and dementia?
The word dementia is an umbrella term, which covers all the various dementias including Alzheimer’s. Alzheimer’s is the one widely recognized, and accounts for about sixty per cent, of all the dementias. That means there are forty per cent other dementias, which do not receive the same publicity or research – the Cinderella dementias.
Can dementia be prevented? The current thinking is that if you look after your body and stretch your mind, you might be able to stave off dementia for a while, if it is meant for you. I exercise my brain every day and find this helps to slow the progression, of an implacable enemy.
With the Korsakoff’s type, caused by heavy prolonged drinking, the answer is to be moderate with alcohol when first starting to have a drink in your youth, and to continue in the same vein. Don’t store up troubles, which you can’t reverse. Too much alcohol over a time can destroy the brain. Stopping drinking will halt further deterioration.
What does early diagnosis mean?
There may be as many definitions as there are people.
So here is mine.
Early diagnosis of dementia happens, when a person is diagnosed, as soon as possible after symptoms arise.
Problems get spotted early, and not allowed to fester.
Note: You could have some aged 55, living alone, not seeking help who is in the later stages of the illness and whose symptoms, have not been recognized or diagnosed. Despite the young age, this would be a late diagnosis.
Again you could have someone aged 85, hitherto active, mentally alert and agile, who starts to exhibit signs of dementia, being referred without undue delay and who is quickly diagnosed. Despite the age, this would be an early diagnosis, before the symptoms progress and get worse.
At this point it might be worthwhile mentioning “early onset dementia” Definitions can vary. It means dementia develops much earlier than “normal”, whatever normal is. It may be used to refer to people who develop dementia say under 60 or 65, or whatever yardstick is applied locally.
How long have I got? An initial thought by many but there is no definitive answer. It can vary so much and there may be other serious health problems. What to do is make the most of your life after diagnosis, and look after yourself
Here are some personal thoughts.
How would you feel, if you were not made aware of something, which while unpalatable to hear, might nevertheless, bring some solution and benefits to you.
Why are some of the medical profession reluctant to consider, that a person with certain symptoms may have dementia, and send them for an evaluation.
Have they seen other cases where the patient has been sucked into a void and ended up as flotsam, and consequently, they genuinely fear for their patient’s welfare.
Do they think they are condemning them to a nightmarish existence? Being practical, what can be done for people?
I have no doubt that due to ignorance of what is available out there, or more likely, knowledge of what scant support, there is, this has happened. But as Bob Dylan said “Times Are A Changing”.
People with dementia, have a much better chance of a quality life these days, as we speak out more, about what we need to help us maintain a life as near as possible to what we had before. Good support from enlightened and dedicated people helps. Thank you forever Brenda!
And the powers that be are starting to listen. Is dementia not a national priority for the current Scottish Government?
I hope to convince you that the earlier a diagnosis is made, the better it is for the person, their family, their future and anybody in contact with them.
Depending on the type of dementia, there may be medication available, which helps best in the early stages e.g. Aricept for the Alzheimer’s type of dementia and other drugs for the middle to later stages.
The person may well be depressed, as they fought against an unseen enemy and medication can help here, until they come to terms with their illness.
The person may have behaviour/personality problems, which can be helped by a combination of medication, love, understanding and non-pharmacological interventions.
The condition, which caused the dementia e.g. vascular problems, can be treated with medication to help delay further deterioration. Example; help reduce further Transient Ischaemic Attacks (TIAs) or limit their severity.
I speak from personal experience in the last three categories.
People can be allocated a CPN (Community Psychiatric Nurse) who will visit them at home and keep a regular eye on them, spotting problems before they become acute.
I know of someone who did not want a CPN as they see the Consultant every three months. That is their choice.
But they see the Consultant in a surgery, and most people dress up to see a doctor.
The Consultant cannot see how the person is living, for example the house may now be dirty and dusty, and the person may show signs of personal neglect. E.g. losing weight from the previous visit. The CPN would pick this up.
