Dementia By Letters

If your head was damaged by an external injury, like a blow from a weapon, you can quickly guess which part of the brain was hurt from the change such as paralysis of a limb, or loss of sight.  With dementia, the health team are trying to find out which part of the brain is injured, without such an easy to pinpoint external sign.  The first clue is when the person starts to have trouble in their daily life.  Often this is thought of as a memory issue, but this is not always the first and not always the worst problem.  

What problem shows up first depends on where the damaged cells are.  

• the cerebrum which is the largest part of the brain can be damaged in Lewy bodies dementia or vascular dementia.  The cerebrum is important for consciousness, language, thinking and paying attention.  The first sign of a problem may be when the person loses their words because they’ve got a problem in that part of the brain

• the frontal lobe is connected closely with emotions, and the behaviours that make up our personality.  If it gets damaged the person loses the capacity to behave “properly.”  This means that even if they used to be polite and behave in a civilised way, they may become rude, mannerless and even cruel.  They can lose the capacity to choose wisely in their actions.  Fronto-temporal dementia has a distinctive behaviour pattern because this part of the brain is affected.

• the cerebellum is the bit of brain that controls movement, as well as contributing to attention and language.  Over time in Alzheimer’s disease, this area of the brain may become involved and the person may fall more, or not be able to control the movements that let them manage cutlery or fasten clothes.

• the occipital lobe is at the back of your brain.  It’s involved in vision.  In a rare form of dementia called posterior cortical atrophy (PCA) the first signs of trouble are problems with vision and perception. There are practical problems with reading, judging distance, and recognising faces.  The person may bump into things that are right in front of them even though their eyesight is fine.

• the temporal lobe has an area inside called the hippocampus.  The hippocampus is important for wayfinding and remembering places.  The temporal lobe is important for understanding what we see and hear, for naming things, and remembering words. The person affected in that part of their brain may start to be unable to recall facts they used to know, and have speech problems.

• the parietal lobe helps us to understand where our body is.  So, if that’s damaged, you might fall on the floor when going to sit in a chair or put your cup too far over on the table, so it falls off.  Picking up an object is hard as three-dimensional discrimination reduces.

There is more about brain health and how to look after your brain here.

References or helpful links here

• NHS guidance on Dementia

• NHS guidance on Alzheimer’s Disease

• Alzheimer’s Society - The Brain and Dementia

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

Time and again I hear from families that the first hurdle is finding out that you are indeed a carer.  They tell me that caring creeps up on them.  They start to think that something is not quite right, but they don’t realise that the person they love is affected by dementia.  One day they wake up and realise that they’ve taken over a lot of the jobs that used to be shared. Or taken over jobs that they never had to do. 

Caring for someone with dementia can be a long and complicated road, and the first step has to be finding out as much as possible about the condition, and what can be done to keep the person well.  It is often described as a memory problem, but you will soon discover that memory issues are not the biggest difficulty, and things aren’t so simple.  

Finding out what is causing the dementia can give you some idea of what to expect.  It helps you to work out what is and is not a dementia related problem, and what you can get help with.

When you are caring for someone with dementia it is vital to accept support from others.  

You may find help from Dementia the One-Stop Guide.  This book is about what dementia is, what happens when you’ve got it, how you might be able to delay it, and what to do when you or your family are affected – based on evidence.  Living with dementia, and living with someone who has dementia, depends on managing the main practical problems (sleeplessness, hallucinations, delusions, wandering, depression, distressed behaviour, and aggression).  There is no cure for the diseases that cause dementia, so the smart thing meantime is to find ways of dealing with it.  It’s never been more prominent in the news, but a lot of the news is nonsense. 

The more fit and well you feel, as a carer, the better you will be able to handle the unexpected situations and stresses that arise which could, if handled badly, lead to disaster. There is more advice for carers in the One-Stop Guide on how to stay well. 

Even so, there are many GPs who are interested and motivated.  The national guideline (from an organisation called NICE, the National Institute for Health and Care Excellence, which covers England  and Wales only but is roughly the same as guidance in the rest of the UK) says people worried about dementia should be able to discuss their concerns and the option of seeking a diagnosis with someone who has knowledge and expertise.  In your GP practice there may be a specialist nurse or psychologist who does this.  They are specialists themselves and might have even more time for you. You need to take time and get information so that you can make an informed decision about what you are going to do next.

Local authorities and the organisations they work with and NHS and social care staff should know about the local dementia guideline and they should know how to put you in touch with someone knowledgeable.  It might be that before going to the GP you already had a chat with someone else like a voluntary group, or the manager of another service like a care home where the person who might have dementia is living.  But it is the GP who is the gatekeeper for further diagnostic services in most cases. 

What happens at the doctor’s

GPs often do a short mental test in their consulting room. 

