Category Archives: For Carers & Caregivers

If you develop Alzheimer’s, will your children get it too?

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Rebecca Sims, Cardiff University

The most common question I get asked is “Will my child get Alzheimer’s disease?” In my experience, this concern is one of the biggest worries for sufferers, and given the devastating effects of the disease, it is not hard to see why it is a difficult thought to contemplate.

For those people with a familial form of Alzheimer’s disease, the answer is quite straightforward. This type of disease is caused by one or more mutation(s) in one of three genes: the amyloid precursor protein (APP), Presenilin 1 (PSEN1) and Presenilin 2 (PSEN2). All of these genes are involved in the production of the amyloid protein. This protein accumulates to form sticky buildups known as plaques, which are found between the cells of the Alzheimer brain and are characteristic of disease.

Those of us who are concerned that they may be at risk from familial Alzheimer’s disease can get a definitive answer through one of the many genetic tests available. A single copy of the mutated gene inherited from an affected parent will ultimately cause disease, with symptoms likely to be noticed before the age of 65 and typically between 30 and 60 years of age. Anyone concerned that they may suffer from this form of Alzheimer’s should seek a referral to a genetic counsellor.

Fortunately, families with a familial form of disease represent less than 1% of all families afflicted by this debilitating disease. For the remaining Alzheimer’s disease families, the answer as to the inheritance of disease is much less clear, and disease onset is certainly not inevitable.

Influencing disease

A combination of both genetic and environmental factors, such as age and gender, contribute to non-familial (also known as sporadic) disease risk, but how these risk factors interact and how many risk factors are required to cause disease is still unknown.

The genetics of non-familial Alzheimer’s is complex: we know that nearly thirty genes, common in the general population, influence disease risk, with potentially hundreds more involved. Additionally, two genes of low frequency have consistently been identified, with an imminent publication by the International Genomics of Alzheimer’s Project, showing another two rare genes have a relatively large effect on disease risk.

Perhaps most excitingly for researchers, genetics scientists have shown that four biological processes in Alzheimer’s disease – that were not previously thought to play a casual role in disease onset – are actually involved. The first process is the immune response, in particular the actions of immune cells and how these potentially dysfunction, attacking the brain, which results in brain cell death.

The second is the transport of molecules into the cell, suggesting that there is a mechanism for the movement of damaging proteins into the brain. The third process that has a role in the onset of Alzheimer’s is the synthesis and breakdown of fatty molecules. And the fourth is the processing of proteins that alters protein breakdown, movement, activity and interactions – all of which are essential for normal protein function.

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Lifestyle risk

Age is the greatest risk factor for disease, with the likelihood of developing Alzheimer’s roughly doubling every five years over the age of 65. Women also have more chance of developing the disease than men, potentially due to a reduction in female hormones after menopause.

Medical conditions that increase risk for dementia include cardiovascular factors (type 2 diabetes, high blood pressure, cholesterol levels, and obesity), and depression. While lifestyle factors such as physical inactivity, a diet that increases cholesterol, smoking and excessive alcohol intake, have all been shown to influence disease risk.

Even for those with a high number of genetic, environmental and lifestyle risk factors, Alzheimer’s disease is not inevitable. Likewise, individuals with a low number of risk factors for disease are not precluded from developing Alzheimer’s.

Given this lack of certainty and the lack of effective treatments for Alzheimer’s, most experts don’t recommend genetic testing for non-familial disease. This thinking may well evolve in the future, however, when research identifies new risk genes and improves our understanding of the dysfunctional processes in Alzheimer’s disease.

The Conversation

Answering the burning question, whether you will pass Alzheimer’s disease on to your children, is therefore still a near impossibility. But, as early diagnostic techniques improve, and with the prospect of a number of vaccines and therapeutics currently in clinical trials, risk prediction for Alzheimer’s disease may become mainstream and part of a developing precision medicine culture.

Rebecca Sims, Research Fellow, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University

This article was originally published on The Conversation. Read the original article.

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Older Adults Are Still Likely Underestimating Cognitive Impairment in Their Families

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News release

 Study Finds Racial Differences in Reporting and Overall Trend of Underreporting Cognitive Impairment

An increasing number of older adults are reporting cognitive impairment in their families over the past two decades, according to a new study led by researchers at NYU Rory Meyers College of Nursing and East Carolina University’s Brody School of Medicine.

