In this episode we discuss dementia with Gregory Mann – episode 2 in the vision mini series. 

 

Perito:     Welcome to the Perito Podcast Our World Without Boundaries, a Podcast all about creating inclusive environments and about helping us all become experts at identifying exclusion and create an inclusive and accessible world for everyone, everywhere.  Perito believes that we are all designers in some capacity even if we aren’t the Principal Designers like Town Planners or Architects.  This Podcast is out there to help everybody become a community expert in recognising exclusion and someone who can then contribute to a design process and make or create better inclusive design decisions.  The Podcast will help listeners learn from the day to day experiences and challenges of our interviewees and the topics we cover so that we will all have a greater understanding of what can exclude people from participating and what can be done to create our world without boundaries.  Now in our new mini-series we’re looking specifically at vision and we’re joined again by Optometrist, Gregory Mann from Mann and Francis.  This mini-series was conceived as a specific tool to help people understand impairments associated with the eye, but also the impact of temporary issues that can make short but just a severe impact on people’s lives, so in this episode we’ll be specifically looking at dementia.  Hello Greg, welcome back thanks for joining us.

Greg:        Hi thanks for having me back so soon.

Perito:     The last Podcast was particularly useful.  You’ve already done one quick fire round but let’s try another one ready?

Greg:        Go ahead.

Perito:     (1.18) You’ve already done one quick fire round but let’s try another one ready?

Greg:        Go ahead.

Perito:     (1.19) What is the greatest global challenge we face, as say global population?

Greg:        I’m going to say artificial intelligence, closely followed by global warming.

Perito:     (1.30) Is there likely to be artificial intelligence if there’s no one to build it?

Greg:        Well that’s true, good point, I think artificial intelligence will be quicker than global warming.  Your dead right if global warming hits us first then we won’t have to worry about the artificial intelligence.

Perito:     No.

Greg:        Of course, artificial intelligence could get us around the global warming issue so.

Perito:     (1.51) What couldn’t you live without?

Greg:        I’m not too worried about my phone but I must admit I use the internet a lot ever since I first got.

Perito:     (1.59) What’s the best gift you’ve ever given someone?

Greg:        I gave my girlfriend a book called “Quiet” a while ago and it’s a book for introverts and she found it really, really helpful, I’ve heard really good things from it so whilst I’m not particularly introverted so I haven’t read it myself it helped her a lot so yeah I’d Quiet for Introverts, she’s given it to a few other people.

Perito:     (2.20) Your favourite beverage?

Greg:        This is the child in me come through a little bit here, I’ve never been one for hot drinks or fizzy drinks or sweet drinks, I largely just drink water but I’m a big fan of milkshakes.

Perito:     (2.31) You could have water, water’s a good choice for a favourite beverage, that counts.

Greg:        Most frequent would definitely be water but it’s a bit embarrassing really but if I go to a really nice sort of American diner or something and everyone else is having American beers, Budweiser’s and things, I dare say I’m tempted by the ice cream milkshake.  (laughter)

Perito:     (2.52) That’s good enough, since some people might be starting out with this episode can you tell us a little bit about who you are or where you come from and how you’ve come into contact with dementia as an optician as well maybe towards the end of.

Greg:        Sure yeah so in brief I’m an Optometrist, an Optometrist is the person who works in a high street opticians, they’re the people who actually examine your eyes, ask you to read the letters, is it better with the lens, without, establish a prescription for your spectacles if you need them and we screen for eye disease, we look at the health of the eye to make sure the eye is functioning.  So I started out in a high street but since then I’ve been working almost exclusively in domiciliary care, domiciliary is by a home visit care homes and individual homes performing a home visit in service.  Before this Podcast I knew we’d be talking about dementia so I was working out just roughly how many patients I meet in a given year with dementia and if I had to guess just a rough idea I’d probably look at at least 1500 pairs of eyes a year, something like that and off the top of my head between 30% and 50% of those people will have dementia in some capacity or another, so to take a wild guess I’m probably seeing 500 to 1000 people with dementia a year, I’m spending between 15 and 20 minutes with each of those patients.

Perito:     (4.09) That is a huge number of people so we’ll come to the volume of this but what was interesting talking to the Visual Impairment Charity I was dealing with the other day they said 80% of their members are actually people with age related Macular Degeneration and following on from the last Podcast I realised just how important this was, but when the lady who was leading the charity said that I just thought, wow this is, so combine that with obviously the number of people with dementia as well these are really, really, really big problems that are impacting everybody.

Greg:        Yeah, almost it’s not a guarantee thank goodness, but yeah the odds are, I wouldn’t like to take a guess of what percentage of people have some form of Macular Degeneration by the time they get to 90 or some form of dementia by the time they get to 90 but it would be a big number, it could well be between 20% and 30% of all 90 year olds could have both Macular Degeneration and some dementia and of course you may well have both of course, we’ll come to this later, but last time we talked about various eye diseases and really what each eye disease meant and how that affected someone’s vision but there’s nothing to say you can’t have more than one eye disease and there’s nothing to say you can’t have dementia or maybe even multiple types of dementia and eye disease and when you start combining some dementia, some eye disease, some hearing impairment and some mobility issues then you’re really getting someone whose got a real uphill struggle and needs as much help as they can get.

Perito:     (5.34) Now coming back dementia before I started Perito, I’ve got to be honest, I wasn’t really aware of dementia as the catchall term that it is, I kind of had this vision that Alzheimer’s was something that was very separate and dementia was something that was very separate because people seemed to use them, at least my impression, these weren’t interchangeable terms they just kind of would seem very separate.  Just how many types of dementia are there, and can you just tell us, am I right in thinking that dementia is literally the overarching catchall term that it seems to be and Alzheimer’s fit into underneath that?

Greg:        Yes exactly that so dementia is the collective term for degeneration and malfunction of the brain in the context we’re talking about and within the term of dementia there are lots and lots of different types of dementia, in honesty at one point I remember there being about 100 to 120 types of dementia, this was probably 8 years ago or something, we thought there was about 100 to 120 different types or different forms of dementia presented in 100 different distinct ways, well as actually having done a bit of research for this Podcast there are now at least 400 types of dementia, we won’t talk about all those of course but it appears to be such a broad topic and that’s purely because the brain is so vastly complicated that there are clearly 400 different ways in which the brain can deteriorate and present as a form of confusion and dementia.

Perito:     (6.54) And I guess if we harp back to your, we briefly joked about the idea of cost between terminating Futurama but you were talking about the idea of the brain being extremely important for vision, so if this is starting to affect the brain then vision is, at least there seems to be a logical path to the eye as being an issue and if the brain stops doing the calculations in the correct way then I can see why the brain is confusing the eye.

