I feel angry…

Why oh why are there so many articles about how to prevent dementia by changing your lifestyle?  This Guardian article makes me go……. Grrrrrrrrrr!

Lifestyle changes could prevent a third of dementia cases, report suggests

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Before commenting, read the article please.

What I would like to say is that change your lifestyle to drink less, stop smoking, be more active, keep your brain active and it will make you feel better, make your health better but it WILL NOT STOP YOU GETTING DEMENTIA.

The research/study they must be using to suggest lifestyle can prevent dementia can be applied to any of the following:

Heart disease, Lung disease, obesity, high blood pressure, Diabetes, help with arthritis..and any other condition that being active can help with.

Articles like this make me so angry.  Why?  Because it gives false hope and mis-information.   At present there is no cure for Dementia.  Research has yet to find out what causes dementia, they are beginning to understand what is going on a bit better, but not why this happens.  If they did all of us living with dementia would be on some sort of medication to reverse it, or totally halt it, and we are not.

These articles are really about unhealthy lifestyles and what can happen in the long term.  So why not write that?   Some dementias can be directly through lifestyle such as Korsakoff Syndrome caused by alcohol misuse or nutrient deficiency.   Some dementias can develop through the result of traumatic brain injury.

Here are some REAL sites to find information about dementia from professional bodies and people leading the support, help and information sharing for dementia.

So, I wish these newspapers stopped writing this rubbish just to fill space because it is not helping.

Rant over……..

 

 

 

Proud to present…..

This is my story in my own words with the help of journalist Penny Bell who is creating a series about dementia, you can follow her on Twitter here.  Or view Linkedln profile  here.

Discovering Dementia, Season 1, episode 3 Gill’s Story

I recommend you also listen to the first two episodes:

The first episode is with her Mum who was diagnosed with dementia.  This is lovely to listen to.

The second episode is recorded at the Alzheimer’s show held in London.   This will give you an idea of the shows that are worth a visit to learn everything about dementia, for people with dementia, family and carers.

I know Penny has more to come.   It was fun working together with her during the recording, especially as she came along with me to the YPWD (Young People with Dementia) gardening group which I love.

Groups for younger people with dementia are very important because it stops isolation if you live alone, enables fun activities which are age appropriate.  Younger people with dementia have different needs to elderly people.  We come from a different era, singing groups will focus on 60’s and 70’s music, nothing like having a good old sing song to ABBA and the like!   Not that I sing, in fact I have no singing voice at all, when I try to sing a weird soundless screech emerges that is not very pleasant.  If I am ever required to sing my miming abilities knows no bounds.

Sadly there are not enough groups that support younger people living with dementia throughout the county.  Especially groups that provide a wide range of activities such as walking groups, Kayaking, Art workshops, Poetry groups, gardening groups, furniture recycling… the YPWD offers all of these and more in the West Berkshire area.

 

 

 

 

Reading Buses and Dementia friendly signs and instructions

where to catch image WEB

This is a picture from the internet of Reading (in Berkshire) bus ‘terminal’ stops.Spot the No 1 to Newbury stop….don’t see it?  nor did I when I was there yesterday.

Firstly I must say that Reading is upgrading its service into colour coded bus lines.  Each colour has a different area.  Newbury bus line is Jetblack where the buses are grey and black, some of the newer buses being grey, but no problem.

So I had a trip to the Royal Berkshire Hospital, and travelled into Reading by bus.  Because it was before 9 am I had to pay £5 single because my disabled bus pass card does not start till after 9.30am, something Newbury Council has changed to save money.    It takes a full hour on the bus so I guess that is not a bad price.   When I get to Reading I get off and then have to look for another bus to take me to the hospital.  I had done some research and thought a number 19b would be suitable……but none of the bus stops have any signs telling you what buses stop there!   As you can see on the map Station Road has about six bus stops/shelters but all without any signs.   All the time there is a steady flow of different coloured buses passing, stopping, then carrying on.   As to where they are going that  remains a total mystery to any visiting stranger to the town.

I am pain because of my fibromyalgia and I was feeling quite stressed out by now because I don’t know Reading at all having only visited the town twice before, so I walked up and down looking for signs to tell me where the hell all these buses were heading to.  Nope, nothing.

Fortunately there were some drivers standing around chatting and I asked them what to do and they pointed me to a bus which would take me where I was going.    I got on a bus, got off and then proceeded to navigate the hospital.  No it wasn’t a 19b but it was going where I wanted it to!

