Loneliness in Dementia

I have heard that it is quite common for people with dementia to feel lonely, and it’s only recently that I have realised, just how bad it gets

Many don't understand why it is in this day and age, that people feel so lonely but there are many reasons for it, when we look at it.

When we are diagnosed as having dementia, many like myself find that our friends disappear into the woodwork, and don't want to see us again, but this is down to the stigma effect caused by ignorance and lack of education about the illness.

I have also heard many people ask if the illness is contagious, and that makes me angry.

I also feel that when you are diagnosed with an illness like dementia, you are in some cases nervous or terrified of admitting to having it because if the horrible stigma, because it’s like cancer was in the 1960s, where many felt they were being stigmatised and treated like lepers, something I always remember.

The stigma has now gone from cancer but today we see it in Dementia, and in many cases it’s much worse than it ever was in cancer.

However many people start off without families or friends, and when the illness comes, they have no one to talk to at all.

So they get more and more lonely and isolated as the days go by, either because they have not had a formal diagnosis, or they have not been picked up by the services and charities.

So life for these people must be very difficult, because they will have no support with things like shopping or getting advice about problems they face on a daily basis.

There is another side to this, and this concerns people who have loved ones around them.

It’s a well-known fact now, that even though they have support, they still feel isolated and alone, or lonely at times, and this is caused by problems associated with dementia.

I have had many occasions when I could not think clearly for anything up to an hour or more, it was just a black hole, and I could not think of anything at all, the words would not come, or I simply could not think of anything to say which would make any sense. It was like being isolated from society and my family.

Its times like this that we all feel totally isolated and lonely, because we cannot get out of a horrible situation. This can also be caused by us misinterpreting something that was said to us by a loved one or friend. Our brain picks it up the wrong way and we end up stepping into the crevasse.

I often think it would be wonderful if there was a buddy system, where we could either ring up or go and see someone else who has the illness, where we could talk about it and find solutions.

I know that some small Dementia charities provide a service where they use buddies who can support and advise us, but these are few and far between.

I am sure that if a national buddy system were to be set up, many people who are lonely would feel a lot better, and may even join in at local groups or day services, where they would feel welcome and among friends.

This is also a service that local churches could set up, if they knew that people were lonely and needed friendship and support. Who knows but this could also encourage lonely people to go and join in at these local church services and gain more friends.

I look to the future when loneliness will be a thing in the past especially where dementia is concerned

 

New Dementia Centre

New dementia centre welcomes first patients

 

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Today, Monday, 25 November, sees the opening of a new £10 million state-of-the-art building which will provide in-patient dementia care for the people of Sunderland and South Tyneside.

This new dementia centre at Monkwearmouth Hospital will also work closely with community services including the Memory Protection Services, challenging behaviour and community mental health teams and day hospitals to provide an integrated pathway of care.

The first patients to use the new building were transferred to its two wards, Roker for male patients and Mowbray for female patients, which replace two 12-bed wards currently located at Cherry Knowle Hospital.

Designed by Medical Architecture and built by Laing O’Rourke, the construction also received input from the University of Stirling Dementia Services Development Centre, a world leader on the design of services and environments for people with dementia.

This new building is part of Northumberland, Tyne and Wear, NHS Foundation Trust’s Pride Project, the Trust’s £60 million scheme which includes the development of the new Hopewood Park development in Ryhope.
Patients will now be able to enjoy en-suite rooms, communal areas, attractive courtyards with gardening activities, a putting green and occupational therapy rooms.

There is a memory walk and vintage memorabilia including sporting and lifestyle themed items which will help patients recall important memories.

Patients will have access to an events room which features a cinema, as well as flexible space for carers support groups and other community based groups.

The building also features a recreation kitchen to help them with daily tasks like making a cup of tea and cooking activities and also a traditional barber’s shop and hairdressers.

Heather Pearce, Deputy Ward Manager, said: “The new building is tremendous and we are all looking forward to introducing our patients and their carers to this state-of-the-art ward.

“Providing the right environment is crucial to the wellbeing of people with dementia and our new unit is a huge step forward. It can only have positive benefits for the people we care for and their families as it can be a very stressful time for them when they are in hospital.”

Eye Hospital

I went back to the eye hospital yesterday, to have a check up after the prisms had been fitted to my glasses, and it was decided that I need more tests in a few weeks time due to changes.



This is obviously to do with my Lewy Body Dementia, but they need more results before agreeing to the next step



This has been going on now for nearly a year now, and confess that its starting to wear a little thin, so I am hoping that this next visit will be the last.



While I agree that the prisms are helping, its the temporary ones which cause distress at times due to the lines across the galls which are visible during sunny days.



So if these are making a difference, which I am sure they are then perhaps its time for them to agree, that permanent prisms have to be fitted in my glasses


 

Grounding in Life

I have just bought a copy of a book today, a book which I read quite a lot in my early youth, and looking at it again, I am sure that it played a Major part in shaping and making me who I am today,

The book is Scouting for Boys, by Robert Baden Powell, and I often wonder how many boys grew up with it at their sides as a boy, and then used it in one way or another in life without giving it a second thought.

It’s amazing looking back over the years to when this meant so much, to a time when we were forming a new way of life.

This period of my life was very difficult to come to terms with, but the consultant thinks that this book and its ties to the Scouting movement saved me, and got me going, into a nicer world.

Although that period of stress and torment, will probably stay with me for as long as I am alive

We all shared a common bond, and that was to become better people, sharing everything we had in life, and sharing the experience of growing up with many others, from all walks of life no matter what, school they attended, whether from rich or poor backgrounds, nothing made any difference to us at the time.

