Spring and Alzheimer’s Month

Here in the southern hemisphere, we celebrate spring day on on the 1st September. Of course, it is also the start of Alzheimer’s Month all over the world.

To celebrate, the driving force behind Alzheimer’s Dementia Namibia went purple today.

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But he is not the only one who went purple – the caregivers and the “patients” at our new location in Swakopmund also celebrated the day.

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Science: The Benefits of Cutting out Sugar

3D Living Nutrition Looks at the Benefits of Cutting Sugar from your Diet…. and what a surprise!

We’ve been told for YEARS that fat was the biggest enemy of a healthy heart, but that’s just not so. Simply reducing your intake of sugar, particularly added sugars such as those found in processed foods, will benefit your heart health in several ways:

You will reduce your risk of heart attack according to a recent study. Healthy fats, even saturated fats like pasture butter, grass fed beef and coconut oil and eggs don’t raise “bad” cholesterol, sugar does! If that wasn’t enough to convince you, sugar, not salt, raises blood pressure.

Reducing sugar intake will help keep your brain healthy as well. A diet high in added sugar reduces the production of a chemical known as brain-derived neurotrophic factor (BDNF), which helps the brain form new memories and remember the past. According to recent research published in the journal Neurology, sugar and other carbohydrates can disrupt your brain function even if you’re not diabetic or have any signs of dementia. Excessive, chronic sugar intake is also associated with increased risk of depression.

Regardless of your age, if you want clear, beautiful healthy skin, limiting sugar is definitely on the short list. Too much sugar and dairy aggravates acne and also causes the formation of AGES, where sugar attaches to protein and damages collagen and elastin, which results in sagging, wrinkled skin.

A common and dangerous condition known as fatty liver disease is also aggravated by too much sugar. And fatty liver disease increases your risk of developing diabetes and certain cancers. By the way, cancer’s fuel of choice is also sugar.

Are you convinced, yet, of the importance of limiting your sugar consumption?

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Your Story: A Day in the Life of a Dementia Navigator

This is not our usual kind of story that we share, but rather a personal story from a very different viewpoint. I hope you enjoy / find this as interesting.

A Day in the Life of a Dementia Navigator

My name is Sue Acton and I am a Dementia Navigator working in North Warwickshire.

It’s 9am and I’m heading off to my first client visit of the day. My patch is quite large and a bit of a distance from my home – I cover all of North Warwickshire, including Nuneaton, but live in Leamington Spa – and I need to be in Atherstone for 10am. My briefcase is loaded up with client notes and lots of brochures and factsheets. As well as Alzheimer’s Society material I like to take along relevant information from other organisations such as Age UK and Guideposts Trust, plus details of local dementia services such as a Carer’s Café run by a local GP practice.

My first clients are long standing service users, a couple in their 80s called Mary and Fred. I chat with both Mary and Fred for a while, and then with just Mary. Fred, who cares full time for Mary, takes the opportunity to relax for an hour on his own, knowing Mary is safe – even a short break like this can make all the difference. Mary and I talk about her children and her time as a wartime evacuee, but after a while she becomes emotional – she is terrified of ‘going mad’ and being ‘put away’. Despite the difficulties, it’s clear there is a lot of love between her and Fred. I agree a date for another visit and ask Fred to keep me posted on his Community Care Assessment – I’m concerned that Fred needs more support in his role as carer.

Read more on the Live Well with Dementia website

The prevalence of dementia in rural Tanzania: a cross-sectional community-based study

This is not quite a project – but I found this when looking for a project to show case. And it is quite interesting and I wonder the Tanzanian government has done about its findings.

The prevalence of dementia in rural Tanzania: a cross-sectional community-based study.

Abstract
OBJECTIVES:
Despite the growing burden of dementia in low-income countries, there are few previous data on the prevalence of dementia in sub-Saharan Africa. The aim of this study was to estimate the prevalence of dementia in those who are 70 years and older in the rural Hai District of Tanzania.

METHODS:
This was a two-phase cross-sectional survey. Using census data, we screened individuals aged 70 years and older from six rural villages using the Community Screening Instrument for Dementia in Phase I. In Phase II, a stratified sample of those identified in Phase I were clinically assessed using the DSM-IV criteria.

