Dementia Awareness Week 2015 – share to show your support for the Alzheimer’s community #DoSomethingNew

Dementia Awareness Week

Dementia Awareness Week

Tomorrow (Sunday 18th May 2015) sees the first day of Dementia Awareness Week.

PatientTalk.Org are delighted to once again throw our digital wight behind this important event!  For a great overview of dementia please check out our interview with Dr Nori Graham who is Medical Director of Red and Yellow Care, Vice President of Alzheimer’s Disease International and The Alzheimer’s Society.

The Alzheimer’s Society  have developed five key informational points that they wish to promote this Dementia Awareness Week.

Dementia is not a natural part of ageing

Dementia is more common among older people , and some of us do become more forgetful as we get older, during times of stress or, in fact, illness. But dementia is a very  different sort of forgetfulness. Your memory loss will be very noticeable, and may be accompanied by mood changes and confusion/brain fog. It’s important to ask your doctor to check out any unusual symptoms as these can sometimes be treated quite easily.


Dementia is caused by diseases of the brain

Dementia is the name for a Syndrome  (collection of symptoms)  that includes memory loss, mood changes/brain fog and problems with communication and rational thought. These symptoms are brought about by a number of diseases that affect the brain. The most common of these is Alzheimer’s disease, which causes the brain cells to die. Other types of dementia include vascular dementia and Pick’s disease.

It’s not just about losing your memory

People often think of dementia as a form of memory loss. And that is often true in the first instance. But it’s more than that – it can also affect the way people think, speak, perceive things, feel and behave. Dementia makes it harder to communicate and do everyday things, but there is a lot that can be done to help.

It’s possible to live well with dementia

Many people with dementia continue to drive, socialise and hold down satisfying jobs. Even as dementia progresses, many people lead active, healthy lives, continue their hobbies, and enjoy loving friendships and relationships. Of course dementia does make it harder to do certain things, but  it is possible for someone with dementia to get the very best out of life.

There’s more to a person than the dementia

When someone is diagnosed, their plans for the future might change and they may need more help and support to keep doing the things they enjoy – but dementia doesn’t change who they are.  Where there is life there is hope.

Britain way behind the rest of Europe in utilising life-saving stem cell treatments – Find out about a new initiative called Precious Cells


Stem cell therapy

Stem cell therapy

It’s one of the most exciting fields of scientific research today, yet more than a third of the country say they don’t really know anything about it.

We have covered this area a number of times at PatientTalk.Org.

New treatments for Alzheimer’s, and Parkinson’s, or methods of repairing heart muscle, are vital in an aging society. Yet new research out today shows stem cell research, which has already made great progress in these fields and others, remains widely misunderstood and under-utilised.

Research  shows that 83% of parents with children under ten feel well enough informed about the science of regenerative medicine to make decisions about their or their children’s stem cells. So is it that a safe and common source of stem cells – umbilical blood cord – is massively under-utilised?  The first successful blood cord transplant was performed in 1988 and the method is now a treatment for many medical conditions.

Collecting umbilical cord blood and tissue is a fast way to build up a representative cord blood registry, but the combination of confusion amongst parents to be, and a lack of facilities and trained staff, mean that most of this potentially life-saving material will simply be destroyed.  The new research shows that only 28% of parents of young children have even been informed about the option of stem cell storage.


A new partnership between the charity Precious Cells Miracle and the NHS Trust Croydon will start to address this imbalance. PCM will provide NHS hospitals with the staff, technology and specialised equipment necessary to collect cord blood units from families willing to donate them. Patients can choose to donate their cord blood stem cells to build up the Government’s public stem cell bank, effectively donating to any person in need, or they can privately store them for their own family. Increasing awareness of the potential of stem cell research and clearing up confusion around the subject is expected to lead to much higher acceptance of regenerative medicine.

PatientTalk.Org interviewed Dr. Husein K. Salem, BSc PhD, Founder and CEO of Precious Cells International and Dr. Salmaan Dalvi, PhD, Head of Implementation and Governance at Precious Cells Miracle: Community Blood Cord Registry to find out more about stem cell therapy!

PATIENTTALK.ORG What actually is stem cell therapy?

DR. HUSEIN  SALEM Stem Cell therapy is the new form of medicine that were seeing coming through now it’s a medicine that’s actually been practised for over 60 years you’ve probably heard of bone marrow transplants.

PATIENTTALK.ORG Yes.