In addition to doing a basic dementia test by asking some questions, the GP will have a focus on your general health.  Because there are so many reversible physical conditions that might be causing your problem, the GP will probably recommend blood tests to look for: 

• Vitamin B12, and folates

• Thyroid function

• Tests for minerals in your blood like potassium and calcium

• Glucose

• Checking that your liver and kidneys are working

• Other routine elements like counting the blood cells, checking for inflammation

You’ll be asked for a urine specimen to see if you’ve got an infection in your bladder. You might be sent for a chest x-ray if it looks like you’ve got a chest infection, or for a heart trace (ECG) to see if there is a problem there. The GP, if they think it could be dementia, will refer you to a memory assessment service or memory clinic which can be provided by specialists at the hospital or from a community mental health team.  

The GP might decide that you’ve not got a problem that needs to be taken to the specialist clinic right now, but he or she wants to see you again in a little while to see how you are getting on and if things are getting worse.  If you think they are dismissing your concerns, you can ask to see another doctor.  There is more about this in Dementia the One Stop Guide.

References or useful links here

• NHS Guide to getting a Diagnosis

• US National Institute on Aging

• Alzheimer’s Society guide to Diagnosis

Many women of an older generation relied on their husbands for driving and if he is the person with dementia the transport, problems can be considerable.  For food shopping, consider using the online shopping and delivery service from a supermarket.  If you are not confident with that, you may have someone in the family who will help you. 

While on the subject of eating and drinking, staying hydrated is really important.  It is not unusual for older people to selectively avoid drinking in order to try to reduce the need to go to the toilet.  This is not a clever idea.  You need water for all your bodily functions including your blood supply and if you allow yourself to get dry you will lose some of your cognitive functions.  If you’ve already got some dementia, dehydration will make you worse.  You will get confused.  It is also very likely that you will develop a urinary tract infection (UTI they sometimes say) and get even more confused as a result.  You can end up in hospital just from not drinking enough water, and this is particularly true if you are already coming down with dementia.  Keep your pee a nice pale straw colour.  If it gets any darker drink more.  If it gets smelly see a doctor as fast as you can to get antibiotics before you end up in an ambulance.  Water is the stuff of life.  So drink some.  Tea is also good. In fact, almost any fluid helps and you get fluid from other food like soups, and custard.

 References and other resources here

• For more advice on this see….. Dementia the One Stop Guide

• Alzheimer’s Society on Eating and Drinking

• Dementia UK, Eating and Drinking for a Person with Dementia

• Alzheimer’s Association on Food and Eating

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

The situation is getting better, but research shows that even if the professionals who are now working in the health and social care system got any dementia education in their undergraduate or pre-registration training, it was more likely to be about the anatomy and physiology of the declining brain tissue, rather than about answers to practical questions like what you should do if the person starts screaming in the night.   This has not been good enough from the point of view of carers or people with dementia who come to them looking for help.  Most of the people with dementia that students saw in the past were in hospital and largely unable to do even the most basic tasks and often they were behaving in very disturbing ways.  That’s how medical people used to view dementia – they expected dramatic and painful debilitation and chaos.  They never realised that 75% of people with dementia were living quietly at home.

Things are a bit better now.  There is a lot of publicity and more education.  But sometimes it seems almost impossible to get sensible advice about dementia.  We are faced with waves of publicity on the subject as newspapers print deceiving headlines implying that there will be miracle cures available soon.  Families affected by dementia live in fear of losing their entire inheritance through care home fees.  Television adverts encourage us to be positive about dementia at the same time as celebrities and thought leaders say that they’d rather have cancer, or that they’d have a duty to kill themselves if they had dementia. Investigative reporters make TV shows out of the misery of vulnerable people who have been on the receiving end of bad care.  Scandalous nursing home stories ruin our confidence that there might be a nursing home anywhere in which people laugh and enjoy themselves in comfort.  The tragic treatment of patients with dementia in hospital makes us afraid for ourselves and our families.

This is why you need access to facts.  Dementia the One Stop Guide has information based on research evidence written in clear language. There are care homes that are lovely to live in. There are people with dementia who are happy till the end of their life. No one is doing cartwheels of joy about dementia, but access to facts can make a big difference to surviving as well as possible for as long as possible.

References and resources

• Read my book: Dementia the One Stop Guide for the real facts

• Alzheimer’s Research UK, 11 things you need to know about dementia

• NHS facts about dementia

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

If you are unfortunate enough to be in a family where anyone got Alzheimer’s disease before they were sixty years old, then your family is possibly affected by a dementia that has more genetic factors than any of the other dementias.   

One contribution to the lack of knowledge about family connections in the past was the stigma that used to surround any mental health problem.  Someone with “early onset” or “working age” dementia these days will sometimes reveal that one of their parents did die young, but no one ever talked to them about the cause of death, and it was swept under the carpet so they didn’t know much about it as children, and now no one is alive who knew.  Many people in these families will never have dementia, though.

It is important to ask your GP for genetic counselling if worry about this is affecting your life. For more information see: Dementia, the One-Stop Guide.

References and resources

• Alzheimer’s Society, Genetics of dementia

• Alzheimer’s Research UK, Genes and Dementia

It is really important to have a plan that allows you to keep doing the things that are important to you for as long as you can.  This might be travelling, keeping up your allotment, driving, continuing to work or volunteer.  All of these things are possible even if you have a diagnosis of dementia, especially if you are diagnosed early.

