Author: moleabbey

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Supporting people living with rare dementias: In conversation with Professor Nick Fox.

Whilst the most common diseases that cause dementia, such as Alzheimer’s disease and vascular dementia, are well known, there is less recognition of, and less research into, rare dementias. From frontotemporal dementia to familial Alzheimer’s disease, these are a collection of dementias that together constitute 5-15% of all cases. There is also much less support for these relatively neglected but devastating dementias. 

One of the foremost services offering help to people living with these conditions is Rare Dementia Support, led by the UCL Dementia Research Centre (DRC) and funded by The National Brain Appeal.

Professor Nick Fox, director of the DRC and UK DRI Group Leader at UCL, talks about the challenges faced by people living with rare dementias, the importance of Rare Dementia Support and the future of research into these conditions.

Nick, can you explain about the links between the Dementia Research Centre and rare dementias?

The Dementia Research Centre or DRC is a multi-disciplinary research centre that is closely linked to our cognitive clinics at the National Hospital for Neurology and Neurosurgery in Queen Square, London. Our clinical service and our research have always had a focus on young onset, inherited and atypical dementias and it was from that clinical experience that we realised how neglected these disorders were and how little support there was for families – and the support groups grew and became RDS.

I’d like to emphasise just how grateful we, at the DRC, are for the generous support from Dementia Research UK.  That support has been so helpful in funding much needed research into these and other dementias. 

What are some of the challenges faced by people living with rare dementias that are distinct from those presented by more common dementias?

Dementia is incredibly devastating for families at any age of any type, but rare dementias bring additional problems almost by definition.

People with rare dementias may have inherited their condition and they often present symptoms around middle-age, so they don’t fit the stereotype of being very elderly. It’s therefore harder for them to get a diagnosis, to get support and to get appropriate information. To quantify that slightly, just on average, it takes someone living with a rare dementia a whole year longer to get a diagnosis. 

It’s also hard if you’ve got problems where, for example, your problem is not memory, but it’s visual processing, as with posterior cortical atrophy, or if it is language-led. In both those situations, you often have a greater awareness that you are losing the ability to read or losing your ability to speak. Having an early onset dementia is devastating for the whole family, but, if it has a genetic, autosomal dominant, cause, it has even wider implications, as your children will then have a 50% chance of developing the same condition. How do you tell a child that what they’re seeing their father or mother go through they’re likely to have as well?

How has support for people living with rare dementias changed from early in your career to now?

I think it’s still woefully inadequate, honestly. It has improved, but it’s still very difficult for people to get support. The statutory provision, for example, respite care or day centres, are used to dealing with people who are very elderly. If people living with rare dementias are 50 and fit and they’ve got behavioural problems, they often can’t get that practical support. There are increasing services for what’s often referred to as ‘dementia of working age’ or ‘young onset dementia’. They are a great advance in terms of being able to signpost, but still, it’s very poor. There’s a massive gap.

How does Rare Dementia Support help people living with rare dementias and how can these people support research through the Dementia Research Centre?

The Rare Dementia Support is an umbrella organisation led by families and people who care about these rare dementias. Just finding somebody else to speak to who’s been through the same thing is helpful, but I think there is a great advantage of being able to find that there is somebody who knows about your condition. Peer support is very powerful. The individuals who’ve lived with somebody with dementia have great lived experience. They’ve found out what works, what doesn’t work. They have some difficult and painful experiences, but, also, they’ve got some very valuable experiences to pass on to others. That’s really central to what Rare Dementia Support tries to do: to not lose that valuable knowledge and experience. 

If people know what they’re dealing with, they can then also seek out how they can take part in research. We know that advocacy groups and support groups make a huge difference to people going into research. Dementia lags hugely behind other fields like HIV or cancer in terms of the proportion of people who go into research. With rare dementias, it’s all the more important. If we’ve only got one or two hundred families with familial Alzheimer’s disease, we won’t be able to do trials unless we’re successful in recruitment, and they have to know about that in order to be able to find out more and possibly volunteer.

How does your experience with people living with rare dementias as a clinician influence your perspective on your research?

