#lewybody

[treebreadcares]

Treatment Needs of Dementia Patients Study in Japan

Treatment Needs of Dementia Patients Study in Japan

This study provides insight into the treatment needs of patients with dementia with Lewy bodies (DLB) and their caregivers, and the extent to which the attending physicians understand these treatment needs. Through an observational study using questionnaires for patients, caregivers, and physicians, this study explored the top treatment needs of patients and caregivers and the concordance rate between patient-physician and caregiver-physician pairs. Read the full article

[finishinglinepress]

FLP CHAPBOOK OF THE DAY: In Lewy’s Body by Vera Kewes Salter

On SALE now! Pre-order Price Guarantee: https://www.finishinglinepress.com/product/in-lewys-body-by-vera-kewes-salter/

Vera Kewes Salter is a care partner for her husband of fifty years who has a diagnosis of #Lewy #Body #Dementia. They live in New Rochelle, New York. Her work has appeared in Red Eft Review, Nixes Mate Review, Prometheus Dreaming, Medical Literary Messenger, Judaica Mismor Anthology, Right Hand Pointing, Persimmon Tree, Writing in a Woman’s Voice and other publications.

PRAISE FOR In Lewy’s Body by Vera Kewes Salter

The lyric poet, Gregory Orr writes, “Poetry is the thread that leads us out of the labyrinth of despair and into the light.” Vera Kewes Salter, in her debut chapbook, In Lewy’s Body, fully understands the crucial role poetry can play in ferrying one from the deep waters of extreme suffering to the shores of grief. In these moving, terse, unsentimental poems, Salter grapples with her beloved husband’s battle with Lewy Body Dementia and all the complexities that come along with becoming caregiver to a spouse and watching, helplessly, as your life partner slowly loses autonomy. Salter extends her empathy to both the speaker and her husband in these finely crafted lyrics, rich with metaphor. “And as the snow falls, we find a way to feed the birds.” This fine debut collection will be a comfort and a companion to anyone experiencing life-changing loss.

–Jennifer Franklin

Vera Kewes Salter‘s In Lewy’s Body is a remarkably candid and generous book. The poems collected here illuminate Salter’s experience as the wife and caregiver of a man who is slowly succumbing to Lewy Body Dementia. A man who forgets to eat and take his medications, hallucinates, and struggles to put on his own socks. All of this prompts Salter to ask the following question at the end of the very first poem in the collection: “How much is love and how much duty?” The nineteen poems that follow serve as her response. These poems delve into the hardships and dread of daily life, but also the small victories and moments of quiet tenderness. It is a profound privilege when a writer is willing to share such intimate details from her life. And we are all the more privileged because Salter’s poems are so carefully rendered and so deeply felt. I highly recommend this poignant collection.

–Corey D. Cook, author of The Weight of Shadows and Junk Drawer (Finishing Line Press)

Please share/please repost #flpauthor #preorder #AwesomeCoverArt #poetry #chapbook #read #poems #LewyBody #dementia

[dementia-by-day]

Only 3 Questions You Need in Dementia Caregiving

These are my best 3 tried-and-true questions that you need in dementia caregiving. Are you ready?

1. “Where do you think they are?”

This is the question that you’re going to use with someone who has dementia when they are talking about a loved one who has passed away. For example, perhaps your mom is saying, “Hey, where’s my dad?” You know that her father (your grandfather) died years ago, but saying, “Don’t you remember? He’s been dead for years!” is a terrible answer. Let’s figure out where her reality is so that we can embrace it! Ask her, “Where do you think he is?” and then repeat that answer back to her. For example, it may go like this:

“Where’s my dad?” / “Where do you think he is?” / “I think he’s at work.” / “That sounds right, he must be at work.”

The great thing about this answer is that it takes you completely off the hook: you don’t have to come up with anything, and you won’t accidentally give them the wrong answer! I spoke to a staff member at a local SNF recently who told me about the wrong answer she gave one of her residents. “Uhh…I think your husband is at work,” she offered. “My husband is on disability, so he doesn’t work!” the resident called back, annoyed.

If the person you are caring for believes that their loved one is dead, you can also confirm this. The trick is to always repeat their answer back to them. You can also reuse their answer, without re-asking the question, multiple times in a row!

2. “What do you think about this?”

This is the question that you’re going to use when introducing a stuffed animal or baby doll to a person with dementia. Just like in the first question, we give the person with dementia the opportunity to tell us what THEIR reality is! We don’t want to introduce a stuffed dog and say, “Look at this real dog!” because they may say, “That’s not a real dog.” Let them guide you to what their reality is, and then do that.

