Good Books By UK Authors Destined To Be Very Popular

We have already been asked at Lewy Body Dementia UK on previous occasions to recommend or to at least include book authors we feel relevant and interesting for carers and loved ones to read during relaxation and for leisure.

We are always very careful in our choice and suggestions concerning authors and their book publications for the reading enjoyment of carers.

Here we do include one such author Jamie Badger Rothery who we feel relevant and worthy to be included on our blog.

Jamie Badger Rothery can be found here on Facebook.

We do not feel it appropriate to include authors already well known in the book publishing field and who may be of a more commercial standing. Neither do we feel it appropriate to include or recommend authors of inappropriate content for carers and families.

We are very proud to recommend an author still relatively unknown, but who we feel more than worthy to be included on our very popular blog Lewy Body Dementia UK.

Jamie Badger Rothery

Jamie Badger Rothery was born in Yorkshire and has a long history in the South and South West of England.

He has worked in Bristol and London for over twenty years and is also well travelled.

He has now settled in the West Country of England with Brother Frank (also an author) to write books.

He enjoys studying, research and literary pursuits along with tennis and sports.

While writing and also editing, Jamie Badger Rothery has numerous books with Amazon on subjects of psychology and true stories also – a family murder in the late 19th century – ‘Emma – The Tavy Murders’.

Included in his other works which some would find extremely interesting are works on his father’s army history – ‘Queen’s Soldier 7787’ – ‘Campaign Medal’ and ‘The Move’.

Badger is currently working on a 19th/20th century family history while editing and completing other works including a series of eight 19th century country stories.

All the wonderful books below by Jamie Badger Rothery can be found on Amazon here

Exeter Students Health & Social Care Question Faith Plus Dementia

Exeter College Students UK

Recently, with many thanks we had contact from two students (W & K), studying Health and Social Care at Exeter College in Devon UK.

Blog for Exeter Church Selection – Exeter Christian Faith Churches

The main question put to us from the students who declared their faith as being Christian, was concerning dementia in mind, in contrast to a person’s faith in spirit.

“To what extent does a person’s religious identity and faith need to be preserved as their dementia develops?”.

We thank you both for asking this question.

This is a question that comes up less commonly, but nevertheless it is a very valid question and one that we cannot avoid or dismiss as being unimportant to the main issue of dementia as a whole.

The students who contacted us stated that they are Christian in faith, but there are obviously many other faiths too, and healthcare professionals require religious and culturally sensitive training and support in delivering person-centred care, or care which respects the needs, rights, wishes and experiences of every person.

This is especially the case for those from ethnic minority communities who may or may not under-access care because of a lack of tailored services just like in any other community.

This obviously holds true also for those people who hold beliefs or ethics that are not considered as recognised faiths in themselves, but nonetheless just as important.

For the sake of answering in some way meaningfully and respectfully the two Christian students who presented the question in this instance, we shall try to answer it from a Christian perspective.

Caring for a person with dementia is demanding.

By the end of the day, you may be exhausted.

Meeting the person’s physical and emotional needs, attending to their medical issues, and taking care of household tasks is so time consuming that it can be easy to overlook another important aspect of a person’s care: their spiritual needs.

This may not always be a carers first thoughts when considering practicality and access etc.

(Please Note) we have listed some Exeter Churches at the bottom of this post that may be larger in size for seating, space and accessibility.

Spirituality and religious traditions are of course are important.

Faiths and beliefs are acquired early and are usually deeply cherished.

Eventually, they become part of a person’s whole identity.

What happens to a person’s spirituality as dementia progresses?

Does it go away?

You might be surprised to know that a person’s spiritual needs usually don’t change with a diagnosis of dementia.

Cherished beliefs continue to be a part of that person’s identity.

Although dementia may cause changes to behaviour and personality, the person’s core identity remains.

Have you ever heard dementia patients with limited communication skills recite a prayer or sing several verses of a hymn and know all the words?

Have you wondered why they can remember the words to a prayer and say them clearly, but not be able to otherwise form a sentence?

It’s because dementia affects different parts of the brain in different ways.

The left side of the brain is responsible for language.

This includes vocabulary, comprehension, and speech production.

The right side of the brain is responsible for rhythm.

This includes poetry, prayer, songs, music, and dancing.