The study, which also finds ethnic and racial differences in reporting cognitive impairment, is published in Preventing Chronic Disease, a journal of the Centers for Disease Control and Prevention.

The aging population in the U.S. is growing rapidly, with the number of people age 65 and over in 2010 (40.2 million) projected to more than double by 2050. With the rapid increase in the aging population, the size of the population with cognitive impairment and dementia will continue to accelerate, highlighting the importance of identifying cognitive changes.

“Cognitive impairment may serve as a precursor to future dementia. Early detection of cognitive impairment can facilitate timely medical treatments, appropriate care planning, and prevention efforts,” said Bei Wu, PhD, Dean’s Professor in Global Health and director of Global Health & Aging Research at NYU Meyers, co-director of NYU Aging Incubator, and the study’s senior author.

The study sought to examine the trends of self-reported cognitive impairment among five major racial/ethnic groups from 1997 to 2015 in the United States. The researchers used data from the National Health Interview Survey, including 155,682 individuals age 60 and above in their sample. The large sample included people of a variety of races and ethnicities, including Asian Americans,  Blacks, Hispanics, Native Americans, non-Hispanic Blacks, and non-Hispanic Whites.

Rather than using a screening test or clinical examination to evaluate cognitive impairment, respondents were asked to report if any family member was “limited in anyway because of difficulty remembering or because of experiencing periods of confusion.”

The researchers found an increasing trend in self-reported cognitive impairment: the overall rate increased from 5.7 percent in 1997 to 6.7 percent in 2015 among older adults in the U.S. This finding may suggest that awareness of cognitive impairment, perhaps from heightened public attention to and interest in Alzheimer’s disease, has improved to some extent.

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When looking at each racial/ethnic group, however, the increasing trend was significant only among White respondents. In Whites, the rate of self-reported cognitive impairment increased from 5.2 percent in 1997 to 6.1 percent in 2015. Asian American, Black, Hispanic, and Native American respondents had higher rates of self-reported cognitive impairment than Whites, but these rates did not significantly increase from 1997 to 2015.

Regardless of the overall increasing trend, the rates of self-reported cognitive impairment were still low, which may suggest underreporting. The researchers note that the rates of self-reported cognitive impairment are much lower than the estimated prevalence of cognitive impairment. For adults 65 years and older, the rate of self-reported cognitive impairment was 6.3 percent in 2000 and 7.5 percent in 2012, while the estimated prevalence of cognitive impairment in the same age group was 21.2 percent in 2000 and 18.8 percent in 2012.

These findings underscore the need to further promote awareness of cognitive impairment, especially in minority populations. Different cultures hold different beliefs and perceptions of disease and aging. For instance, research has found that compared to Whites, minorities are less likely to seek treatment for psychiatric symptoms because of lack of access to care or due to stigma.

“Culturally specific health education is needed in individuals, family members, and healthcare providers to improve awareness and knowledge of signs and early symptoms of Alzheimer’s and other dementia,” said Huabin Luo, PhD, of East Carolina University.

In addition to Wu and Luo, Gary Yu of NYU Meyers coauthored the study.

High-intensity exercise delays Parkinson’s progression

 

 

High-intensity exercise three times a week is safe for individuals with early-stage Parkinson’s disease and decreases worsening of motor symptoms, according to a new phase 2, multi-site trial led by Northwestern Medicine and University of Colorado School of Medicine scientists.

This is the first time scientists have tested the effects of high-intensity exercise on patients with Parkinson’s disease, the second most common neurodegenerative disorder and the most common movement disorder, affecting more than a million people in the United States.

It previously had been thought high-intensity exercise was too physically stressful for individuals with Parkinson’s disease.

The paper will be published in JAMA Neurology Dec. 11, 2017.

Parkinson’s symptoms include progressive loss of muscle control, trembling, stiffness, slowness and impaired balance. As the disease progresses, it may become difficult to walk, talk and complete simple tasks. Most people who develop Parkinson’s are 60 and older.

“If you have Parkinson’s disease and you want to delay the progression of your symptoms, you should exercise three times a week with your heart rate between 80 to 85 percent maximum. It is that simple,” said co-lead author Daniel Corcos, professor of physical therapy and human movement sciences at Northwestern University Feinberg School of Medicine.

Because medications for Parkinson’s have adverse side effects and reduced effectiveness over time, new treatments are needed.