You may wish to be in touch with a health or social care professional who will help you to coordinate the different care and support that you will need later on.  Many people stay at home till the end of life but it is not unusual to move to a care setting.  Many people are considerably upset at this prospect, because care homes have had a bad press in the past.  Of course, care homes like any other services vary in quality but very many of them are really comfortable and caring.  

Private agencies can offer a dementia home care plan that is tailored to the needs of the client.  The staff, who are trained carers, move into the home of the person living with dementia, and provide full time care and support.  The carer is particularly focussed on the care needs of the person, but they are also able to support them with daily living tasks.  This is not so much about cooking a meal, but supporting the person to make their own meal the way they always would have.  The arrangement is good for relieving the anxiety of the family, who otherwise might consider a move to a care home.  

Care at home is a good alternative to a care home, but making the decision depends on your resources and how well you are. There is more about this in Care Homes, the One Stop Guide.

References and resources:

• NHS, Staying independent with dementia

• Age UK, Help finding and arranging social care

• Alzheimer’s Society, tool for finding support near you - UK

• June Andrews, Multigenerational Living Spaces

This is difficult to talk about because urination and defecation in every human culture is an intensely private process.  Because as children we have to learn how to control our bodily functions, problems in this area are equated with childishness, and when they happen in adults it is a matter of shame.  But it is important to remember that not everyone with dementia gets incontinence.  So, if the person you are caring for has an episode, it is worth considering whether the cause is something other than the dementia.

 Why does it happen in dementia?

1. Lack of awareness of the need to go to the toilet

2. Not being able to find the toilet in time especially in a new or unfamiliar place

3. Problems with dexterity, getting out of trousers or coping with underwear when desperate to void

4. Difficulty in recognising unfamiliar toilet furniture.  Does the sink look like a urinal?  Does the lavatory pan not seem to have a flush handle?  Is everything invisible in the blinding glare of white tiles and fluorescent light?

There are also practical problems.  Cleaning up after accidents is a new requirement, and not everyone can deal with it.   But you can get help.

There is more about this on the website blog area on Dementia Pee and Poo.

References and resources:

• Read my article on Dementia, Pee and Poo

• Alzheimer’s Society on Toilet Problems and Continence

• Dementia UK on Continence

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

As a dementia expert, I have written in a number of publications such as the Elder talking about the reality of dementia, and the importance of evidence based therapy.  That sort of article is written for the general reader and has political and policy issues in it rather than research.  The same is true in articles I might write for other organisations.

 When any academic writes about dementia, and it is reported in the newspapers or other general magazines, there is always a risk that the headline is chosen for shock value and the article itself doesn’t really reflect the banner at the top. I once was reported in one paper saying that “It is not ALWAYS possible to live well with dementia…..” and it was printed as “It is ALWAYS IMPOSSIBLE to live well with dementia”, which has a completely different meaning.  Newspaper reports of research can be confusing. It is not unknown for what is said to be misrepresented by quoting out of context. The responsibility lies with the reader to check out what is being said, and not believing everything you read. For more check out Facts section of this A-Z.

 I’m happy to make recommendations of places where readers might find the information they need. A good start is Dementia the One Stop Guide, but if what you want is not there, contact me here

You can also become deficient in thiamine because your diet does not give the right nutrients, but this would be by living almost exclusively on white rice, for example. So that is an unusual cause of Vitamin B1 deficiency.  In modern times this will rarely be seen but may be present in refugee and prison populations in some parts of the world.  Using alcohol to excess can also interfere with metabolism of thiamine and the capacity of your liver to store other vitamins.

Wernicke encephalopathy

There is an early stage of illness known as Wernicke encephalopathy.  This can be reversed with high doses of thiamine if they are given in time.  Otherwise, if the person keeps drinking, they will develop Korsakoff's syndrome.   

The main symptom is memory loss.   The person then becomes confused about time and place.  They may be drowsy and likely to fall over.  It is often confused with drunkenness because the person may be known and already have a reputation for drinking too much.  The difference is that these “drunken” symptoms are present even when there has been no alcohol taken.  It is common to see a change in personality, difficulty in acquiring new information or skills and “confabulation” which is where the person makes up stories to fill the gaps in their memory and, significantly, they themselves believe what has been invented, as if it was true. 

In ARBD the person may make poor choices and see no reason to try to get help or stop the damaging drinking.  This also makes them vulnerable to manipulation and abuse by others.  The absence of insight contributes to their erratic behaviour and mood swings.  Forgetting the names of friends or family and not being able to finish a sentence is typical.

You can find more about it here

References and resources:

• Alzheimer’s Society, Wernicke-Korsakoff Syndrome

• Young Dementia UK on Korsakoff’s Syndrome

About one in ten of people with dementia have this type. It is rare below 65 years of age, but not unknown. Because it is rare it is not always spotted but gets mistaken for Alzheimer’s disease. The person may get some symptoms of Parkinson’s disease which include loss of facial expression, an inclination to shuffle and limb stiffness. People affected describe vivid hallucinations.