Greg:        Yeah absolutely, so that’s possibly the most important thing to think about when we think about eyes and we think about vision, is that the eyes and the brain work together in order for us to see and we can’t see well unless both of those things are working properly, so last week we talked about how fundamental the eye was for us to see which is fairly obvious, people think that well if the eye isn’t working very well someone’s vision isn’t going to be very well affected but really the eye is if anything the more straight forward part of the seeing process, all the eye is seeing is taking in light which is reflecting off the objects we see around us and converting it into electrical signals, those electrical signals then go to the brain and it’s the brain’s job to decode everything and translate it into the real world that we’re seeing around us and even if the eye is doing a perfectly sublime job if the brain isn’t able to interpret those electrical signals properly then we won’t see very well or we may not see things in the way and the perspective that you and I see things.  So I do want to briefly talk about the different types of dementia, we said earlier there were 400 different types but if I may I’ll just go through sort of 3 or 4 of the main types.

Perito:     Yeah, yeah absolutely Greg, that’s fine.

Greg:        And we can refer back to those a little bit later.  You mentioned Alzheimer’s earlier on, that’s one of the most common and frequently found forms of dementia, this is sort of the text book type that everyone thinks about when they think of dementia, so its gradual decline of the brain and it’s function.  It presents in the fairly text book forms of dementia, it’s the simple forgetfulness, someone trying to talk to you but they can’t think of that obvious word and that word might be cup or fire engine or dog or anything but it just, it’s really quite frustrating for them if they can’t think of that word in that’s early presentations it’s sometimes even diagnosed by someone who can’t make their way home, they drive to the shops like they use to all the time and yet suddenly they find themselves getting quite lost and getting a bit confused on the way home, or often their short term memories quite frequently are affected with Alzheimer’s as well, so they may well be a swimming pool what happened you know 20 years ago or 50 years ago but they really can’t remember what they did yesterday or what they had for lunch or anything like that.  So that’s Alzheimer’s that’s one of the main ones.  The other one which a lot of people have heard of is Vascular Dementia, have you encountered that on the street so to speak James?

Perito:     (9.32) Yes I think Vascular’ s becoming more noticeable isn’t it because I think people are beginning to work out that with the heart disease and also I think it’s something to link to plaque as well isn’t it, plaque on your teeth if you’re not brushing your teeth properly can impact in older age on vascular.

Greg:        Interesting a lot, I have to admit I wasn’t aware of that, a lot of forms of dementia are visible under brain scans by examining the brain and you could find plaques build-up of deposits and waste products on parts of the brain, certainly that’s more common with Louis Body Dementia which we’ll come to a bit later, so I didn’t know it was correlated to poor dental hygiene I must say, but Vascular Dementia everyone always worries about what they can do to not get dementia because obviously everyone wants to avoid getting it, a lot of dementia is bad luck and coded in our DNA I’m afraid, however Vascular Dementia is something that we can control a little bit, everyone’s familiar with a stroke, a stroke being a bleed of the brain which then starves the brain of oxygen and that affects the brain, Vascular Dementia in a way works in quite a similar way so if the blood supply is affected to your brain and we look at what causes blood supply to be affected so that’s diabetes, blood pressure, cholesterol, obesity all those other sort of other factors that we can control, if the blood supply to the brain is affected and it’s much slower than a stroke of course, it doesn’t happen overnight, it happens gradually over years then our brain is slowly dying off and that presents in poor brain function and therefore that’s a form of dementia.  So in many ways it presents in a similar way to the Alzheimer symptoms we talked about before, the forgetfulness, getting lost on the way home, poor short term memory but it is in some ways it presents in a similar way but it is quite different but the mechanism by which Vascular Dementia is caused is quite different, if we’re looking at the systemic factors that we would call the whole body factors, blood pressure, cholesterol, diabetes all that sort of stuff they are contributing to the increased chance of Vascular Dementia.

Perito:     (11.26) That’s good Greg thanks, anymore for, you mentioned Louis Body is that a big one as well?

Greg:        Again we’re only talking about 3 or 4 today but this is one of the more common one as well and Louis Body its main reputation are hallucinations, really quite prone to causing hallucinations and of course this isn’t the eye allowing us to see hallucinations or triggering hallucinations this is the brain that causes the hallucinations and hallucinations can be visual or they can affect our hearing, they can be auditory as well.  So often people with Louis Body Dementia will have really quite severe periods of confusion and it can also really affect their sleeping pattern as well, it’s not unusual for Louis Body to fall asleep most of the day and be up and about most of the night.

Perito:     (12.06) That just sounds very distressing perhaps more than the others.  That’s seems like it’s going to impact physically on your sleep and life as well so it’s quite interesting.

Greg:        Yeah absolutely, I wouldn’t like to say which forms of dementia were the best or the worst to have but definitely a lot of, some forms of dementia don’t trouble the patients quite as much, they more trouble the family members who find it very upsetting, whereas Louis Body Dementia if these hallucinations are distressing for the patient that can really work them up.  The final form of dementia I wanted to talk about which is Frontotemporal Dementia this again is another one of the more common ones and this can affect again some of the text book characteristics of dementia that people think about can really affect their behaviour, their personality changes, their ability to speak and sometimes these patients with dementia they lack tact so the text book form of someone with Frontotemporal Dementia they may well be really quite in your face, they may be quite aggressive, despite being a very quiet and peaceful individual who never swore in their daily life before and now suddenly their speaking all sorts of blue language and they may also struggle to speak and comprehend what you’re saying to them.  So those are probably the four of the most common forms of dementia and we’ve put them in these categories but of course just because someone has a certain type of symptom it doesn’t mean they have that type of dementia it’s all up to the professionals to establish this.

Perito:     (13.26) If we turning back to eye issues so we briefly mentioned that moments ago how does dementia then impact on a person’s vision?

Greg:        That’s a really good question and it’s one that I’ve been trying to figure out for the past 10 years, so going back to what I said earlier the first thing to stress is that even if the eyes are working perfectly someone could have dementia at the age of 82 and they could have the eyes as good as any 40 year old, they’re eyes could be absolutely fantastic but if the brain isn’t interpreting what the eyes are seeing then they will perceive, their vision will appear to be really quite badly affected and there’s been quite a lot of research on it but because the brain is so broad and so easily affected in many, many different ways and with 400 different types of dementia all affecting the brain in different ways it’s really hard to be certain how that person may interpret the world.  However we can talk about some general rules of thumb or things that we do often find are affected and it might help us sort of thing about how someone generally might see, so what I would say is when people ask me this, what it is like to see if someone has bad dementia, I often say it’s a bit like being really, really drunk on alcohol, or perhaps even heavily under the influence of psychedelic drugs, now I don’t about you James but I’ve never taken psychedelic drugs and I’m not a big drinker either.

Perito:     No nor me no.

Greg:        So I’m not suggesting for the research purposes only family members with dementia start taking LSD or some really strong psychedelic to try and emphasise with their family members.

Perito:     (14.53) I think we’ve seen it recreated on television enough times haven’t we in various movies and stuff.

