Souvenaid – A Nutritional Drink for Alzheimer's Disease?

(Soruce:  Alzheimer's Society, March 2016 Research Update)

       

On 10th March 2016, news outlets reported on a nutritional drink that claimed to "stop the brain from shrinking" and "slow the progression of Alzheimer's disease". We examine the science behind these headlines.

The story is based on clinical trial results that were presented at the Advances in Alzheimer's Therapy congress in Athens. This research team provided evidence that this drink may help to improve some aspects of memory in people who have mild cognitive impairment due to the very early stages of Alzheimer's disease. However, it is recommended that you speak to your GP before starting to take this drink or any other nutritional supplements or medication.

What is the drink?

Souvenaid is a nutritional drink containing an active ingredient called Fortasyn Connect. This is a combination of fatty acids, vitamins and other nutrients. It was developed with the aim of preventing the loss of important connections between brain cells that occurs in Alzheimer's disease. Whilst this effect on brain cells has been shown in animal studies, it has not yet been confirmed that the drink has the same effect in people.

Previous trials of the drink were not able to show any effect on its ability to slow or prevent cognitive decline but there was evidence that it may improve some kinds of memory in people in the early stages of Alzheimer's disease. Therefore, it is approved as a food for medical purposes for people in the earlier stages of the condition and is available over the counter at £3.50 for a daily dose.

What was this trial and what were the results?

The study involved 311 people who had mild cognitive impairment, which is a condition where someone has mild memory problems that are not severe enough for them to be diagnosed with dementia. The study participants had also had tests like brain scans or spinal taps to show that their memory problems were most likely due to the very early stages of Alzheimer's disease.

Half of the people on the trial took the drink containing Fortasyn Connect once a day for two years; the other half took a drink with the same calorie content but without the active ingredient. When the researchers analysed the results at the end of the trial, there was no difference in overall cognitive performance between the two groups.

However, when the researchers used more sensitive tests they found that the people who had taken the drink containing Fortasyn Connect had improvements in their episodic memory (memories of specific events and the time and place that they happened). Brain scans from the trial also showed that the people who took Souvenaid had less shrinkage in certain areas of their brain, including in the hippocampus, which is involved in memory.

There was no evidence presented that those who took Souvenaid were less likely to experience cognitive decline or to progress to full Alzheimer's disease. The research team are still analysing this data from the LipiDiDiet trial.

What do these results mean?

These trial results have not yet been published which means they have not yet been rigorously scrutinised by the scientific community. We need to wait for the trial results to be published to be able to get a detailed understanding of what they mean for people with early Alzheimer's disease.

Based on the results presented at the conference, we cannot say that the drink is able to prevent cognitive decline in those mild cognitive impairment due to the very early stages of Alzheimer's disease. The drink has no overall effect on cognition when it is taken for two years.

There is evidence that it can bring improvements in some aspects of memory after two years. This means it might be able to help people in the very early stages of Alzheimer's disease to manage some of the memory problems they commonly experience.

I'm worried about my memory - should I buy this drink?

If you are worried about your memory, or have a diagnosis of mild cognitive impairment, you should see your GP to discuss the options that are suitable for you.

This trial only looked at people with mild cognitive impairment due to the very early stages of Alzheimer's disease, but there are many other causes of mild cognitive impairment. There is no evidence that this drink would improve memory in everyone who has this condition so it is best to consult with your GP before beginning any nutritional supplement.

There is evidence that regular physical activity, avoiding smoking, eating a healthy, balanced diet and keeping your blood pressure in check are all ways to reduce your risk of developing dementia. This nutritional drink might improve memory in some people with mild memory problems but there is currently no evidence that it will slow cognitive decline or prevent dementia.

DOES POOR SLEEP AFFECT DEMENTIA RISK?

Several people find that having a bad night’s sleep can affect their memory and thinking abilities the next day. But does poor sleep have an effect on your memory in the longer term? This article explores the research into whether there is a link between sleep and dementia risk.

