Showing posts from October, 2013

Clinical psychologists and dementia

I often wonder how clinical psychologists can look at someone with dementia, and come out with the correct results; perhaps I am missing something here,
As I have Lewy Body dementia, I don't use the mini mental tests as they are no good on people with Lewy Body Dementia, or so I am told by the consultants, because they say the results are misleading. So why is it when I go to see a Clinical psychologist, I don't feel 100% happy

I do longer tests where they always ask lots of questions and go over, lots of paragraphs and stories, with names and addresses, and then ask you questions. Then when you cannot remember, they go back over the questions with prompts, with a series of answers in which you have to pick the correct one out, and can only answer yes or no, to each, but at best this is guess work or just pure luck if you manage to get it right.

I end up with so many bits and pieces flying around in my head that I have to just try, even though it could well be the wrong answer, and…

People with dementia and holidays

Over the years I have always enjoyed my holidays, although over the last few years, holidays have been stressful, due I suppose to the fact that I am out of my comfort zone, in an area which is perhaps fast or unknown.

I do struggle with aircraft these days, I suppose again because it's a territory which is not normal to me these days.

Recently we had a holiday in Turkey, and although I was looking forward to seeing the historical sights, I guess underneath I was very nervous of the unknown.

The flight out was awful and I needed my inhalers to get me through the journey and I had problems breathing at first, then after a while it all settled down. I have never had to use Ventolin on a flight before so that frightened me a little, but luckily for me my wife had the inhalers in her handbag.

When we arrived at the hotel, it was a little strange at first, but after a meal we went out for a walk around the town centre and the markets in OluDeniz, and I started to feel at home which w…

Old blog

Last November in a moment of madness, I pressed the wrong button and completely wiped my blog, something which came as a complete shock. I could not work out what I had done, and still don' t remember what happened, I can only put it down to the Lewy Body Dementia. I had been using this blog for around four years and it had around 10,000 readers, in well over 80 countries, so to lose this was devastating. In desperation I contacted Google blogspot, who said that they could not do anything without my credit card number, but as I pointed out, I don' t  use one due to my illness, so they said that they could not help me. The next day when it all sank in, I realised that I had two choices. One was to forget it and let it go, the other was to start all over again. I had written all of the pages in word on my computer and everything was saved, so I took the second option and started all over again three days later on the 11-11-2012 the day of our wedding anniversary. I started this…

Blog question, can anyone help this reader

Blog Question
I have received this from a friend who is looking for help and support, and wondered if anyone has any advice they can give him. Any answers will be passed back to them.
As I have never been in this situation I really could not answer the question below.
Comment text:
My wife has LBD and is living in a care facility. We are Canadians who have done a lot of traveling and have lived outside of Canada on occasion.

A primary reason my wife is in a care facility was that I burned out as her sole caregiver. I have recently been wondering about what it would be like for us both to live, together, or at least snowbird together, in a less expensive country where we might be able to afford live-in or daily help.

The breadth of your blog, particularly as you had heard from people in Ecuador, where I was thinking about cost of living, caught my attention and I thought you might provide me a link to the LBD community in Ecuador. Otherwise, anyone out there relocated to be able to acce…

People with Dementia and Driving

I realise that I am opening a can of worms so to speak, but here goes.

This is a subject which causes a great deal of problems these days, and I can quite understand the stress it causes, to all concerned whether they are the person with the illness, ora carer or family member.
By law we are supposed to contact the DVLA in the UK to notify them that we have the illness, and failure to do so would possibly stop us from making an insurance claim, if we were involved in a traffic accident, no matter whose fault is was.
To me personally I do feel that this should be taken out of our hands, and should be dealt with by the medical profession, as they are clearly there to advise us in medical matters, and if we are classed as unfit to drive, then they should clearly say so and notify the authorities.
Because in my opinion that leaves them open to the person with dementia or any other illness taking them to court for neglect of their duties.
I gave up driving when the illness started and while I…

Very Violent nightmares

Since before just before I was formally diagnosed as having Early onset Lewy Body Dementia, I have struggled with very bad dreams and in some cases nightmares.