RESULTS:
Of 1198 people who fulfilled the inclusion criteria, 184 screened positive for probable dementia, and 104 screened positive for possible dementia using the Community Screening Instrument for Dementia. During clinical assessment in Phase II, 78 cases of dementia were identified according to the DSM-IV criteria. The age-standardised prevalence of dementia was 6.4% (95% confidence interval: 4.9 to 7.9). Prevalence rates increased significantly with increasing age.

CONCLUSIONS:
The prevalence of dementia in this rural Tanzanian population is similar to that reported in high-income countries. Dementia is likely to become a significant health burden in this population as demographic transition continues. Further research on risk factors for dementia in sub-Saharan Africa is needed to inform policy makers and plan local health services.

Copyright © 2012 John Wiley & Sons, Ltd.

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.

 

Project: Dementia South Africa

Who is DEMENTIA SOUTH AFRICA?

Memory is the cornerstone of our past. Thinking and reasoning shape our present and our future. Communicating with others and caring for oneself are central to our social functioning. Without these, our well-being is ruthlessly compromised. Yet, in the developed world dementia is diagnosed every few seconds. One in every three persons with HIV/AIDS will develop dementia. While this will affect many South Africans, dementia is mostly unrecognized, misunderstood and undiagnosed. It results in further suffering, stigmatization, abuse and neglect.

As a leading South African authority on all forms of dementia, DEMENTIA SA strives to minimize the impact that dementia has on individuals, families and communities. By taking an innovative approach to service delivery that includes all relevant constituencies, DEMENTIA SA is a leading provider of awareness, information, education and support services to all those affected by dementia. It vigorously advocates the rights and dignity of those living with dementia. All services are supported by ongoing research.

DEMENTIA SA is committed to upholding the dignity of all persons affected by dementia and places a premium on providing services in under-developed areas. It is at the forefront of improving the quality of life of those living with dementia and those who care for them.

projects and services

Our primary aim is to provide innovative services and support to address the challenges faced by people with dementia, their families and carers in South Africa, focusing mainly in under developed areas. These include the provision of:

Community and Professional support:

Capacity development and community development through awareness raising, training, support groups, skills development, family counselling, support groups, advocacy (influencing those in power to take up a cause for the greater good of the citizens)

Support Groups: It is the objective of Dementia SA that all care givers and people with Dementia have a strong support network with access to reliable resources. Dementia SA convenes a number of Dementia/Alzheimer support groups designed to help those with family members afflicted with these conditions. The groups are focussed on sharing coping techniques, management and other strategies for caring for someone with memory loss.

Public Awareness Programme: Community awareness talks are requested by community groups, HIV and AIDS organisations, women’s organisations, social workers, care givers, nurses and medical staff. Dementia SA participates in community events, in partnership with the Department of Social Development and other community organisations.

Skills development: Dementia SA holds an Annual International Learning and Sharing Conference with is accredited with Continued Professional Development points (CPD) required by medical and other allied health care professionals to maintain their professional status. Included are home-based carers and community development workers, social workers and social auxiliary workers, ancillary health care workers, nursing assistants, community workers of the Departments of Health and Social Development.

Family counselling: Dementia SA’s core support services rendered by the organisation includes family counselling, family mediation, face-to-face counselling, remote counselling via Skype, tele- and email counselling and referral to appropriate services as required.

Advocacy: Foundation services including advocacy and lobbying comment on National Policy, for example, the National Health Insurance (NHI) and extensive input into the Older Person’s ACT (number 13 of 2006).

Formal Training:

Introduction to Dementia Training: (accredited and developed in conjunction with Dementia SA for South African conditions with Dementia UK) for home based carers, community workers and residential care facilities.

Specialised training for Magistrates, staff at the office of the Master of the Supreme Court, members of the SA Police Service and other key staff members of community institutions dealing with the elderly.

Specialised Activities:

The internationally recognised Learning and Sharing Conference on Person Centered Care and latest trends in dementia is a 2 day symposium that includes international specialists and accommodates 200 people.

Research: Dementia SA is committed to undertake research on the rights of older persons in South Africa and their ability to exercise their choice of how they wish to live out their lives.

Contact Dementia South Africa to become part of their reach.

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.