At the time I suppose I never really thought much about it, as it was learning new skills, intended to get you through life as a teenager, but when I think about it, it has formed my into the person I am today. It made me a better person, and helped me through many situations in life, because every time you got stuck your brain would go back automatically, and allow you to think of ways to do certain things

It also gave us the grounding in the true meaning of being loyal to everyone from God to the Queen, our leaders, friends and families. It was here that I learnt to cook properly, to map read and follow instructions, and also lead people from the front.

It also made us better citizens, and many of the old friends I have met since those days have not changed very much, yes we are a lot older, but those basic principles still remain with us after all of those years, and that is amazing.

I wonder just how many people around the world were brought up the same way amd still have the same principals today, and even tough I have dementia, its still a major part of my life. 

Presentation

The other day I did a follow up presentation on Dementia and Spirituality in Newcastle.



The event was being held in a local church, something I have never done before, and the odd thing which startled me on two occasions was the number of clergy sitting in the pews listening to what was being said.



When my wife and I arrived we were welcomed by the parish priest and his wife, and were shown around the new church buildings, and really made feel like guests of honour, but at the same time it made me feel relaxed, and ready for whatever came.



However during the interval of the event, when I was unsure what the response would be from comments I had passed about Dementia in the Society and the Church, but I was amazed that many of the people said that they welcomed my comments, which had made them realise just how out of touch they were as far as dementia is concerned. Judging by the looks on some faces, not everyone in the room shared their views, but then we can not win them all over in one go



Although one church Priest said that they were doing something to make people with dementia feel at home by using the traditional services etc.



I was also asked if I would attend two other future religious events where dementia would be the main topic, and may be asked to speak.



One of these is for a local group of clergy, where they feel the services could and should be altered to suit people with dementia.



I was not at all sure whether I was stepping into a Lions den with this, but I suppose that others with dementia may well be struggling to cope with religious services these days, so if I can help them  I then feel as if I have achieved something good



I do feel that if we can change the way Churches treat us, we are well on the way to achieving a dementia friendly country, so if I am asked to speak at other places including churches, I will have to consider this, as we must change the way people with dementia are treated.



I know that it will never happen, but If I was asked to speak to a Bishop etc, I may well feel as if I have started the ball rolling, because these people have the power to help us.



Writing to them simply is not the answer, I did that once and did not get a decent response

Weekend again

Its Friday again, and although I don't work any more, I still look forward to weekends for some odd reason.


Every day is the same really so there is no logical reason why a weekend should be different, apart from the fact that my Son usually comes down on a Saturday with our Grandson Jacob, and we enjoy seeing them.



I have been struggling this week with the dregs of the chest infection, which feels like its on its way out at long last, so I am hoping that things will pick up over the next few days, so that I can get back out with my camera, and take some pictures of the wildlife down at our local riverside park.





 

Meaningful Dementia Care

Dementia care is led these days by professionals from various backgrounds, all with vastly different ideas, as to what is needed as far as carers and people with dementia are concerned.

Yet I do wonder whether they actually ask those with the illness what they really want, or do they as we all know,  just take it for granted that they know best, something that is well wide of the mark

I get tired of hearing these people say, that we need this or that, when in many cases it’s all down to what they want themselves and not people with the illness.

We have to fit into their, one size fits all group, and if we don't then they say we are being stubborn or awkward.

I know that if they bothered to ask us, the people with dementia, they would get a different answer all together.

I do feel that their ideas are being pushed on to us because they cost less, and take up less time

Dementia care these days is big money, but the money does not go into the care or staff training, it goes on the shareholders, and that to me is so very wrong because many of these people simply don't care what service they are providing, as long as they get some money coming in, and in this case, it’s at the expense of those with dementia.

It annoys me in the first place, that many don't even bother to ensure their staff are properly trained, to cope with dementia patients, but this is for two reasons as I have been told on many occasions.

One is that it’s not mandatory to train carer staff, as far as this Government or the last was concerned.

The second is that many care providers think that it’s up to the staff themselves, to get trained in their own time. I do admit that one or two good carer providers actually train their staff on site, or allow staff to study in their breaks, by using the business computers.   

But as far as many are concerned, this is simply because they don't want to waste the company’s money on training staff, when it could all go to shareholders.

  However I do think that many companies would learn a lot, if they asked people with the illness to go in to speak to their staff, as I found out a few years ago.

This is because they then learn more about the illness first hand rather than reading old out of date textbooks, which imply that we all just sit in a chair and don't do anything but watch television all day.

That may well be fine in the mid to later stages, but in many cases people need inspiring, and that again comes with good quality training and experience.

 

However there are many misconceptions about Dementia.

That this illness is age related?

So what about the thousands of people under the age of 65 who have a diagnosis of dementia

There well over 16,000 people under the age of 65 who have this illness, some in their 30s.

People with dementia cannot speak, or take an active part?

People with dementia are unable to get involved

These are all things which help keep this horrible stigma which is attached to dementia alive.

How wrong can they be, and perhaps this is why many places, care homes, religious places, etc. are not encouraged to make things easier for us to get involved

 Please remember that these people may not say a lot, but their actions speak volumes.

I always remember seeing people with Alzheimer’s disease at meetings, they rarely said much, perhaps due to pressure of getting things right in their minds.

In some cases their wives or family spoke up for them, without thinking and allowing the person time to speak for themselves.

But their actions did all of the answering, nodding, smiling or giving a thumbs up in agreement, or shaking their heads or hands when they disagreed.

