Showing posts from January, 2014

Quality of Life in Dementia

After the diagnosis of dementia many liken myself, are left feeling sad, and are left with nothing but negative feelings, as life as they know it is changing fast, and they have no idea just how they or others will cope with things from then on.
However my second consultant changed all of that within half an hour, as she told me to expect changes, to accept them and move on, as fighting could have the wrong effect.
In her words:- you may struggle to do something one day that you have done for years and may not succeed in doing the project in hand. If it fails, leave it and try again another day.
She said that there was a danger in getting quite depressed at not being able to do things, and therefore I should be careful, and think about it.
These words have kept me going, because I have lost the ability to do many things including hobbies, but I still have a life to live and will continue to do so while I am able.
But to many people who get the diagnosis of dementia, life as we knew it ha…

Very wet outside

Its a very typical British day today wet and horrible, but I suppose it could be a lot worse as there is snow forecast for some parts if the country today.
I am feeling much better today apart from having a very sore hip and knee but that's all down to old age and the weather, so no complaints there, just get on with it.
The  Grandchildren have been wonderful this weekend and I could not have asked for more as I was feeling rough when we got here,  and they seem to sense my predicament,  which is strange considering their ages, but its nice.
The eldest daughter who has Asperger's has been following me around looking after me, and helping me with the washing up after the meals and we are really starting to bond together which is nice.
I do this so I am a way from the noise at times, as I struggle with acute hearing, as does this very young girl, so its a way of bonding and having an enjoyable time away from others who may be noisy.
We went out for a meal yesterday and the two…

Feeling better

After a long month of chest infections I starting to feel slightly better thank goodness.

I have had three sets of antibiotics and steroids, and feel like I may be getting somewhere, although breathing today had been hard, like a belt round the  chest.

Still here's hoping for a better week.

I never realised how much damage a chest infection caused to the memory and brain'

Another bad night

Another very long night, when I could not get comfortable in bed, as I was breathless and very uncomfortable around my chest and back, so I got up and sat in my arm chair.

Last week I was told that I could now have pleurisy, which is odd when they have been telling me that it was a chest infection I did not sleep much in the chair, but was comfortable as I had a pillow behind my back for support. I had my Chest x ray this morning, and now I have to wait another 7-10 days before I get my results back from my doctors....        

The x ray department said that I should have been seen well before now, but I guess that’s all down to the National Health Service, who for some reason keeps changing the rules about arranging X rays.                                      

This is my third set of antibiotics and steroids this time round, the fourth in six weeks, so I just want this over with now. I was told tha…

Music and dementia

I have loved music from an early age, and still love it today, although my abilities to sing and tastes of music have changed considerably.

I also spent around 10 years in a our Parish church choir as a boy along with my Brother John, and went with them to sing in Durham Cathedral with the Cathedral choir, something that was a thrill at the time. It was hard work but I look back with pride, as I had learnt so much.

In my younger days I loved some popular music and some classical music, something that was classed as odd for my age.

My father thought, I was odd listening to classical music at first and then he got used to it and loved it.

This was the era of the Beetles and many large groups, some of which are still going today.

I never got into things like Frank Sinatra and rock music, as I could never stand it, but now my tastes have changed

I still like classical music, and pop music, but now for some reason I now like listening to Frank Sinatra, Eric Clapton along with Freddie mer…
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Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.
Our membership is open to anyone with any type of dementia.
We are a very new group and this site is still very much

About Us
The Dementia Alliance International is a collaboration of like-minded individuals that provides a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia.

Here we showcase a number of blogs written by people with dementia, and other sites and videos supporting people with dementia and their families. If you know of others, please…

Childhood Memory's

When I look back at my childhood memories, I stop and then look at today's youngsters, who are always bored out if their minds.

When I was young we had a radio, and later on a small television, but we were never allowed to switch these on. That was a no go area, adults only and anyone else touching these would be in big trouble from our parents.

We had moved from a small coal mining village to a new council estate in the next town, and that was a bit of a culture shock, because it was all people we had never seen before, unlike the village, where most people knew who you were.

We had played on the fells around the village, and by all accounts, it appears that no one ever knew where we were most of the time, but we always arrived back at meal time, even though we did not have little luxuries like wrist watches in those days, and no church clocks chiming.