In Dementia The One Stop Guide there is more discussion about what you can do when someone is hallucinating. These symptoms ebb and flow on a daily or hourly basis. It is not unusual for the person to doze a lot during the day and then have agitated nights troubled by hallucinations and nightmares. They will have falls and fainting attacks. That combination of fluctuation and hallucinations is what will lead the doctor to think that it may be the Lewy body type of dementia.

Lewy body disease is one prime example of why it is useful to know what the underlying cause of dementia in a particular person is.  It is regrettably not unusual for someone to be prescribed antipsychotic medication because their behaviour is disturbing other people.  This is in an attempt to tranquillize them.  The absurdity of this medication is that it often does not work and yet it continues to be administered even though it is extremely dangerous and can cause strokes or other fatal complications.  Even worse, in Lewy body dementia specifically, there is a particular risk from antipsychotics as they often reduce life expectancy and cause very disturbing side effects which are irreversible if you don’t catch them early. 

The best source of information is the website of the Lewy Body Society

References and resources:

• NHS guide to Dementia with Lewy Bodies

• Dementia UK, What is dementia with Lewy bodies

Rest assured that everyone is looking very hard for a drug or vaccine to prevent dementia, because the financial rewards of such a discovery would be amazing, apart from the humanitarian issues. Some of the recent research has been very disappointing.

This is why you might get irritated when people who are promoting a food supplement or other idea complain that they have found a “cure” and no one is listening to them.  Believe me, if there was anything in it, they’d be better keeping quiet until they get the patents sorted out. We all want a cure and it would be worth a lot of money, and reduce the massive spending on dementia that already exists. 

The medication that is currently licensed for use in the UK for dementia (acetyl-cholinesterase inhibitors) is mainly for the Alzheimer’s form of dementia and is usually prescribed in the early and middle stages of the disease when the maximum benefit is derived from them.  This is a primary reason why early diagnosis is seen to be a good idea by doctors and this has helped to get an increase in access to diagnosis.   The aim of the medication is to stabilise the condition. Not everybody will benefit from these drugs.  They have side effects including nausea and vomiting, and it has been suggested that they have adverse effects on the heart.  Memantine hydrochloride is used to treat severe Alzheimer’s disease or sometimes for moderate cases that don’t respond to acetyl-cholinesterase inhibitors.   It is often said that they only delay the progress of symptoms, but they also appear to have an impact on the pathology that underlies the diseases that cause the symptoms.      

There is more about dementia medication on the NHS website here

References and resources:

• Find out more in my book, Dementia the One Stop Guide

• NHS on treatments for dementia

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

Good care homes and nursing homes are in despair because of bad publicity about a small number of really unsatisfactory care homes.  They provide charming and comfortable places for people to live in at a difficult time of life; but the dire stories predominate in the press and public imagination.  That shapes the perception of families and friends when they are considering moving someone into a care home.  Many people at the early stages of dementia are quite clear that they want to stay at home for ever.  if you do move to a care home or nursing home it is not a sign of failure or betrayal.  A day may come when you think it is the right time for such a move.  You can be kind to your family by telling them that when the day comes, even if you are not well enough to take part in the decision, you accept that this is what they may have to do for you.  You have to trust someone else to do what is best for you and that is why choosing the right person to have your power of attorney is so important. 

Choosing a care home is one of the most expensive and emotional decisions you will ever have to make, but it is hard to know what is best and how to work out if the home is continuing to provide what is needed afterwards.   If you believed the frightening news stories that abound, you’d be naturally pessimistic about the possibility of having a good time in a care home, or being content to let your parent or spouse go to live there.

The number of people who end up in a care home is relatively small, but it does vary across the UK. In general you have less than a 20% chance of ending up in a care home, even if you are over 75. In Northern Ireland, the number of people in care homes in the first decade of the 21st century was higher than anywhere else in the UK. The reason for this is not known, but it is probable that families have a positive view of care homes. Also there may have been less pressure on public spending, meaning that local authorities had budgets that would allow them to make placements at levels unheard of in England. But even in Northern Ireland the government is making huge changes, shutting NHS care homes and increasing the pressure for care in the community.

If you want to know more about this and about the difference between nursing homes and care homes look up Care Homes the One-Stop Guide.

References and resources:

• See more information in my book about Care Homes

• See my blog: Why are most care homes privately run?

• See my other blog: Misconceptions about care homes

There are very good answers to this question here and here and here.

In trying to answer this myself, I often wonder about why the question persists in the public mind.  Here’s my thinking.

Dementia is a set of symptoms.  The one that most popular writing on dementia focusses on is the memory loss.  Places where people with affected can meet up are called “Memory Cafes” or “Forget-me-not” groups.   I can understand why people might want to have a polite and un-alarming label on that sort of activity.  Being a bit forgetful is something that most of us can identify with.  However, if it was called a “Dementia Café” it would be a more alarming idea.