They still had feelings, ideas, of what was happening, and what is more they still have a sense of purpose and the meaning of life, along with that small word with a big meaning HOPE.

This has always stuck in my memory, and proved that they knew exactly what was being said, even though they could not speak.

A good quality of life is something we all cherish, and this should be encouraged among those who have this illness, and those who care for us.

These are just a few of the basic things we know about this illness, and if we the people with the illness can see it, why can't the professional’s, or is it they simply don't care.



I was once at a meeting where a high profile professor in dementia once said to everyone.

That no matter how many clinics’ he attends, he always learns something else knew about the illness.



This made me realise that at least one person was honest enough, to admit that he did not know everything about the illness and was willing to learn as he went



Whenever I do a talk, I always get care home staff coming up to me afterwards saying, we did not know that people with dementia could talk.



Do they really believe that, or is it that people with dementia are ignored and treated as if they are stupid by many care home owners.



 Yes we have an illness, but we are every bit as good as those professionals, who think they know it all.



So if you really want to know what it’s like living with dementia, ask a person with it and don't assume that you know better, because you could be very wrong.



Even people with dementia can carry on new learning things, if they are given the chance and encouragement to do so. But it’s all down to the professionals and Care staff and their quality training.



I also think that governments could learn a lot about this illness, if they had people with the illness at meetings, and they listening to what they said, rather than the professionals and commissioners of services, who at the end of the day are just doing exactly what they want, no matter what is needed by others



No matter which way we look at this the professional are those living with the illness, as they know exactly what life is like, and also what they want to allow them to live a  life in better conditions

 

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Not a good start

I felt fine when I got up this morning, but I feel a bit rough it present.

I did a presentation yesterday at Northumbria University, and I am wondering if I pushed myself too soon after being to the doctors last week with a chest infection.

I confess that I am not a good that as my wife says, I am not a good patient and hate sitting doing nothing, so this does not help at all.

At least i can do things like my blog while sitting in an armchair.

Here's hoping this goes away, and leaves my alone so I can think clearly again

Much better day

I am starting to feel much better today after the chest infection which hit me last weekend, and I am now starting to look forward to giving my presentation on Spirituality in Dementia tomorrow, for Northumbria University.

I never realised just how hard life could become when these infections hit, a person with dementia or any other Neurological disease, but today I was starting to feel more like my old self again.



Coupled with this I have had a couple of really horrible nights with very graphic nightmares, something I have not had for a while, and that hit me hard, because I was terrified to go back to sleep again.



Last night was a reasonable night, although I had a bit of a temperature, so I am hopeful that things are turning out for the best again.



I have not done a presentation for a couple of months, so I was worried that tomorrow would not happen, at all.



Its taken me a few weeks to go over the the last presentation about Spirituality in Dementia, and then  update and rewrite it, before getting it edited by my wife, so it was something I did not want to drop out of unless I was desperately ill.



But I am now hoping that tomorrow things will go well, as this is my last presentation this year, so I don't want it to fail or go down badly.



This topic is of great interest to many people these days, and its one that can be difficult to understand, something that took a lot of hard work to get started, but now I am enjoying doing it, alongside well know Clergy, who are interested in this subject.

Enjoy the day as tomorrow is another day

 

Dementia Care Training

I read this this in the press this morning and confess it made me angry, simply because its something that has been said on many occasions, yet no one takes any notice of us.

I know from experience that People with dementia and carers are often asked as a way of ticking the correct box's as far as establishment is concerned, but generally they are not in the slightest interested in our views, and that goes for government groups as well, I as I found out to my horror.

These people are more interested in the Commissioners of these services and not our experiences, simply because they don't understand dementia, and think that because they have seen one person with it that we are all the same 

At one large Government Clinical group, we were all ignored because the commissioners had to say what they wanted, and that left many disguised and a few in tears, wondering why they had even bothered to turn up.

So experience is never considered, as carers and people with dementia are totally ignored, and I don't think that this will ever change as its the bureaucrats would think they know everything, and perhaps that is why the country is in such a mess

Dementia care training is a competitive marketplace, populated mostly by people from academic and scientific backgrounds. They can tell you the statistics, what the latest research has discovered, and the widely recognised methods we should all be following when we provide care to a person with dementia.



What is often missed is the understanding about what dementia is really like – both for the individual and their family.



I'm not an academic. University wasn't an option for me; my dad needed me and there was nowhere else I was going to be other than by his side. He lived with vascular dementia for 19 years, going 10 years without a diagnosis and then spending nine years in three different care homes. Dad's dementia began when I was just 12 years old, and went on to dominate my teens and twenties. He passed away in 2012 aged 85.



Dad, and all the other people I've met who have been living with dementia, are my dementia education, and you could argue that 19 years is somewhat longer than your average degree course.



I consider being an expert by experience a huge privilege and now work as a freelance consultant, giving presentations and lectures on different aspects of dementia care. Many argue that you can't teach people what it's like to live with dementia, but I beg to differ. When I address audiences, I talk from the heart. I'm open and honest about what I've experienced with my dad and other people who are living with dementia. We need to humanise dementia in order to remove its stigma and improve care.



People who are living with dementia, their carers, families and friends are the great undiscovered knowledge bank in dementia care. Too often we belittle, dismiss or ignore personal experience, rather than encourage the sharing of it. Moreover, we often exclude family carers from opportunities for personal growth by not sharing professional knowledge of dementia, and not offering them training in areas of care provision that they are finding challenging.



There's room for many different types of training in dementia care. A good foundation knowledge of the brain and the physical changes that dementia causes is vital, as is best-practice training in areas of care provision like, for example, moving and handing, incontinence and dysphagia. Looking beyond that, however, there are the specialities of dementia. The behaviours that are so often labelled as challenging.