Oh, lots of ways. I feel that for me and many of the other people in the Dementia Research Centre here at Queen Square, our clinical practice, the support groups and our research are really closely intertwined. I think it has opened up really important questions and there’s been very important observations. It’s also led me to think about the research myself or others do and ask the really important question: “is that going to make a difference to people?” I do think that it makes you more translationally driven and motivated.

I do think though that studying these families provides great opportunities for the more common forms of dementia too. The familial dementias, which have a strong genetic origin, allow great insights into the pre-symptomatic period, which would just not be feasible without these families. You’d have to study very large numbers of older people through to the onset of symptoms to understand what you’re dealing with. I think that they may hold not only a real key to understanding why people become affected by these neurodegenerative disorders, but also an opportunity to see what might work therapeutically and to intervene early. I feel very motivated by the families.

What would you say are some of the biggest challenges to developing potential treatments for rare dementias?

To start getting into the idea of developing treatments, we need to know the cause of the disease and, for some of the rare dementias, we don’t. Also, being rare creates challenges for clinical trials in two ways. One, can you recruit enough people for trials? And two, will you gain enough interest from the pharmaceutical industry, who may be concentrating on more common diseases?

Also, the outcome measures of trials are often designed for the typical dementia, so many people with an atypical Alzheimer’s disease are assessed in therapeutic trials with the standard metrics that don’t work. Therefore, appropriate outcome measures are really important. Appropriately organized inclusion and exclusion criteria are also important to reduce the variability you see across these rare dementias and increase the statistical power of trials. You have to understand what you’re dealing with.

What is the next advancement in treatments for dementia that you’re hoping to see?

I think we are on the cusp of disease-modifying therapies. I’m also quite excited by therapies that can be genetically based, so we can target faulty genes or pathogenic mutations or their downstream products. I think that is a rapidly moving, and important, area. I’d really like to see some of the genetic dementias leading the way and then opening up therapies for the rest of dementia.

 

The original version of this article was published on the website of the UK Dementia Research Institute. To view that article click here www.ukdri.ac.uk/news-and-events/supporting-people-living-with-rare-dementias-in-conversation-with-prof-nick-fox

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Design and Dementia

While we work hard for a dementia cure in the future there is a lot that can be done to make life easier for people who live with dementia now. In this blog I want to focus on what can be done in the design of the environment.

All the best design ideas are based on understanding what a person with dementia might find hard, and what could help.   Everyone with dementia is different, and the experience of dementia changes over the years for any individual affected.  There are some patterns.  The person often finds it difficult to adapt to anything new, or unfamiliar.  It’s not unusual to lose things or to become disorientated even in a familiar environment.  Memory is an issue. Unnecessary noise can be disabling because it makes it hard to concentrate.  This is true for anyone, but in dementia, there is less spare cognitive capacity to cope with distraction.

One criticism of what has come to be known as “dementia friendly design” is that it might be institutional, or brutal in décor.  A sign on the door can help you to remember what is behind that door, but signs would be unusual in a domestic setting and it has been said make the place look “institutional”.   People need to be flexible and practical about this.  If the choice is between elegance and finding the toilet fast, I know what I’d pick.  There is nothing less elegant than being caught short because the bathroom door is not dead obvious.

A person with dementia might be living in their own home, or temporarily in another place such as a hotel or a hospital, or they might decide to live in a care home or nursing home.  There are design essentials for each of these.  Some things don’t cost much and can be done without much disruption. Some of the other ideas are more expensive and would involve a significant change so should be thought of at the earliest stage such as the fit out of a care home, or when moving to a new home in later life.

I don’t have dementia, but I consider that future possibility. I hope to live to be 100 and still be in my own home. By that age I probably have a 50% chance of having dementia and so making my home dementia friendly is future proofing it. It can still look homely and comfortable.  If I am choosing a floor covering, which can be expensive and is meant to last my lifetime, I can choose one with wild patterns, or one that is smooth and self-coloured. It is not just a matter of taste. A person is more likely to trip if they misperceive the pattern on the floor and it distracts them when they’re trying to walk across it.  So, my floor coverings are smooth, matt, and avoid major changes in colour at thresholds between rooms.  A fall and a fracture leading to hospital admission is one of the junctions for someone with dementia that diverts them from home to a care setting.

