Tag: Alzheimer’s disease
Sir Terry Pratchett was a noted author and activist. His genre was fantasy, and more than 85 million copies of his books have been sold. He was most noted for his Discworld series of 41 novels.
Sir Terry Pratchett died on March 12, 2015 at the age of 66 as a result of early-onset Alzheimer’s disease (which he referred to as an “embuggerance”). Prior to his death, he was a vocal supporter of Alzheimer’s research and assisted suicide.
Pratchett left a significant number of unfinished works upon his death. These works will never be enjoyed. Pratchett’s daughter, the custodian of the Discworld franchise, has stated that these works will never be published.
More definitively, Pratchett told his friend and collaborator, Neil Gaiman, that he wanted whatever he was working on at the time of his death to be destroyed. More specifically, he asked that his works and computers be put in the middle of the road and run over by a steamroller.
This wish was fulfilled on August 25, 2017. His hard drive was crushed by a vintage John Fowler & Co. steamroller named Lord Jericho at the Great Dorset Steam Fair. The destroyed hard drive was put on display at The Salisbury Museum
Presumably, the destruction was agreed to by his estate trustees. Otherwise, the works would fall into his estate to be dealt with as assets of the estate.
The wishes of authors with respect to their posthumous works are not always fulfilled. Notably, Franz Kafka asked his friend and literary executor Max Brod to destroy all of his works after he died. Brod ignored this request, and as a result, some of Kafka’s most famous works, The Trial, The Castle, Amerika and The Metamorphosis were published after his death. In an essay by Scott McLemee, it is noted that Kafka was a lawyer, and must have known that his intentions set out in a couple of notes would not be binding on his estate trustee.
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Canada, as most people will know, has an aging population and the issue of dementia has become more and more prevalent over the years, as it affects the ability of those afflicted, to live and function independently.
A strategy to address this problem is important given the statistics, however, another interesting aspect of this live issue is the work being done to develop a means of preventing and minimizing the impact of this disease on people in the future.
Dr. Rosanna Olsen is the leader and director of the Olsen Lab and a scientist at the Rotman Research Institute (RRI) at Baycrest as well as an Assistant Professor at the University of Toronto.
Dr. Olsen noted that early detection of dementia is important for effective treatment of the disease. Given that no test can currently detect dementia before the onset of symptoms, Dr. Olsen has undertaken research that will help in the development of non-invasive and cost-effective eye-tracking tests that will identify those at risk of dementia before the onset of the symptoms.
Dr. Olsen will receive $546,975.00 over five years for her work in establishing a set of new eye-tracking and brain-imaging biomarkers that will assist in the earlier detection of Alzheimer’s disease.
I, for one, am very interested in seeing the results of this study and how they may impact the detection of Alzheimer’s disease in the future.
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We’ve blogged quite a bit recently on the various technologies and breakthroughs that are being made in Alzheimer’s, including the use of Artificial Intelligence in detecting early signs of the disease and research on new treatment methods. As anyone who has worked with affected individuals and their caregivers can attest, Alzheimer’s and dementia are extremely challenging and will increasingly affect more families. It’s no surprise then that researchers and governments are taking steps to address Alzheimer’s disease and dementia.
Last month, the Canadian Federal government announced its comprehensive dementia strategy (for news coverage, see this CBC article). The release of the strategy comes on the heels of the passage of the National Strategy for Alzheimer’s Disease and Other Dementias Act in 2017 which allowed the government to take steps to begin developing a national dementia strategy.
The strategy aims to broaden awareness of dementia and advance the following “national objectives”:
- Prevent dementia by advancing research and expanding awareness of and support in adopting lifestyle measures that can increase the prevention of Alzheimer’s disease and dementia;
- Advance therapies and find a cure by supporting and implementing research; and
- Improve the quality of life of people living with dementia and caregivers by eliminating stigma, promoting early diagnosis and care, and better supporting caregivers.
As part of the national strategy, the Federal budget (released on March 19, 2019) allocated $50 million over five years towards implementing the dementia strategy. The release of the national strategy and funding to address this issue has been welcome news to organizations in Canada dedicated to tackling Alzheimer’s and dementia.
Hopefully, the release of this strategy will promote the continued advancement of breakthroughs in Alzheimer’s and dementia research.
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My colleague, Garrett Horrocks, recently blogged on a promising breakthrough in research relating to the early detection of Alzheimer’s disease. The research focused on the use of artificial intelligence to assist in the early detection of the disease.
Last week, I came across an interesting article that discusses a promising breakthrough in the United States in treatment for patients who suffer from Alzheimer’s disease and other degenerative diseases. The fact that treatment options continue to be explored by the science, engineering and medical community is hopeful, in light of last year’s announcement by the world’s largest pharmaceutical company, Pfizer, that it is pulling out of research into Alzheimer’s disease.
The treatment consists of implanting a “pacemaker” into the part of the brain responsible for executive and cognitive functions, such as planning, problem solving and judgment. The article explains that a battery pack is then placed in the chest, which sends electrical currents through the wires in a process called “deep brain stimulation” or DBS.