The randomized clinical trial included 128 participants ages 40 to 80 years old from Northwestern University, Rush University Medical Center, the University of Colorado and the University of Pittsburgh.

Participants enrolled in the Study in Parkinson Disease of Exercise (SPARX) were at an early stage of the disease and not taking Parkinson’s medication, ensuring the results of the study were related to the exercise and not affected by medication.

“The earlier in the disease you intervene, the more likely it is you can prevent the progression of the disease,” Corcos said. “We delayed worsening of symptoms for six months; whether we can prevent progression any longer than six months will require further study.”

Scientists examined the safety and effects of exercise three times weekly for six months at high intensity, 80 to 85 percent of maximum heart rate, and moderate intensity, 60 to 65 percent of maximum heart rate. They compared the results to a control group who did not exercise.

After six months, participants were rated by clinicians on a Parkinson’s disease scale ranging from 0 to 108. The higher the number, the more severe the symptoms.

Participants in the study had a score of about 20 before exercise. Those in the high intensity group stayed at 20. The group with moderate exercise got worse by 1.5 points. The group that did not exercise worsened by three points. Three points out of a score of 20 points is a 15 percent change in the primary signs of the disease and considered clinically important to patients. It makes a difference in their quality of life.

“We are stopping people from getting worse, which is significant, particularly if we catch them early in the disease,” Corcos said.

What sets this study apart from others is the high number of participants, and that they exercised for a relatively long period of time. Most exercise studies are 12 weeks, Corcos said.

“We gave them a proper workout,” Corcos said. “This is not mild stretching. This is high intensity. It’s part of the idea that exercise is medicine.”

Corcos and colleagues confirmed it was safe for the participants to do high-intensity exercise by giving them a cardiologist-supervised graded exercise test to evaluate the heart’s response to exercise.

Previous studies in humans suggest high-intensity exercise improves motor symptoms, but the evidence wasn’t sufficient to determine whether exercise intensity modifies symptoms or disease progression. In addition, most studies have not precisely measured or controlled exercise intensity and none have been conducted at 80 to 85 percent maximum heart rate.

“Several lines of evidence point to a beneficial effect of exercise in Parkinson’s disease,” said Dr. Codrin Lungu, program director at the National Institute of Neurological Disorders and Stroke. “Nevertheless, it’s not clear which kind of exercise is most effective. The SPARX trial tries to rigorously address this issue. The results are interesting and warrant further exploration of the optimal exercise regimes for Parkinson’s.”

Published: December 11, 2017

Source: Northwestern Now

高强度运动延迟帕金森氏症的进展

发布日期:2017年12月11日
西北大学发布 

转到移动页面。

芝加哥 – 根据由西北医学院和科罗拉多大学分校领导的新的第二阶段多点试验,每周三次高强度运动对于早期帕金森病患者是安全的,并且减少了运动症状的恶化。医学科学家。

这是科学家第一次测试高强度运动对帕金森病患者的影响,帕金森病是第二种最常见的神经退行性疾病和最常见的运动障碍,影响了美国超过一百万人。

以前曾认为高强度运动对帕金森病患者来说过于紧张。

该论文将于2017年12月11日在JAMA Neurology上发表。

帕金森症状包括肌肉控制进行性减退,发抖,僵硬,缓慢和平衡受损。 随着疾病的进展,走路,谈话和完成简单任务可能变得困难。 大多数帕金森病患者年龄在60岁以上。

“如果你患有帕金森病,而且你想延缓症状的进展,那么你应该每周锻炼三次,心率在80%到85%之间,这是很简单的,”联合主编丹尼尔·科科斯(Daniel Corcos)教授说。西北大学费因伯格医学院的物理治疗和人体运动科学。

由于帕金森药物有不良的副作用,随着时间的推移有效性降低,需要新的治疗方法。

随机临床试验纳入了来自西北大学,拉什大学医学中心,科罗拉多大学和匹兹堡大学的128名40至80岁的参与者。

参加帕金森病运动研究(SPARX)的参与者处于疾病的早期阶段,不服用帕金森药物,确保研究结果与运动有关,并且不受药物影响。

Corcos说:“你介入的疾病越早,你就越可能预防疾病的进展。 “我们推迟了六个月的症状恶化,是否可以阻止进展超过六个月,需要进一步研究。”

