Some people prefer Facebook more than websites. In the interests of broader public education, a new Lewy Body Dementia page on Facebook has been launched. Whenever I see something that is significant or valuable to the community, it will be posted there. Every post will be personally analyzed to ensure a higher level of trust and legitimacy and will have a summary or comment to allow very quick scanning, to keep the page easy to search, and to save you time in case a specific article is not going to be what you’re looking for.

Below, you’ll find the five most recent posts, which is automatically updated. There is a great deal of online content that is specifically intended to manipulate, provoke, deceive or get visibility for the wrong reasons. Finding, reading, researching, and analyzing each article takes significant time, and I want only the best and most trustworthy to appear.

Click the LewyBodyDementia.ca Facebook page and “like” it to see most of them on your Facebook timeline as they are added. I will ensure that this is never overwhelming, off-topic, or insensitive.


LewyBodyDementia.ca
LewyBodyDementia.ca9 hours ago
There are lots of male caregivers. They're just invisible, and silent. Over the past several years the percentage of carers who are male has risen to 40% of the 40 million Americans caring for a loved one. That is surprising to me, since I can think of the active male participants in online and in-person groups on one hand, while I'd need many hands to count the females.
> The article provides two insights, both of which I am personally representative of, as a male. Firstly, the tendency to keep things bottled up, and not share emotional trauma, nor open up to others because of a need to feel -- and to project -- that "I've got this under control." Secondly, the awkwardness and discomfort of assisting with personal care -- such as bathing and toileting -- which the article largely attributes to fewer men participating in bathing and feeding infants (for which I'm utterly unfamiliar).
> A personal goal with the Lewy.ca website and outreach is to empower more men as well. I don't feel uncool, weak, or emasculated by being a carer: I feel it is an incomparable test of strength, versatility, and adaptability. To me, a long-term carer is a superhero with real super-powers.
> May the barriers of perceived expectations of gender-roles diminish to allow more people to rise to the real challenges, that test and prove their strength of character and abilities. Strength to all. Timothy Hudson.
Article -- http://www.aarp.org/home-family/caregiving/info-2017/the-hidden-male-caregiver.html
Full research paper -- http://www.aarp.org/content/dam/aarp/ppi/2017-01/Breaking-Stereotypes-Spotlight-on-Male-Family-Caregivers.pdf
LewyBodyDementia.ca
LewyBodyDementia.ca1 day ago
How long? New lifespan reduction projections have recently appeared for Lewy Body Dementia, Parkinson's, and Multiple System Atrophy (MSA), all of which are on the spectrum of neurological disorders related to α-synucleinopathy, the mis-folded proteins of Lewy Bodies. All conditions resulted in a shortening of lifespan.
> Here's how many years fewer than average: MSA took off six years, LBD four years, PDD 3.5 years, and PD one year off a person’s lifespan.
> The original article was from the Mayo Clinic, but the first article seems a fair interpretation. I've included additional links for any who want more comprehensive information. Strength to all! Timothy Hudson
- Summary: http://www.alzforum.org/news/research-news/synucleinopathy-how-long-you-live-depends-which-one-you-have
- Full neurology journal article: http://jamanetwork.com/journals/jamaneurology/fullarticle/2625134?resultClick=1
- Press Release: https://www.eurekalert.org/pub_releases/2017-05/mc-soa051517.php
- Mayo Clinic source article -- http://newsnetwork.mayoclinic.org/discussion/study-offers-answers-on-life-expectancy-for-people-with-parkinsons-disease-lewy-body-dementia/
LewyBodyDementia.ca
LewyBodyDementia.ca2 days ago
A great, wide-ranging set of tips on how to prepare your home to care for a person with dementia. Covers Bedroom; Bathroom; mobility; fall prevention; Paint colors, flooring, lighting and mirrors; medications; kitchen + laundry; Identity theft, scams and finances; storage of dangerous items; having others in the home; Leaving the home unattended and getting lost; and, general safety.
> Even if you're a fair way along in the LBD journey, this provides some very useful insights, which are worth being reminded of, even if you know them. How's that for a great start!
> Strength to all! Timothy Hudson
http://www.aarp.org/home-family/caregiving/info-2017/dementia-care-home-safety-tips-ag.html?intcmp=AE-WOR-ENDART-REL1
LewyBodyDementia.ca
LewyBodyDementia.ca2 days ago
New study shows caregiver stress actually had very little impact on whether and when the people they care for were admitted to long term care. Unsurprisingly, the deciding factors typically are severe functional and cognitive impairments (e.g. LBD/dementia), and/or multiple chronic conditions requiring multiple medications, or previously spent time in a hospital or other care facility.
> Carer quoted in article has several valuable perspectives, including:
- The general lack of education for carers, leaving her ill-equipped to handle the most challenging of the behaviours of dementia.
- Learning how to manage despite inadequate caregiving respite/support.
- Handling the emotional impacts
- Handling the health impacts on those receiving care: belief that loved one “is not receiving the care and medications that might help address some of the symptoms of the disease. My father’s stress and lack of proper rest is taking a toll on his health and recently prompted a trip to the emergency room.”
> To me, the "takeaway" from this is to be as educated in the area as possible, in all aspects: developments, specialists, local help options, convincing and allowing others to help, knowing what is a "danger sign", behaviour management. If you're reading this, you're already well on your way in all these things. Strength to all! Timothy Hudson
https://www.mcmasteroptimalaging.org/blog/detail/blog/2016/09/07/does-caregiver-stress-affect-the-move-to-long-term-care
LewyBodyDementia.ca
LewyBodyDementia.ca3 days ago
Grief and despair happens throughout the time caring for a person with a critical illness like Lewy Body Dementia. This may help guide people on the periphery of care, who care about the carers. You can make an enormous difference. Rather than "offering" to do something, DO anything.
> The classic line "what can I do to help," needs to be turned around, to NOT put the burden upon the person needing help then feel like they're asking for something. Just do something. Anything. Show up. Bring something. Call. Don't be afraid to say the wrong thing: it's better than nothing.
> Might be worthwhile for carers to send this to people who mean well, but haven't acted on their intentions. I have been afraid or ashamed or unsure, and then done nothing in the past, myself. Now I know different. Maybe this will help another person step up. And remember, that may make them feel better too -- you may be actually doing a person a favour by letting them know how to help.
> Strength to all! Timothy Hudson
http://www.npr.org/2017/04/25/525453115/just-show-up-sheryl-sandberg-on-how-to-help-someone-whos-grieving
LewyBodyDementia.ca
LewyBodyDementia.ca4 days ago
Late stage Lewy Body Dementia is difficult to manage, not necessarily more than early, but different understanding and adaptation is needed.
> I think this should be treated as suggestions of what to do throughout, not just "at the end."
> For example, I like the suggestion that knowing that during latter stages, your loved one may have periods of lucidity when they are able to recognize you, it's prudent to use this time to talk to your loved one and say what you need, to help give you some closure. However, I think this should be done throughout, never saving for later, because lucidity is also quite likely not to return, and one should not miss the opportunity to say your peace.
> I like the admonition to educate yourself, and to consult professionals. Again, I see this as something to do throughout.
> Worth a read, nevertheless -- even despite the cliche photos of models too :)
> Strength to all! Timothy Hudson
https://www.telmenow.com/2017/01/dealing-with-late-stage-lewy-body-dementia/

I am not entirely sold on the idea of Facebook, but I absolutely agree it is critical to get information out to the broader public. If this doesn’t work well, it will be retired. Make sure you join a support group for Lewy Body Dementia — there are options online, by email, phone or in-person.

Strength to all!
Timothy Hudson

Updated May 7, 2017