3. “Can you help me?”

If you ask someone with dementia if they “want” to do something, what will they probably tell you?

They’ll probably tell you, “no,” even if they may have been interested in the thing you were asking about. If you ask someone “for help,” you’re actually asking a completely different question! I’ve done this many, many times with people who have dementia. The phrase, “Do you want to help me?” or, “Do you want to…” is very different from, “CAN you help me?” “Can you” inspires a sense that you are the one needing assistance, and everyone wants to feel helpful and needed!

Like this article? Follow me here

Love this list? Buy it in poster form on my website!

[gerination]

Late Afternoon by Louise Bagnall

[wholecarenetwork]

PWDP Ep 18: Dr. Susan Nelson Talks Finding Help, Delirium, and Travel

[laboricuagurl]

October is Lewy Body Dementia Awareness Month. Lewy Body Dementia (LBD) is one type of dementia that is similar in some ways to Alzheimers but has it's own different challenges. LBD is a type of progressive dementia that leads to a decline in thinking, reasoning, and independent function due to abnormal microscopic deposits of a protein called alpha-synuclein, which damages brain cells over time. Researchers don't know exactly why these deposits form but through continued study and analysis, have gained a better understanding of this challenging condition. Currently, there is no cure for this disease. As someone who has lost a loved one to Lewy Body Dementia, I have committed to donating a part of the proceeds from the sale of my children's books, "Loving Lulu" and "Lulu Amorosa" to the Lewy Body Dementia Association (LBDA). The LBDA is an organization committed to advocating for, educating, and supporting those affected by Lewy Body Dementia. "Loving Lulu" and "Lulu Amorosa" will be available on November 2nd, 2020 in honor of my Mother on her first heavenly birthday. For more information or to seek resources, please visit lbda.org. Thank you for your support. ❤ #Dementia #LewyBodyDementia #LewyBody #MentalHealth #HealthCare #WomensHealth #LovingLuluStories #LovingLulu #LuluAmorosa #ChildrensBooks #FamilyMatters #Family #FamilyTime #Memories #ThankYou #Donating https://www.instagram.com/p/CGGi919lOQz/?igshid=uio7gv3fbn1y

[melodygraywitchbackup]

Frostys for Molly! #MollysMovement #LewyBody #dementia #lewybodydementiaawareness #alzheimers #awareness # (at Wendy's)

[seniorlivingsolutions-blog]

There's always been something that I'm very passionate about when it comes to Dementia. It's the fact that Dementia is the Umbrella Disease and Alzheimer's is only ONE type of several types of Dementia that exist. With that being said, I decided to create a chart for everyone to print, share, learn from and help provide everyone with a better understanding. We shouldn't be raising money ONLY for Alzheimer's, we shouldn't have 5K and 10K races to raise money for Alzheimer's only. We should be raising money to find a cure for Dementia. 

Article Source: #StephanieMerritt #nsseniorlivingsolutions 

#aging #senior #dementia #alzheimers #lewybody #vascular #seniorliving #memorycare #memory #brain memoryloss

[shakespeareslonglostcousin]

The Concept of Change

“Nought endures but mutability.” Percy Bysshe Shelley

Mutability. Mutate. Change. Now we get the quote…and he’s right.

When I learned and embraced the concept that the only thing in life (besides God) that you could count on was change, it was a relief for me. It freed up quite a bit of expectation and anxiety in my brain and I was grateful. 

In my brain, when something truthful is heard, it frees up space for things that can be enjoyed and knocks out something that has been renting space. I figured that out long ago and I’m grateful. 

Now, about that change part. 

It’s one thing to embrace the logic that change will come regardless, but it is an entirely different idea to actually accept the change that will take place. We can embrace a concept, but the actuality of the concept is far harder - to move from words to reality is the hard part. 

I used to resent the idea that they used to lay on educators that you needed to be the high grass that bent with the wind - an idea meant to teach flexibility. It makes a nice mental image. Doesn’t the grass just sometimes want to stay straight? Nope. Can’t the grass fight against the wind? Nope. You get it, right? The grass has to bend to the will of the wind because it has no choice but to do it. 

I don’t resent that idea any more…at least where life is concerned. 

I may no longer resent the idea, but I still don’t like change. 