Greg:        Yeah we have, absolutely and I have, when I’ve seen those I’m trying to think of a show where it has but when I’ve seen those, it’s a movie star or something, they’ve been a James Bond type villain, a person has been drugged with some kind of, in their whiskey or something and then they wake up and their really confused and delusional for a while I often think god I bet that’s what it’s like to have dementia.  So if you think of it a bit like that then you can sort of look around your room or wherever, or your car or wherever people are sitting listening to this and think about what would I be looking and seeing if I had bad dementia or if I was on a psychedelic form of drug.

Perito:     (15.35) Well I’d be feeling scared and vulnerable I suspect.

Greg:        What instantly yeah, straight off and you would probably be aware that something wasn’t quite right but you might not know what, and is it you or is it everyone else around you whose not, people with dementia often to note are fairly cautious or nervous or easily scared because things seem new to them but a few symptoms or a few ways of thinking about how someone with dementia may see, well we talked about Louis Body Dementia they may well have hallucinations, so the hallucinations could be triggered by something, so they may for example see a shadow on the floor and even though it’s the shadow of a chair or a vase their brain may well reinterpret that into looking something completely different, they may think it’s a dog on the floor, they may think it’s a hole in the floor or an earthquake has just suddenly happened and the floor is separated, or it may not be even triggered by an object at all it might be completely out of the blue.  I’ve had patients who will see a double decker bus parked outside in the garage and there’s nothing out there at all so hallucinations are quite a big thing, I suspect again that their perspective on size and distance very likely to be quite far off.

Perito:     (16.41) Well it’s often noted already certainly in inclusive design circles that any dark carpet or any kind of lift shaft, so for instance if there’s a black floor in a lift it appear to people that there’s no floor to the lift and therefore it’s just a lift shaft so that’s why people with dementia often are concerned about going to lifts.  The same with bathrooms as well, so the floor coverings thinking back to this has reminded that actually floors, walls, anything that looks like it could be a void is to be avoided.

Greg:        Yeah avoided, good pun, yeah, no your dead right that’s absolutely true and I was gonna come a bit later on to a story along those lines actually but yeah shadows and the brain can try and interpret things as best it can and come up with completely the wrong solution, so it may well be that cup of tea that you’ve given your family member, you’ve given that patient it might be well within arms reach but it might look like it’s completely across the room or the light switch that isn’t completely across the room they may try to find themselves trying to touch towards it because it looks like it’s really close there.  I often see people with dementia who will at something on the floor and they lean forwards to try and pick it up and it’s either not there or it’s a lot closer or a lot further away than they think.  So perspective and size can be really thrown off and like you say when you talk about shadows and dark areas in a room that can really distress someone with dementia.  I don’t know if you remember the sort of childhood toys kaleidoscopes.

Perito:     Yep kaleidoscopes, yeah I do too.

Greg:        They’re sort of telescope type things you’d look through and you’d twist them and it would create all these bizarre shapes and patterns but I think to think of someone who has dementia might be like looking through those a little bit, some weird perspective on colours and shapes will suddenly change as you rotate the kaleidoscope and it may well be similar to that for dementia.  Light is another big one, sun and glare will frequently cause people with dementia to be quite dazzled, we talked about different types of glare last time in the previous Podcast, it’s known that people with dementia their pupil response is slower so therefore a little more prone to glare anyway.  Television we talked about the lack of perspective it may well look like the television is either closer or further away or even worse it may look like it’s really people if you have bad dementia, they may well look at the television and think they’re talking to another person but it may just lack the perspective and lack the fact that it’s not a 3D image.

Perito:     (18.53) Well I’m guessing as well because the bigger the television the bigger people’s heads are on the screens must be reinforcing that message as well.

Greg:        Yeah absolutely.

Perito:     (19.01) If they had TV’s on the wall more above perhaps there are other things you could do that.

Greg:        Yes I suppose that one could say that it might be a situation in which technology perhaps hasn’t given people with dementia a real helping hand, people with dementia probably remember the televisions they had when they were in their 40’s, you know in the 60’s or 70’s they may well have had a small television but it’s the size of a small microwave and then when we put modern televisions which are 50” or 60” on the wall they may not recognise that as a television, it may be even easier to confuse with a real image or something.  Other factors towards dementia which could trigger a bit of confusion for someone, and I think we need to be a bit careful about over stimulating someone with dementia, if they’ve got the radio on and a TV on, it’s very bright, they’ve got a busy window scene and there’s people around the room as well that well be too much stimulus for that person, it might be quite overwhelming if we think that their vision isn’t very good or their vision sometimes struggles processing the right image if it’s been over stimulated so their brain is busy listening and paying attention outside and having to deal with other forms of stimulation that well be that that’s a bit overwhelming for someone with dementia.  We’re also aware that their colour vision is affected with dementia as well so their brain may well either not see so much colour or it may see the wrong colours and again if you talked about dark patterns and dark colours that well look like a void, my personal opinion is that a really quite a complicated or intricate pattern on a carpet, you know some of them are almost psychedelic just to look at them and it may well feel if you have dementia and your looking at a really complicated pattern on a carpet or even just a simple one but very bright one, almost like if someone had a chessboard style kitchen lino for example that well trigger some kind of a peculiar surface like that.

Perito:     (20.38) Stripes and colour patterns is an issue for many people and they just actually remind me of when you talking there about, certainly with tinnitus, what tends to happen with tinnitus which is an audio problem and the tinnitus operates on different frequencies for different people so it will eliminate voice for some people, high pitch, low pitch, and the humming and the constant noise in the ears will cause that sort of essentially lack of distinction between the noise that you can hear hence essentially making you deaf, but if we apply that to a similar sort of logic to like coloured patterns if we’re thinking of the kaleidoscope and these coloured patterns maybe the coloured patterns are simply forming an extension of the vision through the kaleidoscope, so if you’ve already got these multi patterns and this relatively very unpredictable vision system anyway and then you’ve got an extension of that which is appearing in the real world then I can see why that might be a problem, and they essentially sit over each other.

Greg:        Yeah it could well be that like you say, some areas are almost eliminated, other colours or other shapes are massively over estimated and over stimulated into the brain.  Other things how dementia affects peoples vision well it can affect their ability to track eye movements and motion so a really busy scene, imagine if you are sitting on a high street having a cup of coffee, people watching outside, lots of people walking past, if you had dementia you would struggle to track all those people walking past, your ability to look at someone as they walk across and track them with your eye movements there’s actually quite a sophisticated mechanism to track someone there, you’re not consequentially using your eye muscles it’s a sub-conscious thing, that is affected with dementia so people with dementia it’s often thought that if it’s the sort of dementia that affects their eye movements, it’s often thought that they don’t see the world in a fluid moving way, they almost see it as a series of still photographs.  So yeah eye movements are bad or are often affected, so a busy world or an over stimulated world is far more overwhelming for someone with dementia anyway, certainly when it comes to their eye movements it is.  They may well struggle with contrast a little bit so that a poorer contrast environment makes it harder for their brain, their eyes and their brain have to work harder to see in an environment with poor contrast and you talked about Macular Degeneration, well there is evidence to say that another eye disease we talked about, Glaucoma which causes tunnel vision or reduced peripheral vision, there is evidence to say that people with dementia irrespective of whether they have any eye disease will also have reduced peripheral vision, similar, it will feel a bit so the world around them as their brain has fewer and fewer resources it seems to me that their brain starts shutting off what it considers less important vision, it shuts down the periphery just so that you’re really concentrating and doing your best to interpret the world right in front of your eyes.

