Please note another resource: ftdtalk.org
They’ve blogged recently about a world FTD awareness WEEK in October: http://www.ftdtalk.org/world-ftd-awareness-week/ Let’s join in!
I’m very proud of my last Univ of Toronto grad student, Adam Agate’s Masters of Science thesis. Pls see abstract about what needs to happen to make the future more dementia-free:
BACKGROUND: “Brain health” describes a wellness maintenance approach to optimizing cognitive, mobility, and behavioural function throughout the lifespan and encompasses, in addition to prevention of dementia, the stabilization of mood and emotion. Because a greater impact on modifiable dementia risk factors may result from the proactive prevention of related disorders (e.g., diabetes), more so than the reactive management of those disorders in mid-life, it behooves us to stoke brain health motivation among high school students. This may only be achieved by first clarifying high school students’ current understanding of brain health and how this impacts their decision-making of brain health behavior adoption. However, there is a dearth of research exploring adolescent’s concept of brain health.
OBJECTIVE: The goal of this qualitative, content analysis study was to understand the views about brain health held by high school students in grades 9 and 10, and how this impacts their adoption of brain healthy behaviours.
METHODS: Three semi-structured focus groups interviews explored attitudes of and experiences with brain health amongst 23 high school adolescents in the Greater Toronto Area. In addition, I surveyed the students’ definition of “brain health” and its importance in their lives. Thematic analysis on transcripts from the focus groups was conducted by three independent coders.
RESULTS: Three themes emerged from the data analyses regarding participants’ views of brain health: (1) Ambiguous Definition, (2) Lack of Understanding and (3) a Struggle for Relevance.
DISCUSSION: These themes contributed to adolescents feeling disconnected from the topic of brain health and therefore from its impact on the present and future. This disconnection emerged as a barrier to the adoption of healthy brain health behaviours, as participants described how the feeling of disconnection from brain health left them unable to actively make decide in favor of brain health.
CONCLUSION: This study found a major divide between the youth of our generation and the topic of brain health. This disconnection needs to be addressed through education efforts that build adolescents’ understanding about brain health while framing it as relevant in their lives. There is both a demand and need from students for the creation and implementation of meaningful learning experiences about the brain.
In case you were waiting for kids’ education on dementia in the Welsh language, here it is, http://www.baycrest.org/research/rotman-research-institute/labs-and-programs/chow-lab/
Courtesy of Betsan Juckes-Hughes of CPN Younger People with Dementia at Betsy Cadwalader University Health Board. Way to expand our international outreach, Betsan! [BTW, she’s been a delight to work with.]
The latest in a cry for help from pharma? On the one hand, we need pharma to keep investing in CNS research, which has an abysmally low hit rate for discoveries that make it to market and treat dementia. On the other hand, we have the federal appeals court to help protect us from shell games. See http://www.wsj.com/articles/actavis-must-keep-selling-old-version-of-alzheimers-drug-namenda-court-rules-1432326861 for recent shenanigans. [And by the way, not all of us prescribe the longer-acting version of memantine anyway.]
The tetrahydrocannabinol (THC) element from marijuana was used at low dose in patients with dementia-related (not necessarily Alzheimer’s disease) behavioral or mood disturbances. There was no difference in improvements for activities of daily living or quality of life for the patients compared to those taking placebo, but the study was designed to demonstrate safety of using at least low dose THC, as opposed to ruling in or out THC as an effective treatment. This study’s result paves the way for trials at higher doses.
Source: van den Elsen, GAH et al. Tetrahydrocannabinol for neuropsychiatric symptoms in dementia. Neurology 2015; 84: 2338-2346.
See https://wordpress.com/post/56852946/191/ for prior post on this topic.
[Sent to me by a Toronto caregiver. Writer is anonymous.]
Do not ask me to remember
Don’t try to make me understand
Let me rest and know you are with me
Kiss my cheek and hold my hand
I’m confused beyond your concept
I am sad and sick and lost
All I know is that I need you
To be with me at all cost
Do not lose your patience with me
Do not scold or curse or cry
I can’t help the way I’m acting
Can’t be different though I try
Just remember that I need you
That the best of me is gone
Please don’t fail to stand beside me
Love me ’til my life is done
NY Times obit summarized the important work of Dr. Li – his lab talked with families that seemed prone to cancer and then did the genetics to crack codes of cancers. That he developed Alzheimer’s and died from it by 75 reminds us that although educational level and engaging problem-solving careers can be protective against dementia, those effects are not guaranteed.
Here’s another study that compared aspects of some job descriptions and implies some protective effect in late-life. Specifically, they used O*NET designations of what particular cognitive skills are used on the job to compare jobs and late-life cognitive decline.
In a nutshell, individuals with work that emphasized executive, verbal, or fluid intelligence traits were less likely to show cognitive decline (mild or into dementia) later in life, beyond retirement. Examples of those traits were not listedin the paper, but first author, Dr. Then of the University of Leipzig, was kind enough to send me more information:
Worth noting: you don’t have to be a CEO or hold an advanced degree to qualify!
O*NET is at http://www.onetonline.org if you want to see how this works. The study is by F.S. Then et al. Differential effects of enriched environment at work on cognitive decline in old age. Neurology 2015;84:2169-2176. The title makes it sound like what kind of office you have makes a difference, but this is more about how you use your mind while at work!
This is a summary of paper just published in Neurology:
Neurology. 2015 May 19;84(20):2070-5. doi: 10.1212/WNL.0000000000001595. Epub 2015 Apr 22.Occupational attainment influences survival in autopsy-confirmed frontotemporal degeneration. Massimo L et al.
The authors compared the survival plots for autopsy-confirmed cases of FTLD* and of Alzheimer’s disease, stratifying those patients according to job descriptors. Operative and service workers survived for a shorter amount of time after symptom onset than craftsmen, foremen, managers, administrators, clerical and sales workers (50% of each group had died at a little over 2 years vs. 4 yrs, respectively). And the highest attainment group, defined as professional and technical workers, had a 50% survival rate of approximately 8.75 years.
*FTLD in this case consisted of 64.7% behavioral variant FTD, 11.7% semantic dementia, almost 6% the other 2 primary progressive aphasias, 11.8% corticobasal syndrome.
Note that duration of illness at time of diagnosis varies, depending on when a caregiver recognizes a symptom as significantly different from baseline behavior or cognition. Of interest was that education level itself didn’t matter as much as highest occupational title during the individual’s career, which is likely an indicator of cognitive reserve that can run independent of formal educational level. We think cognitive reserve serves to make people more resilient to the buildup of abnormal proteins that develops to cause (and sometimes incidentally due to) the dementia process.
Men had longer survival than women with FTD, but I could not find the number of years of months of difference within the article. Given the ages of these patients (average 60.6 yrs), male sex might correlate with higher occupational attainment.
The occupations did not make a difference for survival in Alzheimer’s disease.
Among my own clinic patients, I saw survivals very commonly up to 10 years after diagnosis. This may reflect the patient populations served at UCLA, USC and Baycrest, who would have mainly fit into the middle and highest attainment groups described above.
Of course there are many variables that sort out with occupational attainment, not the least of which may be access to resources that improve overall health and therefore survival. I look forward to Penn’s next report arising from this paper!
Try website to help friends and family organize around you without having to send repetitive emails or have your phone ringing off the hook when you have your hands full– see NY Times article that highlighted one site called CaringBridge. 2/3 of the “communities” on one site were started by women, which makes sense, since women typically pick up the caregiver role.