Working while caregiving can take a big toll on you. Caregivers who have full-time day jobs suffer from poor health, low work productivity, and emotional burnout and breakdowns. The important thing is to always get enough sleep, and keep your nutrition up—take vitamins. You have to keep a disciplined schedule. Wake up at this time, do you, then do Grandma, then do you again, then do Grandma once more and be off to work. After work, come home and do Grandma, then do you, then do Grandma till she falls asleep, then do yourself once more and go to bed. Somewhere in-between the Grandma and the you and the work, don’t forget to do God. [more inside]
People living with dementia do not expect web designers to cure the symptoms, and many people recognize that it isn’t always possible to apply each dementia-friendly web design lesson when building a site. But the combined use of some of these lessons can help many people live well with their conditions. It is important to remember that dementia presents in many different forms, its symptoms are varied, and many of these symptoms are also common to other degenerative illnesses, in particular, conditions which hinder the social inclusion of the elderly.[more inside]
Drugs in the class "Anticholinergics", which includes Benadryl, Dramamine, and an ingredient in Tylenol PM, have been associated with increased risk of dementia or other cognitive impairment. [more inside]
"Our findings provide compelling evidence for the existence of fungal infection in the central nervous system from Alzheimer's disease patients, but not in control individuals." Nature magazine just published a study that claims that Alzheimer's disease is caused by fungi. If this is true, this is amazing and incredibly exciting. (By the way, I've just noticed that our very own cstross was the one who shared it on Twitter.)
"Caring for a patient suffering from dementia means coming to terms with the frustrating paradoxes of memory and language." A thoughtful, philosophical first-person essay. [more inside]
For 40 years, Joel Dreyer was a respected psychiatrist who oversaw a clinic for troubled children, belonged to an exclusive country club, and doted on his four daughters and nine grandchildren. Then, suddenly, he became a major drug dealer. Why?
End of life planning is hard. There are checklists, like this set from Get Your Shit Together. There are practical tips for making things easier for whoever's dealing with your estate after you're gone, like the tech tips in this previously from MeFi's own Jessamyn. But in the murky middle between living completely independently and being incapable of managing everyday tasks lies a subtler and more difficult question: how to organize and manage your money when financial competence is one of the first areas to decline on the slide from mild cognitive impairment to dementia. SeekingAlpha contributor PsychoAnalyst has a surprisingly nuanced analysis of the steps self-directed investors can take to protect their finances from the underestimated risk of their own declining ability to make good financial decisions, and raises some points worth thinking about for folks beyond the site's investor wonk audience.
I am in my first month of nursing school. It is the early 70s and this is a three-year program, hospital-based, all practical training. It is my first day in my first ward...A remembrance, by English professor and disability studies scholar, Janet Lyon.
"Each of us is born uniquely and dies uniquely. I think of dying as a final adventure with a predictably abrupt end. I know when it's time to leave and I do not find it scary." Gillian Bennett, whose last words are captured in her eloquent farewell website, has died. (Trigger warning for suicide.) [more inside]
To commemorate the 300th Anniversary of the original Longitude Prize (won by John Harrison with the invention of a clock that could keep time at sea), UK charity Nesta has launched a new £10million prize to encourage inventors and scientists to find a solution to one of six problems facing the world. [more inside]
Coach Dean Smith once led the Carolina Tarheels to a record number of victories. Now, at age 83, dementia has robbed him of the memories of the victories his teams won and the players and families who he so greatly impacted. Tommy Tomlinson pens a thoughtful and elegiac article that's as much about dementia as it is about the Tarheels and the winningest coach in men's basketball* *at time of retirement.
De Hogeweyk is a self-contained dementia-focused living centre, complete with restaurants, cafes, a supermarket, gardens, a pedestrian boulevard, and much more.
Adults over 50 are the fastest growing demographic for online dating sites, according to a recently [sic] study from UCLA’s department of psychology. Yet while older adults often value companionship over passion and marriage, experts say frisky behavior by seniors should never be underestimated. “I hesitate to generalize that they’re only having gentle, intimate moments,” says Melanie Davis, co-president of the national Sexuality and Aging Consortium. “Older adults can have really hot sex.” But not, typically, in long-term care facilities.
Gabriel García Márquez has dementia and can no longer write. According to his brother, Jaime, the Nobel laureate author of One Hundred Years of Solitude and Love in the Time of Cholera is suffering side effects from treatment for lymphatic cancer that have accelerated the onset of dementia, which runs in his family. García Márquez has not written anything since his last novel, Memoirs of My Melancholy Whores, in 2007. Among the works left uncompleted will be the second half of his autobiography Living to Tell the Tale.
The Boston Globe reports that nursing homes in the United States continue to administer antipsychotic medications to patients who do not fit criteria for these drugs, in many cases to manage behavior considered disruptive by staff. For example, "in 21 percent of US nursing homes in 2010, at least one-quarter of the residents without illnesses recommended for antipsychotic use received the medications." Overuse of antipsychotic medications appears to correlate with nursing homes that have higher staff:patient ratios and to homes that house more people covered by Medicaid/Medicare. [more inside]
Alive Inside is an upcoming documentary exploring how listening to music can briefly return memories to patients who previously seemed completely lost to Alzheimer's. An excerpt can be seen here.