Self support groups. People with dementia can think they are isolated, that they are the only ones with the illness, and are no longer able to face their kin and the world.
It is important that they meet up with others, at the same stage of the illness, so that they can reassure themselves they are not alone. Dementia does happen to others.
The person very likely has had problems at work and may even have given up work or taken early retirement.
For those still in work, there is the chance to approach the employer/union to discuss if the person can continue at the same level, or in a lighter job, or become a trainer, or if medical retirement is appropriate. E.g. an airline pilot.
A person may be able to pass on their experiences.
Where the person is now unwaged, it is the time to ensure that any state benefits which are payable, are claimed.
There may be reductions in Council tax and concessions available for travel, theatres, gyms, museums, public swimming baths and such like. If you have co-morbidity problems, you may qualify for a “blue badge”. Ask around.
Now is the time to take steps, to ensure that the person’s funds and assets are not frozen at a later date, leading to horrific problems for the family and the person.
A Power of Attorney (POA) can be considered while the person can understand what is involved. It can be the time to make an Advance Statement. Don’t let people second guess how you would like to be treated in the future.
Advocacy: This can vary on where you stay and your status. If you think you may need an independent advocate to help you deal with matters, look up your nearest one, in the phone book. I often worry about people in rural and island areas with no or little access, and hope some day to see a Scottish Advocacy Helpline, so no one is excluded through distance. Advocates do not tell you what to do. They investigate and lay out the options and you have the final and only say. They can help if you go to a Tribunal.
Advance Statement: Amongst other names, it can be a Living Will or Advance Directive. You make it clear, in writing, to others, how you would like to be treated, especially medically, when you lose the capacity to represent yourself. It can cover all aspects of your life.
But make sure you update it regularly. Things can change, and minor things can become vital, as life goes on.
A Will is for everyone. Make sure you have one in place in good time, in case you lose capacity.
It does not replace a POA, as after all, a will only comes into play, when you have passed on.
Socially, the person will have known “something” was wrong but not what. Others may have noticed “odd/unusual” behaviour.
It can bring relief and explanation to you and the carer, along with the horror, of knowing exactly, what is wrong with you. You now know, why things went so badly wrong.
You can only deal effectively with a problem once you fully know the nature and extent of it. And many do.
People can now examine their position with family, friends, church members, members of clubs and workmates and decide how to proceed e.g. how much to tell them and when, so that relationships are not strained, as people may not understand why you now may behave, speak and act in a certain way. If you are a member of a religious body, still go to worship and receive spiritual, pastoral and congregational comfort, no matter the religion.
People can get the chance to read up on appropriate literature, for themselves and for their carer. Children may be involved, and there is information and support for them.
Booklets such as the “Don’t make The Journey Alone” (available from Alzheimer Scotland- Freephone 0808 808 3000 in Scotland) are meant to tide people over the initial shock, and give them some hope for the future.
There is also an excellent book “Facing Dementia” available from the same source, or locally.
People can also subscribe to magazines, which give the latest news of the illness. But beware of claims of miracle cures. I read of them every day without fail and they all fade into obscurity.
There is much research all over the world, which I think and pray, one day will lead to prevention and/or a cure.
But it is some way off. Until then make sure the person makes the most of their life. While there are drawbacks, I still enjoy living. I meet so many interesting people I would never have met, had I not have dementia. I bask in their genuine friendship. I do miss a regular wage and driving but hey, people in graveyards would gladly change places with me. I savour the life I currently have.
People can now look at things which can affect their and others safety. I have never cooked apart from chips. My wife binned the chip pan, as she felt it was too dangerous.
Cooking: Is it safe to continue to use an oven or chip pan etc? It might be best to have a risk assessment done or have someone nearby supervising. Carry on safely.
Ironing: To my regret, (tongue in cheek) my wife thinks it is not safe for me to iron. I can walk away and leave it on.
Electrical odd jobs/working on car/DIY. Is it safe to continue to do so?