Studies on the use of the implant have shown that the subject patients’ cognitive and daily functional abilities as a whole declined much more slowly than Alzheimer’s patients in a matched comparison group who were not being treated with DBS.
The article highlights one study participant, Ms. Moore, who, prior to receiving the implant, was unable to cook meals or dress herself without assistance. According to the article, Ms. Moore was very fearful that her disease would take away her ability to play hymns on the piano, however, after two years of receiving DBS, she is still able to continue playing the piano and can now cook meals, select outfits and plan outings independently.
My colleague, Garrett, has pointed out in his recent blog that there could be many ways in which the use of artificial intelligence in the early detection of Alzheimer’s could impact succession and estate planning, such as a predictive diagnosis prompting a testator to take steps to implement an estate plan prior to the loss of capacity.
There is no global definition of capacity, and there are varying degrees of capacity that attract different legal tests. Capacity is decision, time and situation specific, such that a person may have capacity to do certain things, but not others, at different times and under different circumstances.
While the full impact of the use of the implant and DBS in treating Alzheimer’s is not yet clear, should the treatment continue with its successes, it may be possible that people living with Alzheimer’s who do not have testamentary capacity today, may have testamentary capacity sometime in the future.
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A recent study published by the Department of Radiology and Biomedical Imaging at the University of California at San Francisco represents a promising breakthrough in research relating to early detection of Alzheimer’s disease. At the core of the study, however, is a familiar yet unlikely trend: artificial intelligence.
The research team developed an algorithm to read and interpret PET scan images with a particular emphasis on monitoring and detecting changes in glucose uptake over extended periods of time. Glucose monitoring has historically been an important predictive factor in formulating a diagnosis of Alzheimer’s. Healthy cells generally display high levels of glucose uptake, indicative of robust cell activity. Conversely, lower glucose uptake suggests cell inactivity or death, for example, as a result of Alzheimer’s.
The slow, progressive nature of Alzheimer’s has historically rendered it difficult for radiologists to observe the subtle changes in glucose levels until symptoms had reached a stage at which they were no longer meaningfully reversible. The team at UCSF tailored the algorithm to detect subtle features that were imperceptible to the human eye.
To achieve this, the algorithm was fed thousands of PET scan images from thousands of patients at all stages of cognitive impairment, from no impairment through to late-stage Alzheimer’s. Over time, the algorithm learned to discern between the particular features of a given scan which were of assistance in predicting the eventual onset of Alzheimer’s and those which were not. At the conclusion of the study, the algorithm had correctly predicted the onset of Alzheimer’s in more than 92% of cases. Importantly, the algorithm was able to predict the onset of Alzheimer’s, on average, more than six years before the symptoms constituting a typical diagnosis had manifested.
Leaving aside the obvious benefits relating to treatment and reversibility, early detection of Alzheimer’s could stand to have numerous applications in the context of succession and estate planning. For example, a predictive diagnosis could spur a testator to take steps to implement a proper estate plan well before his or her capacity to do so could become a concern. In turn, the testator would have the security that their plan of succession would be carried out according to his or her instructions, reducing the risk of contentious post-death litigation.
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This September marks the fifth annual World Alzheimer’s Month. World Alzheimer’s Month and World Alzheimer’s Day, which took place on Wednesday, are part of a campaign to increase awareness of dementia and related misconceptions.
In honour of World Alzheimer’s Day, Global News posted an article outlining five common misconceptions about dementia. They focused on the following:
- “Misconception: A diagnosis of Alzheimer’s disease or dementia means my life is over.” Individuals can continue to live and function normally for years despite a diagnosis with Alzheimer’s disease.
- “Misconception: Dementia is a disease of the elderly.” Although the likelihood of developing dementia and other memory issues may increase with age, early-onset dementia can affect individuals in their 40s or 50s. In Canada, approximately 16 thousand of those living with dementia are under the age of 65.
- “Misconception: There’s nothing I can do to prevent or stave off dementia.” Research suggests that there are ways to limit the risks of developing dementia, such as an active and social lifestyle and a healthy diet.
- “Misconception: Dementia and Alzheimer’s disease are all about memory loss.” Dementia goes deeper than memory loss and this misconception may trivialize the disease.
- “Misconception: One of my parents had Alzheimer’s disease, so I’m going to get it, too.” The most common forms of dementia do not appear to be genetically inherited, so the risk of developing Alzheimer’s is only loosely connected to family history of the disease.
Have a great weekend.
A recent fact sheet published by the World Health Organization indicates that worldwide there are approximately 47.5 million people living with dementia. Alzheimer’s disease is the most common cause of dementia and accounts for approximately 70% of these cases.
Of those who suffer from Alzheimer’s disease, approximately 60% have a tendency to wander. This places these individuals at increased risk of serious injury and can cause significant stress for their families and caregivers.
Inspired by his own grandfather’s battle with the Alzheimer’s, a New York City teen, Kenneth Shinozuka, has invented a wearable sensor called SafeWander that will immediately trigger an alarm on a cell phone when a patient suffering from Alzheimer’s is on the move.