Perito:     (23.26) That’s brilliant Greg thank you for that, so how do glasses play into dementia?

Greg:        That’s a great question and obviously one that I ask myself multiple times a day just about every day, there’s definitely a real decision to make when it comes to someone with dementia and whether glasses are appropriate for them, and there’s a real balance to be had between is giving someone with dementia glasses going to cause more problems or is it going to fix them more problems than it’s going to cause, and there’s definitely a middle ground between how much better can we make their vision versus how inconvenient or distressing or distracting or another thing for that person with dementia to have worry about, think about or lose to the glasses cause.  However if we’re talking, we’ve talked earlier on about how the brain is struggling to interpret the world around it if we can give it a bit of a helping hand by making sure that the eye is doing its part as best as well possibly can, then with the help of glasses if needs be then to me it makes a lot of sense to give the brain the biggest head start if we can really.  Generally depending on how strong those glasses are and what they’re for, we may well think, we may well decide that glasses are appropriate perhaps for general use because if they make everything in front of that person’s face clearer and they’ve just got one pair of glasses they need to wear them all the time and the person’s quite happily wearing glasses because perhaps they’ve worn them for the past 30 years and it’s not unusual for that person, they’re quite use to having something on their face, we may well think well that’s perfectly appropriate let’s give them some glasses and make life easier for them.  If on the other hand they don’t need glasses for general use but they do need glasses like most people with age just for some close work that becomes perhaps a bit more of a complicated decision because is that person going to end up wearing the glasses for the wrong thing, if their wearing them all the time when they should only be wearing them for reading then it may well mean that their going to, more likely to fall over, the vision around them half the time will be worse than it is better.  So that’s a bit of a tricky decision to make but it’s one best done with the carers or the family members having factored in what that person likes to do, what their hobbies and how confusing and distracting for them to have spectacles, but as a rule of thumb we’re trying to minimise the symptoms and make the eye do the very best job it possibly could and when we start factoring in, did they wear glasses when they were young, are they quite happy with wearing glasses, it is going to reduce the chance of them falling or do they think that they’re 35 years old and they didn’t wear glasses at 35 so they’ll keep saying, “well those aren’t my glasses, what are they doing, they’re not mine, they’re not mine” is that going to cause them more distress than its going to fix.

Perito:     (25.51) What’s becoming very clear to me Greg is just how important the eyes are for people with dementia, not only can they be an avenue for pain and distress and worry because of the way things appear but also there’s a conduit out so if glasses are needed to help that and shape the, and I suppose optimise the perception with the eye/brain combination than it’s vital.  Do you agree with that?

Greg:        Yeah, there’s almost always to be had a discussion on is it worth the extra hassle because they are a bit more hassle.  If I have a patient with, if we go through a few scenarios, so I may well have a patient whose been wearing glasses most of their adult life anyway and their very familiar with the type of spectacles they have, they recognise that it’s their spectacles so if we decide well we can improve that person’s vision, we can hopefully make the best possible job we can in the hope that then the brain is going to make things a little bit easier on the brain, we may well decide okay well what colours does that person like, what sort of frame are they wearing at the moment, do we want to give them a frame quite similar so that it’s a very easy transition for that person to have new spectacles.  If they’re use to wearing perhaps a Bifocal lens or a Varifocal lens and they’re use to that and it doesn’t cause them any trouble, I may well keep them in the same style of spectacle lens because it’s just less of a transition for someone.  If on the other hand I have another patient who really needs glasses for reading, they cannot see anything if it’s right in front of them but they can walk around the room, they can see the television, they can recognise people from across the room without spectacles that might be a situation on which we may decide, well does this person have the attention span and the interest levels to be able to look at things close up and if they really have, if they’re never much of a reader, they really are interested at looking at photographs or pictures or they’re old wedding albums or whatever it is, we may well say well giving them spectacles is probably more hassle, they’ll probably end up losing them, or wearing them for the wrong thing or they may well think they’re 32 years old and they don’t need glasses as you do, so leave them alone they’re not theirs, or it might be that we give someone some glasses for purely close work because once a week a family member comes round and sits down and spends time with them going through some old family photographs, and that’s a really important part of dementia is stimulating the memory and trying to keep people’s memory and attention active, so if they’re doing activities most of the week and then they have a dedicated time when they’re perhaps doing some family time looking through photographs, it may well be that we give them a pair of glasses but 9 hours of the day they’re kept in a drawer or perhaps the family member looks after them and it’s only when they’re doing a specific task that then the glasses come out just for that one task.

Perito:     (28.21) So does eye disease come in here as well with dementia is that going to be a problem because that’s going to be a negative I guess isn’t it immediately, we talked briefly about that at the beginning?

Greg:        Yeah absolutely so when we’ve talked about the eye, even if the eye does a perfect job, someone with dementia may well have quite poor vision because of the reason we’ve discussed above, when we start factoring in eye disease it can really make life difficult, they can definitely exacerbate all the above and unfortunately if someone has, for example, cataract, a really common eye disease, that may well mean that the eye isn’t doing a perfect job so the signals that are going to the brain are already impaired as a result of the cataract.  We talked about eye disease in the previous condition but very briefly about cataracts and how that can reduce the contrast, reduce someone’s ability to see clearly and make someone more prone to glare, so when we factor in the fact that someone’s pupil isn’t responding quite as well because they’ve got dementia, they’re more prone to glare anyway.  If we think about perhaps Macular Degeneration that’s poor central vision, if someone has bad dementia and people or the carers feel that their peripheral vision is very likely affected they tend not to notice you when you walk into a room, until you start walking in front of them and then they notice you, then it may well be when you combine that with Macular Degeneration they have poor central as well.  It may well be that their vision is really quite poor indeed and ultimately it’s going to exacerbate a lot of the above, when it comes to dementia and eye disease there’s a really complicated discussion to be had with the patient, their carers or family members, and the profession or as to whether what can we do to minimise the eye disease, can spectacles help things a bit, can they improve someone’s vision and do we need to think about operations, or seeing a referral and attending an appointment at the eye hospital as to whether we can alleviate that eye disease so that means a cataract operation, perhaps that means eye drops.

Perito:     (30.05) Does the same sort of thing replace hearing?

Greg:        That’s a great question and I won’t talk too much about hearing because I’m not an Audiologist and I’m sure an Audiologist wouldn’t talk too much about eyes but my personal suspicion is that much like vision if someone’s hearing is impaired then that will really exacerbate their ability to interpret the world around them.  We’ve talked that certain frequencies can be affected more than others, it may well be the case that a certain person has real trouble with a certain tone of voice so they may not be able to hear their wife, the gentleman may not be able to hear his elderly wife talking if she’s got a higher pitched voice but he may well be able to hear deeper tones and octaves of individuals or frequently gentlemen who have got a deep voice, so definitely hearing is a really key part of making someone’s brains job easier, reducing the strain on the brain so that the brain can interpret things the best it can.