Elements of design potentially could delay the day when a person with dementia would have to go to live in a care home.  I have seen very many lovely care homes where I would gladly move into one day. But not too soon.

One basic requirement is to increase the light level as much as possible. Most people with dementia are older and some are very old. This means that they have the normal changes of aging including reduction in their visual acuity. The structures in the aging eye become yellow and as a result colours are harder to distinguish – and that’s without any other problems of the eye that would require spectacles or surgery, and eye problems that can’t be cured. Many older people are anxious about the cost of fuel and may economise on the electricity that is required to brightly light their home. It is a false economy if as a result the person has a fall or becomes more confused because their environment is hard to interpret at low light levels.  When you can’t remember where things are, being able to see them helps.  Stress is reduced if you can find things easily and people with dementia may be easily stressed.

To increase the light level inside the home, use the brightest available bulbs for the light fittings.  In day time, simple things like keeping the window glass clean, keeping vegetation away from the outside, making sure that the curtains can be pushed right back to allow the maximum amount of light into the room, all make a difference. I choose light coloured wall paints and curtains so that even if I am in the house with the curtains closed in winter there is good reflection from my lamps to make the room as bright as possible.  However, if the person with dementia is accustomed to a particular décor, it may be too late to change some things.  They might agree to the change, but wake up the next day having forgotten that, and not understanding why the walls and drapes are a different colour.  They might even think they are in the wrong house.

A recent fashion in care homes was to create a simulated historic environment, such as a “fifties” sitting room.  The problem is that every resident’s home would have been different then, depending on social, environmental, and ethnic characteristics, so landing on one clichéd decade was no better than modern furniture with classic shapes.  People with dementia are not living in the past.  Another fashion was to festoon the interior with masses of sensory stimulation, but this didn’t always help create a calm environment and one fire officer told me of concerns about fire hazard.  Obviously, there is a happy medium to aim for.

There are many sources of information about what works.  It is important to distinguish between ideas based on sound evidence, ideas that have some credibility, and things that are being pushed by commercial interests who really are making it up as they go along.  Good sources of advice include the Dementia Services Development Centre at the University of Stirling (www.dementia.stir.ac.uk/our-services/for-designers).  This advice is from modern professional architects embedded in an internationally famous dementia centre, and it is based on evidence.   Internationally there is also The Dementia Centre at HammondCare (www.dementiacentre.com/design) which offers a tool for checking out devices, as well as environments.  The associates working there have produced guidelines on toilets and other specific areas.  All with the involvement of people who are living with dementia across the globe. 

The hardest thing for people with dementia is stress.  It sometimes gives rise to distressed responses that families and carers cannot support at home.  Anything you can do to create a dementia-friendly, easy to use, stress free environment will be good for everyone.

Professor June Andrews

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Advice for Carers of a Person Living with Dementia – five practical suggestions

What does it mean to be the “carer” of a person diagnosed with dementia? In some cultures, there is not even a word that means “carer”.  Taking care of someone is just what you do, whether they are your spouse, or your parent, a friend, or a neighbour.  But the truth is that in millions of families and communities around the world, someone needs extra care and the person who takes on that task could be described as a “carer.”  Unlike childcare, which is a result of something joyous and maybe even longed for, people yearn for their loved ones to be independent and well until the end of life without ever needing their care.

When it happens a carer often feels rather alone.  Although awareness of dementia is increasing because of work done by international agencies such as the WHO, government health departments and Alzheimer or dementia organisations in many countries, it is still a work in progress.  It has been an uphill struggle.  Mental health and behavioural issues have historically been stigmatised.  Ageism is a fact in many societies.  Dementia itself is more common in women than men, and the people who do hands-on support are often female in a world where “women’s problems” don’t always get the greatest attention. Any disability seems hard for many “able” people to respond to. Things are definitely getting better, but how much better depends on where you live and what resources you have. It can be lonely trying to hack your way through an administrative and informational jungle, and to deal with attitudes even in your own family and community.