The decline that produces the sort of reduced functioning that highlights huge gaps in understanding. Even really simple things, like how to communicate with a person living with advanced dementia, can leave many professionals baffled.



Person-centred care is still not a widely embraced model. Too often professionals see dementia before they see the person living with it. Many people believe there is no hope of living well with dementia.


Often there is little creativity in care and nowhere near enough focus on therapeutic interventions tailored to the individual. It's time we stopped seeing people with dementia as a problem to be dealt with, and instead saw them as people whose needs it is our privilege to understand and meet.


That's how it was for me with my dad, and I believe that by working together we can hopefully make everyone's experiences more like his.

 

Dementia and Religious beliefs

Many like myself start out in life with a strong belief in their religion which ever one that may be depending on where they live and perhaps where they were brought up.



However over the years they may well let these beliefs slide into the back ground either because, of a busy life style, or because their faith is sliding away from them.



I think I fall into the second section, and that is because, I struggled to hang on to my religious beliefs when I was diagnosed with Lewy Body Dementia, partly because I lost control over my life as it was, and partly because there was little if any support from our religion, the Church of England.



Today I don't think things are any better, simply because as many have said, the Church is either not geared up to support people with this illness or memory problems, or they simply don't care these days.



Yet many of these people are elderly, the same people who keep many parish churches in funds on a regular basis, and once they give up the churches will end up closing , simply because of lack of care.

Our church does not forget the elderly when they need more funds, as they are the first ti be asked for more money, so is this totally wrong.



Years ago the parish Priest or there Assistant whether a curate or deacon, would always go to see the sick, and those in need, even though in those days they worked 5-6 days a week.


These days in our parish they don't even work that, yet they say that they cannot afford the time to look at the needs of those who need support either religious or anything else.

Yet the lay people do their work for them when asked, official or not I do not know, but by all accounts they are doing the work of the full time clergy.



When I became ill I was startled by the fact the I could not remember the Lords Prayer something I knew from an early age, so I changed services at the church we were attending at the time, because it was quieter and more relaxing.



Eventually after the diagnosis was confirmed, I lost my job as an engineer, and three weeks later my mother died, so the family decided that we should return to the family home which was now empty.



On our return I had to go through the process of the diagnosis all over again, because the first hospital had lost all of my notes.



But on completion of that I was given medication to help me through my illness.



After around 6 months I returned to the church where I had grown up in, and had been in the choir for around 10 years, thinking life would return to near normal.



I then found to my horror that the words I had struggled to learn all over again " Lords Prayer" did not match those being used at the service, in fact the whole service was vastly different.



The same happened over the next few weeks with different variations of Lords Prayer etc, so much so that I wondered what I was doing there.



During this time I had also lost the ability to sing and follow the words in a hymn book etc, so life was very difficult.



My wife spoke to the Parish Priest, who simply shrugged his shoulders, as if to say , so what.

There idea is that if services are changed around people don't get bored, or something like that.

So in the end I simply gave up and my religion went by the board.



I was very sad when this happened, because it proved that the comments I had heard from everyone else, bore out my thoughts, that the church of England no longer cared about anyone with brain or memory problems.



I desperation I wrote to a Bishop thinking I would get a good reply, perhaps I was stupid or nieve, but I got a shock when the reply came back, as he obviously did not read my letter.



I had explained that I have problems with very graphic nightmares and dreams during the night, and don't get to sleep properly until around 5 am in the morning.



But he told me to get up and go to the 8am service on a Sunday where I would have no further problems. what is the point of going somewhere when you are very tired and cannot think straight



After this I have not been back, and have no intention of returning, to a place where people don't care.



I have learnt since then that people like the Methodists, have vastly different ways of dealing with this and are more caring easy to follow, and what is more the sermons, are short and to the point and not political as we see these days.



So perhaps I will end up changing my religion, if that's what it takes to enjoy a good quality of life



Our old canon used to tell people in the 1960s that if you cannot do a sermon and get your point over in 10 minuets, then you are not up to the job. Make it short and too the point.



Its so sad that the church cannot fulfil this part of my Spirituality, but perhaps I have many other parts that I can look back on with great pride.



All I can say is that there is little wonder that the churches these days are in a mess, and perhaps its only a matter of time before they all close and end up as museums or public houses.

Scotland has first Dementia-friendly bank

This is marvellous news and may this be the first of many

 

 

THE Bank of Scotland has been named Scotland's first official Dementia Friendly Bank after working to raise awareness of the disease among its staff.

THE Bank of Scotland has been named Scotland's first official Dementia Friendly Bank after working to raise awareness of the disease among its staff.

      

Through a partnership with the charity Alzheimer Scotland, the bank has trained staff to help them provide a better service to people with the disease and their families and carers and has also said it will work to improve practices on an on-going basis.

From today branches of Bank of Scotland will start to display Dementia Friendly Bank window stickers to let customers and other people in that area know that their local branch is involved in the initiative.



Robin Bulloch, managing director of Bank of Scotland Community Bank, said: "Bank of Scotland wants to lead the way to help customers affected by dementia.



"By taking these positive steps and training our staff in dementia awareness, we aim to help make the day-to-day life easier for people with the condition and their carers."



Toni Gibson, manager of Bank of Scotland's branch in Dyce, Aberdeen, said: "My grandmother has had Alzheimer's disease for over 10 years. From a personal point of view, banking was incredibly difficult with my gran; there was no support from her bank and this led to many arguments and problems within the family.



