Namibian Towns Going Purple

The second town that decided to go purple was of course Swakopmund!

Here we give a big round of applause to the Village Cafe & the lovely ladies that serve here.

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Namibian Towns going Purple

A couple of towns in Namibia really went purple in September for Alzheimer’s month.

The first one we’ll look at is: Grootfontein in the north of Namibia.
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On the 12th September, Grootfontein had its yearly festival and even here they went purple with a Remember Me float!

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On the 21st September the Purple Fig Bistro in Grootfontein did their part by selling gorgeous purple cupcakes!

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Medi Health Practise of Doctor’s Malan & Botha in Grootfontein also took part in the 2015 Alzheimer’s Day.IMG-20151002-WA0008

The Ladies from the Ester Group in Grootfontein spreading the good news!

Well done Grootfontein! If you live in a Namibian town that went purple, let us know!

September is about REMEMBER ME

On Friday 4th September 2015, Namib Primary School in Swakopmund baked purple cup cakes to raise funds & awareness for Alzheimer’s Dementia Namibia.

Hein’s wife, Anette is a teacher at Namib Primary and decided to use the month of September to educate the grade 6 & 7 students about Alzheimer’s disease and dementia.

Thank you Anette for your valuable input!

Purple Cupcakes at Namib Primary School

Purple Cupcakes at Namib Primary School

Your Story: Peter & Pat Van Spyk

We often think that is is just us that struggle. Or that this only happened to us. The purpose of Your Story is to share stories from around the globe to make you realise, your situation might be unique, but you are not the only one that struggles. And what’s best – there is help!

Here is Peter & Pat’s Story:

Peter Van Spyk had Alzheimer’s for 10 years before he was diagnosed. In that time, the family business failed and his relationship with his wife Pat became very strained.

Pat and Peter describe in their own words how dementia has affected their lives.

Before the diagnosis

“It wasn’t until 1995 that I first noticed that Peter was acting strangely. I thought he wasn’t interested in his business any more. He appointed a manager and took early retirement at the age of 54. From then on, he became a different person.

“It all came to a head in 2005 when I opened a letter from the bank asking for £35,000. I read all the bank statements and paperwork from the previous five years. I realised the business, which we were relying on for our retirement, was heavily in debt. The best option was to go into voluntary liquidation. It took a long time to sell the factory and sort out our £360,000 debt. It gave me a very big shock.

“I went to see the doctor in 2005 because I was depressed and terrified about what was happening to the business. I told the doctor I didn’t know what was wrong with Peter. I said I couldn’t communicate with Peter and that he didn’t seem to understand what was happening.

“We went to Addenbrooke’s Hospital, where Peter saw a psychiatrist, and had blood tests and MRI scans. In October 2006, the Alzheimer’s was officially diagnosed. I think it was a relief for Peter.

“For me, it was a double blow because I had thought that Peter would be normal once we sorted out the money situation. I can remember hearing the diagnosis from our GP. I went incredibly still, and I don’t think I took a breath for ages. Taking it in was so hard, really. I saw no future for us because I realised how difficult it was going to be.

“We were given the drug Aricept, which made a big improvement initially, though it’s now less effective. Peter has been quite positive about his condition, but occasionally he doesn’t want to face the reality.”

Peter and Pat Van Spyk

Reading the signs

“You’d never suspect Alzheimer’s in someone so young. Peter was 61 when he was diagnosed but, looking back, I could see that he was about 50 when he started acting strangely.

“It was his lack of spatial awareness, his lack of comprehension and his slightly irresponsible attitude that made me first aware that something was seriously wrong. He started scraping the car, which we spent a fortune fixing. Also, he twice tried to cut the hedge and nearly cut his fingers off.

“He didn’t want to socialise. Conversations that involve more than two or three people are too fast for him to understand. I used to think he was being stupid. He would look at me blankly as if he didn’t know what I was saying.”

Everyday life

“Peter changes a lot. One minute he’s very worried because he’s lost sight of me, the next minute, he’s full of confidence and pushing through the crowd. He also finds dressing himself very difficult and gets the shirt buttons all mixed up.