Sleep

People affected by dementia often have several issues with getting a good night's sleep, and sometimes people report that their memory seems worse after a bad night. However, the evidence is unclear on whether poor sleep is a risk factor for dementia.

Sleep and dementia is a complicated topic. Different types of dementia are associated with different sleep problems. Researchers are also not yet sure which way the interaction goes - whether poor sleep causes or exacerbates dementia or if dementia leads to poor sleep. Some researchers believe that both of these theories could be true, and the relationship could be circular. On top of this, it is unclear what the mechanisms are that underlie these interactions.

It is clear that more research is needed to understand this relationship; in particular research that observes large groups of affected people for very long periods of time.

Light Sleep Disorders

Light sleep disorders are often called rapid eye movement sleep behaviour disorder (RBD), and cause people to act out their dreams through moving or talking in their sleep. Dementia with Lewy bodies and Parkinson's disease seem to be particularly associated with light sleep disorders and some studies have suggested that light sleep disorders are a very early indicator of these conditions, particularly in older men.

Some researchers believe that the part of the brain that is damaged with dementia with Lewy bodies or Parkinson's disease also plays a role in light sleep, explaining why people with these conditions are particularly affected by light sleep disorders.

Sleep-Wake Cycle Disorders

The sleep-wake cycle is the 24 hour cycle that the body goes through each day, normally ensuring that we are active during the day and sleepy at night. When this cycle is altered is causes many unusual and disruptive sleep patterns. These include wakefulness at night and problems falling asleep and staying asleep, as well as drowsiness and napping during the day.

These sorts of sleep disturbances are associated with many kinds of dementia, most notably Alzheimer's disease. They also affect people with Parkinson's disease.

It is thought by some researchers that the Alzheimer's hallmark protein amyloid may be behind the link between Alzheimer's disease and sleep-wake cycles. Increased amyloid in the brain is commonly seen in people with Alzheimer's and studies have shown that raised amyloid levels may be associated with poor sleep quality.  The amyloid protein has also been linked to problems with storing memories whilst we sleep and other research indicates that poor sleep may affect the body's ability to clear the toxic amyloid protein from the brain.

This has led to the suggestion that improving sleep quality may have the potential to delay progression of Alzheimer's disease. However, it is also possible that the changes to the sleep-wake cycle are caused by other changes in the brain, and do not have an impact on risk of the condition. More research is needed to understand what the mechanisms linking sleep-wake cycles and Alzheimer's are.

Sleep Disordered Breathing

Sleep disordered breathing is when someone has difficulty breathing when they are asleep. This may be because of obstructions to the airway, making breathing harder work. Sleep disordered breathing is sometimes called sleep apnoea.

People of all ages can be affected by sleep disordered breathing, but it is most common in older people and people with obesity. Some research has suggested that people who are affected by sleep disordered breathing may be at higher risk of cognitive decline or impairment. This is because sleep disordered breathing may cause damage to the brain due to changes of levels of oxygen and carbon dioxide in the blood. It may also change flow of blood to the brain.

Treatments for Poor Sleep

Good quality sleep is linked to good health, including cognitive health. Researchers have also investigated whether there are effective treatments for poor sleep and whether these treatments can affect dementia risk. Some drug treatments for poor sleep, such as benzodiazepines, have been linked to an increased risk of dementia although the evidence behind this link is conflicting. Alzheimer's Society is funding a study into the effects these drugs could have on dementia risk.

Many treatments that have been suggested to improve quality of sleep involve lifestyle changes. Regular sleep regimes, eating schedules and diets, exercise, and ensuring exposure to bright light in the morning are all ways that you can improve your sleep quality. However more research is needed to indicate whether these activities have an effect on risk of dementia or disease progression. There is more information in treatment of sleep disorders on the NHS Choices website or you can speak to your GP.

A machine called continuous positive airway pressure (CPAP) has been shown to reduce the consequences of sleep apnoea by several studies. Before this treatment can be used, research is needed to indicate with more detail how to use it, for example how long the treatment should last and what lifestyle changes can be made to help.