DR. HUSEIN  SALEM Yeah so it’s, bone marrow transplant is now called stem cell transplants and the idea of stem cell therapy is replacing cells in the body in specific organs depending on the type of disease that your treating with new cells that don’t have the problem that particular cells do have so if you  take the example of Leukaemia, you’ve got specific red blood cells that have cancer, so you’ll remove the cancerous cells replace them with stem cells and then the stem cells will then become healthy functional red blood cells that don’t have the cancer.

PATIENTTALK.ORG and what kind of conditions is it suitable for?

DR. HUSEIN  SALEM great question, I’m going to use the word theoretically, but theoretically stem cell therapy can be used to treat any disease, any disease that you think of because ultimately disease is a breakdown of cells in specific organs whether were talking about motor neuron disease,  Alzheimer’s, Parkinson’s, Leukaemia , diabetes  and if you think that within specific organs let’s take diabetes for example where within the pancreas the cells that produce insulin are no longer able to do that stem cell therapy becomes very exciting because you can replace the specific cells not the entire organ, but the specific cells within that organ that are no longer producing insulin with stem cells once those stem cells are within that organ they’ll then start to function as healthy cells and replace the ones that have been damaged and in the case of diabetes start producing insulin.

PATIENTTALK.ORG And why’s it considered an ethical mind field in some quarters?

DR. HUSEIN  SALEM Again a really great question one of the reason why Precious Cells are really supporting Stem Cell Awareness Day and it’s to push the fact that a lot of people are unaware that there’s are two types of stem cell research that goes on. There’s embryonic stem cell research and that’s actually the research that is clouded in moral ethical debates, because it takes stem cells from embryonic sources. Whereas there’s another whole form of stem cell therapy which is called adult stem cell therapy its taking stem cells from adults, from umbilical cord blood one of the areas that special cells group specialise in and that is completely endorsed and back by every major religion in the world by every major government in the world by every major scientific community, medical community and the Labe public.

PATIENTTALK.ORG And what are their cost implications?

DR. HUSEIN  SALEMI Another great question, obviously at the moment were talking about mostly clinical trials so there is still a lot of work to be done in terms of developing the actual treatments for a lot of these diseases, but what we do think, and what a lot of white papers are showing is that stem cell therapy will cost a fraction of what current treatments cost. Again this is one of the big reasons why major governments around the world are spending significant amounts of investment into developing this type of therapy because it’s going to be from an economic perspective a lot more cost effective for health care infrastructure.

PATIENTTALK.ORG What is provision like in the UK? Is it poor, is it good? Would you blame the structure of the NHS?

DR. HUSEIN  SALEM I’m going to pass you over to my colleague Dr Dalvi who’s head of implementation and governors, he’s got a great incite having worked within the NHS quad bled infrastructure for a number of years.

Doctor Salmaan Dalvi -The NHS structure is set up in such a way that the NHS has been funded for six hospitals in and around the London area to collect 50 thousand stem cell units from cord blood and supply the whole nation. That is not feasible when you’ve got mothers all over the country and when the NHS stores its cord blood it is then processed in Bristol, collected in and around London, processed in Bristol, stored in Bristol. You expect a hymnologist to be able to use it, when you have got nationwide, you’ve got 90 hundred hospitals, or maternity hospitals of good quality with a lot of diversity, of patients of a lot of different ethnicities to be able to give you good quality stem cells. For a country like the United Kingdom, when you’ve got roughly 70,000 birds why haven’t we collected the 50,000 that were targeted by the NHS itself, so that is a question in its self.

PATIENTTALK.ORG Would you advise travelling abroad for treatment?

DR. HUSEIN  SALEM No, it’s a case of various types of therapy developing the fastest and what we’ve found is countries where regulations are not as stringent as they are in places like the UK for example stem cell therapy has developed a lot faster for example in the far east, that said lack of regulation and control does mean that it also suffers from having a number of rogue treatment centres, and it’s very difficult for the public to really decipher between a credible centre and a rogue centres that may not actually be injecting stem cells from humans, could be injecting stem cells these have been reported cases of injecting animal stem cells into patients and charging £25,000-£50,000 pounds per procedure. So again it’s a case of the UK needing to invest more funding into stem cell therapies here to prevent reverse medical tourism, we’ve always been the centre of the world in terms of innovation, technology. With more investment here we wouldn’t need people to travel abroad for stem cell therapy.