Change is hard. It isn’t just petty stuff that you have to get used to the change with, it’s life changes. One would think that the older you get, the easier it gets, but I think it may be harder. I can talk myself down easier now and I know I couldn’t do that years ago. I can make sense of things quicker than I used to, but I still don’t like it and I’m working on that.

I’ve reviewed my changes - maybe you should too. It’s good to look at where you were and think about how you dealt with it. Coping mechanisms are always good to think about. Here are mine (loosely put, but in order) from as far back as I can remember:

Moved…death…happy…loss…death…graduated…happy… graduated…niece…worked…traveled…graduated…happy… Alzheimer’s…death…death…death…death…moved…traveled… nephew…happy…traveled…happy…death…death…death…moved…loss…death…death…death…surgery…death…death…death… traveled….worked…raised…worked…hurricane…COVID…death…death…death…LewyBody…depression…worked…retired…

Every word has an event that goes with it and some of these words don’t belong to me, but they are part of the change in my life. You take those changes and you run with it because what else are you supposed to do? Fighting it does nothing. 

When you can see your big changes in print, you can step back and see if those changes define your life. I see a lot of death and I know that there is a lot more to come, but that doesn’t define me. Even my happiness doesn’t define me. 

Change isn’t going anywhere. We are all on the “change coaster” whether we like it or not. I’m not going to fight it. What will you do?

[making-changes-community]

Creating Sunshine Event

This event workshop was delivered by artist Sandra Bouguerch who is a self employed artist at Creative Companions. Creative Companions was set up by Sandra in May 2018 having experience of creativley working with people living with dementia. She is an interdisciplinary artist whose late father was diagnosed in 2012 with LewyBodies dementia and Parkinson’s symptoms, Terence enjoyed ‘the arts’ having encouraged and supported her from childhood to adult, he collaborated whole-heartedly throughout her artistic development whilst in her care. Sandra can provide various creative and stimulating interventions from Gallery visits discussing and explaining artworks and concepts through to one to one drawing and painting support.

[treebreadcares]

Hearing Loss: Patient-caregiver Dyad Effects On Quality Of Life

Background and aims Patients with age -related hearing loss (ARHL) and their natural caregivers have to confront a disability that produces progressive lifestyle changes. There is an interest in studying the ability of patients and their caregivers to cope with the difficulties that affect quality of life (QoL). In a sample of patient-caregiver dyads in the specific context of ARHL, we examine whether the QoL of patients and caregivers is influenced by the coping processes they use from a specific actor–partner interdependence model (APIM). Methods This cross-sectional study involved dyads with patients having a diagnosis of ARHL. The self-reported data included QoL (WHOQoL-BREF) and coping strategies (BriefCope). The APIM was used to test the dyadic effects of coping strategies on QoL. Results A total of 448 dyads were included; the patients and caregivers were love partners for 59% of the dyads. Coping strategies, such as social support, avoidance, problem solving, and positive thinking, exhibited evidence of actor effects (degree to which the individual’s coping strategies are associated with their own QoL). Effects on the partner (degree to which the individual’s coping strategies are associated with the QoL of the other member of the dyad) were found, i.e., when the patients mobilized their coping strategy based on social support and problem-solving, their caregivers reported higher environmental QoL. Conclusion This study emphasizes that the QoL for patients and their caregivers was directly related to the coping strategies they used. This finding suggests that targeted interventions should be offered to help patients and their relatives to implement more effective coping strategies. Read the full article

[kawaiiuniverseofficial]

Just Pinned to Kawaii Universe Instagram: In my eyes the Kawaii-iest couple in our Universe over 60 years together!! (Literally a lifetime) They say you should remember people by their best moments and this is definelty one of his infinitely many cute and best moments. In memory of F.C.C. - P.E. ( My grandpa father figure mentor and super comedian ) He was a jack of all trades and super master of EVERYTHING He left our Earth last week at 91 but not my heart or this universe the past few months have been a moment of science. Right now I am imagining him visiting his favorite star the one he always showed me in the night sky ( he loved every explorer ) and his amazing light year calculations of what it would take for anyone to there to as of now comforting my grandma in her dreams. He had so many inspirational thoughts (which he wrote down )and hilarious Charlie Chaplin antics got along with everyone and loved everything about family the youngest of 11 brothers! He sparked my very first time actually coloring / drawing as just a little toddler on the back of his plans to eventually professionally color his actual engineer plans. He always showed me to go big and that it would possible to do anything especially @kawaiiuniverse Everyday that has gone by I did everything possible to take care of him with my family and your support is always greatly appreciated please join us in #wynwood when you can and stop by the showcase it meant the every universe to him. Currently my grandma is suffering from lewybodies dementia and were helping her all we can too. #rip #loveyoupapi #grandpalove #grandparents #amazingperson #engineer #artisan #craftsman #superman #abuelo #pureheart #funniestguy #biggestintellectual #readeverybook #kneweverycalculation #sweetestcouple #over60years #almost100 #91 #91years #master https://ift.tt/2y3nU4z https://ift.tt/2GO1F9k

[dementia-by-day]

What does “getting a dementia diagnosis” look like?