Dementia affects the left and right sides of the brain asymmetrically.

In other words, the left side of the brain is damaged more extensively by dementia than the right side, which means that the words to songs and prayers tend to be preserved.

How can you help meet the spiritual needs of loved ones with dementia? Try these tips:

Take them to a church service.
Make sure they have their favorite religious symbols and objects nearby.
Arrange for visitors from the congregation to visit.
Show them the website of the church. Read them the news.
Pick up the weekly church bulletin for them to look at. Read it to them.
Reminisce using photos of important events that took place within the church.
Play gospel music.
Watch religious services shown live online or on television.
Recite daily prayers with them.
Researchers say that people with dementia who continue to be involved with their spiritual traditions report a higher quality of life and satisfaction than those who do not. Meeting a loved one’s spiritual needs delivers other benefits too.

It creates structure and routine. It provides grounding and comfort during periods of confusion or upset about life changes.

It can create moments of joy and happiness. It engages the person in meaningful activities and keeps him or her socially involved with members of the church community.

Taking the time to attend to an elderly loved one’s spiritual needs also benefits the primary caregivers.

If that caregiver is you, it will provide you with respite time to do something else while your loved one has a visitor, listens to music or actually goes to a service with a carer.

Ultimately, helping elderly loved ones meet their spiritual needs means that you will be making it possible for them to retain and fulfill a very important part of themselves.

Spirituality and everything that goes with it is a gift, especially for people living with dementia.

We include here a list of Churches in Exeter that you may find helpful when considering taking a relative or loved one to attend service.

We have tried to list Churches known to be spacious and maybe more fitting than much smaller Churches with less space.

St Michael and All Angels’ Church, Heavitree, Exeter.

Exeter Cathedral, City of Exeter.

Saint Michael’s Mount Dinham, Exeter.

St David’s Church, Exeter.

Belmont Church, Exeter.

St Leonards Church, Exeter.

Elon Musk Neuralink: Could It Cure Dementia?

Elon Musk Lewy Body Dementia UK

Lewy Body Dementia UK heard the circulating rumour of yet another potential cure for neurological conditions such as dementia, and when hearing the word Neuralink, then we just had to investigate further.

We owe that much at least to our loyal readers and followers.

Here’s what we could find out about this new development as far as we understand it.

Neuralink is developing devices known as brain-computer interfaces, or BCI’s, that translate the brain’s electrical activity into commands that can be relayed to an output device such as a computer screen, smartphone or robotic limb.

The company’s current implant is about the size of a quarter, with over 1,000 channels, or electrodes, that are capable of recording brain signals and stimulating nearby neurons.

Billionaire entrepreneur Elon Musk’s neuroscience start-up Neuralink unveiled a pig named Gertrude that has had a coin-sized computer chip in its brain for two months, demonstrating an early step towards the goal of curing human diseases with the same type of implant.

Co-founded by Tesla and SpaceX chief executive Mr Musk in 2016, San Francisco-based Neuralink aims to implant wireless brain-computer interfaces that include thousands of electrodes in the most complex human organ to help cure neurological conditions like Alzheimer’s, dementia and spinal cord injuries and ultimately fuse humankind with artificial intelligence.

Elon Musk’s Neuralink has been focusing on brain-implant technology.
In theory, brain-implants may help with restoring sight or help with severed nerves.
But there is not yet evidence that these implants will be effective in humans.

In a “show and tell” recruitment event, Elon Musk’s health tech venture Neuralink shared details of progress on its brain-implant technology.

The company has been “working hard to be ready for our first human [subject],” said Musk at the event, with plans to put the first implant in a person in the future.

“Obviously we want to be extremely careful and certain that that it will work well before putting a device in a human,” he said, adding that the company has submitted most of the required paperwork to the Food and Drug Administration (FDA) to start a clinical trial in people.

He also announced that the company will focus first on two applications — restoring vision, even for those who were born blind; and restoring “full body functionality” to people with severed spinal cords.

“We’re confident there are no physical limitations to enabling full body functionality,” he said.

Musk claimed he would eventually get an implant himself. “You could have a Neuralink device implanted right now and you wouldn’t even know. I mean, hypothetically … In fact, one of these demos, I will,” he said.

The successful development and application of Neuralink could undisputedly lead to major developments in the field of neurology.