There are also several drugs that have been trialled to improve sleep. Some doctors may prescribe melatonin, a hormone believed to be important in maintaining regular sleep-wake cycles. There is some evidence that this treatment does improve sleep quality in people with Alzheimer's disease and Parkinson's disease but so far evidence suggests melatonin does not affect risk of dementia or cognitive function.

Please consult your GP before making any decisions about taking sleep medication.

(Source:  Alzheimer's Society, March 2016 Research Update)

ADFM Monthly Talk and Caregivers Sharing Session - Saturday, 19 March 2016

All Caregivers and Families, 

Please be informed that the Monthly Talk and Caregivers Sharing Session in March to be chaired by Assoc Prof Dr Shahrul Bahyah Binti Kamaruzzaman, Consultant Geriatrician from UMMC and UMSC, will be held on: Day / Date :  Saturday, 19 March 2016 Time :  2.30pm to 4.30pm Venue :  ADFM PJ Daycare Centre, No. 6, Lorong 11/8E, 46200 Petaling Jaya. Before the open discussion and mutual sharing of experiences of dementia in the clinical and home-setting, Assoc. Prof. Dr Shahrul Bahyah in her talk will give advice to caregivers on what happens or to expect if the person with dementia needs hospital admission.

All caregivers and their family members, and allied healthcare providers for AD persons, please do not miss this valuable monthly sharing session.

To register, forward the completed Registration Form to jenny@adfm.org.my or by email giving full name/s, mobile contacts and email address. 

Should you require any further information, kindly contact Jenny at 016 608 2513 / 03 7931 5850.

Kindly be punctual as we will start at 2.00pm. 

Best wishes.  

AGING IN AGONY

YOU REALLY SHOULD KNOW WHAT IT FEELS LIKE TO GROW OLD  

TREAT OLDER PEOPLE WITH EMPATHY AND KINDNESS

Sharing with you the following extracts from the articles, Titled Aging in Agony on Elder Abuse and What does it feel like to grow old?, by S Indramalar in Star2 on 11 March 2016.

With his shoulders slumped, head hanging low and chin resting on his chest, Bernard Matthews is a shell of the man he used to be.

Up until a few years ago, the 82-year-old retired teacher used to read and write. A strapping man – he used to play hockey in his youth – Bernard would walk to the neighbourhood coffee shop to discuss current affairs and exchange “war stories” with his friends.

These days, he doesn’t say much. He shuffles and mumbles, and prefers to stay in his room.

He was recently diagnosed with depression and dementia, but his well-being deteriorated rapidly because he has been mistreated at home.

The verbal and emotional abuse started four years ago.

After Bernard lost his wife, his son and family moved in with him. Bernard thought their company would be good in his golden years.

He didn’t expect to be bullied.

It was his house but Bernard was made to feel like he was invading “their” space. He was yelled at for every little thing: forgetting to turn the TV off, not folding his towel or even watching “too much” television. He was accused of being a “burden” even though most of his pension went towards household expenses, called a “nuisance” and was constantly belittled.

All this began to eat away at Bernard. Bit by bit, he became withdrawn and depressed. He stopped going for his walks.

A concerned neighbour alerted the police and two officers came to check on him in his house in Labu, Johor. After assessing the situation, one of them discreetly advised Bernard to file a report of abuse.

For the first time, Bernard felt he could do something about his situation. He called his daughter who lived in Kuala Lumpur and they went to the police station where Bernard shared about the abuse he’d been suffering.

The police said they’d help him get a protection order from the courts. But at the last minute, Bernard backed down.

“He is my son. I don’t know why he is like this but he’s my son,” Bernard told his daughter. He also refused to move in with her because he didn’t want to leave his own house.

Elder abuse is a growing problem in Malaysia’s fast-ageing society but it is a crime that is grossly under-reported. Just like domestic violence, most view it as a “family matter” that is best dealt within the family.