Perito:     (31.04) Greg, that’s really useful classic information because you’ve got such a wealth of knowledge on the subjects.  What would be interesting is to share that knowledge with people in a way maybe more a story way so it’s easier to understand exactly how people are experiencing dementia, do you have any stories you’d like to share that would be good examples for people?

Greg:        Yeah sure I’d love to, so some of these are eye related, some of these are just things that I’ve picked up so I should stress that I’ve had very, very little formal training on dementia, so I try not to talk too much about general ways to deal with dementia but I can talk about what’s worked for me in practice and when I’ve worked in a care home or with some carers who have really, really top end and really, really fantastic with dementia, I pick up the odd story or I see the odd thing and I do pick up a few things from them.  The first one I wanted to talk to you was about a gentleman who wanted to have a wee and every time he wanted to have a wee he would stand 3’ away from the lavatory.  He didn’t like sitting down to have a wee, he wanted to stand up like all gentleman do of course but he would not walk right in front of the lavatory and as a result of course it was really quite a messy job and after some weeks the carers are starting to get really, really frustrated that every time he wanted to go to the bathroom there was a bit of a mess and some cleaning up required.  However, one person, a carer who had a lot more experience with dementia, went in and had a look at this person’s bathroom and their set-up and they find that the person’s bathroom was well lit, it was very appropriate for the patient, however he had a very large and dark bathroom mat, and this is probably going to trigger off something you said earlier on James.

Perito:     Yes, yes.

Greg:        He decided that persons’ vision was such that he saw that dark bathroom mat, I don’t know what style it was a dark purple or something and to him it looked like a hole, so why would he stand close to the bathroom, the lavatory because otherwise he’d fall down the manhole.  All they had to do was remove the bathroom mat, put a lighter colour bathroom mat in front of it and suddenly there he was standing 3” away from the lavatory like you and I would.  So it sounds silly.

Perito:     Great story.

Greg:        But trying to see the worlds through someone’s eyes and interpreting it as the best they can, can instantly reflect in a complete change in their behaviour, I’ve got another story.

Perito:     But it was so logical for the guy not to want to do that, so despite all his situation, the stress his under, the logic and the self-preservation element was still there, so I need to go to the toilet but there’s no way I’m going over that bit and just like you would.

Greg:        Yeah well absolutely and you have to be a bit careful saying this but my opinion is that people with dementia often exhibit behaviours and patterns that are quite, I don’t want to mean primitive but they’re definitely quite primal, almost childlike or animalistic, so what are children afraid of, they’re afraid of falling, they’re afraid of loud noises, they’re afraid of busyness, they’re afraid of distress, they’re afraid of anything different, any kind of change and I often find that people with dementia are the same thing, those fundamental things that we’ve evolved to be afraid of, they still maintain so falling, you know falling down a hole, that’s a primal and basic fundamental thing that we all try and avoid and that’s what that gentleman was trying to do, so in a way he was far more logical than everyone else was about it and if you try and think about the world through his eyes, could he have seen that as a form of distress, could he have seen that as a risk or a hazard, eliminate the safety hazard, improve the lighting if needs be and suddenly the problem goes away.  The next story I had and this isn’t particularly about eyes but it’s a great one is there was a gentleman who presented in a care home, fairly new to the care home and as it frequently is the case he didn’t have an awful lot of history, he didn’t come with a lot of information and this man was up at 5 o’clock every morning really quite worked up, he’d always try and get out, he’d be pacing up and down the corridors, really quite worked up wanting to do something and they couldn’t work out what it was, did he want a cup of tea, did he want to go to the lavatory, no he just wasn’t happy.  Anyway the carers put a lot of time in trying to work out what was going on and after talking to the family and doing some research they found out that this gentleman, at one point in his life, was a semi-professional rower, which will probably remind you of some echoes of 5am starts and rowing first thing in the morning James.

Perito:     Yeah often unhappily early starts yes.  (laughter)

Greg:        Well this gentleman unlike you, this gentleman was raring to go so they did a bit more research and felt that he was so use to the routine of getting up at dawn, the crack of dawn every day and going for a row, they then felt well what can we do to alleviate that gentleman’s symptoms so they decided that they can get him a boat, so I think they ended up with a canoe of some kind or perhaps just a small rowing boat and they put it in the garden for him.  It was a bit of a feature for other residents to look at, it wasn’t really any kind of a trip hazard and immediately, under supervision of course so he wouldn’t fall, this gentleman was thrilled to bits, he’d go, he’d sit in the boat, he’d mock row through the oars and either though to you and I we may look at that and think well that’s demeaning that’s irresponsible, why are we feeding this gentleman’s delusion.  The principal behind it is what does that man need to make his life more pleasant, how can we alleviate the stress, it’s not up to us to judge what’s demeaning or what’s appropriate, if it fixes the problem and it’s safe why don’t we encourage it, so I just thought that was a lovely story about a gentleman who was so distressed and they got to the solution by looking through the man’s history and taking time to look at what that man did with his life.

Perito:     (36.46) Excellent and have you got anymore for us because it’s very good so far Greg?

Greg:        Yeah a couple more, I had another gentleman also, and a couple more but before we do just going back to that rowing gentleman, other applications for that very similar story it could well be that you’ve got a patient who was a postman, it could well be you had a patient who was a milkman, it could well be you had a patient who was a builder or an accountant, giving the patients anything that allows them to compete in their routine and feel like their contributing or doing some work it may well provide some form of comfort for that person, so a milkman, some empty milk bottles, if he goes around every morning, if it he calms him down and he wants to do it, putting milk bottles at the base of every single door and the whole building it doesn’t cause anyone any harm, as long as their plastic bottles of course.  Another story I wanted to talk about was, this is a bit sad, is I had a gentleman who came up to me, I tested his eyes, we got on well, and he obviously had some dementia but he presented really quite well, he said to me, “there’s a conspiracy going on here” and I think sometimes if you’re dressed well and you’re clearly a visitor a care home often patients will confide in you in environments where they wouldn’t otherwise, you look quite different, you’re not in uniform, they definitely respond in a slightly different way sometimes.  So he wanted to confide in me in something, obviously sort of whenever you hear this you go on full alert and he said to me, “don’t you dare lie to me young man but tell me why am I in the women’s area?” and so I said, “what do you mean?” and he said, “well if I’m not in the women’s area where are all the men?”, now this was a care home, a fairly typical care home it’s probably 25 residents and he was the only male resident in the entire care home, we all know that women live longer than men and that was perhaps a bit unusual to have only just the one gentleman but it does happen from time to time and so I was now faced in a position where what do I tell him, do I tell him well, do I give him a long speech about well men live less longer than women therefore statistically unfortunately most men have passed away that’s why they’re not in care or do I try and say something to him that relieves his symptoms, alleviates his concern and worry but at the same time not wanting to upset him or lie to him, so I said to him, “that they were all at work” and that seemed to make him quite happy, I said to him, “Bob you’ve retired but the other gentleman will be back later, they’re all at work” now I knew he had short term memory so he’ll probably be asking me the same question in an hour, if I knew that he’d be worrying at 6 o’clock why no one was home from work I probably wouldn’t have said it because then that fear would have caused an additional further complication but knowing he had short term memory problems it was less distressing for him to think that he wasn’t in the women’s section the men would be back later.