Everyone with dementia is different.  Every family is different.  It is tricky to find five practical hints that will be relevant to everyone.  Nevertheless, research and experience show that there are some universal truths about the challenges for people who support someone who is affected by dementia, so, here are five actions to consider.

  1. Talk to other people about it and think of it as a new role (at least a bit).

Allowing yourself to be identified as a carer might feel difficult.  The label implies that you have taken on a different character from being just a daughter, son, husband, wife, or friend, and that can be uncomfortable. You may believe you are only doing what anyone in your position would do.  That’s not strictly speaking correct, of course. Some people don’t take up that challenge.  Even for those who gladly do, looking after someone affected by dementia can be difficult, and the changes might ultimately be problematic.  But for a long time, things will be just as they always were.  From a practical point of view, there are many benefits and supports that you cannot access if you completely avoid being described as a carer.  An example would be Carer’s Allowance, or the support of a local carers’ organisation. Talk to any organisation and friends you trust about what you are going through. You may be surprised to find lots of other people have had, or are still having, a similar experience.  Someone just knowing what you are going through is supportive in itself.

  1. Get a specific diagnosis as soon as possible

Often the person has been having almost imperceptible changes.  A daughter might say, “It was only when I looked back over the last three or four years, I could tell you about things that had changed, but I just didn’t see them at the time.”  Sometimes people who are starting to have dementia are so afraid that they labour very hard to disguise problems.  The people round about them might also be in denial and collude with that, dismissing changes that may be a sign that help is needed.  If people are afraid about the future, they try not to think about it.  Research has shown that many people are more fearful of dementia than they are of cancer.  The idea of it makes the person worried, or depressed, and sometimes even ashamed.  So, they ignore the signs, hoping they are mistaken, or that it will just go away.

The practical thing is that there are many things that look like dementia but can be cured.  It’s a shame to live on with an infection, blood problem, depression, or other annoying condition and not have it treated.  And even if it is dementia, an earlier diagnosis can give the person access to medication, or other supports that will make life easier.  It gives the person time to start lifestyle changes that will help them stay better for longer.  The GP won’t mind you asking.  The waiting times for memory clinics are long, so get in the queue as soon as you can.  Facing it doesn’t make it more probable.  Information is power.  The internet is awash with generalisations about dementia, but you need some specific information about what disease this is that is causing the dementia of the person you care for.  Knowing what might happen helps you plan and reduces future shocks.

  1. Support the person you care for to make future plans

There is an old story where a man asks another for directions when he is lost on the road, and the reply is, “Well, I wouldn’t start from here.”  Many people put off making future arrangements like granting a Power of Attorney or making a living will until there is the crisis of a dementia diagnosis, but it would be much better if we all had thought about these things much earlier on the journey of life.  Talking about our future wishes may seem hard, if we’re not good at contemplating illness or death.  An early diagnosis allows a person to make plans while they are still in a good mental position to think about it.  It might be that someone else is in a better place to share those conversations than you, as their carer.  Most importantly, do not assume that the person lacks insight, or is unaware of what is happening.  Respect their wishes and take time. But as a carer, your life will be easier if you can get a realistic idea from the person you care for about what they want for the future. This will make your life much less stressful when the time comes where you finally have to make decisions for them.  That time will surely come. It is a comfort to carry out their wishes rather than argue about what they might have wanted, perhaps with others who have a different, maybe less justified, view.  Support them to be self-determined to the last possible time.  Give them that dignity.

  1. Accept help where you can find it – and ask for more from other sources.

One place to start is with the GP.  Let them know that you are the carer, and if needed, show them your Power of Attorney certificate.  GPs can keep an eye on your own health and offer your appointments around the same time (called double appointments) to reduce your number of repeated trips to the health centre. They also have information about local carer organisations that can signpost you to benefits and concessions, saving you time and money. Caring costs financially as well as making demands on your time and well-being.  If you have brothers and sisters or other relatives, and you are the main carer, you may need to ask them directly for help.  This means making specific requests.  They may be in denial about the need for help.  It is well known that when a less involved person shows up the person with dementia can put on a show, and make it look as if you have been exaggerating their level of need and being overly negative.  Sometimes this happens when you bring in medical or social staff for assessments.  They may not realise that the situation only looks unremarkable because you are exhausting yourself to keep up appearances.  The person perks up during the visit and nosedives after, when alone with you. That means people don’t offer help or try to think up ways they can support you.  It’s another job for you, to gather these resources, but worth it unless it starts to be stressful in itself.  If other family members don’t seem to accept the reality and get involved, you just have to move on.