I liked to do odd electrical jobs but gave them up after working on appliances still connected to the mains.
Crossing Roads: I had a few near misses when crossing roads as my road sense and spatial awareness had worsened. My brain can’t process what is happening, especially with the speed of modern cars.
I used to think I was still driving and walk out in front of traffic, when I saw the green light/filter arrow. I caused many an angry toot. But for years I had moved off when the filter light came on. I had to learn to be a pedestrian again, and obey different sets of traffic lights.
I retrained myself and I’m better now but not perfect, as I still make a mistake on the odd occasion. It is worse in the afternoon when I, like many others with the illness, get tired.
I also notice that I cross, what I think is a safe distance from a car, but they come roaring up on me. Is it me or them?
Trust: People can become too trusting and it is timely to advise them to take extra care with strangers and acquaintances. Don’t carry valuables on your person.
Take only enough money for your shopping and a taxi.
People with dementia can be thoroughly disheartened and the quicker they can get back to some form of normality the better. It is no shame to feel this way, many do.
The earlier you know, the easier it will be to accept the diagnosis. With the right support, you shouldn’t give up on life. Their self- confidence will have been shattered and work to rebuild it can start, before it sinks too low.
Contact with some friends may stop but make efforts to keep in touch, and there is the chance to make new ones, who know exactly what you are going through. You can redefine your boundaries. It may be geographical, especially if you give up driving, it may be social.
You can recognize your limitations and what to avoid.
Most importantly you should not assume that you automatically give up everything.
Recognize your strengths and weakness and decide what to continue with, and see what you can do to replace any gaps. Above all enjoy your life.
So what can you do?
Remember you can have someone of 55 in the later stages of the illness and someone of 85 in the early stages. Do not confuse with early/late diagnosis, which is the time when someone actually receives a diagnosis, depending on the length of their illness.
Here are some of the signs of dementia developing.
Memory loss, especially short term. Forgetting promises, birthdays, appointments and weekly meetings with friends.
Not paying bills or paying them late. Correspondence piling up unopened. Phone calls not returned. Returning from the shops without vital items, e.g. medicine, milk, bread, butter, daily newspaper or other food items. These are just a few.
Confusion in everyday life events.
Problems arising after a mini stroke or repeated mini strokes or a more serious stroke, or a head injury.
Inability to perform routine, familiar tasks: Things you do without thinking such as dress, change clothes, putting clothes on inside out and /or back to front, wash, shave, grooming, cook a meal, use the microwave, operate the washing machine, TV, video, remote, mobile phone etc.
Someone, a keen cook or baker may stop making works of art and resort to tins/packets/sandwiches. A green fingered gardener may allow the garden, to be over-run with weeds.
Problems at work: I do not mean such things as new procedures (which upset anyone), or increasing complexity. I mean someone who complains that they are having problems doing their normal work, which they have been doing for years, and know it, like the back of their hand.
Depression: Bouts of depression or sinking into depression before and/or after diagnosis. Many people with dementia that I know, have been treated, perhaps wrongly, for depression. Dementia and depression are bedfellows.
Problems counting money, shopping, knowing the value of items, or balancing their budget/bank account.
Steamed up bathroom mirror effect or fog or clouds: They can know something is there in sight or mind, and can’t quite see it clearly or make out what it is and may mention this effect. You can’t see the woods for the trees.
Poor judgement. Making unwise decisions or doing something which horrifies/distresses them later. I have bought things for which I had no earthly use and can’t explain why. Charity shops do a roaring trade from me.
I now always consult my wife, as I have become irrational.
Scams: Hitherto level headed people are taken in by scams, e.g. responding to premium rate phone calls or sending money to claim “prizes”. You would never believe such a sensible person would fall for them.
Spatial awareness: Do they place a cup on a table too near the edge and it falls off. Do they sit down and fall off a chair. Do they start to trip and misjudge stairs.