Perito:     (39.32) So what happened to Bob in the end did he, is he still alive and is he still asking the same questions?

Greg:        I have to admit I haven’t seen Bob for some time but he was, I think, after that he was quite happy with that answer and went back along with his daily business reassured that he wasn’t in the women’s section, he wasn’t in the girl’s section, that generation quite frequently separated gender and how they spent their time.  I think we often find with dementia that as the brain degenerates, patients definitely present with different, they go through phrases of quite a lot of confusion and then they suddenly settle down again and then sometimes they can become more confused and deteriorate and decline a little and then they can settle down again, so I think Bob was, when I met Bob he was definitely in a more agitated state and then a month or two later it is very likely he would have settled down and calmed down and been less concerned that he was in the women’s section, or just eventually accepted the world around him for what it was and not really worried about it too much.

Perito:     (40.32) Okay brilliant thank you Greg anymore from there or shall we move onto the next question?

Greg:        Yes I’ve got one more story, this is not dissimilar to Bob actually and it’s a bit of quandary for your listeners to think about and how they would choose to deal with this situation.  I had a patient who requested a home visit and on visiting there she had two daughters with her, both daughters were very nice really looking to after their mother but they had a really quite different approach to how they would deal with their mother’s dementia.  The mother was constantly asking where her husband was, now the husband sadly had passed away 5 or 10 years before this and we often find with dementia that their short to medium term memory is really badly affected, so whilst the mother recognised her daughters and knew she was with her family she didn’t know where her husband was and it was a really awkward situation because one daughter wanted to tell her mother the truth, she didn’t want to lie to her mum, she felt that her mum should just accept what she said, she wanted to tell her that her husband had died.  However they’d done this before and it had led to real genuine distress from her mother, literally screaming because if you’d found out that your nearest and dearest had just died you’d respond in the same way.  The other daughter preferred a more, a lying approach, a deceitful approach but one that managed that patient’s symptoms arguably in a much calmer way, she would just tell the mother.

Perito:     (41.54) Well it sounds like a white lie doesn’t it, yeah?

Greg:        Yeah, yeah a white lie, that’s a great way, it’s a white lie and she would tell her mother that the husband was at work and he’d be back later to calm her down, so I’m not saying there’s a right or wrong answer here and I think we’ve got to be really careful when it comes to deceiving and lying to our nearest and dearest family members and it may well be that sometimes they can remember that lie and then they’ll challenge you 5 hours later, well why aren’t they back from work yet, so you’ve got to be quite careful but it was just to raise a bit of a dilemma for our listeners is to how do we best deal with these patients and the answer is to how we best deal with these patients and the answer is probably whatever works for them, whatever works for them is a way but consider what works for that person, not what you think is best or what you would like to hear, what makes things most comfortable for that person and achieves your goal of making that person happy.

Perito:     (42.50) You’ve mentioned about the individual and designing for the individual needs, if we come back to the postman and canoe situation, that’s all very well, so that’s very bespoke, have you got any tips, rules of thumb our listeners can do to design better or just understand how to engage with a person with a dementia on a general basis, so are there things that the majority of people can do to help the majority of patients or citizens who might access or interact with their services or design?

Greg:        Yeah sure great question, I’ll definitely keep this mostly to do with eyes but a few little tips that I’ve picked up in the past in general I definitely suggest getting their ears and eyes looked at and examined properly and preferably in a domiciliary setting.  You’ll often find that people who specialise in the home visits will encounter dementia far more frequency than those in a high street, so a home visiting Audiologist and a home visiting Optician is more likely to be experiencing dementia but don’t be afraid to ask that when you’re booking the appointment.  Of course getting as much information as you can from your doctor, your consultant about the nature of your family members particular type of dementia, do they have one type, do they have multiple types and how that’s likely to present and knowing whether they have a form of dementia that causes hallucination, whether they are possibly gonna have their visual fields affected or lose their peripheral vision.  Knowing that information will mean that you can customise the world around you, around that patient far better.  Don’t be afraid to do a bit of trial and error, don’t be afraid to think, come up with a theory oh are they behaving in that way because of X, Y or Z, let’s try and eliminate X, look at Y and work on Z just seeing if that helps that person.  Yeah so a few little tips and tricks for the eyeballs as a rule of thumb it’s quite a good idea to think a bit, to approach things in a similar way to if someone has lost their vision as a result of their eyes, we talked about some of these in a previous episode but similar principles to as if they’re losing vision or they’re registered as blind.  So improving the contrast in the world around you, that’s generally with lighting, eliminating shadows, keeping things quite simple so for example if you imagine someone had blind would you feed them mash potato on a white plate, probably not.

Perito:     No I don’t think I would now, no.

Greg:        No I don’t think you would.

Perito:     I might have done before you just said though.

Greg:        Yeah, yeah you may well have done, in the words of Alan Partridge use a sausage as a breakwater.  (laughter)  So you may well choose to have different colours plates and objects to make life easier for that person, so a dark plate, so if you’re serving a lighter coloured food is much easier for that person to see, if you’ve got a pale cup it might be beautiful but if you’ve got a pale cup on a pale tablecloth again it’s much, much harder for them to see especially if its just full of water, or milk or something pale as well.  So working on your contrasts of the objects in the world around you, try to eliminate glare and reflections just like if someone’s registered as blind, being aware that general lighting can be your friend but lighting and glare can be your enemy, eliminating shadows with lots and lots of lamps so that they don’t shine directly into the person’s face but they do cause generally good lighting.  Keeping things familiar is really important of course, changing the bedroom or the layout of someone’s room if they have dementia is really quite distressing for them but don’t be afraid to jiggle things around a little bit if it improves the lighting and removing, as you said any really complicated patterns on the floor or the walls, complicated or confusing pictures, carpets or rugs.

Perito:     (46.23) So have you got any further general tips Greg which would really effectively for people?

Greg:        Yeah these are just general tips that I’ve found work for me in general practice and I think as a rule of thumb they may well be worth your listeners thinking about, so remember that the brain controls almost everything and dementia can affect almost any part of the frame therefore almost anything can be affected but as general rules of thumb being slow and calm.  I often think of people as mirrors, people with dementia as mirrors, they are essentially products of their environment, so if you’re agitated, if you’re busy, if you’re loud, if you’re worked up, if you’re stressed so will they be, however if you aim to be calm, friendly, smile and go back to real basics with body language, touch is a really good one, where you touch someone is really, really important, touch can be very reassuring for someone anyway between the elbow and the upper arm is a really good gentle way of approaching someone especially with a smile and especially if you approach slowly, that can really reassure someone.  I probably touch.