  1. Take care of yourself

Advice in the popular media about any busy person loving yourself and taking care of yourself covers soft stuff like taking exercise, keeping a healthy diet, meeting with friends, and keeping up with things you enjoy such as taking leisurely baths by candlelight, meditating, relying on your faith.  Of course, you must do all of these things.  Always and as long as you want.  But there is different practical advice for carers.  That advice is in numbers one to four on this list.

The difference for you as a carer having to take care of yourself is that it’s not an indulgence. You need to protect yourself. You must adjust to the reality of the situation, and your new relationship with the person.  Being in denial and allowing others to be in denial makes your life harder, in ways that no amount of self-care will cure. You won’t even have time for self-care if you don’t ask for and allow help.  For that you need as much specific and relevant information as you can get, and the earliest diagnosis possible, to allow you both to make plans.  Those plans are for now, to live as well as possible for as long as possible, but also for the future, to free you from uncertainty about what the person would have wanted.  And you must seek out and accept help wherever you can.  There are people who will help you who are only waiting for you to ask. Practical love is the best kind, and carers need to receive that as well as to give.

 

Professor June Andrews

Fundraising

Raising funds for research in a kilt

We would like to say a very big thank you to David Lambie, who selected Dementia Research UK as his chosen charity for The Edinburgh Kiltwalk in September 2022.  David took part in the 21-mile ‘Mighty Stride’ and he raised just under £1000.  We are hugely grateful for his support.  Here he is pictured on the day, on the right, with his partner Gary and their dog Rosie. 

David wanted to raise funds and awareness for dementia research because his dad is living with dementia.  We will make sure that the money David raised will go towards the research effort to help people who are affected by dementia, and towards the provision of services to improve the quality of life for people with dementia.  Thank you David for choosing us and for all your hard work!

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Causes of Dementia

Dementia is caused by a range of diseases and injuries that affect the brain, such as Alzheimer’s disease or vascular disease or head injury. In September 2021, the World Health Organisation (WHO) stated in their “Global status report on the public health response to dementia” that the number of people living with dementia is growing. They estimate that more than 55 million people are living with dementia, and this is predicted to rise to 78 million by 2030.

Informal care accounts for about half the global cost of dementia, and social care costs make up over a third.  Carers in high income countries like the UK know how these facts affect their daily lives.  Hidden costs are both financial and emotional. The WHO report describes how medication for dementia, hygiene products, assistive technology and household adjustments are more accessible in high income countries, with a greater level of financial support for the informal family carers who are involved.

The Director General of the WHO said, “The world is failing people with dementia, and that hurts all of us. Four years ago, governments agreed a clear set of targets to improve dementia care. But targets alone are not enough. We need concerted action to ensure that all people with dementia are able to live with the support and dignity they deserve.”

So how are we faring in the UK?

In May 2022 the Health and Social Care Secretary Sajid Javid announced a new 10-year plan to tackle dementia. The plan speaks of a boost of funding into research to better understand all neurodegenerative diseases.

The whole plan will not be published until later in 2022, but at the Alzheimer’s Society conference where he made this announcement, Mr Javid said that the new 10-year plan will focus on how “medicines and emerging science and technology” can be harnessed to improve outcomes for dementia patients across the country. In his speech he described dementia as the “leading cause of death” in England and Wales after COVID-19.

It’s always difficult to really get to the significance of what is meant when people describe dementia as a “leading cause of death”.  In the UK the doctors who attended the deceased during their last illness must provide a medical certificate of cause of death. This is what the family uses to register the death and is often known as a “death certificate.” It provides people with an explanation of how and why the person died. It’s the information from death certificates that gives rise to statements about what the leading cause of death might be in any population.  Those data shape government policy in health and social care.