Doctor Salmaan Dalvi -Can I add to that? What precious cells miracle is about is to collect Precious Cells as in cord blood stem cells from the UK for the use in the UK and abroad if we can give it to someone outside the UK that’s fine, but for now it is UK cord blood cells to be used in the United Kingdom for the United Kingdom therapies where we need it. There’s an urgent need for stem cells and we are not providing and we are not catered for that.

PATIENTTALK.ORG Could you tell us more about how these stem cell banks work?

DR. HUSEIN  SALEM Yes, sure. The technology behind bio banking is again a very well established it evolved from the IVF technology which is 60 years old in itself. It takes cord blood stem cells from the umbilical cord after the babies been born again this after the cord has been cut from the baby and the placenta’s been delivered so there’s absolutely 0 harm to the mum or the baby. It’s really important, there’s a lack of awareness in that people are worried it’s going to harm the mum or the baby that there is 0 risks to either. We have a team of trained specialists, called phlebotomists. There able to collect the cord blood from the cord, the blood itself will typically get anywhere between a 100-150 mills of blood, it then goes through a very technical scientific procedure that separates the red blood cells, the plasma and the stem cells that are in the cord blood. Then going through cryogenic technology which is freezing, it’s frozen in a very controlled manner, 1 degrees per minute it drops down. It’s finally put into liquid nitrogen, which is stored at minus 196 degrees. One of the questions a lot of people ask is how long can stem cells be stored for? The research around the world shows that stem cells can be stored indefinitely, so for over a hundred years for example. Then they’re kept in a database that Haematologists and transplant centres around the world can access, and if they have a patient who needs a specific tissue type match for the Leukaemia or thalassemia for example then they’re able to access that, that sample will be taken from the cryogenic banks that we hold, and shipped immediately to the physician who will then be able to perform the transplant. Part of marking stem cell awareness day is that were looking and were establishing more and more centres around the country precious cells group is leading this through precious cells miracle alarm, and were looking for more and more trust to really get on board and to contact us they can find out more information about how both the public, so patients themselves can get involved and also healthcare professionals who need to understand more education so they can educate their parents. They can go onto our website http://www.preciouscellsmiracle.com .

Could a memory wall and a memory box help people with dementia? Find out about the simple but brilliant idea here.


People with dementia

People with dementia

A UK hospital has just announced that it has opened what it calls a “memory wall ” as a way of helping people with dementia such as Alzheimer’s.

On the face of it it seems a brilliant idea and I would be very interested in finding out what our readers thought about the memory wall! You may also find this interview with Dr Nori Graham who is Medical Director of Red and Yellow Care, Vice President of Alzheimer’s Disease International and The Alzheimer’s Society a useful introduction to the whole area of dementia and Alzheimer’s.

The wall contains a selection of old photographs which have been donated by the Leicester Mercury is at Glenfield Hospital’s ward 33a. The pictures are on display for patients’ enjoyment as they move around the cardiology ward.

Vanessa Struthers, who is ward clerk for Leicester’s Hospitals for 23 years, came up with the idea. She said: “It started off with old photos of Leicestershire but as the collection has grown, we’ve included iconic photos from key historical events, such as the Queen’s visit to Leicester.”


Struthers worked with people on the ward to create the display, which aims to help those admitted to the ward. She commented : “We thought it was important that our patients chose the pictures, so the wall is made up of their memories. It’s really fascinating to see all these wonderful pictures on display in one single place.”

Thanks to a kind donation from the family of a former patient, the team at Glenfield have also been able to purchase a memory box. It contains various items from days gone by, which are recognisable through touch or smell, such as carbolic soap, moth balls and a dolly peg.

Using memory boxes with elderly patients has been shown to help stimulate and focus their minds as they have very vivid memories of their past, but can struggle to retain short term memories due to Alzheimer’s or dementia.

Struthers said : “We have had a fantastic response to both the memory wall and the box. We are so grateful for the donations which have enabled us to provide these for our patients.”

World Alzheimer’s Month 2014 – Dementia: Can we reduce the risk?


World Alzheimer’s Month 2014 - Dementia: Can we reduce the risk?

World Alzheimer’s Month 2014 – Dementia: Can we reduce the risk?

Today sees the start of World Alzheimer’s Month 2014. This years theme is “Dementia: Can we reduce the risk?”

Please feel free to use the picture above as you Facebook cover for the month.

Alzheimer’s Disease International  have produced two very useful pieces of information which we have shared below.

The first looks at the social impact of dementia while the second introduces us to the early signs and symptoms of dementia.  Please so feel free to share far and wide!

The Global Impact of Dementia

What is dementia?

