Early Diagnosis Of Dementia
Written by James McKillop, Scotland.
For a start what does dementia mean? Very simply for such a complex area, it is an illness 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. 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.
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 destroys the brain. 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. 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 diagnozed. 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. What to do is make the most of your life after diagnosis. 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, this has happened. But as Bob Dylan says “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.
MEDICAL
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 stop further Transient Ischaemic Attacks (TIAs). 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 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.
FINANCIAL
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 if medical retirement is appropriate. 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 and such like. 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 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. 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.
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.
SOCIAL
The person will have known “something” was wrong but not what. It can bring relief, along with the horror, of knowing exactly what is wrong.
You can only deal effectively with a problem once you fully know the nature 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 for them.
Booklets such as the “Don’t make The Journey Alone” (available from Alzheimer Scotland- Freephone 0808 808 3000) are meant to tide people over the initial shock.
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.
There is much research all over the world, which I think one day will lead to prevention and/or a cure. But it is some way off.
SAFETY
People can now look at things which can affect their and others safety.
Dementia is not a reason to give up driving but you are obliged to inform the DVLA and the insurance company, or you may be left uninsured. Don’t take the risk and do nothing, or you may live to regret it.
An assessment can be made to consider the suitability of further driving and if successful, may be repeated on a yearly basis. Cooking. Is it safe to continue to use a chip pan etc? It might be best to have a risk assessment done or have someone nearby supervising. Carry on safely. 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 when I saw the green light/filter arrow. I caused many an angry toot. 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. Trust. People can become too trusting and it is timely to remind them to take care with strangers.
ADAPTING TO A NEW LIFE
People with dementia can be thoroughly discombobulated and the quicker they can get back to some form of normality the better. 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, the reader 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 (inter alia) some of the signs.
Memory loss, especially short term. Forgetting promises, birthdays, appointments and weekly meetings with friends. Confusion in everyday life events. Problems arising after a mini stroke or repeated mini strokes (TIAs) 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, wash, shave, grooming, cook a meal, use the microwave, operate the washing machine, TV, video or remote etc, etc. Depression. Bouts of depression or sinking into depression before and/or after diagnosis. Many people with dementia I know have been treated, perhaps wrongly, for depression. Problems counting money, 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.
Poor judgement. Making unwise decisions or doing something which horrifies/distresses them later. 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. In any event, should they still be driving? 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 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.
Losing or misplacing things, e.g. keys. Difficulty in finding things in age old familiar places, such as the tea pot. Changes (for the worse) in mood, behaviour or unexpected reactions to situations. Becoming unwarrantedly suspicious and accusatory, and blaming others for something not right. Unnatural outbursts of anger, aggression or agitation. 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. 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, 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. House and person being neglected. Dietary, hygiene, grooming and rubbish accumulating etc. Loss of orientation to time, day of week and familiar places. Turning night into day. (Not quite nocturnal where night is their 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. 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 lock the shop/house at night, did they work back shift e.g. 2pm to 10pm? Perserveration. The repetition of an action, word or phrase such as you keep twisting at a button on your cardigan, ring on your finger or necklace round your neck etc. 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 believe is the truth at that point in time. Their memory of something may fluctuate, and they 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. Prosopagnosia. The inability to recognize a familiar face. I don’t mean a casual acquaintance who may have changed their hair style. I mean someone like a spouse, their children or grandchildren. Someone they have known all their lives. Problems with abstract thinking. 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. 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 reverts to their old self.
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 not their normal state. People do age and old age never comes alone. Some people with MCI may go on to develop dementia, but many don’t. Keep your body and brain active.
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.
Tips for coping are not covered here. Caution. Do not jump to conclusions. Other illnesses may mimic some of these conditions, so it is vital to get a proper assessment. Disclaimer. The views expressed are my own and of no other person or group. They may be challenged by professionals and so be it. 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.