These things have little or no direct link to normal life that I know of, and they are very frightening, and sometimes difficult to break free from.

I remember the first one I had which I told my consultant about when I saw her at the clinic.
It was at this point that I learnt that these were all caused by my illness and not medication of any kind.

 On some occasions I have got out of bed, and gone to a different room simply to break the cycle or at least try to.

I say that because when we wake up from these horrors as I call them, its difficult to decide the difference between the nightmare and reality. I have at times resorted to doing things like hitting the wall so that I know I am awake, but then that leads to sore hands the next morning.

Sometimes after doing something like watching television for half an hour, I have r…

Play about living with dementia

Jack and Jill & the Red Postbox

Wednesday 30th October 2013
Stage 2 Theatre, Student Union, City Campus, Northumbria University
Event starts at 2pm Doors open at 1.30 pm

2 – 2.05pmWelcome and Housekeeping
2.05-2.15pmOpening Address
2.15 -2.50pmPERFORMANCE
2.50 -3.00pmExplanation of Discussion Groups
3.00 – 3.20pmREFRESHMENTS
3.20 -4.00pmDiscussion Groups (These will focus on Dementia friendly Communities’ issues. Details to follow)
Please see the information for the event on the 30th October Cathy Bailey is coordinating the response
An Invitation to a performance of a nationally acclaimed play about living with dementia:
‘Jack and Jill and the Red Postbox’
Wednesday 30th October 2013, 2-4pm, Stage 2 Theatre, Student Union, City Campus, Northumbria University.

Together with colleagues Amanda Clarke (Professor of Nursing), Sue Tiplady, Isabel Quinn, Margaret Cook, myself amongst others, we have aspirations to achieve Dementia Friendly Community stat…

Good day at Northumbria University

I had another extremely good day, and spent time talking about living well with lewy body dementia, to Student Nurses at Northumbria University.

This is a University where they are aiming to become one of, if not the best Dementia Friendly Nurse Training establishments in the UK.

They have very high standards of dementia training, and it's this that makes me very proud of being involved with them.

I have been there to speak to Nurses on many occasions, and sometimes this has been done in the nurses own free time which to my proves a big point, and that is they really do want to learn more about the illness first hand.

By doing this I am hoping that all future Nurses, learn how to treat people with dementia, with the care, respect and dignity that they themselves would expect from others.

I know that it is tiring doing this at times, but if this works, then I feel I am doing something to be help those who with this illness in the future.

It also gives me a real buzz when the nurse…

Future event

Involving communities in meeting the spiritualneeds ofpeople with dementia

Followup event and launch of resource guide
20th November 20131-4.30pm
Lunch will be provided

Contact for a place

Church of the Holy Nativity
Hillhead Parkway,
Chapel House,
Newcastle upon Tyne,

Home again

We returned home again last night, from our holiday in Turkey, and I really enjoyed the experience.

Today however I had to do a presentation on Living with Lewy Body Dementia, to Trainee Nurses at my adopted University in Northumbria, a place which is Dementia Friendly.

I really enjoy working there are everyone is so interested in learning about this illness, but I confess the my wife and I totally forgot the we were doing this when we returned from holiday.

After a normal long journey, I struggle to do anything, at home the following day, but today I must have been on an adrenaline rush as I got on with the presentation even though I could hardly see the words I had written so time ago.

However once we got home I had enough time to grab a sandwich, and then I was flat out and dead to the world

I have one more presentation to do at Northumbria University tomorrow and another on Thursday, then on Friday I am off to London to attend a Primary Care "Clinical Studies Group" w…


Having a relaxing time in turkey apart from the heat which is bad today.

 Yesterday we had a boat trip around the islands, and that was very relaxing watching the world go by.

Today we are having a lazy day as we are away for the next two days looking at ruins which is right up my street.