“Dementia” is a word associated with “madness”. “Madness” as a word is now more or less unacceptable in the description of someone with a mental health problem.  In fact, they used to be called mental “illness” problems, but now it is always called “health.”  Language changes all the time.  In some languages, the word dementia is synonymous with “madness” and so people prefer to call the condition “Alzheimer’s” and the societies that support those affected and provide education for carers and care workers are often called “Alzheimer Society”, even though they are interested in and support all sorts of dementia caused by all sorts of diseases of which Alzheimer’s disease is only one. 

Worldwide, languages and people are either coy or harsh in the words they use to describe what I call dementia.  I say “what I call” because I think of memory loss as the least of the problems.  Research has indicated that greater problems in dementia include agitation, anxiety, aggression, becoming lost, sleeplessness, calling out, sensory and mobility impairments….  Not just forgetting.  

I am not as plain speaking as some people.  I am shocked if someone is described as “going senile”.  But being too coy about naming the problem gives rise to difficulties for those affected. 

So stories about something that improves memory headline it as a “cure for Alzheimer’s” and that is misleading in the extreme.  We need to know the difference between dementia and Alzheimer’s, and to be clear that dementia is about more than memory.  Read more about this here.

References and resources:

• See my blog: What is the difference between Dementia and Alzheimer’s disease?

• Alzheimer’s Society - “Dementia vs. Alzheimer’s Disease: What is the Difference?” https://www.alz.org/alzheimers-dementia/difference-between-dementia-and-alzheimer-s

• Healthline - “Dementia and Alzheimer’s: What Are the Differences?” https://www.healthline.com/health/alzheimers-disease/difference-dementia-alzheimers

• Alzheimer’s Society - “What is the difference between dementia and Alzheimer’s disease?” https://www.alzheimers.org.uk/blog/what-difference-between-dementia-and-alzheimers-disease

• AARP - “Dementia vs. Alzheimer’s: Which Is It?” https://www.aarp.org/health/dementia/info-2018/difference-between-dementia-alzheimers.html

• See my new course on Dementia the One Stop Guide on Policy Hub here

If anybody could invent something that costs less than these billions, and which would reduce the cost of dementia, that would be a good business proposition.  All the best brains on the planet would do well to think about this.

Pharmaceutical companies spend untold amounts of money on trying to find a cure, with no success so far.  Their continued interest is a measure not only of altruism, but the awareness that the profits to be made from something like this would make it worthwhile in the end

 Short of a cure, what could make a difference?  Looking at the evidence in Dementia the One Stop Guide there is mention of a range of things that might help.  A brighter light bulb.  Some exercise.  Changes in diet.  Easier hospital visiting.  Better hydration. Some stimulation.  None of these would cost a fortune.

If you have a particular dementia related problem, it is possible to search the web to find assistive technology that might help.  Good places to start would be the website of the Disabled Living Foundation.  It is packed with information and advice.  

On your web search you may also find “solutions in search of a problem.”  By this I mean products that are being marketed for dementia although they were not designed for it and might only make a marginal difference. Search for a brighter light bulb for dementia and you will read about systems for changing the colour of light throughout the day.  Desperate people might invest in expensive systems when the research is not that strong.  You may be looking for advice about diet and come across expensive supplements but STOP.  The research indicates that just eating more fish makes as much difference.  And even that evidence is not massively conclusive.  So, families are out of pocket for lighting systems and special foods.

I notice that the Alzheimer’s Society in England is promoting bit sized sweets that are designed to increase water intake.  I am sure this is a lovely idea, and novel, but families need to know that some less expensive alternatives exist, like a bowl of ice cream and jelly, or a nice drink of flavoured water in a glass.  I’d love those jelly sweets for a party!  But marketing them specifically for dementia carries the danger of seeming exploitative.

Inventing and marketing good ideas for dementia is to be celebrated, but if the novel idea is more expensive than the everyday alternative, it is vital to know the aim - which could be nutrition, hydration, mobility or alertness…and find an everyday way of enhancing that, without requiring expensive novelties.

References and resources:

• You can read my other article about this here

• Other dementia related products are described below

• https://shop.alzheimers.org.uk/daily-living-aids

• https://www.elder.org/the-elder/eight-great-dementia-products-that-can-make-life-easier/

• https://www.nhs.uk/conditions/dementia/home-environment/

• https://www.dementiacareproducts.co.uk/daily-living

• https://www.techsilver.co.uk/technology-products-dementia/?v=79cba1185463

Staff involved in the provision of care and health services need more than this.  All dementia training and education is based on the need for maintaining good communication as a person starts to have communication challenges.  As word finding becomes an issue, the person with dementia may communicate in other ways through their behaviour, by distress and anxiety, and if not supported properly aggression.  In addition there are complex healthcare, ethical, legal and social care issues that arise as the person progressively loses their capacity to care for themselves and make complex decisions for themselves.