The doctor must certify the cause of death “to the best of their knowledge and belief.”  It may not always be clear what the cause of death was. The immediate direct cause of death is recorded, but the doctor should also enter any other diseases, injuries, conditions, or events that contributed to the death.  Although the person may have died of bronchial pneumonia, it may have been caused by immobility and wasting because of Alzheimer’s disease. So, all three of these would be listed on the death certificate

The guidance for doctors says that they should almost never describe “old age” as the sole cause of death.  It may be a contributing factor.  The advice is that a degenerative condition such as Alzheimer’s disease should be given as the sole cause of death only if the mechanism by which it caused the death is unclear, but it is fully supported by the clinical history as the underlying cause.

As a result of increased levels of diagnosis, the number of people who die after it is known that they have dementia has increased massively in recent years.  If this is added to the increase prevalence of dementia due to the ageing population, of course the number of deaths recorded as caused by dementia will increase.  This increase in the awareness of dementia in the last decade is to be welcomed, even though, as the WHO has pointed out, there is still not enough effort being put in to support people to live in dignity.

But it must not be allowed to hide the fact that the incidence of dementia seems to have declined over the last 30 years.  In a study from the Harvard T.H. Chan School of Public Health, it has declined an average of 13% every decade in people of European ancestry living in the US or Europe.  The prevalence has increased because there is a larger pool of people who are at risk, but the incidence has decreased…. why?

It is hard to be sure, but in high income countries there is greater access to medicines that control the metabolic conditions like diabetes that increase risk, or ways of improving vascular health and blood pressure. Older people in their seventies now stayed longer in formal education than people who were in their seventies 30 years ago.  Every little counts.  Smoking cessation and rules around alcohol may be making a difference already.  Public health measures that protect against industrial accidents, head injuries and exposure to pollution may add to this. The recognition of dental health and hearing impairment as contributory factors supports policies of improved mouth care at every age, and provision of free hearing aids through the NHS.  Even the current awareness of the importance of sleep must be making some difference.

So, even though the bad news is that in many parts of the world there is not enough attention to dementia, the good news is that for many, health and social care policies and societal changes are making dementia less likely than it was for any individual who takes care of themselves.  But still there are forms of dementia that are inevitable because they are inherited.  In those cases, the person can live better for longer by paying attention to those lifestyle factors including diet and exercise, even if research has not found a cure.

We can look forward to the 10-year plan.  In the meantime, there are things we can all do to stay as well as possible.  But we should all be watching carefully to see whether there is sufficient commitment to supporting the informal carers who shoulder half the burden, and to funding the essential research that should be done on the “leading cause of death”.

 

Professor June Andrews

research

Reading and understanding news about research and developments in Dementia

Most weeks there are new headlines about dementia or splashes on social media.  If you have dementia yourself, or someone in your family is affected, you will probably read every word, searching for good news about a cure or for fresh information about how to stay well for as long as possible.

People with dementia expertise get concerned about the way these news stories are handled.  The problem is that they may be misleading.  Misinformation is unnecessary and cruel for people who are faced with a serious illness for which there is at present no cure.

The more we know about the brain, the closer we are to finding cures or ways of preventing the known brain diseases that cause dementia.  So, research is important in the search for vaccines, or other medication.  Some of the new information might only be one tiny step on the path to success.  It is important to celebrate every single step of the way forward.  But exaggeration or misrepresentation is unforgivable.

Every researcher who works on aspects of brain health and brain disease is determined to get their results published in a scientific journal as soon as possible.  It is only through sharing this knowledge about what does and doesn’t work that progress can be made.  The problem is that the reports of their research in scientific journals may be misrepresented by news outlets which then give the wrong impression of the results.

How does this happen?  There are several answers to that.

Sometimes the front-page headline is misleading because the story simply doesn’t match what the headline says.  That may be easy to spot, but only if you read the article right to the end, which might be on an inside page.  When I ask journalists about this problem, they complain that although they interview the scientists and refer to their published work, someone else decides what the headline will be. That person who may be the editor is motivated by the need to have something eye-catching for the front page of a newspaper, or something that online will be “click bait.” The flaw doesn’t worry them as much as grabbing attention.