Today we found a bar with fee Wi-Fi so I can do my blog something I have missed this week.

Number of people with dementia set to soar by 2050, according to major global report

Alzheimer's Society Report

Published 19 September 2013 The number of older people dependent on care will rise threefold to 277 million worldwide in the next thirty years and almost half of those people will be living with dementia according to a report.
Alzheimer's Disease International’s World Alzheimer Report 2013 finds evidence of a 'global Alzheimer's epidemic' but says that a lack of caregivers and support for family members will lead to a gulf in care and support.

As thousands of volunteers around the country walk to raise funds for people with dementia this weekend, a roundtable to discuss the global challenge of dementia will take place on Friday September 20.

The event will be moderated by the BBC's Fergus Walsh and will feature key leaders from the health sector including Alzheimer's Society Chief Executive Jeremy Hughes.
Alzheimer's Society comment:
'Dementia is the biggest health crisis facing the world today, with numbers of those …

Deep Project

Over the next few days I will be working through a paper, to see where we can go in the North East Of England somewhere like Newcastle upon Tyne, to get this project off the ground in the new year.

This will be the start of a new project which we all hope will get dementia projects off the ground, and will start us working with other DEEP groups around the UK, something special for those with dementia when they are in the early  to mid stages of the illness

This will no doubt mean lots of e-mails and telephone calls, but it will be well worth it.
Dementia Engagement and Empowerment Project
Innovations in Dementia are part of a project run by the Mental Health Foundation called DEEP, (Dementia Engagement and Empowerment Project).
Over the course of the year we investigated
The ways in which groups of people with dementia across the UK were actively involved trying to influence policies and services and:-
Whether these groups of people with dementia were interested in networking with each o…

Holidays and all of its baggage

Its time for our holiday in Turkey and its now getting a bit stressful, which is sad.

This is because although I like  holidays, I know that I am not in control of what I do and when I do it.

It is supposed to be a happy time yet, like many who have this illness, I am a bit uncertain of what is to come, especially when you are in a foreign country, where I have never been before.

So I guess its a case of wait and see what happens.

I am no longer a fan of flying, and as the flight is around 4 hours, so I assume that by the end I will be like a caged tiger, wanting to be out and free.

I don't like sitting still these days, and when I get bored or in need of something to do, I go to my computer, but that will be out of the question.

Still it may well turn out for the best, as I know that my poor wife is very tired and in need of a rest

I look forward to getting back on line when I return.

Good night

I had a good night at Northumbria University and my talk about living with Lewy Body Dementia went well, and we had lots of questions at the end.

These trainee Nurses had travelled in, to attend this event in their own free time which proved a lot to us, as they were truly dedicated to the job, and in this day and age spare time comes at a premium.

If I understood it rightly, I now have another three speaking events to plan for when I speak to the Nurses in the Lecture theatres as part of their training, but to be honest I cannot remember what I spoke to them about two years ago, so I may have to try to trace a copy or start all over again.

Last year I was out of this, as we were badly flooded at home, so I did not get involved in speaking events, but thats all over and I am back on track again, and feeling better for doing something positive, while helping others at the same time.

After this I have been invited to do another key note speech on Spirituality in Dementia, so that shoul…

Don't understand all the changes

Since I was diagnosed, I have noticed that I have changed in many ways and I confess that I just don't understand what is going on in the brain.

My tastes in music have gone a different way to what I was used to, something which was some pop music and a lot of classical to things like Freddy Mercury and Queen along with one or two others. These were things I never liked before and it was hard to work out. I also like Eric Clapton, something which was odd years ago.

Then I noticed that my tastes in Food had changed completely, from being slightly conservative as my wife said, never eating any foreign curries or other food. To the present stage where I can eat anything, no matter who spicy or that it is, and what is more I would if left to my own devises eat things like this every day,

The other day it was noticed that my political views have radically changed, something which came as a complete shock to me.

I used to be conservative in my views but I think that came from the time …