In each country of the UK, dementia education and training standards have been developed.  In England a framework was commissioned by the Department of Health and developed in collaboration by Skills for Health and Health Education England in partnership with Skills for Care.  Scotland has the Promoting Excellence education framework, along with the Standards of Care for Dementia in Scotland.  These are designed to deliver the national dementia strategies. 

Previous research has shown that a third of care homes that are advertised as providing dementia care have no training for that.  Since then there has been a great move to get dementia awareness in there, but this is not enough.

Anyone who has the word “dementia” or “Alzheimer’s” in their job title should have a level of dementia education that is higher than a school certificate.  Degrees may not be essential in every job, but all workers should have access to someone who has at least a graduate level of knowledge of dementia care.  It cannot be assumed that nurses or doctors have this because dementia does not form a large part of their pre-registration education.

References and resources:

• If you are looking for a masters in dementia you can look here

•  More comments on dementia “training and education” here.

• See my book about Dementia here: Dementia: the One-Stop Guide

• What does it mean to be a real dementia friend?

• Alzheimer’s Society - “Most Popular Courses” https://www.alzheimers.org.uk/dementia-professionals/training-consultancy/training-organisations/most-popular-courses

• See my dementia course on Policy Hub Scotland

For people who have genetic risk of dementia, which is quite rare, the onset of symptoms can be delayed by lifestyle changes.

Smoking and alcohol are two of the areas that you can control. It is better never to have smoked, but it is never too late to give up. Having some alcohol is not in itself risky, but Alcohol Related Brain Damage is a form of dementia that could be entirely prevented if the person did not drink at all.

There are some medical conditions which make it more likely that a person will be affected by dementia, and this is why it is important to follow your doctors recommendations if you have high blood pressure, diabetes or depression. Managed well, you can reduce the risk of damage to the brain. More recently concern has been expressed at repetitive brain injuries in contact sports such as rugby, or in football if the player uses their head frequently to hit the ball. It has long been known that the repeated concussion in boxing could cause the brain damage that leads to dementia.

When a person with dementia has to go into an acute hospital for something else, there is a risk that their symptoms will become worse, and they may be affected by delirium. That effect is reversible but it’s important to prevent it if possible because it is very unpleasant and carries risks of mortality.

References and resources:

• See information more about: Smoking, Alcohol and Dementia

• Read my blog: When a Person with Dementia goes into Hospital

• Stanford Health Care -“Dementia Risk Factors” https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/dementia/risk-factors.html

•  NHS - Dementia prevention: https://www.nhs.uk/conditions/dementia/dementia-prevention/

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

A memory problem can be caused by fatigue, or stress, depression or distraction. The time to worry is when your life is being seriously affected because you can’t do things you used to be able to do easily, like work out your finances, or carry out a conversation, or even getting lost on a familiar journey or in a familiar place. There is more detail here.

Dementia is defined in other parts of this A-Z. See the parts for Alzheimer’s, Lewy Bodies and Vascular Dementia.

As we have become more aware of dementia in our society, people have started to worry whenever they have problems with their memory. As you get older, you do often slow down a bit physically and mentally but it is only when it starts to affect your daily living that you might think of going to see your GP to talk about it. There is more about going to see your doctor here with short videos on why you might want to visit the GP, what she will ask about on a first visit, and suggestions of how you can help if someone you know seems affected but is reluctant to get help.

You will find detail in Dementia the One Stop Guide and in other sections of the website at www.juneandrews.net

References and resources:

• Read my blog: What are the earliest symptoms of dementia?

• NHS - Dementia Symptoms https://www.nhs.uk/conditions/dementia/symptoms/

• Dementia UK - “What is dementia?” https://www.dementiauk.org/get-support/diagnosis-and-next-steps/what-is-dementia/

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

The symptoms of dementia can be slowed and delayed. There are two ways of doing this. The main things are those you can do without medicines. The medicines for dementia are limited, which is not surprising because there are so many different diseases that cause dementia, and as they are brain diseases, they reflect the extreme complexity of the brain and the massive range of functions that it controls, from sensations such as hearing and seeing, actions such as moving and speaking, and complex interactions involved in balance, and thinking.

The drugs that help with the symptoms of dementia may in some cases stop them progressing for a time. In mild to moderate Alzheimer’s disease, the person may be prescribed donezepil, rivastigmine or galantamine. In later stages memantine may be offered. See more about medicines here.

If the cause of dementia is vascular disease, any medicine that helps with blood pressure, cholesterol, diabetes or heart problems should help. They are acting on the underlying disease that causes the dementia. Many people with dementia have a combination of vascular and Alzheimer’s disease.

The non-drug approaches to dementia consist of lifestyle changes. What works best depends on the individual and there is more about this in Dementia the One Stop Guide.

References and resources:

• NHS - on Treatment for Dementia https://www.nhs.uk/conditions/dementia/treatment/

• Alzheimer’s Society - “Treatments for Dementia” https://www.alzheimers.org.uk/about-dementia/types-dementia/treatments-dementia

• WebMD - “What are the treatments for Dementia?” https://www.webmd.com/alzheimers/dementia-treatments-overview#1

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

My favourite metaphor is to think of dementia as a big heap of symptoms, such as getting lost, not being able to find the right word, being anxious and confused in company, not being able to recall other people’s names, not recognising objects etc. Then I describe another heap - this time a heap of diseases, which would include Alzheimer’s disease, vascular disease, Lewy Body disease and a list of names too long to number here.