"Money is a large worry to most people and when finance is outwith your control due to an illness, it can be extremely distressing for everyone involved."



Henry Simmons, Chief Executive of Alzheimer Scotland, added: "We are absolutely delighted to be able to work so closely with Bank of Scotland in generating this model of Dementia-Friendly Banking."

Northumbria University and Dementia friendly Staus

Northumbria University has announced plans to gain “dementia-friendly” status

Northumbria University

Northumbria University has announced plans to gain “dementia-friendly” status.


The university has been working with the Alzheimer’s Society to train 70 people to become “dementia friends”.



Sue Tiplady, senior lecturer in adult nursing said: “A lot of nursing students, when they first come to us, don’t realise just how many people are affected by dementia so that’s why we invest time teaching awareness about the condition. We stress the importance of giving a positive image of people living with dementia.



“We invite people who have cared for people with dementia and those living with the condition come in to the University to speak to students so that they have a greater appreciation of the condition and how best to deal with those living with it.”



Caroline Burden, Alzheimer’s Society area manager for the North East, said: “We’re delighted Northumbria University has set its sights on becoming dementia friendly and this is a really important step forward in the Alzheimer’s Society efforts to make our communities more supportive of people with dementia.



“This is a really valuable initiative because we are linking in with a university which is involved in training future nurses, social workers and teachers who all need to be involved with us to help improve support for people with dementia and to develop a dementia-friendly environment.”

Sunderlands, New Dementia care unit opens

The North East’s first £10million dementia care unit is almost ready to open its doors to Sunderland’s most vulnerable patients.


 The 24-bed unit, at Monkwearmouth Hospital, has been specially designed and built over the last five years to give state of the art, pioneering care of those suffering with the debilitating disease.

 Two wards – Roker, for men, and Mowbray, for women – will officially start taking in patients from Cherry Knowle Hospital, Ryhope, on Monday.



The unit was developed as part of the £60million, Northumbria, Tyne and Wear NHS Foundation

Trust Pride Project, which aims to improve mental health care in Sunderland, and staff are hoping it will provide the highest quality treatment.



Project director Tony Rainton said the opening of the centre was a “pivotol moment”.


“It is one of the biggest and boldest directions the trust has taken in dementia care,” he said. “It is the first attempt at the dementia care ideal in the North East.



“We have been working with the Dementia Services Development Centre at Stirling University, which is renowned for researching and recommending treatments.



“We have challenged some of their ideas and implemented some, and are hoping we will become the first dementia care unit they have accredited.”



The unit uses pictures including Roker Pier, and the Port of Sunderland to create a comforting, peaceful environment for patients and visitors.



A garden allows patients to mingle safely outside, play games, and do gardening, and an architect has planted shrubbery to create a therapeutic atmosphere.



“This is not a home,” said Tony. “This is a hospital for the time only that patients need to be here.

“I hope that they enjoy it, and that it brings them some peace.



“For the relatives, we are hoping it will bring some comfort.”



Each ward will be staffed by about 28 workers including doctors, nurses and support staff including physiotherapists.



Tony added: “I am hoping that staff will be motivated by it, and the impact of the building will make care more successful for everybody.”

University of Salford working to become Dementia Friendly

Salford to become dementia-friendly university

 The University of Salford is working with Alzheimer’s Society to improve the quality of life of people living with dementia by working towards becoming ‘dementia-friendly’.



There are 800,000 people with dementia in the UK and the number is set to double over the next 40 years. The associated cost to the UK economy is £23 billion a year, which is expected to reach over £50 billion by 2040.



One of the ways Alzheimer’s Society is responding to this challenge is to work with key partners and the people affected by dementia to develop ‘dementia-friendly communities’.



This involves raising general awareness about dementia; encouraging carers and people with dementia to seek help and support; and helping people to maintain independence and control over their lives through community inclusion.



Academics from the health and social care, built environment, arts, media and robotics professions are collaborating across the University to share their teaching and research expertise on dementia while taking positive action to enable people to stay independent for longer.



One outcome of this work is the creation of a robot by Antonio Espingardeiro, a PhD researcher, which has the ability to remind elderly people to take their medication and to exercise. It can also provide 24-hour emergency notifications and directly connect to carers or GPs through video conference or SMS.



University researchers are using design to help people living with dementia by creating environments that support everyday living in settings such as hospital wards, homes and gardens with the aim of maximising independence and reducing frustration.



Students and staff are encouraged to become ‘dementia friends’, which involves recognising the signs of the illness, understanding what it is like to live with dementia and taking action such as spending more time with someone affected by the condition. It is also important to support staff and students who are caring for someone with dementia.



The Salford Dementia Action Alliance was launched this week at MediaCityUK. Alliance members which include the University, Alzheimer’s Society, Salford Royal NHS Foundation Trust, office of Hazel Blears MP, Greater Manchester Fire and Rescue Service, TUC, local care homes, business and other charities and services will work together to improve the lives of people with dementia.



Professor Maggie Pearson, the University’s Pro Vice Chancellor for Public Benefit and Dean of the College of Health & Social Care, will chair the Salford Dementia Action Alliance.



She said: “Dementia is a degenerative illness with no cure so high quality support and care is absolutely vital. The University’s work to become dementia-friendly is an important step in securing lasting improvements for the Salford community.”

Politicians and Dementia

I have been involved in many government plans for Dementia, and I confess, that I have little or no confidence in what they do. To me its all down to them looking good, without doing very much.



In one notable occasion, the launch of the National Dementia Strategy. After the launch, I asked the minister who was there, about the amount of NEW MONEY, being put into the strategy.