Perito:     (47.20) And I guess from the front as well, so you mentioned that before but also thinking back to the previous Podcast with vision impairments, locating and touch on someone and approaching them in a way that they can still view you from periphery and everything was really important.

Greg:        Yes absolutely great point, you may well approach them from the front when you’re doing that and you may well of course use another sense that you have available to you sound, you may introduce yourself or make sure that you’re talking when you’re doing it so that they can hear that someone’s approaching as well as seeing, as well as feel, so you’re stimulating all those senses so that it’s less of a shock to someone.  Other things to do with dementia, I often find people with dementia quite like to be called by their first name, we may think of the older generation as liking the formality of surnames but firstly if you’re dealing with a female remember that they may have had more than one surname in their past, if they were only married at the age of 70 under Mrs Jenkins it may well be that they don’t remember that, they remember being Mrs Smith so if you call them by their first name it’s a much easier and more familiar and friendly way to approach someone and eliminates the chance of them not recognising themselves as a different name.  Also be aware that a lot of elderly people will have more than one name, so they may be christened Joan but from the age of 5 they may have been called Betty, so if you call them Joan they won’t recognise as their own name, so being aware if you’re dealing with someone you don’t know very well make sure you find out how they like to be addressed, more often than not, or very frequently surprisingly so it will be a different type of name.  Be sure to work on your body language and keep calm and rely on the base indicators like smiling and being aware that people with dementia will mirror you.  If I think back to my time in practice I’ve been punched and head butted by patients in the past, more than one of those have been female believe it or not however, with hindsight most of the time it’s been my fault, I’m pleased to say it hasn’t happened over the last 4 years or 5 years so I must be getting better are reading patients body language, calming and controlling my own body language and knowing when to take a step back or when whatever methods and techniques I’m using are not working.  We’ve talked about touch a little bit and it’s towards the upper arm and the elbow.  Another strange story is don’t be afraid to go with it, I had a patient who would insist on wearing their pyjamas for breakfast and the family member who was caring for them really didn’t like the idea of it, it was always got up dressed and first thing in the morning being smart and well presented from when they were first married and the family member really wasn’t in on this person still wearing their pyjamas for breakfast.  So I do think routine and a regular stable environment is really important for someone with dementia but at the same time is it worth causing a really big argument over getting someone out of their pyjamas in time for breakfast.  Consider the option that it might not be, it may not be worth causing that person that distress just to get them out of their pyjamas.  So we may look at it and think that looks a bit silly, that looks a bit unconventional but does the patient, does it may the patient’s life easier, is it more pleasant for that patient.  Another really interesting.

Perito:     (50.13) I guess it might be the one thing, sorry Greg, it might be one of the few things that they actually recognise, maybe one of the few things that they look at and go like a child with their blanket or a favourite teddy, perhaps an element from the clothing item stand.

Greg:        Yeah that’s a really, really good point, very probably actually, that frequently explains, I have one patient I can think of them now actually, names Dennis and he likes to wear a bobble hat indoors, all day, even in the summer and exactly that he probably use to wear it 20 years ago or a bobble hat 20 years ago when he was walking the dog and so he thinks that he knows it’s his, he remembers it’s his and I think if people have dementia and they’re aware that the world around them is slipping away from them and they’re aware that something’s not quite right, they’ll very frequently grab on and clutch onto something they recognise or they know is theirs and that brings me nicely onto another point and that’s stealing.  We often find that people with dementia steal things, and they not stealing, they’re taking things and they often hide them away, the reason they do that is they look at something like keys or a picture or a wallet or a purse and they think god that’s important I do not want to lose that, that’s really important and they’re aware that things aren’t quite right for them, the world around them is slipping away a little bit and they think what I can do with that really important thing, I know I’ll put it somewhere safe, I’ll put it under my bed, I’ll put it in my drawer and that’s why we often find people with dementia take things because they think that it’s theirs and they think that it’s important and they want to put it somewhere safe because they don’t want to forget where it is.

Perito:     (51.40) How’s this working going forward, are we making progress with this, I mean I’ve found this particular whole conversation to be massively enlightening but also its concern is there’s a concern here that we may be not doing enough to help people with dementia particularly as this is a huge, huge issue going forward as we get older population and the whole idea of an inclusive environment which obviously is excluding people simply because they can’t interact with anymore or maybe we simply don’t understand how to help them interact with it anymore, whether they become, have dementia.  What are your thoughts on the future and the way this is moving forward?

Greg:        I just don’t think dementia was really even thought about 30 years ago was it, it was more just that they’re, “oh my crazy old aunt she’s going crackers, she’s going crazy don’t worry about if she starts talking about the war, it’s perfectly normal” it’s definitely becoming better than that, we are more aware of dementia but you’re dead right it’s such a broad and complicated issue it’s obviously massively underfunded of course and answer generally I think is time and a tailored approach to individuals.  The more time we can spend learning about someone learning about their history, learning what works for them or what doesn’t work for them betterer and more inclusive environment we can make for people, but I think your dead right it’s going to become more of an issue over time and although things are moving in the right direction it feels quite slow and I’m not sure how you’re listeners can really tailor their environment if they’re shopkeepers or if they own practices and buildings that are going to be visited by people with dementia it is quite difficult to tailor someone’s environment in terms of a physical environment I think being aware of over stimulation is a really good one and I’m sure that would help lots of other disabilities, thinking about contrast and design and layout is a really good one and again that will help people with other disabilities probably.

Perito:     (53.22) You also mentioned it a second ago Greg about the idea of we’re people mirrors, so as long as everybody when their designing projects to think of people as mirrors they are directly reflecting what we produce for their products, their environment like you said.

Greg:        Yes exactly that.

Perito:     (53.35) Which is amazing in terms of this really struck for me is the tool so no matter you do if you have a crazy world that you’ve created for a shopping experience and don’t be surprised if people react in the same way to it, whereas if you’ve got a perfectly normal pro-generic then go for it.

Greg:        Yeah, no absolutely if it’s a high energy, all guns blazing casino or shop selling computer games for youngsters it’s going to be such high energy, it’s going to be massively over stimulating, massively confusing and intimidating for anyone with dementia, as you say they’re products of their environment.  I’ve just thought about this idea now but if I had a shop and I wanted to tailor specifically for people with dementia as well as a lot of staff training I would really consider having a protocol in place where I would, and a template where I would tailor that shop for two hours a week for people with dementia to come and visit and that might involve removing an awful lot of the stimulation from the walls, changing the lighting to make it a calm environment, changing the background music, making sure that my staff know, oh well we’ve got this dementia window between whatever it will be 10 o’clock and 12 o’clock on a Thursday, this is a calm and generally relaxing environment, our staff are aware that some of the patients may have dementia so they’re changing their body language, they’re picking up on non-spoken queues about what that person seems to respond to, changing the lighting in the environment, maybe even changing the colour of the background lighting to sort of create a more calm and relaxing environment.  Perhaps that will be a way in which things could move forwards.