Dementia be Damned [via mefi projects] With dementia and brain related links, personal stories about good and trying times, and information about the latest research, it's a fascinating read about a woman with lots of personality and her amazing Mom. [more inside]
Does Football have a Future?: Football players are anywhere from five to nineteen times more likely than a member of the general population to suffer from a dementia-like illness. This is likely a result of Chronic Traumatic Encephalopathy (picture), neurodegeneration caused by receiving multiple concussions or even subconcussions that are not detectable around time of impact. CTE has been linked to other mood and behavior changes, including suicidal depression (a great review of the medical literature generally), and has been found in football players as young as 21. And, of course, there is the sometimes debilitating physical disability (either acutely or later in life) from playing a hard-contact sport. The NFL has a long history of adjusting safety standards in bits and pieces (e.g., legalization of the forward pass) to meet public concern over potential injury and disability from playing the sport, though still to some degree publicly denies a connection between football and brain damage. New Yorker writer Ben McGrath talks to football players (past and present), their families (often left behind by untimely death or dementia-twilight), franchise heads, and doctors to explore this history, the crushing legacy of sports injuries, and the question of whether it is possible to reform the rules to minimize the risk of concussion and thus the risk of CTE (if any such risk is acceptable). Would it still be football if such changes were to tone down the violence? (Yes, No [from iconoclast Buzz Bissinger]) And, uncomfortably: is the sport of football unethical for its players, even if entered into on their own volition? (previously in the New Yorker; previously on MetaFilter 1, 2, 3) [more inside]
University of Tennessee women's basketball coach Pat Summitt, the winningest coach in NCAA basketball history (men or women) has been diagnosed with early onset dementia. Regardless, she plans to continue coaching the Lady Vols for the 2011-12 season.
The Brain on Trial. Advances in brain science are calling into question the volition behind many criminal acts. A leading neuroscientist describes how the foundations of our criminal-justice system are beginning to crumble, and proposes a new way forward for law and order.
"We may someday find that many types of bad behavior have a basic biological explanation—as has happened with schizophrenia, epilepsy, depression, and mania."[more inside]
American football player John Mackey has died at 69. Mackey, who scored a 75-yard touchdown for the Baltimore Colts in their victory in 1971's Super Bowl V, suffered from dementia. His wife Sylvia petitioned the NFL to create the 88 Plan, a program that pays for health care for NFL veterans with dementia. By 2007, Mackey, then 65, could not recognize former teammate Ralph Wenzel or distinguish coffee from soup. When the 88 Plan (so-named after Mackey's jersey number) was implemented in 2006, the NFL maintained that the plan, and the 97 players who then qualified for its assistance, "doesn't imply any link between football and brain damage". [more inside]
Daughter of Horror (original title: Dementia) was a 1955 avant garde film featuring a noir style, a surrealist sensibility, and virtually no dialogue. A later version of the film even included an over-the-top voice over by none other than Tonight Show sidekick Ed McMahon, but like Blade Runner the flick is better off without the narration. Daughter of Horror is probably most famous for being the film playing in the theater overrun by The Blob. And with a few more surrealistic elements and peculiar dialogue added, this could have been done by David Lynch in a later decade. The film, recently featured on Turner Classic Movies, is available for free on archive.org.
Gore Vidal. Ralph Nader. Two men, praise worthy in the past, who perhaps now need to go home and take a nap. 2LYT
Match It For Pratchett is a campaign to match Terry Pratchett's donation of $1 million (half a million pounds) to the UK charity, the Alzheimer’s Research Trust. Since they started on March 15, they've raised over $34k. [more inside]
Love in the Time of Dementia Former Justice Sandra Day O’Connor’s husband, suffering from Alzheimer’s disease, has a romance with another woman, and the former justice is thrilled — even visits with the new couple while they hold hands on the porch swing — because it is a relief to see her husband of 55 years so content. (More on their story from AFP.) This is also the plot of the wonderful Alice Munro short story “The Bear Came Over the Mountain,” which became the recent movie Away from Her. [more inside]
A snoezelen room is a multi-sensory environment that provides comfort for people with severe mental disabilities. They tend to incorporate a combination of visual, aural, and tactile stimulii, but can take many different forms. The rooms generally offer soothing, non-directive therapy, but the effects are hard to quantify. While mostly used with children, some think the snoezelen can help those with alzheimer's or dementia.
Researchers have discovered men with an unusual form of dementia have a higher rate of vasectomy than men the same age who are cognitively normal. Okay, so maybe it should be that men think with their cojones? But will this be enough of a risk to outweigh the declared benefits of this procedure?
The links between some neurological disorders and increased artistic abilities are well documented. Some with decreased abilities elsewhere, such as those with semantic dementia, use it as a coping mechanism, whereas those with synaesthesia combine multiple senses to enhance their works. While some drugs, specifically LSD, can artificially produce synesthesia, that probably isn't a good muse.
WFMU's Beware Of The Blog offers 21 variations on the most famous novelty record ever, the creation of recording engineer and goofball Jerry Samuels. Along with the madcappery the original album (now a highly valued collector's item) features nifty audio trickery and other delights. (also, my man matteo tells me that I Balordis Italian version is a baffling mistranslation but it still sounds as nutty as the original. I make no guarantees on any of the other foreign language versions). Get 'em while their hot. This nut's off to hunt the squirrels.
Holocaust survivors with Alzheimer's are forced to relive Auschwitz. "At Baycrest's Apotex Centre, Jewish Home for the Aged in Toronto, 50 per cent of patients with dementia are Holocaust survivors for whom the loss of short-term memory condemns them, once again, to the death camps."
Charton Heston has symptoms consistent with Alzheimer's But he plans to continue to hold the position of NRA President, at least until the dementia means he can no long aim effectively.