“I might say to him, ‘Put the kettle on and let’s have a cup of tea’. He’ll say ‘yes’, but I’ll come into the kitchen and find that the kettle isn’t on because Peter hasn’t really understood the message. Or he’ll put the kettle on and forget that he’s doing it, so you have to watch him. Once I get Peter to do something, he’ll complete it, but if he doesn’t know how to start it he’ll stand there and wait.

“You have to learn to be patient. Sometimes I get angry, but I just walk away and hope for the best. I spoke to the doctor and told him that sometimes I speak very sharply to Peter.

“It’s awful because he was so full of energy, and I trusted him with everything because he had a sharp mind.

“We finally sorted our finances out last year (2007). We can stay in our house but I don’t know for how long. It has been quite traumatic for me. Peter doesn’t seem to realise our problems, but apparently that’s part of the disease.

“When you’re affected by Alzheimer’s it’s very hard for you and your family not to become depressed. I don’t have children to share the load and sometimes I feel rather low.

“Things are getting better, though. We were allocated a nurse by the NHS who is our link to the team at Addenbrooke’s Hospital. Also, an outreach person from the Alzheimer’s Society is coming to see us and assess how things might be. I keep putting off thinking about the future, and so does Peter. Obviously I’m at the beginning of a long journey. I’m just trying to be as positive as possible.”

Peter’s story

“I think it’s a terrible disease, I really do. I owe my success to Patsy. She’s really been doing good. She’s absolutely fair in everything. She gets a bit cross, so I try to keep it back.”

Peter begins to struggle with conversation. He says: “If you’ve had a good education then it’s easier to remember words… I was very lucky to get Aricept. That made a difference. Pat said I changed immediately, but things have gone down again.”

When asked what advice he’d give someone diagnosed with Alzheimer’s, Peter encourages them to be realistic and accept their limitations. “Some people complain that they can’t have their car… when I was diagnosed I realised the bad things I was doing while driving. You have to surrender your licence.”

About joining the Alzheimer’s Society, he says, “That’s something I’d suggest to anybody. They really should get in touch with them.”

Project: Alzheimer’s South Africa

Today, we look at neighbouring South Africa’s Alzheimer’s South Africa.

Alzheimer’s SA is dedicated to providing support for families and individuals and strives to advocate on their behalf, to improve the lot of people with Alzheimer’s/dementia and their carers.

Alzheimer’s SA was founded in 1985 and is a non-profit organisation managed by a national executive council. It is the South African representative of Alzheimer’s Disease International and is dedicated to improving the quality of life of people with dementia and those affected by it. For Alzheimer’s associations in other countries, please see http://www.alz.co.uk/help/associations.html.

For information you are unable to find on this website, please email info@alzheimers.org.za or phone the national helpline, which will cost you the same as a local call regardless of where you are in South Africa: 0860 102 681.

The counselors on duty are volunteers (weekday mornings, after 09h00) can lend an ear, post you information and newsletters or provide contact information of specialists, carers, homes, therapists etc.

Alzheimer’s South Africa is very active in the community and has a whole list of upcoming events. The first being Casual Day on the 4th September 2015. If you are in South Africa – why not support them?

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Elsewhere in the world? Donate!

The Science: News

The Good News

UND to receive $284,000 for Alzheimer’s research
By Herald Staff Report on Aug 10, 2015 at 12:00 p.m.

Two U.S. senators announced Monday UND will be the recipient of nearly $284,000 in federal funds for Alzheimer’s disease research.

The funds will be used for research focusing on palmitate, a chemical common in palm oil and other foods, and how diets high in the chemical increase the risk of developing Alzheimer’s disease.

 

The Science: Solanezumab

The following, rather interesting article, appeared on Alzheimer’s Society’s page.

n 22 July 2015, new trial results were announced for a drug for Alzheimer’s disease. Here, Research Communications Officer Dr Ian Le Guillou, who was in the room when the results were announced, looks back on the reaction to the news. 