So I tweeted to Reading buses:

The hospital

The letter says:  Main x-ray department…..  so I follow signs up to the second floor (this is a weirdly set out hospital believe me) only to realise that it isn’t the right place.  So I look at the letter again and further down it reads ‘the Mammography department is on the the first floor’  So it is the Main X-ray department in the Radiography department!!!!      How many MAIN X-RAY DEPARTMENTS have they got for goodness sake!

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What I want is a bullet pointed ‘letter’ that has roughly these bits of information on:

A Heading With Appointment DATE and TIME

  • Department name  e.g.  Radiography – Mammography,
    • Main X-ray of Radiography department
  • Detail of how to contact the department if need to cancel or change appointment – with Telephone number etc.
  • Instructions:  Arrive 15 mins early for whatever reason
  • Do I need to bring anything with me?  No
  • What to wear:   You will need to remove your top.
  • How long will this take:   15 mins
  • When will I get the results:   Result will be sent to your GP/consultant may be able to talk to you at the time of the appointment.
  • And whatever else is necessary for the appointment……

How to get to the hospital:   A separate piece of paper showing:

  1. bus services
  2. small immediate road map
  3. parking
  4. Bus service numbers and stops outside of hospital
  5. Map of Hospital Departments

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I find it hard to wade through all the words of a letter these days.  I am only really interested in the information that I need.  I do believe that this is not just about dementia because there must be other people who struggle to read standard letters that have too many superfluous words on.   This is something I will take to my DEEP – Empowerment Group I think.

By the way, the staff in the hospital and are lovely even though every one of them had absolutely freezing cold hands!   They could do with a small hand warmer in every room.

Travelling with Dementia

My experience of holiday travel with dementia with hopefully some useful tips.

I recently had a wonderful holiday in Tobago.  I have fallen in love with the island as it is sheer paradise.  I felt there was nothing to do but relax, recover, swim, eat, relax, read books…..I read six books in a week, and exercised more than I have in months swimming several times throughout every day.

Travelling when you have dementia however early can be horrendous.  The trick is to plan well ahead.   Even with booking my ‘last minute’ holiday knowing what makes it less stressful helps the planning.  What works for me may not work for everyone but maybe I can say some things that you may not have thought about.

  1.  Getting to the Airport

I checked the coaches and the trains.   From where I live there is a train that goes from my small local station to Reading – a major station.  Then from Reading there is a train to Gatwick Airport in UK.  Gatwick Airport trains even has its own platform.  However, most of the trains that I wanted that day appeared to go to London which meant travelling across London by tube to another train station which is not good for me.  So I kept looking and found that a direct train to Gatwick Airport started at from 2pm and I booked that one.  From Reading to Gatwick Airport in one go – perfect for keeping distress down.

I need to know what platform the service goes from in advance, so that if I am on the station previously I check out the platform so that I know where it is.

2. Avoiding the stress of travelling

I worry.  I get distressed if I think I am going to be late if there is a time deadline because I have little sense of time these days, also because I know how unpredictable the train service can be with delays and breakdowns.

So, I looked for an overnight stay at an hotel at the airport.   I booked a room for my daughter and I online at the Hilton Gatwick South Terminal with a great deal.  Checked in online so that I only needed to pick the key up.  We both met up there, me being the first to pick up the keys and relaxed with a glass of wine whilst I waited for her.

Food – I knew from a previous experience that the hotel is a very short distance from the terminal so we went there for a cheaper meal that suited us fine.

In the morning we were up, showered and ready to go.

3. De-stressing at the Airport

We had pre-booked the Airport Lounge for a relatively small cost to wait for our flight after checking in our bags, which we also did online.  This makes things so much easier and quicker.  The Lounge offers a good range of breakfast, tea, coffee, drinks, newspapers, comfortable seats  which are all included in the price and is quieter.  It is definitely more relaxing that sitting in the general area with lots of people.   The bustle of people can be more stressful when you have dementia because it is overwhelming, so airport lounge is a great place to counteract that.

4.  The Flight

Choosing your airline and seat I think is important.  When you are fit and able you can tolerate a lot of things.  In the past I have flown with the cheapest Airlines and laughed at cramped conditions and poor service, but then have paid next to nothing for the flights.  Now I have dementia, I must make it an enjoyable experience from start to finish to have a good holiday experience.  One day I will not be able to travel so I want to make sure that I can make travelling pleasurable for as long as possible.