Elder abuse, as defined by the World Health Organisation, is a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person.

The country also needs to re-examine its laws to ensure the elderly are not vulnerable to abuse.

Thus far, the assumption is that the elderly will be well cared for in their golden years because filial piety is a trait most Malaysians are brought up with.

It is, however, not a value everyone subscribes to. The hard reality is that government health and social services must play their roles in protecting the elderly from abuse or mistreatment. Presently, there are no specific laws to ensure elderly care, what more protect the elderly from abuse. The welfare of elders comes under the purview of the Penal code and the Domestic Violence Act.

Doctors, social workers and other frontline responders now do not have clear guidelines on handling elder abuse.

“We found that most primary care doctors and nurses have had no training on handling elder abuse cases and rely on the guidelines that we have on child protection. Without any clear guidelines when it comes to elder abuse, most said they were just guessing and didn’t know what they should do,” says Universiti Malaya’s Department of Social and Preventive Medicine lecturer Assoc. Prof. Dr Noran Naqiah Hairi. She is leading an ongoing study – called the Prevent Elder Abuse and Neglect Initiative (Peace) – with her colleague Dr Clare Choo.

Consultant Geriatrician, Dr Rajbans Singh concurs, pointing out instances when social workers wanted to remove the elderly from an abusive environment but had nowhere to place them.

“So, what do doctors do? Do we call the police? We are not clear on the protocol related to elder abuse. When it comes to children, the SOPs are clear as we have the Child Act, but not so with elderly patients."

“At present, what we do is talk to the family members and try to counsel the caregivers and discuss problems they may face,” he says.

He stresses that while we may want to believe that as an Asian society we will look after our elderly, we need to accept our changing society and prepare for the future.

One of the contributing factors to elder abuse cases, says consultant geriatrician Dr Rajbans Singh, is a lack of awareness, knowledge and understanding about elderly care and support.

“In my 20 years as a geriatrician, I have come across many cases. A lot of the times, the abuse occurs not because the carers or family want to intentionally hurt or harm the older person but because they do not know how to care for the elderly."

“It’s different with children, where you are in charge and you can set the rules. With the elderly, they can make up their own minds. We have to remember that these older people were once ‘somebodies’ – they were the head of households, they were professionals or had jobs and were depended on for many things. But, the roles have now changed and that’s not an easy thing to deal with,” explains Dr Rajbans.

"Things get more challenging if the older person is no longer alert because of Alzheimer’s or dementia, diseases that correspond largely to ageing."

“Emotional and psychological abuse is very common especially if the patient (older person) has dementia. Many carers really don’t understand the nature of the disease and don’t know how to deal with someone with dementia,” says Dr Rajbans.

He shares his childhood experience of dealing with the elderly.

“My grandfather had dementia. At the time, I was quite young… I wasn’t a doctor yet. He would just walk out and talk about things that didn’t make sense to us. Sometimes, he would go to the road outside our house and take a leak. I remember my cousins would get very upset with him. They took his actions personally, as if the old man was out to make things difficult for them on purpose.

“What we didn’t understand at the time was that he was suffering from dementia. It was only years later when I became a doctor did I understand his behaviour at the time,” he shares.

"However, as important as it is for caregivers to empathise, it is also crucial for them to have a support system to lean on."

“Most families think about the welfare of the older person so much, they forget about the carer. In many families, the responsibility of caring for the older person falls on the shoulders of one child or one sibling."

“The others may contribute financially or occasionally, but the responsibility is largely on one person. It can take a heavy toll, especially if the elderly person is not well."

“The carer’s life now is centred around this older person. After some time, with no support or help, he or she may find it hard to cope and that is when the abuse starts – by taking out the stress on the elderly person,” says Dr Rajbans.

When it comes to caring for the elderly, families need to come together and support each other.