He said NONE, as its already in the system, "and only needs to be better spent".



Yet they had publicly said that money would be available to get the Strategy off the ground, and at a meeting the other day people were genuinely asking if the strategy had actually done anything positive in the UK, when we see all of the sad cases of people with dementia being abused, in hospitals and care homes.



We should have had mandatory training for all care staff, whether the care home owners liked it or not.



We then saw councils like Durham, getting money to grit roads all courtesy of the National Health Service and the Strategy.



Why because the government did not and would not ring fence the money for the strategy, so can we ever believe anything they say about dementia.



That to me is something quite fundamental, if its not ring fenced, it can be used for anything within the Health Service and no one would ever know or question it.



Perhaps I am becoming cynical in my old age, but I cannot see this Tory Government being any better, simply because of the way they are treating the poorer classes in society.



They are hitting the disabled and the poor with what is called the bedroom tax, making sure that two people sleep in one bedroom, even though one of them many well be disabled or have dementia, and may well need to sleep in a  second bedroom.


This also allows carers to have a good nights sleep, because many of us with dementia do not sleep well at all, so this must have a knock on effect with our carers and loved ones.



While there may be people out there with bigger homes than they really need, I do feel that people with dementia etc, or the disabled, are being victimised by the Governement.



Yet the wealthy of which Mr Cameron is one, get away without paying their full tax, and in some cases it is known that many in this country get away without paying much tax at all, because they use off shore accounts.


If all of the wealthy paid their way in this country for once, we would have a fairer system, as more money could be put into the system.




These politicians simply don't understand what the poorer classes are going through in the first place, and in my own view are simply making them selves feel good, by having a Prime ministers challenge in things like dementia.




Many people in the UK these days are struggling to pay for their bills due to the big cartels who are putting the bills up every few months, without needing too, and the government is letting them do it.
Then we hear that politicians get their energy bills paid for, care of the government, something I cannot accept or understand. One last week was found to be getting his energy bills paid for when it was for his home and stables.



If Joe public did that he would end up in prison



It seems to be a class system all over again, and it will never change as long as millionaires  are elected to run this or any other country, because they are only filling their own pockets.



I admit to having voted conservative all my working life before the diagnosis of dementia, but I have never seen such a bad government in this country as the one we have today. I now know that like many other people, I will never vote for them again after this, as they claimed they were there for the people.



It leaves me wondering when the next new political party will emerge, and one that really cares for the values of the working and poorer classes, because in all honesty, all three parties in the UK are so similar, that too many people we have nothing but three Tory parties



If we must have reviews of health issues like dementia, then let us have the money ring fenced to stop it being used for the wrong reasons, and let it be all NEW MONEY, not what many are calling money laundering by governments, allowing them to carry on saying that its already in the system.

I was never political in any way, until I got involved with the governments of dementia issues, but now its really getting to me.



Perhaps that's just one of the changes that dementia brings with it, I don't know, or perhaps like may other people these days, I am starting to see things I don't like in all politicians, the same people who claim to be helping us, yet do and say what they want, thinking we are all stupid



The day we get a prime minister standing up and saying quite clearly, that his Government is putting  new money into good quality research in Dementia, and Dementia Services  rather than wasting it on things like HS2 etc, something which just is not needed, then I and many other people will be very happy.
  
I want nothing better than new money put into dementia and good safe guards to ensure that
that money is ring fenced for dementia only



Let us have all care home staff trained officially and properly, in looking after dementia patients, to stop the abuse



All nursing staff to be trained in dementia, as they are doing at Northumbria and other Universities
 
All Doctors to be given more training in dementia



The Government said this week, that its going to prosecute any one in care homes and hospitals, who abuse anyone with dementia etc, then put them in prison.
  
Lets be brutally honest, if we prsosecute those who abuse dementia patients, as have heard over the last few years, the time will come when it will all stop, but for the wrong reasons.

Not because its not happening, but because it will never get out into the press, because as we all know,  there will be a mass cover up.



Lets have good quality meaningful reviews, with safefguards and regulations which mean something, otherwise we will never change things for the best,

Its time to move Dementia forward with positive headlines which mean something, and not political feel good headlines.
        


   

Dementia and chest infections

I had never realised until recently just how much a chest infection changes a person with a neurological illness like dementia.



I had a bad one three weeks ago and realised that I was going up the wall, and was doing and saying things that hurt my wife, or at least I did after I did it.



I honestly do not know how this happens but it is hurtful to everyone around, at the time, as we do things which are totally out of character.

I have been diagnosed as having another yesterday, so that must be about the sixth one this year, and its getting me down.



I thought I was alright in the morning apart from being chesty, having a horrendous headache and coughing up loads of rubbish. We then we went out shopping where I went dizzy and ended up hanging on to the shop shelves for security


After a while my wife rang the doctors to get an appointment before they closed for the weekend.

But these people seem to have vastly different ideas, each time you see the doctor that is in the clinic when we go, and this does not help anyone.



Fine I was not being rude yesterday, but if it had started over the weekend my wife would have been stuck.



This is all made worse by the problem that I have had asthma ever since my working days, and I suppose this does not help.



I saw one doctor a few years ago, when I was ill, and had breathing problems, and he was the rudest person I have ever met.



He turned and said, what do you expect with that chest of yours. He told me that there was no infection possibly just a cold, something I knew it was not. But I was asked to do a sputum test just to make sure he was right.



 A few days later we had a telephone call to say that the results had come back, and  I had to go to the doctors for a prescription which made me wonder just what was going on.