A headline might say, “Grated nutmeg may help defend against dementia…”.  “May” is such a tricksy word.  It can be used to justify any statement.  I could say, “I may be able to run a marathon in a few weeks’ time…” even if everyone who knows me knows that is not going to happen. But they can’t say the statement was untrue.  But the person who badly wants a cure will already have been duped into buying up all the stocks of nutmegs because all they see is “help defend against dementia,” and they don’t notice the tempering word may.

The next thing the editor can do is add the phrase, “…scientists say.”   The writer is not only saying that nutmeg “may” help, but also distancing themselves by implying, “It wasn’t me that said it…”.  This gives two defences.  Attributing it to scientists makes it more credible for most of the audience.  And if someone challenges the journalist, they can say they were only reporting what someone else said.  Still not lying.  Even the punctuation on headlines adds to the confusion.  If they put scare quotes, for example with a headline that says “Grated nutmeg ‘cures’ dementia” they are signalling that the cure is only alleged, not asserted.  It’s another trick and a person might just see what they so much want to see.

If you go back to the source of the headline, how can any of us critically examine the research that lies behind such stories?  Even with some scientific training, most of us do not have the deep expertise to assess research without help.  But there are five things that everyone can do.

  1. Look at the sample size. If a person says their husband was cured of dementia taking a special dietary supplement, that’s interesting.  But it’s not evidence that the supplement works.  It’s a story.  For anything to have evidence that it works you need lots of cases, not one anecdote.  This is especially true if the person telling you is a celebrity or wants to sell a product.
  2. Ask who is benefitting. Is there an importer somewhere that would really like all the 900,000 people with dementia in the UK to buy nutmegs now to offload his stock?  Sometimes you can see conflict of interest in the person making the claims.  It may be subtle.
  3. Look at who is talking. Of course, we like scientists, and we trust doctors.  But it is worth doing a background search which is so easy on Google.  Is this person reputable, and what do other experts say about them? Some self-styled experts don’t have the respect of their peers.
  4. What institution is behind the research? Some universities and research institutions have fantastic international reputations, and you can be sure they have an interest in preventing any fake news being broadcast in their name, damaging their reputation.  Other impressive sounding organisations are disguised commercial businesses with no academic authority. They’ll say anything to get attention.
  5. Get help from someone who understands research. They will look at 1—4 above, but also how the data was collected, and whether the sample size and response rate is sufficient.  They will be able to judge the “validity” of the research, which basically is whether the research measures what it says it was meant to measure.

One area to think about is “confounding factors” that must be checked up when forming conclusions about research results.  An example might be the link between good sleep and dementia.  It is frequently asserted that sleep deprivation might be a causal factor in dementia.  But there are certain low paid jobs that deprive people of sleep, such as factory workers who do rotational shifts. Those workers may be lower paid and have poorer diets.  Working shifts may make them more at risk of diabetes.  Diabetes is also linked with dementia. People working factory shifts may have not completed higher education and there is a link between extra years of study and delaying dementia symptoms. So, if you want to be sure that the precipitating factor is the shift work, and not the education, or the diabetes, you need to screen for those in the research.

In conclusion, we are all at risk of being misled by news headlines that amount to fake news.  But you don’t need a PhD to critically evaluate what you are being told about dementia.  Learn as much as you can and ask for help if the story seems too good to be true.

Professor June Andrews

research

What are the symptoms of dementia?

Although many people think of dementia as a memory problem, dementia can cause difficulties with any of the functions of the brain.  These are often divided into cognitive changes and psychological changes, but there are also physical changes that take place.

Your brain is responsible for thinking, remembering, organising, communicating, planning, and reasoning.  It is also the seat of personality, and behaviour.  It affects feelings and can be the source of agitation.  If your brain isn’t functioning right, it can affect sensory perceptions.  You might “see” things that are not there, or fail to see things that are, even though your eyes are functioning perfectly well. This can affect balance, and combined with loss of control of movement, may cause difficulty in moving about, or even simple things like getting in and out of a chair.  Dementia is the term used for the cluster of symptoms when the brain, irreparably damaged by disease, fails in any of these functions.