I have a problem with escalators. I place my foot in the middle of the step but it hangs over the edge and could cause me to topple forward. A complaint of sight problems may be an indicator of dementia or other problems.
Getting the all clear from an optician may not help. Sometimes you can see something clearly, but there is a faulty connection between the eyes and the brain and your brain does not register, what your eyes see clearly. I see everyday items but may not recognize what they are.
In any event, should someone still be driving if this occurs?
This can be “agnosia”, where you have problems interpreting sensations and recognizing objects.
I seem to have developed “alexia”. I now read what I can manage, but don’t recognize familiar words, like “such”.
It looks like a foreign word to me. I read with a dictionary at my side and consult it frequently, cursing myself for having to look up, what I already know. It makes reading a lengthy business and if I come across the same word I have already looked up in another paragraph, I have to check it up again, to follow the gist of the story.
This might explain why I had severe trouble driving around roundabouts. Is it a form of “word blindness”?
I now cannot read books with no paragraphs. It is just a blur. So now I check inside, to see if it is readable.
I was always a perfect speller but now when writing, I have a word speller at the computer as I make so many mistakes and have to correct them. My pride at perfection has taken a dent. But my problems will never stop me reading or writing. It is just so much harder and lengthy.
If the problem is worse than that and you recognize nothing at all, it could be “anomia”.
Co-ordination: This can cause problems. Some men when they come across a stone on the pavement have a kick at it. I find I now cannot do this. I keep missing. Does someone have trouble catching a ball, hitting a golf ball, dropping things etc? You need a lot of co-ordination just to drive a car. I found I kept stalling the car, something I had not done for thirty five years, and had lost good clutch control.
Impulsive buying where one was always previously prudent.
Driving problems such as scrapes on car and/or gate posts, minor bumps, being blasted by other drivers, hitting the kerb, misjudging distances, weaving about in the traffic lane going through halt traffic signals and getting lost etc. The DVLA can be contacted at 0870 6000 301 or at the Driver’s medical Group, DVLA, Swansea SA99 1TU
See my article on driving and dementia.
Losing or misplacing things, e.g. keys. Difficulty in finding things in age-old familiar places, such as the fruit bowl.
Changes (for the worse) in mood, behaviour or unexpected reactions to situations. Becoming unwarrantedly suspicious and accusatory, and blaming others for something not right, or for your misplacing things and insisting others hid them.
Embarrassing their loved one in public, leaving them in tears.
Perturbation. A person showing unusual signs of anxiety and mental uneasiness, without a logical reason. Something is working away at them. But nobody yet knows what it is. There is no training for the general public.
Swearing and cursing. If a person, who normally only swears in situations such as hitting their thumb with a hammer, starts to swear constantly, and curse people in a vile manner, it should raise alarm bells. This is not their normal behaviour and they may well be distressed at what they are saying and doing. But they can’t help themselves.
Something is taking over their habitual state.
Discombobulation: Disconcerted or confused.
A person may be subject to increasing pressure or stimulation and their capability vanishes. It is too much for the brain to cope with and they get increasingly alarmed. They may easily blow a fuse or simply switch off and say or do nothing and resort to silence. They may become sullen.
Their body language may show they are distressed and increasingly unaware of what is going on around them.
Unnatural outbursts of anger, aggression, agitation, belligerence and road rage etc.
Passivity: On the other hand if someone normally likes a good robust argument and suddenly becomes passive and it is not like them to accept things meekly, it can be cause to wonder if something unusual is going on.
A marked change in personality, they are no longer the person you have known for years. They behave differently.
Change in sexual behaviour: They may become too demanding or show little interest.
Becoming clingy: Do they check up on you, while both of you are in the house, to reassure them you are still there?
Persecution complex: People are ganging up to conspire against them, peering, whispering and keeping secrets.
Apathy and/or loss in initiative: Giving up long held hobbies. A hitherto active outdoors person becomes a hermit. Sitting, staring at the wall for long periods.
Low self-esteem. Sighing… An overwhelming sense of loss.