Neuralink claims the technology has the potential to not only restore the motor function of patients, but also treat disorders such as Alzheimer’s and Parkinson’s.

Following the $205 million funding, the company announced that the first commercial applications of the chip would be directed at quadriplegic people.

In 2019 on the ‘Artificial Intelligence’ podcast, Musk claimed that Neuralink could “solve a lot of brain-related diseases”, using examples of schizophrenia and autism.

Not only is this a very bold statement, but it is also severely inaccurate considering neither are actually diseases.

Furthermore, Musk tweeted “Still far from LASIK but could get pretty close in a few years”, indicating that this treatment could become as ubiquitous and simple as laser eye surgery.

Nonetheless, it must be acknowledged that Elon Musk is notoriously aspirational about his projects and Neuralink has progressed much more slowly than he publicly promised.

Therefore, even if it is a success, it was supposed to be tested on humans, but human testing still hadn’t begun by 2022.

However one cannot rush developments such as these and if the BCI could allow severely paralysed people to see, feel or hear sensory inputs, it would be groundbreaking.

Not only that, but studying neuronal patterns could enable doctors to detect and stop epileptic seizures and monitor disorders such as depression.

On the other hand, there are copious moral and economic issues with Musk’s company.

Dr Rylie Green, head of Bioengineering at Imperial College London, told Insider that the idea of performing an unnecessary brain operation on a healthy patient is wrong due to the fact that it is a “very, very high-risk surgery”.

The surgery is not only invasive, but implants a foreign device in the patient’s brain for a non-medical purpose.

This has never been allowed within the medical community and there has only been one case of a non-medical surgery with a brain implant: the neurologist Phil Kennedy.

He was forced to use himself as a subject in a somewhat underground operation and subsequently suffered serious health complications.

Not exactly encouraging when discussing Neuralink.

Not only this, but when Neuralink tests on animals, the wires protrude through their skin which raises welfare concerns.

In February 2022 Neuralink was accused of “inadequate animal care and highly invasive experimental head implants during the experiments” according to the animal rights group the Physicians Committee for Responsible Medicine.

They submitted a 700-page document which comprised necropsy reports and veterinary records to the US Department of Agriculture, and claimed that 23 monkeys had undergone suffering.

Neuralink responded by announcing that it had opened a 6,000-square-foot vivarium for its monkeys in 2020 with equipment such as swings, pools, and treehouses.

In a blog post they stated, “At Neuralink, we are absolutely committed to working with animals in the most humane and ethical way possible.”

What’s also disappointing is the lack of self-awareness following serious allegations.

Although Neuralink has significant benefits both for the individual patient and the wider arena of medical research, it is an incredibly risky procedure and brings myriad ethical and practical issues to light.

For someone who famously declares that AI could outsmart and endanger humans, Elon Musk is certainly enabling robots to become much more powerful by giving them access to our brains.

Lewy Body Dementia UK Celebrates Four Years Existence

Lewy Body Dementia UK

Lewy Body Dementia UK has just celebrated its fourth year up on the web since its creation in 2018.

We sincerely thank all our followers and our readers, visitors and supporters.

If we have helped just one person since our launch back in 2018 then we humbly classify ourselves as worthy to exist.

We do sincerely hope we have helped many more people than just one person along the way, if only with a link to a website much better than our humble blog, or a piece of information that you may of needed to know.

The most important thing to us is the realisation that you are not alone.

We thank you most humbly, sincerely and without reserve.

Lewy Body Dementia UK

Genes Could Play Critical Role Determining Lewy Body Dementia

Lewy Body Dementia UK brings you a study published below, that may strongly suggest that your genes may determine your chances of contracting Lewy Body Dementia

In a study led by National Institutes of Health (NIH) researchers, scientists found that five genes may play a critical role in determining whether a person will suffer from Lewy body dementia, a devastating disorder that riddles the brain with clumps of abnormal protein deposits called Lewy bodies.

Lewy bodies are also a hallmark of Parkinson’s disease. The results, published in Nature Genetics, not only supported the disease’s ties to Parkinson’s disease but also suggested that people who have Lewy body dementia may share similar genetic profiles to those who have Alzheimer’s disease.

Scientists found that five genes may play a critical role in determining whether a person will suffer from Lewy body dementia, a devastating disorder that riddles the brain with clumps of abnormal protein deposits called Lewy bodies.