Dementia is a progressive, degenerative brain syndrome that affects memory, thinking, behaviour and emotion. Dementia knows no social, economic, ethnic or geographical boundaries and affects people throughout the world. As dementia progresses individuals affected need care with all aspects of daily life, worldwide families mostly provide this care.


Alzheimer’s disease is the most common cause of dementia and accounts for 50-60% of all cases and is caused by abnormal brain tissue changes.

Who does it affect?

International studies make it clear that dementia occurs in every country of the world. Dementia affects 1 in 20 people over the age of 65 and 1 in 5 over the age of 80. Worldwide there are an estimated 44 million people with dementia. By 2050 the number will rise to 135 million.

Where do people with dementia live?

For at least the last 15 years, the majority of people with dementia worldwide have been living in developing regions of the world. They account already for over 62% of all cases; by 2050 this proportion will have risen to 71%.

Care arrangements

Research has shown that most people with dementia live in their own homes and are cared for by a female caregiver usually a spouse or daughter and that caring is associated with substantial psychological and financial strain (Int J Geriatric Psychiatry 2004 19 170-177). In contrast to developed countries, more than a quarter of people with dementia in developing countries live in a multigenerational household with their children and grandchildren.

Cost of care

Caregivers have to cut back on paid work or stop work altogether, informal care is often supplemented by formal paid care and people with dementia are relatively heavy consumers of health services. The total estimated worldwide costs of dementia are US$604 billion in 2010, according to ADI’s World Alzheimer Report

What is needed?

1. Recognition of the early symptoms of dementia

Dementia is surrounded by stigma and myth. Many people see the early symptoms of dementia as a normal consequence of ageing and therefore do not come forward for the help and support that is available. Recognising the symptoms of dementia is the first step towards receiving a diagnosis. A diagnosis can help to reduce the anxiety of people with dementia and their family, allow a greater chance to benefit from existing treatments, access resources and information and provide more time to plan for the future.

Ten early symptoms of dementia:

  1. Memory loss
  2. Difficulty in performing everyday tasks
  3. Problems with language
  4. Disorientation to time and place
  5. Poor or decreased judgment
  6. Problems with keeping track of things
  7. Misplacing things
  8. Changes in mood or behaviour
  9. Changes in personality
  10. Loss of initiative

2. Cost effective interventions

These are needed worldwide to provide support for people with dementia and their families to maintain and improve quality of life. Research has shown that there are ways to reduce the stresses of caring:

  • Information and education empowers people to understand what is happening to them and their loved one and how to cope better.
  • Support groups provide an opportunity to share experiences and feelings.
  • Professional counselling has been shown to be effective in improving morale and decreasing feelings of stress.
  • A break from caring is essential, respite can be achieved informally by arranging for the person with dementia to stay with relatives or friends or formally through services such as day care and short stays in residential units.
  • Practical help in the home, financial support and a key person to turn to are also useful.”

Alzheimer’s disease awareness with a garden Chelsea Flower Show – Genius idea from the Alzheimer’s Society


Michael Parkinson and Fiona Phillips

Michael Parkinson and Fiona Phillips

Award-winning garden designer Adam Frost designed The Homebase Garden – ‘Time to Reflect’ in partnership with Alzheimer’s Society at this year’s RHS Chelsea Flower Show and welcomed Sir Michael Parkinson and the charity’s ambassadors, Fiona Phillips and Arlene Phillips to the launch of the garden at the start of this year’s show.

The garden has been awarded a Gold RHS Medal increasing Adam’s already impressive RHS Medal tally to six.

The garden was designed to celebrate memories and was hundreds of hours in the making with initial planning starting in July last year. Throughout the process, and to assist on the final stages of the build, Adam was joined by the Homebase Garden Academy students. The 11 students helped him to make his design a reality by putting into practice the skills learnt from Adam since joining the Academy last November.

The garden is home to over 4,000 plants including Foxgloves, Geraniums, Iris and Epimediums. As you move through the garden, the planting graduates from cool shade-loving woodland plants around the arbour into sun-loving yellow, white and blue plants reminiscent of English Springtime. Carved timber seats inspired by a seed pod are also located throughout the garden – providing the opportunity for people to sit and reflect in the colourful surroundings.

As celebrities descend on the show to marvel at the gardens we caught up with Fiona Phillips and Sir Michael Parkinson to hear what they thought about Adam’s Gold Medal winning creation for this year’s RHS Chelsea Flower Show. Fiona talks about the role gardens can play for people living with dementia.