Seeming to lack emotion, not showing demonstrativeness:
I can’t seem to get excited about anything. I may be happy inside, but no one can tell. I won an award and the honour of the occasion went over my head. I may appear cold and ungrateful, but deep down I appreciate what is done for me.
House and person being neglected: Dietary, hygiene, grooming, dirty clothing, out of date food, rubbish and dust accumulating, windows unwashed, doorstep un-swept etc.
Would the person not normally be aghast by this?
Rotten smell in house as perishable food is being squirreled away under the bed, under the mattress or at the back of cupboards, or on their person (pockets/handbags).
Loss of orientation to time, day of week and familiar places.
Turning night into day. (Not quite nocturnal where night is someone’s or something’s normal “day”) The person roams about at night disturbing others in the household or sets off an alarm which goes through to sleeping (adult) children elsewhere. I cannot find a name for this syndrome, so I made one up. It is Mutonoxdies. I am sure someone will come up with a better word, should one not currently exist.
Problems with language or reverting to mother tongue. Floundering when trying to find the right word. The person may have a good vocabulary, but start to use words with vague meanings e.g “thing” or “something” and not be as descriptive and accurate as before.
The person may have “aphasia” which is an inability or impaired ability to understand speech or initiate speech (not caused by “aphonia” – damage or disease to the mouth area).
Problems with someone who has always loved finishing puzzles and TV quizzes, and who report increasing difficulty, with crosswords, word-search, Countdown, sudoku, wordwheels and anagrams etc.
Hard to multitask: They can now do only one thing at a time and even that can be difficult.
Tiredness: Some may have unexplained tiredness. Many people, myself included, get tired easily for no apparent reason. But see my caution at the end of this article.
Restlessness, especially in the evening or night: It may be Sundowning and a probe into the person’s past, may help resolve this. Did they iron when the children were in bed, or catch up on household work? Did they do the rounds and lock the shop/house at night and turn off lights?
Did they work back shift e.g. 2pm to 10pm or night-shift?
This behaviour can occur at any time of the day and I think it needs a name to describe the behaviour, so one doesn’t think it happens only during the evening or night.
You can get a lady up early each morning disturbing others, but in her mind, she may be up getting her husband off to work, then the children off to school. A man may get up early to go off to work to support his family.
Know the person’s history so you can deal with the present.
Do not treat with unnecessary drugs.
Perserveration: The repetition of an action, word or phrase such as you keep twisting at a button on your cardigan, ring on your finger, necklace round your neck or twisting a lock of hair etc while possibly repeating a mantra.
Confabulation: A new trait may be noticed. Someone who was hitherto truthful, starts contradicting themselves by telling different slants on a story. They may say one thing to you and a completely different version to someone else. And perhaps a third tale, to yet someone else. You may think they have become compulsive liars or doing a Walter Mitty. But it may be the illness, and they are saying what they truly believe is the truth, at that point in time.
Their memory of something may fluctuate, and they are trying their best to remember and may unconsciously try to fill blanks in their memory to make their conversation flow.
Repetition of the same question every few minutes or telling the same story over and over. Phoning with the same story frequently and being unaware they have already phoned.
Problems with special offers such as three for the price of two or buy two get one free. These confuse me and I need them explained each time as I cannot understand such simple statements. Easy for you, hard for me.
Prosopagnosia: The inability to recognize a familiar face. I don’t mean a casual acquaintance who may have changed their hair style, or who you meet outside of their normal place. I mean someone like a spouse, children or grandchildren. Someone they have known all their lives, or even someone they know well through the media or films.
Problems with executive functions (Apraxia), e.g. abstract thinking, planning, reasoning and organizing.
Hitting two characters on the keyboard when typing: This drives me mad, I do it all the time now and have to correct.
Jumping at noises such as the doorbell/phone/thunder: Difficulty with hearing/understanding in mildly noisy situations, and not following the gist of what is being said.