I went to the chemists where I was told that that these were very strong antibiotics if there was no problem.



So I never saw that doctor ever again, and will never see he home while I am still about to speak.

That was the second occurrence with him and it will be the last. 



I know that my lungs have been the cause of many problems over the years, from a collapsed lung while I was working to viral pneumonia a few years ago, and after each examination I am told that I have a lot of crackling.


 My wife remembers a few years ago, it being stated that if this carries on I would need a lung examination , something I don't really fancy, but if it sorts it out fine, but why was this not on the records. It seems that they only write certain things on medical records, so if they are not passing items like this on is it any wonder we have problems.


My mother used to say that I had a horrible smokers type cough from the age of three, so my chest must have been bad all those years ago.
 
But just how many people with dementia etc, worked in construction and engineering industries using dangerous products and find they are now paying for it, as well as having dementia



I have worked in many places where asbestos was used, cut and also sprayed on ceilings, and all we had for protection was a cloth mask.



I also worked on many other products which were dangerous, but I guess I never gave it much thought as the information was not there at the time, or it was hidden from us. But these days we see all of this information everywhere we look.



So I guess that I am not the only one who has problems with people like this, but it does not help our loved ones who have to pick the pieces up at the end of the day.

Edinburgh to be dementia friendly

Capital in bid to help people with dementia

 

EDINBURGH City Council has approved a plan which city leaders hope will help the capital become a dementia-friendly city.

EDINBURGH City Council has approved a plan which city leaders hope will help the capital become a dementia-friendly city.

There are currently around 7142 people with dementia in Edinburgh and it is expected that this number will increase by 62% over the next 20 years.


A report to the council's health, social care and housing committee outlines the need to increase awareness of the issues that affect people with dementia and to challenge some of the stigmas attached to the condition.

As part of efforts to become dementia-friendly the council is to talk to retailers, public transport firms and health and voluntary bodies to provide advice about how to help people with the condition.

Shops, for example, will be given advice and information about how to help customers who become confused or agitated, who struggle to recognise bank notes or to explain what they need.

The dementia-friendly communities scheme is backed by Alzheimers Scotland.

 

After this we need to see more dementia friendly towns and city's around the UK, including I hope County Durham which seems to be dragging its feet. It seems a great pity that places like Stockton is well on their way to becoming dementia friendly, yet Durham is well behind.  

New research into Dementia with Lewy Bodies

A research team at the University of Bath has found clues to treating patients with dementia and Parkinson’s.



Work by the team has identified a possible target to reduce the levels of a protein called alpha-synuclein, which is linked to both Parkinson’s disease and dementia with Lewy bodies.




Dementia with Lewy bodies is a type of dementia thought to affect more than 100,000 people in the UK, with symptoms including memory loss, fluctuations in attention and alertness, hallucinations, sleep disturbances and movement problems.



Research has already linked changes in the brain in people with dementia with Lewy bodies to those happening in the brain in Parkinson’s disease.



Now the team at the University of Bath has found another common link between the two - a protein called alpha-synuclein.



Professor David Brown from the department of Biology and Biochemistry said: “We know that alpha-synuclein forms abnormal clumps in the brain in dementia with Lewy bodies and in Parkinson’s disease.



“It is thought that one reason for the distinct pattern of symptoms in the two diseases is due to the different parts of the brain affected by these clumps.



“It had been suggested that a related protein, called beta-synuclein, may act to keep alpha-synuclein in check and so we set out to see whether this mechanism could be a target for new treatments.”
Researchers are now looking at the proteins in more detail to see if they can be used to design new treatments.



The work is funded by Alzheimer’s Research UK.



Alzheimer’s head of research Dr Simon Ridley said: “While these experiments are still at an early phase in cells in the laboratory, they reveal an important mechanism to take forward for further investigation.



“Identifying common pathways involved in multiple diseases, such as alpha-synuclein in dementia with Lewy bodies and Parkinson’s disease, has the potential to benefit many people.
“We are pleased to have funded this important work, especially in a climate where funding for dementia research is in such short supply.”


 

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I have trialled this and it was brilliant, well worth the effort.

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Living with dementia

As some one living with dementia, I have realised that life is an up hill struggle at times.

 

When I was first diagnosed, I did not think it possible to do so much and have so much fun, after what to many is the diagnosis from hell.

 

But I guess I was stubborn enough to fight it, when my wife and daughter said, that they were not going to let my give in to the illness.

 

To many people this diagnosis gives you a  label, and from then on you feel pidgeon holed, but its up to the person with the illness, and then family to fight all the way if they can, and if the person who has the illness is fit and young enough to do it.

 

There are many charities and organisation's today, where people with dementia can go for support and help, although many don't offer the type if practical suport that they used to give,

 

However by spending time with someone on line it is possible ti find support of line kind or another,

I have enjoyed a few extra years doing things I would never have thought posssible after the diagnosis, and now I realise that things are catching up slowly, and perhaps its time to ease right off,  as I am getting tired, and my concentration is no longer what it was.

 

But I have proved that anything is possible when you are diagnosed early enough and get the support medically and from other sources,  so I would recommend everyone who can do it,  to go for it and fight all the way.

 

I am not ready to give in yet, but will take life a lot easier,  and spend more time with my family while I can still enjoy their company.

 

I have had the extra pleasure of meeting many new friends over the years, and will look back on this with pride. I have also watched the film about  "Walking with the Wounded" about how injured service people, walked to the North Pole  with false arms and legs, and that proves to me that anything is possible if you really try
The
So never allow yourself to give in, show what its possible to do and enjoy yourself, the world is your oyster. 