Perito:     (55.16) Now there are quiet hours and things out there but one of the issues I’ve got from an inclusive environment expected with this is we’re turning around to people and saying you’re only welcome here during these predefined tolerated types and I think everything that you’ve mentioned and particularly with dementia patients and customers isn’t actually that far off what they’d quite like as a shopping experience, certainly during Covid I’ve noticed how much easier the Co-Op at the end of my road is because it’s almost like a personal shopping, there’s fewer people in there, you can queue patiently outside, everything’s so much more relaxed and overall it’s a much more positive experience for me.

Greg:        Yeah absolutely and a one-way system which has been brought through for Covid, certainly my Co-Op’s got a one-way system, that definitely makes it easier for a patient with dementia if everyone’s sort of shuffling and moving in the same direction.

Perito:     (56.04) Some vision impairments as well.

Greg:        Absolutely, absolutely, I can see that the other way to look at it is you’re only welcoming in people for narrow window a day, I guess perhaps the free market might solve it if someone thinks that there’s a demand for a permanently calm and relaxing environment that all the introverts and everyone who likes that environment will take their business there and that may be the way forwards, but I do feel that we’ve got a long way to go, it’s such a broad topic, it’s so hard to generalise and we’ve talked an awful lot about various rules of thumb and general traits.  I think we’ve got a long way to go, but like you say hopefully some of the principles tie in with other disabilities that make life harder, so if we can work on things for some people who are blind it will very likely improve people’s dementia as well.

Perito:     (56.56) And before I ask you about any final things, topic, question, what I’d like to just ask if you’re happy to talk about it is everything that we’ve talked about today is very emotive, you’re dealing with people who are in a stressful situation often towards the end of their life, how does this impact on you and what did you, what impact does it have emotionally for you as an optician to see people in this and do you find that you’re kind of just having to work through it or do you often think about these things and how do you manage that for yourself?

Greg:        First thing to understand with most forms of dementia it’s more upsetting for the family members than it is the patient, very often.  The patient frequently, they may go through phases of getting quite distressed or knowing that’s something’s not quite right and getting very upset about it but the vast majority of people that I see with dementia are pretty content, they’re quite relaxed, they’re quite happy, they may have gone back to basics a little bit in what they like and don’t like and what they’re doing with their time but 9 times out of 10, more than 9 out of 10, 97 times out of a 100 they’re actually fairly content, fairly relaxed, it’s the family members who find it really, really difficult because they’re seeing their loved one change, they’re seeing their loved one decline and become less of a person that they remember and that’s really hard for them.  So I think remembering that if the patient is happy, you’ve done your job well and that’s the most important thing, I think that’s really important to think about and also just thinking about the funny side of dementia, I mean people with dementia do really, really funny things, we’re talked Frontotemporal Dementia and how one can lose their inhibitions.  Frequently people with dementia can be incredibly honest, it’s almost childlike in how naïve and honest they are and that’s really refreshing in a world where everyone tries to save each other’s feelings so I’m trying to think of some situations really I mean I’m luck enough not to have a bald patch but if I did I can guarantee it would be pointed out at least once a day by someone (laughter) so certainly I can have someone’s, more than once I’ve had someone saying, “that’s shirts far too small for you”, “good god look at the colour of that tie”, “she’s far too pretty to be your girlfriend” as they point at a carer whose talking to me.  Something hilarious like that so I think it’s really important to sometimes be prepared to laugh at the funny side of dementia and as long as the patient’s happy I think that’s the most important thing.

Perito:     (59.07) Any final things you’d like to add on any topic at all, so this is a chance for you to say what you’re thinking or what’s that’s come up new technology or anything at all?

Greg:        Yeah sure lovely, two things really the first one which is what I really wish I’d mentioned last week we talked about Macular Degeneration and how it’s extremely common and can cause some real impairments in peoples’ central vision, there was one thing I wanted to talk about and it was hallucinations and Macular Degeneration, there’s a condition called Charles Bonnet Syndrome and it’s a situation in which the scarring at the back of the eye caused by Macular Degeneration sends random electrical signals to the brain and the brain doesn’t know what to do with them so it does its best to interpret them, very often can cause a completely random hallucination and the reason I wanted to bring it up was it was thought some years ago that this was really rare, only 5% of people with bad Macular Degeneration had these occasional hallucinations and then there was a study in which actively consultants at an eye hospital, and I can’t remember which hospital it was, started asking people, every single person they had with Macular Degeneration, “do you hallucinate, it’s perfectly normal if you do, we think it’s more common than we realise” and the results eventually came back that up to 50% of people with advanced Macular Degeneration hallucinate a bit and see things that aren’t there, and those patients were afraid to tell anyone because they thought they were going mad, they thought they were going to develop dementia and actually they weren’t it was just the scarring at the back of the eye triggering these hallucinations so I do want to say who listened to the previous Podcast who had Macular Degeneration or a family member and they were worried about getting hallucinations it may well be that it’s the Macular Degeneration causing it, so don’t be afraid to have an eye test and get that examined further because it could well be that it’s Charles Bonnet Syndrome their suffering from.  The second thing I did want to mention and again I haven’t sort of managed to quite find a way to sneaking in this so far was a completely random and very small nugget of information is very often you’ll find people with dementia will ask for their parents, they’ll very often say, “where’s my mum” or “where’s dad” and this person’s 84 years old so obviously very distressing for the family members and the children saying, “well your dad died 40 years ago”, to understand why they do that it’s not unusual for someone with dementia to think they’re a lot younger than they are, so they have very poor short term memory or even medium term memory so a person with dementia may well think they’re 45 years old.  We talked about that, that man who was very distressed because he wanted to go to his rowing first thing in the morning that he was probably doing in his 20’s, he thought he was in his 20’s, so he may well at certain times have asked where his parents were, or asked for his mother for some reassurance and so understanding that people with dementia will often think they’re considerably younger than they are, that explains why they ask for their parents and it also explains where they can find mirrors quite distressing, they look in a mirror and they don’t recognise that person, if you think you’re 40 years old and you look in the mirror and you see an 87 year old in the reflection that’s really distressing for someone, so be aware that mirrors and even reflections on television can be distressing to someone with dementia and that’s why they’re asking for their mum.

Perito:     Brilliant summary there Greg, thank you very much.  So thanks for joining us today Greg it’s been really interesting to hear about your work and if listeners want to find out more about the versatility of domiciliary opticians please check the Podcast notes on the website blog or head over to Greg’s company website which is www.mannandfrancis.co.uk and that’s also going to be listed on the page too.  Now thanks for joining us Greg.

Greg:        Pleasure thanks for having me.

Perito:     Now you have been tuning into the Perito Podcast Our World without Boundaries, thanks for listening everyone, everywhere.

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