The results also supported the disorder’s ties to Parkinson’s and Alzheimer diseases.

Lewy body dementia is a devastating brain disorder for which we have no effective treatments. Patients often appear to suffer the worst of both Alzheimer’s and Parkinson’s diseases.

Our results support the idea that this may be because Lewy body dementia is caused by a spectrum of problems that can be seen in both disorders,” said Sonja Scholz, M.D., Ph.D., investigator at the NIH’s National Institute of Neurological Disorders and Stroke (NINDS) and the senior author of the study. “We hope that these results will act as a blueprint for understanding the disease and developing new treatments.”

The study was led by Dr. Scholz’s team and researchers in the lab of Bryan J. Traynor, M.D., Ph.D., senior investigator at the NIH’s National Institute on Aging (NIA).

Lewy body dementia usually affects people over 65 years old. Early signs of the disease include hallucinations, mood swings, and problems with thinking, movements, and sleep. Patients who initially have cognitive and behavioral problems are usually diagnosed as having dementia with Lewy bodies, but are sometimes mistakenly diagnosed with Alzheimer’s disease.

Alternatively, many patients, that are initially diagnosed with Parkinson’s disease, may eventually have difficulties with thinking and mood caused by Lewy body dementia. In both cases, as the disease worsens, patients become severely disabled and may die within 8 years of diagnosis.

A growing body of evidence suggests genetics may play a role in the disorder and that some cases may be inherited. Scientists have found that some of these rare cases can be caused by mutations in the gene for alpha-synuclein (SNCA), the main protein found in Lewy bodies. Further studies have found that variants in the gene for apolipoprotein E (APOE), which is known to play a role in Alzheimer’s disease, may also play one in Lewy body dementia.

“Compared to other neurodegenerative disorders, very little is known about the genetic forces behind Lewy body dementia,” said Dr. Traynor. “To get a better understanding we wanted to study the genetic architecture of Lewy body dementia.”

To do this, they compared the chromosomal DNA sequences of 2,981 Lewy body dementia patients with those of 4,931 healthy, age-matched control participants. Samples were collected from participants of European ancestry at 44 sites: 17 in Europe and 27 across North America. The DNA sequencing was led by Clifton Dalgard, Ph.D., and researchers at The American Genome Center, a series of state-of-the-art laboratories at the Uniformed Services University of the Health Sciences and supported by the Henry M. Jackson Foundation for the Advancement of Military Medicine.

Initially, they found that the sequences of five genes from the Lewy body dementia patients were often different from those of the controls, suggesting that these genes may be important. It was the first time that two of the genes, called BIN1 and TMEM175, had been implicated in the disease. These genes may also have ties to Alzheimer’s and Parkinson’s diseases. The other three genes, SNCA, APOE, and GBA, had been implicated in previous studies, and thus, strengthened the importance of the genes in Lewy body dementia.

The researchers also saw differences in the same five genes when they compared the DNA sequences of another 970 Lewy body dementia patients with a new set of 8,928 control subjects, confirming their initial results.

Further analysis suggested that changes in the activity of these genes may lead to dementia and that the GBA gene may have a particularly strong influence on the disease. The gene encodes instructions for beta-glucosylceramidase, a protein that helps a cell’s recycling system break down sugary fats. The researchers found that both common and rare variants in the GBA gene are tied to Lewy body dementia.

“These results provide a list of five genes that we strongly suspect play a role in Lewy body dementia,” said Dr. Traynor.

Finally, to examine the apparent links between Lewy body dementia and other neurodegenerative diseases, the researchers further analyzed data from previous studies on Alzheimer’s and Parkinson’s disease. They found that the genetic profiles of the patients in this study had higher chances of suffering from either Alzheimer’s or Parkinson’s disease than the age-matched control subjects.

These predictions held even after they lowered the potential impact of known Alzheimer’s and Parkinson’s disease-causing genes, like APOE and SNCA. Interestingly, the patient’s genetic risk profiles for Alzheimer’s disease, on the one hand, or Parkinson’s disease, on the other, did not overlap.

“Although Alzheimer’s and Parkinson’s disease are molecularly and clinically very different disorders, our results support the idea that the problems that cause those diseases may also happen in Lewy body dementia,” said Dr. Scholz. “The challenge we face in treating these patients is determining which specific problems are causing the dementia. We hope studies like this one will help doctors find precise treatments for each patient’s condition.”