科学家每周三次检查运动的安全性和效果,持续六个月,高强度,最高心率的80%到85%,中等强度,最高心率的60%到65%。 他们将结果与没有运动的对照组进行比较。

六个月后,参与者由帕金森病评分范围为0至108的临床医师评价。数目越高,症状越严重。

研究参与者在运动前有20分左右的成绩。 高强度组为20人。中度运动组为1.5分。 没有运动的组恶化了三分。 得分为20分的三分之一是这种疾病的主要体征有15%的变化,并且认为临床上对于患者是重要的。 这对他们的生活质量有所影响。

Corcos说:“我们正在阻止人们变得更糟,这很重要,特别是如果我们在疾病早期发现他们。

这项研究与其他研究不同之处在于参与者人数众多,而且他们行使了相当长的一段时间。 Corcos说,大多数运动研究是12周。

“我们给了他们适当的锻炼,”Corcos说。 “这不是轻度的拉伸,这是高强度的,这是锻炼是药物的一部分。”

Corcos及其同事证实,参与者通过给予心脏科医师监督的分级运动试验来评估心脏对运动的反应,从而进行高强度运动是安全的。

以前对人类的研究表明高强度运动可改善运动症状,但证据不足以确定运动强度是否改变症状或疾病进展。 此外,大多数研究没有精确测量或控制运动强度,没有进行过最高心率的80%到85%。

美国国立神经疾病与卒中研究所(National Institute of Neurological Disorders and Stroke)的项目主任Codrin Lungu博士说:“有几条证据表明,帕金森病的运动是有益的。” “然而,目前还不清楚哪一种运动最有效,SPARX试验试图严格解决这个问题,结果是有趣的,并且需要进一步探索帕金森氏症的最佳运动机制。

Bringing back memories with a bundle of love

A woman with dementia who had forgotten how to speak suddenly rediscovers her voice when paid a visit by a six-month-old baby: http://ab.co/2u3kQTV Source (ABC) 

Watch this beautiful video from the ABC news! It’s so heartwarming.

 

 

Replacing care staff with robots… is this really the solution?

To be honest, I would not want to stay in a care home like this. I wouldn’t have a robot care for my child, why would I have a robot care for the elderly. Especially when we know that the human elements of social engagement and familiarity are an essential for cognitive function. How confusing would it be for a person living with dementia to be residing in a home fully run by artificial intelligence? Wouldn’t it be like being trapped in a Dr Who episode where the world is run by Cybermen?

Click here to go to source

Trishaws anyone?

A beautiful intergenerational activity to celebrate the love of cycling, a spot of reminiscence, and the great outdoors.

 

How lovely is this? As a child, my mother and I use to jump on a trishaw after our trip to the wet market. I use to watch the spokes go round and round and I still can hear the “Tak tak tak” sound the wheels make as we head home. It’s always a magical experience no matter how short the trip was. Took less than 5 minutes to reach our home from the market on a trishaw and I’ve sat in it for years and years with my mum, but it never grows old. With the wind in my face, the clicky round of the rickshaw, and just cuddled beside my mum with all our groceries at my feet, the world was our oyster.

When Cycling Without Age it just brought back all these lovely memories of my childhood. I wondered how wonderful would this be for it to be reintroduced into the community. There would be so many older adults in Asia whose main form of transport was the bicycle or the trishaw at a point of their time in their youth. As we aged and our physical abilities deteriorate, we lose our abilities to cycle and with it, our memories of freedom, that wind in your hair, the road just beneath your feet, to go wherever you wanted to go and be wherever you wanted to be.

Such an intervention can only bring generations together, a real intergenerational project of adventure and bonds. To bring people closer through the love of freedom and the outdoors.

I’m so glad to see this in Singapore and I hope that more Singaporeans will jump on board to support this movement!

If you have time, have a read of these 21 inspirational stories from Cycling without Age http://cyclingwithoutage.org/book/

Ageing in Place? Yes, we can!

Article: Why it’s good to be old in Wakabadai estate, where nearly half the residents are elderly

Read about a community that has come together to age together at the Wakabadai public housing estate.

Recently Channelnewsasia did a piece on the Wakabadai housing estate in Yokohama, Japan. It’s a really interesting estate and the means in which the estate has been configured bears many similarities to the high rise housing estates found in the big cities where we all live a wall away from our neighbours. However, despite living in the same building for 30 to 40 years a lot of us may just be acquaintances, saying the passing “hi” and “hellos” as we greet each other at the elevator or when we pass each other along the corridors.