Call for national dementia database

I read this today and was shocked that the police want a data base of people with dementia, and I started to wonder why they really need this.

 

I know that many of us have said publicly that as people with dementia, we would gladly carry gps devices, which could help, if we got lost or in trouble, but is this a step too far.

 

 It is my belief that the police are stretched to the limit now, and are missing out on many cases of crime, simply because they don't have the officers on the ground to deal with it. So who is going to deal with this.  

 

While I agree that there should be a data base of people with dementia, so that unpaid bills etc,  are picked up and noted, and they can be looked at to see if the person is alright or in need of medical treatment.

 

I do feel that this would be better dealt with by the local councils and not the police.

 

Many people with dementia are terrified of anyone in uniform, and to be honest some of these police officers today frighten me, even though I am in the early stages of the illness.

 

Years ago the police uniform was tidy and easily recognisable, but these days its all changed and some to me look like thugs, and thats no disrespect for them its just their uniform.

 

So if we must have have a data base of people with dementia let the councils and social services run it, as they are better palced to know each person, and they are not going to role up in a police car to frighten people.
 

I am not anti police in any way, but if there has to be a data base, everyone should know about it, and should have the right to know whats included on it. I am simply nervous about all of these data bases being used for the wrong purposes, and others being able to buy the information up, to use for their onwn interests.

Lets have a public debate about this first, and ask those who have the illness, as they know what its like to live with dementia, not the media.
  

Related Stories

A police chief is calling for a national database holding the details of people suffering from dementia.

Sir Peter Fahy, Chief Constable of Greater Manchester, said it would help emergency services assist people who are either confused or agitated.



"It will enable the caring agencies to give a much better service when we receive a call and decide how to treat it," Sir Peter said.



The Alzheimer's Society said it could cause more problems than it solved.



It is estimated there are 800,000 people in the UK who are suffering from some form of dementia, and that figure is set to rise to more than one million over the next decade.



Many people with dementia live in the community rather than in care homes.

If the police or ambulance get a call to that particular address, they can phone that relative to immediately get some background information”

End Quote Sir Peter Fahy Chief Constable, Greater Manchester Police

Greater Manchester, one of the largest police forces in England, estimates that the equivalent of 400 of its 7,200 officers each year are deflected from traditional policing roles to deal with people who have mental health issues.

Part of that mental health workload is related to people suffering from dementia.



"It's a growing issue and sometimes it is because people suffering from dementia go missing, sometimes it's because they have fallen at home and they are confused and we need to gain access on behalf of the ambulance service," Sir Peter told BBC Radio 5 live Investigates.



"We have some people with dementia who are ringing us 30 times a day and clearly we have to take every one of those calls seriously," he added.


'Under the radar'


He said the police service needed to look at procedures which would ensure people with dementia get a better service.



"One thing I would like to see is a national database where carers and the families of elderly vulnerable people can put their contact details so if the police or ambulance get a call to that particular address, they can phone that relative and immediately get some background information," Sir Peter said.



"While some might see that as a threat to civil liberties and the state having too much information - in reality it will enable the caring agencies to give a much better service," he added.



But the Alzheimer's Society, which campaigns for improved services for people with dementia, is wary about such a scheme.



"Too many people with dementia currently go under the radar, and lose out on access to the health and social care support they need. Agencies like the police need to be able to identify people with dementia but giving them access to a national database may pose problems," George McNamara, the head of policy at the society said.



"If the police and social services were to simply share existing information more effectively, this could go a significant way towards aiding the police and enabling people with dementia to live independently in their own homes," he added.



Research by the BBC has shown that some police forces have seen an increase in incidents involving people with dementia. Around a quarter of forces across the UK - 14 - were able to provide figures, based on a trawl through their incident logs.



All the forces that responded indicated that these incidents had risen over the last two years.

Sussex Police, for example - which covers the popular retirement towns on the English south coast - saw an increase from 682 in 2010 to 1,815 in 2012.


Complex issue


People with some rarer forms of dementia can exhibit anti-social behaviour and as a result of their symptoms, may be more likely to come into contact with the police.



Angela Potter's husband was diagnosed with fronto-temporal dementia when he was 50. This form of dementia affects people's ability to reason and communicate.



"His character changed and just became less inhibited. He started to shoplift. He saw things that he wanted and he just took them, he didn't understand that you have to pay. He was banned from many shops," she said.



Fortunately her local community police officer in north London was sympathetic.



"He met my husband and understood the situation. He was willing to listen and try and understand and I called him any time I needed to, he was always very helpful," she said.



In Greater Manchester, Sir Peter said dealing with people with dementia and mental health issues can deflect officers from their more traditional roles.



"Sometimes it feels like crime is an ancillary activity for us - and to some extent crime is relatively straightforward. We know what to do with a burglary or a burglar.



"But often you are dealing with a complex issue involving a vulnerable person and you are struggling to get help from a medical person, and that can be a very difficult issue to solve," he added.



"An officer can be tied up for five, six or seven hours at a hospital waiting for a proper assessment to be made or waiting for them to be found a bed - and that clearly is a huge use of police time, it affects police morale and absolutely affects our ability to do our primary job of reducing crime."



In a statement the Department of Health said: "There are no plans to introduce a national database of dementia patients. Any decision to do so would have to be backed up by robust evidence demonstrating that it helps vulnerable people with the condition remain more independent. The choice of being included on such a database must be made by the individual and their family.



"We want to ensure that people with dementia can lead as independent lives as possible. This is why schemes such as Dementia Friends, which help to raise public awareness and understanding of the condition, are so important."