To help with this effort, the team published the genome sequence data from the study on the database of Genotypes and Phenotypes (dbGaP), a National Library of Medicine website that researchers can freely search for new insights into the causes of Lewy body dementia and other disorders.

This study was supported in part by the NIH Intramural Research Programs at the National Institute of Neurological Disorders and Stroke (NS003154) and the National Institute on Aging (AG000935).

Lewy Body Dementia UK List Of Dementia Information Podcasts

Lewy Body Dementia UK

At Lewy Body Dementia UK we will always do our very best to bring you information that you (may) find helpful.

We search far and wide all over the internet world wide to bring you lots of information all in one place.

We will never stop trying to find material that may be of help to you.

Please be aware that because we search world wide then the material we bring you may not always be from your country of residence.

Below we bring you a whole list of podcasts we found here to listen to.

Dementia Untangled

27 DAYS AGOThis podcast explores unique topics related to dementia through conversations with physicians, experts, and community leaders—focusing on innovative ideas, practical strategies, and proven methods to create a supportive path for caregivers. Reach out to us with questions or comments at DementiaUntangled@bannerhealth.com.Dementia Resilience with Jill Lorentz

Dementia Resilience with Jill Lorentz

15 DAYS AGOTopics include Alzheimer’s, Parkinson’s, Lewy Body and living with other Dementia’sDementia Researcher

Dementia Researcher

10 DAYS AGOPlease take a moment to vote for us in the Peoples Choice Podcast Awards – go to https://www.podcastawards.com, register an account, find Dementia Researcher in the Science & Medicine Category, and hit submit. In our biweekly podcast our regular hosts bring together panels of early career researchers and other dementia experts to discuss their research and career topics to support other early career researchers. Research investigating Alzheimer’s and other dementias, exploring prevention, di …Discovering Dementia

Discovering Dementia

8 WEEKS AGOHow one person’s dementia story led to a journey of discovery. A podcast with Penny Bell.Alzheimer’s Society Podcast

Alzheimer’s Society Podcast

15 DAYS AGOWe’re the UK’s leading dementia charity. We provide information and support, improve care, fund research, and create lasting change for people affected by dementiaDementia Care Partner Talk Show with Teepa Snow

Dementia Care Partner Talk Show with Teepa Snow

5 DAYS AGOThis is the Dementia Care Partner Talk Show, a podcast to help you navigate the senior care maze. Learn and laugh with us as we discuss creative solutions and ideas to common and uncommon dementia care challenges, and how to make sense of the senior care industry and options even if you’re not a professional. Are you caring for a person living with dementia? We would love to hear from you! Send us a note at info@teepasnow.com and tell us what you’d like for us to discuss! You can also visit …The FuMP

The FuMP

1 DAY AGOThe Funny Music Project!The Fun Zone

The Fun Zone

2 DAYS AGOThe Fun Zone is a show hosted by Byron Lee. 2 hours of comedy music, dementia, and anything weird!Manic Mondays

Manic Mondays

2 DAYS AGOWeekly comedy show featuring funny music, News Of The Stupid, and more!Konspirasi.ID

Konspirasi.ID

3 YEARS AGOThe truth is stranger than fictionThe Caregiver’s Toolbox

The Caregiver’s Toolbox

23 DAYS AGOProviding education and information on senior care topics.The Brain Health Revolution Podcast

The Brain Health Revolution Podcast

7 DAYS AGOJoin award-winning neurologists and researchers, Drs. Dean and Ayesha Sherzai, for a fun, innovative and inspirational approach to brain health and all matters concerning the remarkable human mind. This is the century of the brain, a time when our insights into this incredible organ are exploding at an unprecedented pace. Explore ways to take control of your own brain health, avoid chronic diseases that are devastating communities worldwide, and expand your mind’s capacity beyond anything yo …Realityarts

Realityarts

9 DAYS AGOArts and Creativity for health – Inspiring you to unlock your creative talents. Looking at how Creative expression can impact on our health and well-being and effect change in our lives. Posting Mondays – Creating in Faith – You are encouraged to dive deep into an inspired thought Wednesday – Arts and Wellness – Arts, interviews, strategies, resources for those living with Dementia and their Carers. Friday – Inspiration Shorts is a top-up reflection suggestion. Want to make a Donation to the …Alzheimer’s and Dementia Care