“If it gets too stressful, caregivers can hire private nursing help for a few hours every week just to allow them some time to do their own thing. Or, find suitable day-care facilities that are comfortable for the elder persons and allow them to meet and talk to their peers, while giving caregivers some time for themselves,” suggests Dr Rajbans

Presently, senior citizens (60 and above) make up 9% (2.77 million) of the country’s 30.49 million population. This figure is expected to shoot up to 15% by 2030.

The existing support services aren’t enough to cope with the current ageing population, let alone the surge in less than 15 years.

Something needs to be done, says Consultant Geriatrician, Dr Rajbans Singh.

“We currently have 20 geriatricians in the country. Singapore has a much smaller population and they have about 100. In many countries, geriatrics has become one of the largest (area of) specialisation as they know they are dealing with an aging population. We need to catch up,” he says.

“An ageing society is our reality. Everyone is busy with their careers or living abroad. We have to think of putting in place support services – community nursing homes and day-care centres, community nurses and so on. “It’s not too late, but we have to act quickly,” he says

.

(Full Text – star2@thestar.com.my, 11 March 2016)

HOW TO GET RELIEF FROM SUNDOWNERS SYNDROME

Dear Caregivers,

Useful tips from Alzheimer Support @SandyAlz.

When my Mom had Alzheimer’s, Sundowners Syndrome could make bedtime a nightmare.

Late evening was a dreaded time for my Mom. Some evenings she would fall asleep as soon as her head hit the pillow. But, more often than not she would begin to cry only hours before bedtime.

A gentle weeping at first would turn into a very sad, groan then escalate to a loud sobbing wail that filled the house.

It didn’t happen every night, but it happened often enough to ask the doctor if there was something wrong and what on earth could I do.

Some antidepressants cause anxiety and irritation and keep them awake rather than help them to sleep. Mom seldom took more than a mild antidepressant at night as we hoped for a sound and restful sleep.

Despite all our efforts, several nights a week, Sundowners Syndrome haunted Mom. Her wailing cry was unnerving. It almost sounded like someone in horrific emotional pain. If you’ve ever heard a mother weeps from the death of a child, that is exactly how my Mom sounded on many nights. She wouldn’t walk or flail, but sit on the side of the bed and weep into the darkness.

Mom took a light medication to help her sleep, but remained alert during the day. Most often, she had really good days.  It was only the evening hours that brought nightmares while she was wide awake.

A few things I did find to help during those Sundowners Syndrome Nights:

·                Keep the last meal of the day fairly early, usually before 5 pm.

·                Take an afternoon walk, so Mom would be ready to settle down.

·                No naps during the day, as that prevented sleep at night.

·                For an hour or so before bed time, Mom would wind down from her daily activity.

·                She’d be drowsy and perfectly happy to go to bed with a little warm milk.

Sometimes these small activities would do the trick and she’d sleep soundly.

Though no one really knows for sure what causes it, Sundowners is common among those with dementia.

Some behaviours during Sundowners include: shouting, wandering, expressing fear, sadness, crying and anxiety.

Since the cause of Sundowners is unknown, many think it might have something to do with the body’s natural cycle or Circadian Rhythms (natural sleep/wake cycle). The longer they’ve had dementia, the deeper is their confusion.  It seems to occur as they begin to sleep more and stay awake less.

A few other recommendations I’ve learned since my Mom passed away 7 years ago are:

·              Shadows seem to bring them a lot of fear, so try for a well-lit atmosphere as much as possible. 

·              Make sure they get lots of exercise during the day, so sleep-time comes more naturally. 

·              Keep caffeinated beverages or foods to a minimum as they too can keep them awake. 

·              Playing soft music also helps them to stay asleep and if they need to get up for bathroom time in the middle of the night, be certain the bathroom is well-lit. 

·              Touch-base with their doctor. Let them know about the issue and ask for suggestions, perhaps a light sedative or check on the medications they are already taking, could one of them been keeping them awake?

All the best to those caring for someone with Sundowners Syndrome. If you find something that helps or would like to share something you’ve learned. We’d love to hear from you.

(Source:  Alzheimer Support @SandyAlz)