Dementia symptoms vary depending on the underlying brain disease that is causing the dementia and the part of the brain affected.  Some causes, like vascular disease, can bring about an abrupt stepwise change or a series of changes because of a mini stroke.  That means a clot or bleeding in the brain.  Unlike a major stroke where all speech and movement (for example down one side of the body) may be lost, the vascular dementia impairments may be quite subtle at first.  Other illnesses, like Alzheimer’s disease, usually build up slowly over years, although there are aggressive forms of Alzheimer’s that cause more rapid deterioration.

Although the symptoms vary from one person to another there are a few common dementia symptoms.

  • Impairment of recent memory
  • Asking questions repetitively
  • Impairment of learning
  • Difficulty with reasoning
  • Becoming lost in familiar places or routes
  • Problems with planning and organisation
  • Difficulty finding words so communication is impaired
  • Problems handling money or other personal affairs
  • Anxiety and depression
  • Agitation
  • Hallucinations and paranoia

Although dementia is more of a risk the older a person is, it is not part of normal ageing.  There are tests for dementia that you may find online, but they are of limited value.  What is important is not how well you do in a test, but how you do compared to your previous capacity.

I told my doctor that I was having some difficulty with maths, and he laughed and told me that I’m still better than him. (Woman, age 72)

 This retired scientist was aware of how her capacity to do computation was slowing and she was making mistakes.  Her own awareness of change is extremely important.  A reduction from her previous capacity is more significant than how good she is now.   Therefore, diagnosis starts with careful questioning of the person and those people around them, to see what changes they have noticed over time.

There are many conditions other than dementia that might cause the symptoms described above.  For example, when someone is tired or depressed, or has an illness such as a urine or chest infection, it may look like dementia.  In hospital when a patient is unwell, in intensive care, or recovering from surgery they may suffer from delirium, which is a temporary condition involving fluctuating states of confusion.  One risk is that this delirium is mistaken for dementia and as a result the person is not given the treatments that would reverse the delirium.  That is why it is important to tell the clinical staff whether the patient had any of the symptoms of dementia before that hospital admission. It is unusual for dementia symptoms to come on suddenly.  There is a risk that if dementia is wrongly diagnosed, inappropriate decisions might be made, such as a permanent move to a care home.

Some people display mild symptoms, which are not severe enough to be diagnosed as dementia. This is called MCI (Mild Cognitive Impairment). They say it is like being mentally tired all the time.  It can be brought on by stress and fatigue.  Many people with MCI do not go on to develop dementia, but it creates anxiety.  If you are worried you should talk to your GP at the earliest possible stage and get a full physical examination.  At that appointment they may be able to exclude dementia and treat some of the reversible causes of those troubling symptoms.

In later stages of dementia, further symptoms develop.  It has been said that the memory problems are the least of the concerns. Behavioural symptoms include agitation, anxiety, wandering, aggression, and depression.  People with dementia can turn night into day which is exhausting for family carers.

My dad would telephone me at three in the morning, complaining that it was dark and that he couldn’t find his car keys to go to work.  He was long retired from work and had “retired” from driving three years before after a driving test, but it was hard to help him to understand that. (Daughter of man, age 85)

There is lots of advice available about how to reduce those symptoms without resorting to sedation.

The person with dementia may eventually lose the capacity to speak.  In the later stages they might be unable to move unaided and require a wheelchair or be confined to bed towards the end of life.  Continence issues in the early stages may have been because the person could not find their way to the toilet on time or got in a muddle with their clothes.  In later stages the person may become simply unaware and unable to control those functions.

Unintended weight loss is a symptom towards the end of life.  It sometimes appears that there is a loss of interest in eating and drinking and the person requires frequent encouragement to remember to eat, and to be provided with tempting food.  Mechanical problems with eating and swallowing can develop, leaving the frail person at risk of choking, or a chest infection caused by breathing in mouth contents rather than swallowing them.

Someone who has been diagnosed with dementia at the earliest stage will have years of active life before them.  From time to time a person diagnosed with dementia lives for decades and continues to have stable symptoms for a very long time.  Those people are very unusual, and it is important to study them to find out what is different from the majority whose symptoms become more serious over a shorter timescale.

 

Professor June Andrews