Alzheimer’s and Dementia Care

2 YEARS AGONew podcast weblogThis Dementia Life

This Dementia Life

1 YEAR AGOThis Dementia Life is a heartwarming podcast program about living life with dementia.Dementia Radio Podcast

Dementia Radio Podcast

11 YEARS AGOPodcast for Dementia RadioJourney Ahead

Journey Ahead

12 DAYS AGOJourney Ahead features upbeat conversations with area experts on how you or your aging loved ones can live life to the fullest in the Chippewa Valley. Hosted by Lisa Wells of the Aging & Disability Resource Center of Eau Claire County, enjoy discussions focused on enhancing the quality life while aging, living with dementia, keeping our aging loved ones active and healthy, changing attitudes on aging, and many more insightful topics. Subscribe for free to always get the latest monthly episode.Dementia Friends: Kingsbridge Dementia Friendly Community

Dementia Friends: Kingsbridge Dementia Friendly Community

2 YEARS AGOKingsbridge Dementia Friendly Community want the voices of those living with dementia in our community to be heard and valued; we aim to establish links with businesses and service providers to encourage all to improve services and increase awareness of dementia. Produced by iamthehow with music from Kai Engel.Life With Dementia

Life With Dementia

13 DAYS AGOLife With Dementia is an interview-style podcast sharing relevant research, personal stories, and practical tips for living well with dementia. We talk to people all over the world: scientists, researchers, practitioners, family care partners, industry professionals, and people living with dementia to hear firsthand about solutions they’ve discovered and what we can do to improve resources and support for people affected by dementia.Dementia Discussions

Dementia Discussions

8 DAYS AGOA weekly podcast about dementia. Join your host, Barbara Hament, as she interviews medical professionals, caregivers, and various experts on how to better understand and cope with this challenging and complex disease.Living With Hospice

Living With Hospice

21 DAYS AGOEveryone’s end of life journey should be comfortable, peaceful and dignified. In every episode, Mitch Ware, long time Hospice Bedside volunteer and former Hospice client, will share his experiences and knowledge to show others how they can achieve the best palliative care available through Hospice. And, he will take your questions and answer them on future episodes as well. If you are considering end of life care, this podcast is for you!Devo Spice’s The Insider Podcast – Public Feed

Devo Spice’s The Insider Podcast – Public Feed

15 DAYS AGODevo Spice has been described as the red-headed stepson of Weird Al Yankovic and Eminem, a fitting description since his comedy rap songs have topped the charts on the Dr. Demento Show, where Weird Al himself got his start. On The Insider Devo gives you a behind the scenes peek and what is going on in his demented world every month including some sneak peeks at new projects, and plans for the future.Let’s Talk About Care

Let’s Talk About Care

15 DAYS AGOThis podcast highlights issues related to social care. We find out the funny, heartwarming, shocking and inspiring stories about care and hear from policy makers, care professionals, celebrities and those giving and receiving care.Bridge the Gap: The Senior Living Podcast

Bridge the Gap: The Senior Living Podcast

2 DAYS AGOWelcome to Bridge the Gap with hosts Lucas McCurdy and Joshua Crisp. A podcast dedicated to informing, educating and influencing the future of housing and services for older adults in senior living.The Dementia Adventure

The Dementia Adventure

16 WEEKS AGOThe Dementia Adventure is for anyone whose life is being touched by dementia. Navigating the world of dementia and Alzheimer’s can feel overwhelming so this series is full of tips, advice, thoughts, support, love and shared experience. In each episode we meet experts of all kinds from research scientists, care workers, brain trainers, speech and language specialists, therapists and even a Buddhist monk. This podcast is the recipient of Alzheimer’s Research UK’s Inspire Fund and we are deligh …Dementia Dialogue

Dementia Dialogue

16 HOURS AGOCheck out http://www.dementiadialogue.ca Our podcasts feature people with dementia, their care/life partners, and supporters sharing experiences. They demonstrate their capacity to live fully and enable peer listeners to understand and gain insight and strengthen their adaptive skills. Episodes also enhance understanding within the broader community of what it means to live with dementia.Word of Mouth