Last week dementia research hit the news in a big way as the largest dementia conference in the world was held in Washington DC. Capturing a large number of those headlines was the results of a clinical trial solanezumab, a drug developed by the pharmaceutical company Lilly, which showed signs of being able to treat Alzheimer’s disease. This led to a lot of media coverage with one front page headline claiming that it could ‘halt Alzheimer’s’.

There has now been a period of reflection on the findings and data presented. A GP writing in the BMJ criticised the comments from various sources describing the drug as a breakthrough and highlighted that the improvement in scores on the cognitive tests are so small that they may mean nothing at all for quality of life. Businessjournalists were also quick to note that the results were not quite as good as hoped, with the share price for Lilly dropping by three per cent after the announcement.

Part of the reason for the different interpretations of the results is the unusual trial design used in the study. This trial, known as a delayed start study, is explained in our background article but in short this was an extension to earlier trials that failed to show the drug had benefits in people with mild-to-moderate Alzheimer’s disease. The aim of this extension was to demonstrate that the drug could target the root cause of disease, the accumulation of amyloid protein in the brain, rather than only treating the symptoms as current treatments do.

This type of trial design has never been successfully used to get regulatory approval for a drug. This means that everyone is unsure of how this type of trial will be considered by regulators, such as the FDAor EMA, in the future. In a 90-minute session about the results at the conference, a panel discussed the implications for this trial design and what regulators would like to see in the evidence that is presented to them. There were cautions on the lack of an agreed threshold to determine if there had been an effect and that the complicated nature of the trial means that it could be more likely to go wrong or miss important treatment effects.

The results presented last week are not enough to approve the drug for patients. This is why Lilly are now running another trial of this drug called EXPEDITION 3 which only includes people with mild Alzheimer’s with the same delayed start design. The results from this trial are expected to be announced in 2017 and that is when we will have solid data.

The data does give us a glimpse of the potential for this drug. One important result is that people can take solanezumab for three and a half years safely, an issue that has plagued this class of drugs in previous trials. Tests for cognition showed a maintained difference between those people who had been taking the drug for three and a half years against those who had only been receiving it for the past two years.

This wouldn’t have been seen if the drug was only affecting symptoms, which suggests that the drug actually targets the disease process. However, people who took the drug still declined in memory and thinking tests, so expectations of what this drug can do should be tempered. It appears that the drug slows the progression of the disease but the trial was not designed to test for the size of the effect on symptoms, so the conclusions we can draw are limited. While the headline figures from the media said that the drug could reduce the decline in cognition by 34 per cent, this wasn’t actually shown in this study and comes from a later analysis of the original failed trials which has not been published. A drug that actually slows the progress of the disease would be a significant step as there is nothing else that can currently do this. After so many failures in trials in the last few years this fuels hope that something can be done about Alzheimer’s disease. That said, it is important to bear in mind that ‘we shouldn’t take our eyes off the prize, and the prize is large treatment effects’ as one speaker from the FDA said.

The results presented last week aren’t something to get too excited about if you’re looking to get your hands on a breakthrough drug. Even if everything goes to plan it will still be years before it would become available widely to people with Alzheimer’s. The results are significant because it gives Lilly the confidence to continue with their new solanezumab trial and it gives confidence to other researchers andcompanies that this type of drug could work for targeting the disease.

    

Your Story: Richard Taylor

Today i look into personal accounts of living with dementia. whether that is the viewpoint of a person with dementia or that of a caregiver, we look into it from all angles.

Browsing and surfing the net, the name of Richard Taylor kept popping up. Reading his story, I decided that today was as good day as any to introduce his story. It is with incredible sadness, that I also learned that he very recently passed away. But Richard, your legacy lives on and I will still broadcast your story.

Richard Taylor

Richard’s Story goes like this:

Ten years ago, a noted neurologist told Richard Taylor, “You have dementia, probably of the Alzheimer’s type.”

Six years ago, he discovered that thinking, speaking, and writing about what it was like for him to live with this condition had quite unexpectedly brought him a new sense of purpose to his life.