I choose a good airline.  Personally I fly with British Airways.  It is not the cheapest but has the attributes to make it better for me.  I usually pay a bit more and fly premium economy which is better than economy or standard.  With it you get more seat room, and are offered  a slightly better steward service.   This holiday I flew economy – ten and a half hours of wishing I had upgraded to have a little bit more room!  15 years ago it would have been absolutely fine but not now.   Now it is important to make things easier, less stressful and pleasurable as possible.

Walk about on a long flight.  I walk up and down and don’t care how ridiculous I look I join others in a bit of space to exercise.  I wish I had bought some flight socks, because my feet and legs started to swell on the flight home.

Drink Plenty of Fluids.   Thing is about dementia I forget to think about whether I have drunk enough liquids if I am not at home.  I usually drink copious amounts of tea and (weak) coffee throughout the day, its just automatic.  Cup empty = make another.   When I am out and about it is another matter.  I never think about eating or drinking.  I try and take a bottle of water with me when I’m out because it reminds me to drink.

So on a flight, you need to keep drinking a small cup of water every so often.  On my Tobago flight I found that the stewards did not come round constantly with glasses of water, but you could get up and ask for some whenever you wanted to, but I didn’t think to.  Finally when I was not feeling great I went back to get some water and was given a good amount and felt much better after that.  So you must remember just because someone with Dementia doesn’t ask, it is important to remember to keep drinking water during a long flight.

5.  The holiday

I have realised that it didn’t  matter if I didn’t travel to see much of the island.  Where I was was perfect for me.  It had the peace that I craved to enjoy myself.  We walked along the beach, up the coast road, to the local shop to buy water.  There’s a tale – there are some guys who are looking out for wives and we were followed by a guy with no teeth trying to tell us he was a good catch because he had a house and some land, he was also trying to tell me his age – 63, trying saying that without teeth!  Then a refuse truck came along, stopped and a young guy got out and started haranguing our follower to ‘leave the ladies alone’ and ‘stop harassing’ us.  It was very funny!

Even though there were far too many steps for my arthritis and fibromyalgia it didn’t matter, I found the route with the least steps to the beach – sorted.   Being comfortable with just watching the birds, sitting in the shade, a bit of swimming was a great holiday.

Returning home was the same.  I caught a direct train and it there was no stress.

Everything I do now I plan.  I am lucky enough to be comfortable with a computer and being online.  So I research.  I print everything out and I put it in a folder.  I print out itineraries for whatever I am doing if I am travelling so that I have one piece of paper for my handbag to check on ‘what do I do next’.

Next holiday is later this year so I shall be starting my planning a coupe of months ahead of time and start saving for it!

The importance of ART and MUSIC in dementia

All places where people have to visit, or where they live such as care homes or in their own home should be places that are bright and homely.  Seeing pieces of artwork or hearing sounds that they know may promote something that they have been interested in.  It is important for music to be played at times with classical, pop, folk, country (not just a radio stuck on with a channel that the staff think will do too low to hear,)  and then add some quiet times.  When music is important the type of music is also important and a whole range of music genres.

It is becoming well known that music is important to people with dementia stimulating some memories, and obviously that music has to be appropriate to each person.   In fact we all have different tastes in about everything there is; music, colours, clothes, books, places – the list is endless but you get my drift.  My interests include psychology research (because I took my degree in psychology and learnt that the mind and brain is truly fascinating, even if I struggle to remember what I learnt).

I came across this article on art and thought it made interesting reading, because I believe it has a bigger picture to offer us (excuse the pun there!).

night-geometry-2
Night Geometry by Jack Vettriano

Basically is shows that seeing art on the walls in a gallery have a more powerful effect than being shown a photo of a picture.   I love art and there is nothing better I like than seeing a piece of art on a wall somewhere, not just in a gallery, but anywhere.  Art with meaning in a cafe, shop, corporate building, or someone’s home.  I have my own collection of art  by various inluding a signed prints by artists Jack Vettriano (Night Geometry), and Susan Howells amongst other interesting artists.

Not So Fast Please
Not So Fast Please

I am not a keep lover of some of the meaningless pictures you can buy in any high store depicting the fashionable ‘picture of the day’ such as a photo of a white flower pot with coloured plant in etc.

How does all this to relate to this article?

I think that ALL of these public and private places should be respect the cultural differences and display a whole range of good ( I reiterate that) GOOD artwork on the walls of these establishments.  Nothing wrong with good prints in decent frames.   Lets see some decent artwork around.    People with dementia may have been art lovers too.

So people working in care homes around the world, take a step back and think about what it is you would like to hear and see around you.

Just saying…..