Are you thinking about getting a more in-depth dementia diagnosis for yourself or a loved one? If you aren’t, you may want to consider it. 

I visited University of Pittsburgh’s Montefiore Hospital and did a two-day observation of their interdisciplinary team’s diagnosis process. The Alzheimer’s Disease Research Center (ADRC) is a fantastic place to go to learn about dementia. Seven years ago, I interned at the Penn Memory Center at Penn Medicine in Philadelphia, PA. They have a similar program. Here’s what you’ll encounter when looking for a better, more complete, diagnosis than one you’d get from a family physician.

There should be between two and three people attending the diagnosis process for this half-day experience. One should be the person with a potential dementia, and the other one or two should be close friends, a family member, or spouse.

If you are the person who may have dementia…

A social worker will see you to do an intake and ask a couple questions.

You’ll complete a blood draw with a nurse or physician.

A psychiatrist will see you to complete a self-assessment questionnaire about your past and current lifestyle. They’ll ask you questions about your family, your hobbies, and your feelings on life.

A physician assistant, nurse, or physician will see you and do both a mini mental and larger physical exam. They may ask you questions like, “How many quarters are in a two dollars?” The physical exam will test your reflexes, blood pressure, and strength.

A physician will probably join you all in the exam room and complete a few more physical tests.

You’ll do a gait test with someone from the team. They’ll assess your walk and your strength if they pull or push your body slightly.

The team will ask if you’ve already had an MRI, and if you haven’t had one, they’ll set it up for another day. They need your brain scan to complete the screening process.

You’ll be seen by a psychometric tester, who will test your memory and cognitive functions with written, drawn, and spoken exams. This could take up to an hour and a half, and tends to be the longest part of the day.

Once you are done, and the MRI comes in, the team will get together (usually a few weeks later) and discuss your case. They’ll come up with a diagnosis by using an interdisciplinary approach.

If you are the family member(s)…

A social worker will see you and ask a lot of in-depth questions about you and the person with dementia. They’ll ask about your family history, their family history, your relationship, and age of potential dementia onset. Be prepared that some of these questions could be stressful, depending on your relationship with the person who has dementia.

You will also see the psychiatrist. They’ll ask about the person’s change in condition, their background, their mood, and their level of insight into their own condition.

The nurse practitioner or physician assistant will sort through their medications, so make sure you bring all of their pill bottles in whatever condition they are in. They will probably ask you a few questions, as well.

You may meet with another team member who will talk to you about resources and support groups in the area.

The whole process can take about half a workday, so be prepared to spend some time there. The team will call you to come back when they have an interdisciplinary diagnosis.

[myography-blog]

Our fantastic artist @jera.w has since it again with the next beautiful chapter artwork for Myography. Please check out our crowdfunding page, if you fund £50 you will receive a copy of Myography upon it's release along with a funky embossed wristband and a personal thankyou email! Www.indiegogo.com/projects/myography #alzheimer #alzheimers #alzheimerssucks #dementia #dementiauk #dementiacare #nursinghomes #nursinghome #carehome #carehomes #parkinsonsdisease #parkinsons #parkinsonsuk #lewybodydementiaawareness #lewybody #olderadults #grandparents #memories #lifestory #lifestories #lifestorys #myography

[wholecarenetwork]

PWDP Ep 15: Benefits of the Dr. Visit with Dr. Beth Arredondo, PhD

[miyasoccer]

私と元ヤフー社長井雅博と接点があるというと驚く人が多いと思う。 私と彼との接点は、東京理科大である。私は半年で退学してしまった。 彼と知り合ったのは、ゴールデンウイークに野田キャンパスで開かれた研修会だったと記憶している。 当時の雅博は、地味な理科生とは異質のものを持っていた。最期は、好きな車の運転で亡くなったようであるが、当時自動車部に入部していたと記憶している。

https://ameblo.jp/lewybody/entry-12308356725.html