The diseases cause the symptoms, and the symptoms, when added up in any individual person, might suggest which of the diseases is causing the problem, but it is not ever an exact match. In some literature it says that you can’t tell which disease was causing someone’s dementia until a post mortem, when you can examine the brain.

In fact, in some cases, you can find a brain at post mortem that is diseased with vascular changes and also diseased with Alzheimer changes but the person never showed signs of dementia problems in life. So you could almost say in that case that there is no relation between the disease and symptoms.

I don’t believe it is quite as limited as that, because there are certain patterns that can give a very good indication. However, it is not an exact science because everyone one with dementia is a different person with a different history and a different response to their circumstances. A nun who has lived in the same place with the same daily routine for decades may not seem to have dementia, but that could be a result of not having to deal with the stress of any change in her cloistered world. A lady of the same age who has to cope with widowhood and moving house might be very disturbed, even though her brain disease is at the same stage as the cloistered woman.

It is well worth an attempt at making a diagnosis of which disease is involved so that people can be advised what to expect, and be aware of what is unexpected. In some cases the unexpected problem might not be the dementia, but something else that can be reversed, such as a urinary tract infection. That knowledge lets the person live as well as possible for as long as possible by seeking medical help.

References and resources:

• Dementia UK - “What is Dementia?” https://www.dementiauk.org/understanding-dementia/what-is-dementia/

• Alzheimers.net - “Difference Between Alzheimer’s and Dementia” https://www.alzheimers.net/difference-between-alzheimers-and-dementia/

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

The underlying problem is with the blood supply to the brain. Your brain needs oxygen and if that is cut off, the tissue that should be supplied by it will die.  The blood can be cut off if the blood vessel that supplies an area gets blocked by a blood clot.  Another problem can be if the vessel is damaged and there is bleeding into the brain.  The symptoms can start suddenly, as with a stroke, or they can increase slowly over time.  Characteristically they show a stepwise increase in severity, as each part of the brain loses its blood supply.  The damage can be very small and widely distributed.  A blockage of the blood vessel is called an “infarct” and this is sometimes called “multi-infarct” dementia.  

People who have vascular disease are more vulnerable to this form of dementia.  This is why it is important for people with blood pressure problems or diabetes to stick to the doctors’ advice and to take their medication as prescribed.  Lifestyle factors are important, as what is good for your heart, is also good for your head.  This includes exercise and diet, but also avoiding smoking or misuse of alcohol.  

The symptoms, as with other dementias include slowness of thought, and difficulty with planning or understanding.  The person may have mood changes and families might say that their personality or behaviour has changed.  There might be difficulty in walking and keeping balance.  It makes activities of living difficult and the person might eventually not be able to look after themselves without a lot of help. 

There is more about this in Dementia the One Stop Guide.

References and resources:

• Alzheimer’s Association - “Vascular Dementia” https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/vascular-dementia

• Dementia UK - “Vascular Dementia” https://www.dementiauk.org/understanding-dementia/types-and-symptoms/vascular-dementia/

• WebMD - “Vascular Dementia” https://www.webmd.com/stroke/guide/vascular-dementia#1

• Alzheimer’s Research UK - https://www.alzheimersresearchuk.org/dementia-information/types-of-dementia/vascular-dementia/

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here

Walking is an excellent way of taking exercise because it can be done in the open air, and fresh air is also important.  It is something that can be done during the day to give the person exposure to daylight, which improves the chance of them sleeping at night.  Sleeplessness is often a significant issue for people with dementia and those sharing a home with them.  

When a person with dementia is living at home, their principal carer would probably welcome some time alone during the day, and a friend who will take the person with dementia for a walk gives an extra bonus, because they provide entertainment, stimulation and exercise, and also give support to the carer.  In addition to that, the friend also has the benefit of exercise.  The possibility of seeing other people while outside gives something else to talk about as a distraction, and the benefit of nature, in a park or garden or even out in the country is measurable.

References and resources:

• You may find local organisations that help with this sort of walking exercise such as this one here

MRI uses a powerful magnetic field, and sometimes the person has an injection which will enhance the images that are captured by the computer. Later in the progress of the disease, a further image may be taken to see what change has occurred. CT of the head uses special x-ray equipment, and sometimes contrast medium in an injection. It can detect brain shrinkage, and provide information on other injuries such as stroke, or trauma. PET is an examination that uses radioactive material to detect brain diseases.

The level of anxiety for a person with dementia having to go through one of these tests may be imagined. Although there can be a reduction in noise and the use of calming music, or allowing the person to take and hold a personal object, it has been compared with being inserted into a washing machine head first, and that’s not pleasant or easy to cope with, even if you are not ill with cognitive impairment. In addition if the person has to attend a noisy and overcrowded department in a hospital, their distress can lead to agitated behaviour that prevents the taking of a satisfactory image.