The sensor comes in the form of a small button, which can be attached to the patients clothing, and has the ability to detect movement, for example, when a patient sits up in bed. This is particularly useful for those caring for a loved one who has a tendency to wander out of bed at night.
Shinozuka’s invention will no doubt create peace of mind for caregivers and help keep loved ones suffering from Alzheimer’s safe.
A short video which explains how the technology works and Shinozuka’s inspiration for its creation can be viewed here.
Thank you for reading.
We have recently highlighted some of the interesting ways in which medical and technological experts and policymakers across the globe are responding to dementia. With an aging population and the increasing prevalence of Alzheimer’s disease and other dementias, there is a growing need to focus on how to create a more dementia-capable society.
In instances where a individual living with dementia is no longer able to make decisions regarding their care, that responsibility falls to the individual’s substitute decision-maker. Substitute decision-makers may be required to make important and difficult decisions about the incapable person’s care, such as the use of caregivers and home support services.
Individuals who are tasked with making decisions regarding the care and companionship for people living with dementia may soon have a new option available to them. Reuters recently profiled Nadine, a humanoid robot developed by scientists at the Nanyang Technological University that may someday be used as a companion for individuals living with dementia.
According to the university, Nadine is a “social robot,” which means that she has a memory and personality of her own and is able to exhibit moods and emotions. Nadine currently works as a receptionist at the university, and could also serve as a personal assistant or companion to the elderly.
Nadine’s creator, Professor Nadia Thalmann of the Nanyang Technological University, has suggested that Nadine may be particularly useful as a companion for individuals who are living with dementia. She is quoted in Reuters as saying, “if you leave [individuals with dementia] alone they will be going down very quickly. So these people need to always be in interaction.”
With human-like features and emotional intelligence to boot, Nadine provides an interesting example of the creative ways in which technology could address the needs of people living with dementia. We recently highlighted another example: the story of “Paro” the harp seal, a Japanese automoton that was one of the earlier robotic inventions to be used in dementia care. However, it remains to be seen if this new technology will ultimately be put to use in individual and institutional care settings.
In the meantime, if you would like to see Nadine the humanoid robot at work, don’t miss this YouTube video of Nadine interacting with Professor Thalmann.
Thank you for reading and have a great weekend,
A recent decision arising from the British Columbia Court of Appeal addresses the ability of an elderly Alzheimer’s patient to provide consent to personal care decisions without speaking.
Bentley v. Maplewood Seniors Care Society involves a petition brought by Margaret Bentley’s daughter and husband to prevent Maplewood, the care facility in which Margaret has been a patient since 2009, to cease providing food and water to Margaret.
At the time of the hearing, Margaret was an 83-year-old woman who had been afflicted with Alzheimer’s Disease since at least 1999. Consequently, Margaret would sit “…slumped over in a chair or in bed most of the time, with eyes closed. She has not spoken since 2010 and does not appear to recognize anyone”.
Margaret’s family relied on evidence from as far back as 1991, including a living will (otherwise referred to as an advance directive), expressing Margaret’s wishes that, amongst other things, if there was no reasonable expectation of recovery from extreme physical or mental disability, she be allowed to die (and not be provided with nourishment or liquids). Interestingly, Margaret was a nurse in earlier years, who had experience with patients in ‘vegetative’ states due to Alzheimer’s Disease. Accordingly, one may think that these decisions were well thought out.
Maplewood argued that Margaret opened her mouth to accept nourishment or liquid. Should Margaret keep her mouth closed, as she did when at the dentist, or keep her teeth clenched, they would respect her decision and not attempt to feed her by means of a feeding tube or any other medical means.
The lower Court Judge considered various evidence from general practitioners, finding it significant that Margaret “…indicates preferences for certain flavours and eats different amounts at different times…”, and that the petitioners (family), had not established that Margaret’s behaviour was a mere reflex.
Importantly, the family did not seek to have Margaret declared incapable. Therefore, the Court found that Margaret consented to being given food and water by holding a spoon or glass to her lips. This did not amount to prodding and prompting. Since Maplewood did not go further when Margaret kept her mouth closed, their actions were within the scope of Margaret’s consent.
There is a new diet out there and it has been given the name of the MIND diet.
The MIND diet was developed by the researchers of Rush University Medical Centre which, if followed, may reduce the risk of developing Alzheimer’s disease by 53% according to their study. The MIND diet is purported to slow the rate of cognitive decline regardless of risk factors such as genetics, smoking and exercise.
The MIND diet is comprised of green leafy vegetables, other vegetables, nuts, berries, beans, whole grains, fish, poultry, olive oil and wine. It also provides for a list of foods to avoid which I excerpt from WebMD as follows,
- Red meat: Less than four servings a week
- Butter and margarine: Less than a tablespoon daily
- Cheese: Less than one serving a week
- Pastries and sweets: Less than five servings a week
- Fried or fast food: Less than one serving a week
Hope you’ve enjoyed this food for thought!