This area looking back now was in fact a little dangerous as there were a very large bog in the middle of one section, and many thin…

Government suggests need for new National Dementia Strategy for England

This week in Parliament, Conservative MP Alec Shelbrooke tabled a debate on improving dementia care and services in the UK.

During the debate, Norman Lamb MP, Minister for Care Services, signalled that momentum from the National Dementia Strategy for England must be sustained beyond 2014. When referring to the end of the strategy he said:
'It is absolutely clear – that something must follow; there must be a continuation.'
As a person with dementia who worked on this National Dementia Strategy, alongside many other people, I confess that I am  a little staggered to see many things we agreed on, simply not happening at all. It took a long time to get this organised and launched, and we all thought that was the hard part, but I think many were proved wrong.

The PCTs were simply not ready or in agreement for this simply because it was not mandatory in the first place. Some made many changes while others lagged behind, but now we need them all on board for the benefit of all who …

Families and dementia

I often listen to my children, when they are talking about how my life changed, before the diagnosis, and it is amazing to listen to.

I was not the old father figure that they had been used to I had changed, and had turned into someone else they simply did not recognise.

I was in danger of losing my long term Job as a university College Engineer a job I had done for 28 years, a job I had also been doing for nearly half of my working life, and everything was seemingly crumbling around my feet, and I could not find a way of stopping it.

I had gone from doing Building and Electrical Estimates, Electrical Engineering work and College Budgets, to sitting counting on my fingers, all within two years, and nothing made any sense anymore.

I forgot people’s names at work, and on two occasions forgot where I was going, when I was walking to work, a route I had walked for well over 10 years. I would attend meetings and would leave having no idea what had been said.

My electrical exam papers whi…

University of Cumbria leads the way in dementia education

THE University of Cumbria is one of just a handful of UK establishments which has added dementia education to its curriculum.
It has become one of just 53 UK universities in the Higher Education for Dementia Network (HEDN), which has developed the Curriculum for Dementia Education (CfDE), in a bid to improve the knowledge and skills students will need to go on to work in health and social care.

“We are excited to be involved in the launch of this curriculum,” said Linda Morrison, programme lead for the foundation degree in health and social care at the university.

“As the first university in the UK to deliver a foundation degree with a named pathway in dementia care, the CfDE will also be embedded in all our health and social care programmes.

“This is a wonderful opportunity for those who provide services to people with dementia, as

education specialising in dementia care is now gaining the recognition that it deserves.”
HEDN, which is coordinated by charity Dementia UK, has develop…

French bowls helps dementia sufferers

French bowls helps dementia sufferers PETANQUE AT THE PARK ... Liz Williams, front, with the Dementia Friends group in North Marine Park.


A GROUP of kind-hearted volunteers have turned part of a South Tyneside park into a dementia-friendly area.

The Friends of North and South Marine Parks in South Shields have teamed up with the Alzheimer’s Society to reach out to people with the debilitating condition.

Members of the group have undertaken hour-long awareness sessions with the charity’s staff to become Dementia Friends, and increase their understanding of the disease.

And they are putting their expertise to good use at North Marine Park, where petanque sessions aimed at people with dementia and their carers are held on a monthly basis from spring to autumn.
One of the Friends of North and South Parks, Jack McCaffery, from Whitburn, whose late wife Cathy had dementia, waxed lyrical about the venture.

He said: “My wife had dementia and so this projec
t, which…

Social media and people with dementia

Some time ago I looked at this subject and could not get my head around it very well, so I am having another go

I am wondering whether it is beneficial for people with dementia to use social media, and I think it does by the number of individuals with this illness using blogs, and social media websites such as Twitter and Facebook.

Of course there are various places we can go and I don't know them myself so cannot discuss them

A few years ago I was told by my consultant to write my life story as a way of keeping my brain active.
I then noticed and got involved with social media websites as a way of finding out more about my illness, Early Onset Lewy Body Dementia.

Since then I have found many new friends around the world who were doing the same thing, and we all share the information, on a regular basis.

However this can cover a very large area and many websites, chat rooms and blogs.


Blogging allows you to write down items about you and your illness, without expecting anyo…