It is very helpful if the staff involved have a good understanding of dementia and involve family carers or familiar care staff in the procedure.

References and resources:

• Challen, Low and McEntee, (2018) “Dementia patient care in the diagnostic medical imaging department” Radiography Online https://www.radiographyonline.com/article/S1078-8174(18)30081-6/fulltext

• NHS https://www.nhs.uk/conditions/dementia/diagnosis-tests/

• Dementia UK - Getting a Diagnosis of Dementia https://www.dementiauk.org/wp-content/uploads/2017/07/Getting-a-Diagnosis-WEB-June-17.compressed.pdf

• Health Quality Ontario (2014). “The appropriate use of neuroimaging in the diagnostic work-up of dementia: an evidence-based analysis.” Ontario health technology assessment series, 14(1), 1–64. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3937983/

• CSJ. (2018) Quality Of Care For Patients With Dementia Improved In Radiology Departmenthttps://www.clinicalservicesjournal.com/story/25466/quality-of-care-for-patients-with-dementia-improved-in-radiology-department

It has been suggested by Young Dementia UK that the number could be higher because people are not always identified and their symptoms are put down to stress or depression. In addition it is more prevalent in black and minority ethnic groups in the UK, and these are also people who are less likely to get a diagnosis or any support.

It is well known that people with Down’s syndrome are likely to develop Alzheimer’s disease in their fifties or early sixties. It is not inevitable, but for those in their fifties, the risk is about 1 in 3. It is as if the age related risk in these people runs about thirty or forty years ahead of the rest of the population. All people with a learning disability are at greater risk than others.

About one fifth of young people with dementia have what is described as a “rare” dementia. Achieving a diagnosis is extremely difficult when clinicians are not expecting dementia in this age group, or if the disease itself is very atypical. It is important to remember that the impact of dementia is different in people who have financial and caring responsibilities for young children and who wish to continue to work for as long as possible.

References and resources:

• Alzheimer’s UK - “Younger People with Dementia” https://www.alzheimers.org.uk/about-dementia/types-dementia/younger-people-with-dementia

• Young Dementia UK - https://www.youngdementiauk.org/young-onset-dementia-facts-figures

• SCIE - “Living with Early Onset Dementia” https://www.scie.org.uk/dementia/symptoms/young-onset/living-with-young-onset-dementia.asp

• Alzheimer’s Research UK - “Early Onset Alzheimer’s” https://www.alzheimersresearchuk.org/dementia-information/types-of-dementia/early-onset-alzheimers/

One area that really provides almost impossible challenges is “repetitive vocalisation”. This can be the experience when the person with dementia asks the same question over and over. They try the door and ask, “Where’s the key?” and you tell them and they turn round and ask again, “Where’s the key?” Sometimes the person just says the same thing over and over again, almost chanting a word or phrase. This is challenging enough, but when the phrase is alarming, for example shouting, “Help me! Help me!” or “Where am I?” repeatedly, it causes terrible stress to all within earshot. Even if other people in the vicinity are aware of the dementia, you might feel that they are judging you because you have not been able to calm or console the person. A passing visitor might think that you are neglecting them. Sometimes the person with dementia will scream or wail and call the name of a family member. It is a significant burden for anyone caring for them.

Theoretically this behaviour could be reduced or stopped by sedating the person, but that would decrease their quality of life, and introduce increased risk of falling, and side effects of immobility such as chest infection or other adverse outcomes.

In general, all behaviour of people with dementia should be seen as communication, even if it is hard for us to understand because the person has language deficits. The deterioration of language in dementia is well known, but people don’t always realise that language is only one of the modes of communication. The person who makes apparently inarticulate noises may be telling you that they are in pain, or unhappy, or expressing some other emotion. However, at times, the noises that are made may not have a particular hidden meaning. Repeating the noise is a “self soothing” habit that the person may have developed.

The solution is most often discovered by a trial and error approach. You may try changes in the environment, such as reducing extraneous noise. Introducing music can make a different in some cases. Either under-stimulation or over-stimulation can be at the root of the problem. It’s important to make sure that carers, and family carers, have support, in order to improve their level of tolerance. Simply knowing that other people face the same difficulty, and sharing tips, can help.

One technique is “zoning out”. Have you ever gone on and on at someone about how you want them to do something, only to realise that they have not been listening…looking at their phone…reading the newspaper…watching a neighbour out of the window? They’ve zoned out and they are not hearing you! It is not necessary to answer every question posed by another person. Once you are sure that the noise is not an expression of pain or discomfort, it is possible, to an extent, to learn to ignore it for a time. When introduced to this idea, sometimes people feel guilty…but the person affected by dementia needs you to care, and you cannot do that if you have been driven to distraction by the noise that they have made.

References and resources:

• Dementia the One Stop Guide

• See my blog on Keeping the Environment calm

• See Prof June’s new course on Dementia the One Stop Guide on Policy Hub here