A few years ago, I visited a couple who lived alone in a little apartment with two bedrooms, their children had moved out and the husband was caring for his wife with dementia. She is very quiet and apathetic. His greatest worry was that he may suffer a stroke or a heart attack and is unable to get help in time and both of them may pass away in their apartment despite being surrounded by hundreds or thousands of people living in the building. He cited a neighbour living a few floors below them, who had passed away without anyone noticing until a number of days later. He talked about the need for services for families like them, and many services assume that because they have children, there would be someone watching out for them. However, with the busy lives that his children lead, looking after their families and juggling work, they could only call in on the weekends and rightly so with the changing landscape of the economy.

His son offered to have them stay with him but leaving their much familiar neighbourhood might be too much for his wife. Even now she would get agitated if they left the vicinity. For them this is home, this is where they had built their lives, house their memories, thrived in their love, and they wouldn’t want to live anywhere else.

Why is it that when we grow old, we have to move away? We have to sell our home, move into a retirement village and start all over again. I want to live in a place that will evolve and age as I age, that grows old as I do.

Back to Yokohama, the Wakabadai public housing estate is just that, with slightly less than half of the residents 65 years and older, the people living in the estate are ageing in place together. To date, there is a total of 14,658 residents living in the estate in 6,304 units. To ensure that they needs are met, they have come together with organisations and council to organise a range of services.

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Map of Wakabadai

Social Engagement for Older Adults:

The Wakabadai Non-Profit Organisation enables social activities such as health, music, cultural and sporting events to be held in the vicinity. Himawari provides a space for volunteers to interact with older adults over a cuppa. Residents are also keenly aware of “kodokushi”, which refers to people who are living alone and have passed away and their deaths have gone unnoticed by the community. In Wakabadai, residents band together and keep a keen eye out for the sudden build up of mail or newspaper in the mailboxes of older residents and the mail continues to be left unattended with no notice that the resident might be away.

A paid service is also available at the Himawari Community Centre where they can have a staff to ring their phones to ensure they are alright. They can also have a spare key stored at Himawari for approximately 500 yen.

In addition, celebrations during festive periods are arranged by the organisation to encourage engagement among the residents. Sports events are also organised regularly to encourage and promote a healthy lifestyle among residents.

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Wakadabai Estate

Creating an Intergenerational Community:

To encourage engagement from children and younger adults, a facilty for mothers group known as Wakaba Family Plaza Soramame can be found in Wakadabai. A safe space for mother’s of infants and toddlers to interact, support and exchange vital parenting information with each other and older adults. Older adults with early childhood qualifications can find work as advisors, helping to support young mothers, sharing with them their years of wisdom. Coming into Wakaba Family Plaza Soramame, you may find three generations interacting and hanging out together.

Meaning Occupation:

The Wakabadai Non-Profit Organisation also helps to find jobs for older adults.

Older adults can also showcase their culinary skills at Haru Dining, a restaurant staffed by older women living in the area serving up old school, heartwarming home cooked meals.

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Assistance with Activities of Daily Living:

Residents can also tap on a home help service at the cost of 490 JPY per hour which covers everything from house chores to transport to get their food or groceries delivered. Transport is highly efficient with buses running every 3 mins to the major train station, currently, residents are campaigning for a train station to be built close to their vicinity.

Other accessible facilities in the area include a post office, supermarkets, salons, restaurants, shops, gyms and parks.

Healthcare:

When it comes to healthcare, the Community Centre run by the Yokohama City Council also provides exercise classes for older adults, a care facility for older adults during the day, and medical staff such as nurses are available to provide older adults health and medical advice.

In addition, Asagao, a district nursing service consisting of nursing and medical staff from an acute hospital in the area man an emergency hotline that is accessible for residents in the estate at all times of the day or night. On top of the hotline, staff also provide and provide home care to the residents in the community.

When it comes to high care needs, residential aged care facilities are also located in the estate for residents who are too frail to reside in their own home.

With all the facilities to encourage a positive ageing in place, it is no wonder that the rates of older adults requiring nursing care much lower than the average rates found in other estates in Yokohama. In Wakabadai, the rates of nursing care currently stand at 12 percent whereas, on average 17.5 percent of older adults in each estate is found to require nursing care at home.

Wakadabai has shown that ageing in place is possible and it is achievable in the big cities with high-density living. With key elements in place, council and community support, we all can grow old gracefully in the luxury of our homes.