Today, he speaks and writes of his experiences living with Alzheimer’s from the inside out for two important reasons. First, in the hopes that his presentation will convince folks not living with dementia that folks who are living with dementia are and will always be whole and complete human beings. Still possessing all the needs and wants everyone who does not have dementia possesses. And second, he hopes that his witness will encourage others living with the disabilities associated with dementia to stand up and speak out. After all, if folks living with the symptoms do not speak out, how will anyone really know what it is like live with dementia?

He has literally traveled around the world, many times – standing up and speaking out; meeting with kindred spirits and supporting care partners: sharing his belief that people living with dementia are not fading away, and the diagnosis of probable Alzheimer’s does not signal the start of the long goodbye. He sees everyone as being neither half-empty, nor half-full. It is the wrong the question to ask, the wrong way to look at folks, especially those folks living with the symptoms of dementia.

He promotes what he terms ‘humanizing dementia care’. A transactional approach to caregiving that humanizes the giver and the receiver; both at the same time.

His words are poignant, sometimes blunt, and occasionally reflective of the humor attached even to this unwanted and unpleasant human condition. He is engaged in creating purpose, joy, and love in his own life. And he seeks to convince his listeners, especially those living with cognitive disabilities, that the quality of any one life is determined from the inside out.

This is his virtual home. For the past six years, he has been collecting his thoughts on paper and they are now on the various pages of this web site. You may contact him directly at richardtaylorphd@gmail or leave a question here and he will answer it – not always as fast as you may rightfully expect, but rest assured he will answer it. Thanks for taking the time to see if his experiences, reactions, feelings are of any benefit to you, or those you love.

The Big Idea: Everyone is a full and complete human being entitled to be treated as such regardless of a diagnosis of  some form of Dementia or age.

Living with a cognitive disease wrecking havoc with his brain; a disease which is incurable and ends in a death stripped of most of the elements of human dignity; a disease which disrupts and sometimes destroys lifelong relationships, attacks self esteem, and in many cases fundamentally changes a person into someone no one knows – is a life familiar to Richard Taylor. He has for the past five years lived with the diagnosis of dementia, probably of the Alzheimer’s type. Five million + Americans also walk with Richard down this road less traveled. An additional five million Americans struggle with other forms of Dementia. Within the next twenty years, more than thirty five million Americans will be wearing the same shoes Richard wears today.

Refusing to let others treat or view him as an incomplete or damaged person, Richard’s first hand experience, his keen mind, and his ability to turn himself inside out and write down and express his deepest fears and feelings, has led him to his current status as one of the leaders of thought, action, and support for a new respect and approach to elders and to individuals who are living with the one of the 50+ forms of dementia.

He was the first to become sensitize to the relationship between how we treat older people and how we treat people with dementia – as damaged goods, incomplete human beings,  with little or nothing to contribute to family or society. At least that is how they were viewed in many quarters before Richard Taylor picked up his pen, and opened his mouth, and started to collect email addresses.

Using himself as the source, he began to write and speak about the disabling ways well-intended people treated their loved ones as they too cope with age and/or dementia. Always speaking from his own life experiences this risk taker exposes himself, his fears, and his experiences every time he write and speaks. His innovative approaches to reabling people who have been culturally conditioned to be less than they can be are now the gold standards for professions who care for older Americans.

Older people and those living with dementia are still repositorites of the life and work experience of America. Their wisdom, and spirt should not be ignored or lost simply because they are old or sometimes confused. Just because people are not exacly like us doesn’t mean they are defective and should be stored in wharehouses with names like tranquil gardens, and memory lane.

Richard’s creativity, drive, intellect and most importantly experience confronted the disease and formed a leader who dedicates his remaining consciousness toward breaking down the stigmas of dementia and age, and giving others the inspiration, knowledge, and comradery to “Stand up and Speak out”. He is the activist who because of his own life circumstances became the leader of the new awareness and recognition of the new faces of Alzheimer’s, the rentless and powerfully persuasive town crier of a new empowering way to relate to people in theat the various stages of the disease, and the elders of our society.

To learn more about him and his legacy, please visit his website: