The reason I've started the thread now is that I've read an evocative article. It's fairly shameless in how it plays with our responses to the plight of the older person with memory loss, but that's the point the author is trying to make. And in the process she vividly describes both the plight of the carer and the position of the care recipient.
I'd urge everyone to read it and to share it with your families.
https://theamericanscholar.org/hope-is-the-enemy/#.VhLSvPlVhBd
I just tried to read that article. I can't. I'm still too close to what happened to my mother over the last few years of her life.
Very well written.Gives me a different perspective on what my Mom is going through. The parallels are eerily similar. It also lets me have a deeper appreciation of her full time aide and of the patience it requires. Also the need for respite breaks every couple of months. Thanks.
I'll put training links, research links, observations etc into here, georgieboy, so please come come back when you can!
I've forgotten who knows and who doesn't so I'll quickly fill in the why:
Here in Australia, I've been working in disability and frail aged advocacy and information support since the late 1990s, when I moved from Queensleend to the Southern Riverina/north-east Victoria and changed careers from editing/proofreading to assistive communications and advocacy. For the last decade, I've specialised in supporting and coordinating disability and frail aged programs (establishing community programs, coordinating community resources, training advocates and self-advocates etc), moving into more of a case coordination role as well as program coordination for very frail aged community dwellers.
There's alzheimers in the family. There's rapid onset dementia (non alzheimers) in the wider family. There's early onset dementia in another branch of the family (that was devastating to witness, and indicative of community attitudes so quickly hushed up and pushed away). There are mental health concerns in the family: in my married family, nearly all the male line live with significant depression, mostly undiagnosed and untreated, and resulting in significant anger management issues that affect others. And it's all unrecognised and ignored, on purpose.
And I've been living with an acquired (traumatic) brain injury for almost 30 years (nearly as long as I didn't have it). That's changed the way I receive information when I'm stressed, how I process it and how I retrieve it. The last two processes are seriously impacted by necessary medications to prevent migraines, and by ageing.
Reading brain research, and caring info is both a hobby and a career thing!
The sorts of things I find include the NPR podcasts on brain science, The Hidden Brain. That's fun and informative!
I am the sole caretaker for my husband since he was diagnosed with Parkinson's about a year ago. We do think in hindsight that he was having symptoms a year or so earlier. His is late onset (really late . He still reads his tomes (my description) of historical biographies, travel, exploration, wars, etc. he draws and paints and watchs sports on TV. His balance is poor, uses a rollator in and out of the house, has trouble getting up or down in a chair.
What I was wondering was, is there a progression of symptoms to keep a watch out for? The former math wiz is beginning to have some difficulty with figuring things in his head -- no trouble with paper and pencil.
I read that article. It was difficult, but informative. He seems really anxious often, but so am I!
Any tips would be gratefully accepted
There's some new research on Parkinson's and MS, released in the last month or so. It's quite exciting and also fascinating, however I suspect that it helps people who are less affected than your husband.
Many people feel they are 'giving in' when they are introduced to assistive tools and aids (not aides) however later can see these have extended their independence. For instance, is he using 'sticky keys' and steady-screen/low flicker assistance for cell/iPad/computer etc? You'll find these under Settings>Accessibility. Also, it's not lazy or uneducated to emoticons for texting and email: deaf-signers and alternative-speech users rely on them to quickly capture mood and emotion when writing.
I'm sure you've been told or shown the info on using music and movement to help encode memories, then retrieve them. Music and movement feed the maths/codes part of cognition. While movement may be harder to manage now, some form of strength training exercise should be included a couple of times a week. (I used to run classes for people with such conditions) so you could use some of those motions to help with memory. I'll find a student study link that explains it.
If speech is still easy, try learning/practising another language, conversationally. You have to use different neural pathways, and making it aural engages other regions of the brain. Make sure you laugh and sing, too!
And I'd try some 3D puzzles, as a group exercise. He can supervise and solve, and do as much as possible, and everyone else help with fine-work. It's surprising the variety of puzzles and challenges there are these days, from Exactica to 3Dchess and dominoes, adult leggo, woodwork jigsaws you paint, etc.
It doesn't look it, but these are great memory tips, for everyone!
http://www.theguardian.com/education/mortarboard/2012/nov/06/how-your-brain-likes-to-revise for general memory 'fixing' and retrieval
http://www.theguardian.com/education/2014/jan/08/five-secrets-of-successful-revising retrieval tips, under pressure.
This link is for the benefit of different kinds of exercise for various parts of a person (mind and body), who is living with Parkinson's. I'm not sure how clearly similar information may have been explained to your family, previously. There are internal links for more info, at the end.
http://exerciseismedicine.org.au/wp-content/uploads/2014/05/2014-Parkinsons-Disease-FULL.pdf
It reminds me of a wonderful support program I saw written up, a couple of years ago, where people with conditions such as Parkinson's, MS, advanced osteoarthritis were partnered with dancing partners (PT assistants or exercise robots) for waltz sessions. Participants were encouraged to count steps aloud or sing with the music. Movement, music, fun, exercise. Even the participants dancing with the robots improved significantly in terms of leg strength, falls risk and mood elevation. I think it was a European or NZ study.
joanne said:
It doesn't look it, but these are great memory tips, for everyone!
http://www.theguardian.com/education/mortarboard/2012/nov/06/how-your-brain-likes-to-revise for general memory 'fixing' and retrieval
http://www.theguardian.com/education/2014/jan/08/five-secrets-of-successful-revising retrieval tips, under pressure.
This is probably a silly question -- but does "revising" in these articles mean something different in Australia from what it means in the US? They're using it in places where I'd expect to see "studying" or "memorizing" -- or maybe I'm just missing something. For me "revising" means changing the wording or structure of something to improve it, and that doesn't seem to fit either selection.
Revising, as in 'reviewing what you've already studied, so you can sit/pass that examination'.
In brain science/neuroscience terms, these are also good strategies to adopt for memory training and memory support. Around 15 years ago, when I first began to experience hormonal influences enlarging the weaknesses in my damaged and formerly-almost-photographic memory, I was told to think of my mind as a three or four-drawer filing cabinet. Everything we experience goes in there, mainly into the front of the top drawer. But only the first 9-15 folders are for quick reference! (That's our short term memory) Everything else has to be properly sorted, tagged and filed.
If you don't pay proper attention to that 'processing', you miss where you sort that file, that is, the neural pathway breaks down and you can retrieve the memory. Of course, some things are meant to be forgotten, others need to be prioritised etc.
I've just been reminded that the Lumosity genre apps are (yes, commercial) fun, easy and can help with some cognitive skills. Make sure you get a good app, use it daily and change the puzzles you play otherwise you won't strengthen all-round skills. Make sure you call for regular updates on skill levels, and support the app playing with real-life exercise and activity so you change your focal points and reflex times.
For carers: make sure you line up professional emotional support and training. In the middle of it, you can't tell how much the strain of care and worry is affecting you or your health and other relationships.
https://www.nlm.nih.gov/medlineplus/news/fullstory_154932.html
A small study on training yourself to multitask:
http://www.abc.net.au/news/2015-10-13/brains-secret-to-multitasking/6847454
Multitasking is seen as a useful skill in older adults, as more neural pathways are engaged at one time. This means we have more, active areas of our brain so if one part is injured or permanently damaged, another can take over part of its functions. (We know that adjacent areas already tend to do some of that) Also, as we age and falls become more of a concern, a more engaged awareness tends to indicate better reflexes so our safety may be a little less at risk.
What about the role of exercise, I am talking balancing exercises for seniors? my personal trainer just added those to my routine, and I am shocked by how little I can do without loosing my balance. No wonder I fall all the time. Don't exercises work? Isn't that just a muscle, like playing tennis, that needs to coordinate eyes with body positioning? doesn't that practice help?
Balance and falls info is mainly in the general health threads in this category. The really big news in falls prevention, though, is the role that infection plays, and that lack of speed and length of stride (too short) play. Your trainer will understand this.
We've spent a lot of time telling people, for the last 40 years or so that hey have to be careful of their footwear, their rugs, their speed, how they place their feet on the ground etc that they keep looking down, shorten their stride and sway too far with each step. If peripheral vision and reflexes are maximised (using all your awareness), and your leg strength optimised, then as long as you keep your chin up and in a straight plane with your shoulders, your balance should improve, and your recovery from stumbles improve.
Games such as the Lumosity games which can be set to vary and to challenge spatial awareness, activities such as swimming, indoorclimbing, trampolining, juggling, throwing hoops, yoga/snooker all help to change focal points and pivot your central axis safely. In turn, this helps with falls proofing.
A brain science paper published on PLoS on 6 October reported very interesting findings about the way our brains handle visual information and transmit that information into practical reality for spatial reality (where we are, how solid things are, how fast things move etc).
Unfortunately it's a very technical paper, and even the summary is very technical; I can barely interpret it let alone summarise for someone else. Let me say that the researchers studied how the information is received at the front of the brain, how this is transmitted through a central neural 'highway' to regions at the back and mid-back of the brain for analysis and response, and then then resulting messages flood through our bodies to carry out appropriate actions. People with faster processing and stronger 'neural highways' tend to be people with better/wider peripheral scanning, ability to turn head/torso, balance better, have firmer grip with either/both hands - in other words, people who maintain sensory intake on both sides of their body, for all senses.
The best ways to do this and to keep the speed up for processing, seems to be the kinds of lighthearted games where you change focus and speed such as tennis, table tennis, ball/frisbee tossing, backyard footy or baseball or hoops, musical keyboard playing (yes, better than strings, but any instrument is good), dancing, walking if you can change directions and pace... The key is the change of focus as well as the change of information speed.
Not for every exercise session! Maybe once or twice a week, to challenge yourself. And keep the yoga, tai chi, strength training etc. for other sessions, to maintain other skills.
In another Seniors thread someone asked about 'sun downing'.
As several of us know, the 'confusion' and 'delirium' we speak about with an ageing indidual aren't the recognised conditions you'd see in a younger person. And it's hard to explain how everything is just 'off'; it's like the synch in our world and theirs just doesn't work anymore.
When this happens at a regular time of day, or when there is a regular pattern of agitation/anxiety/aggression/suspicion/bewilderment... We call that 'sundowning'. It's more usual at late afternoon/early evenin but can be in early morning, or any time,
https://fightdementia.org.au/national/support-and-services/carers/behaviour-changes/sundowning
Still on sundowning, this site has lots of help...as you read, there are around 70 conditions with signs that cluster like sundowning, so not all 'sundowners' have dementia. Make sure that ALL causes are thoroughly investigated and controlled, don't be fobbed off with explanations of age and frailty (see some of the comments in the site to understand this)
http://sundownerfacts.com/sundowners-syndrome/
I just read that Robin Williams killed himself because he had Lewy body dementia. Hard to believe in someone we would not ordinarily consider old enough for dementia, but he was heading downhill and decided not to wait until he had to be put in a facility. It is so sobering to realize these horrible disorders don't necessarily wait until we are truly "old."
I remember stories at the time, that he'd just recently had the diagnosis, and the family were quick to scotch them, threatening to take legal action against anyone making such 'outrageous claims' and instead actively pushing the depression angle.
It's incredibly sad that internal family pressures and stigmas mean that people who love and support can't get that from loved ones, whether it's mental health, increasing frailty, chronic ill health or terminal illness.
In my (not very long) lifetime the stigmatised illnesses have changed a bit, from misunderstood infectious diseases to poorly managed 'lifestyle' choices and mental health stuff (incl dementias). I'm just tired of all the secrets and supposed-judging or labelling.
Fairly exciting news in dementia prevention circles this week, in several countries. But as yet no actual 'cure' or 'prescriptive plan' guaranteed to work. It's all confirming what we've been told over the past couple of years: what's good for the heart is good for the brain. It's just that now we can see how this works
In the USA, this study has confirmed the brain/cognitive benefits of physical exercise as people age.
https://www.nlm.nih.gov/medlineplus/news/fullstory_155694.html
And in Australia, Prof Perry Bartlett has received the Howard Florey Medal for his work with stem cells. In itself, exciting but seemingly not directly dementia linked until you hear him speak...
http://www.abc.net.au/pm/content/2015/s4349845.htm
He and his team have reversed dementia in old mice, using exercise that the mice like to do. It's aerobic (walking), not insanely fast or long, and there's a 'sweet spot' of benefit: too little or too much and you don't get the result. (I love listening to his passion as he explains 'once we knew you can make more neurons in the hippocampus, we just had to work out how to use them'. (My paraphrase)
A link to an article on earlier Bartlett research, showing that we need to get more fractalkine flowing in our brains, to keep our learning and remembering working.
http://theconversation.com/molecule-may-be-key-to-halting-early-dementia-6947
So now I'm picturing little grey mice using itty-bitty walkers with tiny yellow tennis balls on the back legs ... And wearing tiny spectacles.
me too, when I heard him. Prof Perry said with the mice, it's treadmills, because they love those little wheels even when presented with other exercise options (mazes, climbing, etc).
Big grin: I found the BBC report on The Lancet article on dementia diagnosis rates!
http://www.bbc.com/news/health-34001144
I found the report interesting because it covered similar ground to a much earlier study, in order to compare the diagnosed population numbers.
I rediscovered that earlier link while reading article on early signs and symptoms that have previously been ignored.
There's been a steady stream of such articles this year, most of which I haven't bothered to bring to your attention: you either already know this level of info, or else it can be viewed as scaremongering. This next link, however, is a good pointer to having a total-health checkup just to be sure nothing's gone awry. Lots of little things can impact on brain health, not all are dementia-significant, and not all are irreversible if caught in time.
http://www.bbc.com/news/health-34766361 A change in your sense of humour may signify the beginning of memory loss or brain damage.
A small study into walking gait and pace, and possible links with Alzheimer's or dementia has been reported. I have to admit I'm not totally surprised with the findings: there's a potential link with slower walking pace and the beginnings of plaque build-up in the brain, in an individual who's mid-70s.
What this means, in effect, is what all the earlier studies have been reinforcing for balance, strength and cardio fitness: start a good general fitness program for balance and flexibility, makes its varied and enjoyable, and keep doing it. This will ensure you maintain a balanced, even stride at a good rate with little effort.
https://www.nlm.nih.gov/medlineplus/news/fullstory_156007.html
I'm also going to post this in the general health thread.
We've often wondered about the risk of developing memory loss, and some of the associated behavioural challenges, that we see in our older loved ones. Some of us truly dread knowing it could happen.
Now there's a test that our doctors can run on their computers, with a fairly good chance of accuracy. BUT NOT IF WE ARE 80years or older! The test is only good for younger-oldies.
https://www.nlm.nih.gov/medlineplus/news/fullstory_156836.html
A couple of weeks ago, in another Seniors thread, we discussed having a thread for brain/cognition concerns, research and caring. It's all so broad and so overwhelming, it's hard not to drown in what needs to be done, and it's hard to know where to start.
And a lot of will be covered here is tough because insurance folk and federal health departments make arbitrary rules that define these brain issues as NOT mental health matters (even though they're often intertwined) and ARE age-defined even though you can be younger than 65 years old when diagnosed.
So. Let's start a conversation around dementias, altered realities, deliriums, impaired cognition, different perceptions, altered or impaired communication, memory loss, and such things. Let's consider those who live with these conditions, the people who live with them and who love and support them, and brain science that helps us understand what's going on.
I might change the title of the thread later on. I don't want it to be cliched, and I don't want it to be too confronting.