Having to leave functions where the background noise upsets them. I am no party pooper but when I go to weddings, I make it clear I am off when the band starts.
I can’t take the noise and can become agitated. This can happen also at meetings when the “normal” chatter of people, say at lunch, builds up into a crescendo in my head.
Sorry, I am out of here. If you want me to stay, provide a quiet room, where I can calm down.
Delirium: I am no medical expert so treat this with caution.
A child with a high fever may toss and turn, mutter incomprehensible words, act strangely and be delirious.
An adult may exhibit some of the signs of dementia say after an operation or some illness such as a urine infection, thyroid problem or a reaction to medication.
They tick some of the boxes. Hopefully the symptoms can be treated and the person quickly reverts to their old self.
Note POD; (Post Operative Delirium) may last a few days.
POCD (Post Operative Cognitive Dysfunction) may last for weeks or months. Do not self – diagnose, ask an expert.
MCI (Mild Cognitive Impairment): Some people are forgetful from birth and that is the way they stay. But some may start to become forgetful, and it is not their normal state. People do age, and old age never comes alone. Some people with MCI may go on to develop dementia, but some don’t. Keep your body and brain active.
Starting to stammer and stutter for the first time, as they stumble over words. They may be able to say words while holding a conversation, but get muddled when reading a prepared speech. I recently found it hard, to know where to put the emphasis on words, long familiar to me.
Anosognosia: Despite having some of the aforementioned problems, some may be in denial, or more likely, unaware that they have a problem. I didn’t believe what my wife was saying about things I said or did. What was she on about?
This is not quite the same as when a person receives a qualified diagnosis, but absolutely refuses to accept it for whatever reason. Is there a word for this, other than denial? It might tear their life apart, and lead to loss of job and freedom etc.
Dysarthria: Slow, distorted, slurred speech, where one is normally clear. I get this after a transient ischemic attack.
Dyscalculia: Severe difficulty in making arithmetical calculations, where one had no previous problems.
Eating out: I am forever served something I didn’t order, but my wife says I did order the food or drink item. The other day I wanted a diet Irn-Bru and ended up with a cappuccino. As I entered, I knew I wanted a cold Irn- Bru.
But “something” happened within my brain, I know not what.
I have also ordered food items I dislike. What goes wrong?
Going “home” to a house they used to live in years ago and being brought home by the police for being lost in an old neighbourhood, or even down the road from their present house. Getting lost in familiar places, not unfamiliar places, where anyone can get lost. Wandering the streets by night or day and looking distressed.
If someone is bereaved e.g. partner or daughter or the marriage breaks up, and they display some of the above, be careful. They may have a dementia which was previously covered up or compensated for, not necessarily deliberately, by the undiagnosed carer. Seek advice.
Note: There are other potential problems, not noted here, as the illness progresses, and no one will have all, or many of the symptoms. Each person is an individual. While some things are common e.g. memory, don’t compare illnesses.
Tips for coping are not covered here.
Caution: Do not jump to conclusions. The concatenation of symptoms is a pointer to seek advice. Other illnesses may mimic some of these conditions, so it is vital to get a proper medical assessment.
Finally please watch how you refer to us. We do not like being called “demented people” (an eminent doctor said this a few days ago). We do not like the terms “dementia sufferer” or “suffering from dementia”, or “dementia victim”
These are demeaning and portray us in a negative light.
You would not want your love ones spoken about in such disparaging terms. Sadly the media love these terms, despite my protests, and I cannot blame people for being mislead into using derogatory language also.
I did likewise at one time, and could kick myself for my insensitivity. Use “person with dementia”, or “people with dementia”, or “affected by dementia” please, thank you.
Disclaimer. The views expressed are my own and of no other person or group. Treat them as my experiences. I do have ten years of dementia under my belt.
They may be challenged by professionals, and so be it. I am prepared to be corrected, but you must convince me. If it opens up a debate and helps others, I have achieved something for others in my position, and those who will tread my path.