Word of Mouth

22 HOURS AGOSeries exploring the world of words and the ways in which we use themMisUnderstanding Dementia Podcast

MisUnderstanding Dementia Podcast

44 WEEKS AGOAre you having a hard time taking care of your loved one that has Dementia? Do you feel stuck on how and what to do with your loved one that has Dementia? Are you ready to take care of yourself and your elderly loved one? Ready to be the best caregiver for your loved one? Then this podcast is for YOU!The Funny Music Podcast

The Funny Music Podcast

6 DAYS AGODevo Spice, The Great Luke Ski, and some rotating guest hosts discuss the most recent comedy songs posted on The FuMP.Let’s Talk Dementia

Let’s Talk Dementia

6 DAYS AGOThis podcast is designed to give you quick and entertaining information regarding caring for someone with dementia. “Carosene – The Gigolo Song (cdk Remix)” by Analog By Nature. 2015 Licensed under Creative Commons. Attribution Noncommercial (3.0). Support this podcast: https://anchor.fm/lets-talk-dementia/support RTÉ – Lets Talk Dementia

RTÉ – Lets Talk Dementia

3 YEARS AGOThis 6 part series series looks at every aspect of dementia, from diagnosis, to carers, to end of life care.Boomer Living Senior Living Broadcast

Boomer Living Senior Living Broadcast

4 DAYS AGOBoomer Living Senior Living Broadcast is inspired by the professionals caring for older adults, hosted by Hanh Brown. Every week we have industry professionals on the show, namely neurologists, gerontologists, geriatricians, technologists, caregivers, providers, developers, and operators. They share their journey, impact, and lessons learned in caring for the aging population. Join the conversation of hot topics in serving older adults with friends and industry experts. The future of aging w …What The Dementia

What The Dementia

21 DAYS AGOOn What the Dementia we will discuss important issues that you may run into as care partner, challenging dementia behaviors you may encounter, we will demystify certain dementia care topics, and learn to question certain practices that may be better approached a different way. Our biggest goal is to integrate dementia care talks into everyday conversations. Dementia definitely sucks, but we need to talk about it! If you think that Bambu Care and our What the Dementia podcast can help you alo …Alzheimer’s Talks

Alzheimer’s Talks

5 WEEKS AGOAlzheimer’s Talks is a free series from UsAgainstAlzheimer’s. We interview leaders in Alzheimer’s research, treatment, prevention, brain health, disparities, patient-focused drug development, books, caregiving and other topics on progress against this disease. You can sign-up for the live discussions, which feature your questions, at http://www.usagainstalzheimers.org.Adventure before Dementia: Outback Adventure Show

Adventure before Dementia: Outback Adventure Show

2 YEARS AGO‘Adventure Before Dementia’ is a radio show for camping enthusiasts. Whether you like staying in caravan parks or bush camping, be it up the river, along the coast, discovering unsealed national parks or more remote outback explorations, ‘Adventure Before Dementia’ is your weekly dose of escapism. Hosts Anita & Mike Pavey have worked as photo-journalists for some of Australia’s most popular 4×4, camper trailer and caravan publications. They have travelled widely including a 13-month Big Lap …Dementia Matters

Dementia Matters

8 DAYS AGOBrought to you by the Wisconsin Alzheimer’s Disease Research Center, Dementia Matters is a podcast dedicated to discussing the latest in Alzheimer’s disease research and caregiving resources. Our host, Dr. Nathaniel Chin speaks with a range of research and caregiving experts to keep you informed on current research studies, headlines and caregiving strategies. Find show notes and more resources at adrc.wisc.edu/dementia-matters.All in the Mind

All in the Mind

15 DAYS AGOProgramme exploring the limits and potential of the human mindShaping Dementia Environments

Shaping Dementia Environments

15 DAYS AGOThe experience of living in dementia care environments hasn’t evolved in 30 years – and we think it’s time for change. Conversations with disruptive operators, policy shapers, and designers examine how new thinking is shaping the places people living with dementia call home. Each episode, we’ll elaborate on a single pattern of innovation in dementia environments – some focusing on physical spaces, others highlighting care philosophies and procedures. Join Max Winters and Jennifer Sodo, senio …BrainShape Podcast

BrainShape Podcast

1 DAY AGOHost Dr. Andrea Wilkinson has a PhD in Psychology, with a specialization in Cognitive Aging. She has been studying brain fitness and cognitive maintenance for over 15 years. The BrainShape Podcast discusses the hottest issues, topics, interests and concerns related to healthy aging and brain health for aging adults, older adults, seniors and baby boomers who want to learn about how to stay mentally and physically engaged for as long as possible. What are the tips and techniques that promote …Virtual Alzheimers

Virtual Alzheimers

2 YEARS AGOCognitive psychology is a branch of psychology that investigates internal mental processes such as problem solving, memory, and language.Innovative Dementia Care

Innovative Dementia Care

1 YEAR AGOIf you are living with someone who has Alzheimer’s, dementia, confusion or memory loss, you know just how difficult the simple act of communication can be between you and your loved one. Susan Kohler, author of How to Communicate with Alzheimer’s, is host of Innovative Dementia Care, a program designed to help you, the caregiver learn about the communication process, why it is so important in caregiving, the problems in communication, and useful techniques to facilitate communication that wi …Inaudible

Inaudible

19 HOURS AGOThe podcast that’s impossible to categorise, describe, taste or indeed listen to.GeriPal

GeriPal

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Alzheimer’s Disease (Audio)

19 WEEKS AGODon’t miss these vital updates on the latest in Alzheimer’s and dementia care and research from the University of California.AUUF Podcasts

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3 DAYS AGO The BMJ Podcast

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3 YEARS AGOThe intention of this podcast is to take the fear and stigma out of Alzheimer’s and related Dementia.My belief is if I can survive this terrible disease as a primary CareGiver so can you and I will show you how! We will have experts, experiences, and teachings to give a solid base in the understanding. I have been where you are and I know and empathize with the struggle to remain positive in what is usually a dark situation. We will talk about silver linings, living in the moment, looking to …The Experts Speak – An Educational Service of the Florida Psychiatric Society

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4 YEARS AGO Better Brain, Better You

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2 YEARS AGONew podcast weblogKimberly D. Scott (That Kimberly)

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CrossTalk

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Bridge the Gap: The Senior Living Podcast

Super Aging with Fatou Ceesay

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6 DAYS AGOWelcome to the Compass & Clock’s Info-Tianment PodcastThrough our podcasts we’ll explore how to live your best life now and well into retirement.We’ll discuss topics in financial planning, housing, and insurance.We’ll talk wellness, relationships, and leisure pursuits. A full active life requires planning for your goals and preparing for the unexpected.We’ll introduce you to a variety of entertaining guests, from knowledgeable experts, to folks sharing stories of their life experiences, and …Divided by Werewolves

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The Healthy Brain Podcast

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Here & Now

19 HOURS AGONPR and WBUR’s live midday news programPrevention Works

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All in the Mind

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AlzheimersQ

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Neurology Minute

Prepare to Care

2 DAYS AGOA podcast dedicate to the thousands of unpaid caregivers in Houston and the loved ones they care for. Find out more at http://www.aarp.org/HoustonPTC and help us to provide better Caregiving resources by filling out this survey: https://aarp.co1.qualtrics.com/jfe/form/SV_6EkgZ8A8REjFuRf Alzheimer’s Talks

Alzheimer’s Talks

Awkward Story: A Dementia Podcast

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24 WEEKS AGOPeace with Dementia is a podcast for persons living with dementia and their care partners, focusing on practical tips and exploring current research. Matt encourages listeners to share what they hear on the show with their medical team and collaborate on care strategies. Together, we can create “Peace with Dementia.”Healing Ties

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1 DAY AGOBeyond Caregiving…How do care; we also have to care for ourselves. How do we treat friends, family, strangers we meet? How do we heal the physical, social, financial, spiritual aspect of life? How do we heal after caregiver ends/ We do this by creating Healing Ties! By sharing their caregiving stories with host Christopher MacLellan, our guests reveal how they are creating Healing Ties in their community by their words, actions, and deeds.YOUR BACKUP PLAN APP puts your life in 1-place in preparation of any unpredictable circumstance

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2 DAYS AGOSupercharge your learning and enhance your practice with this Internal Medicine Podcast featuring board certified Internists as they interview the experts to bring you clinical pearls, practice changing knowledge and bad puns. Doctors Matthew Watto, Stuart Brigham, Paul Williams and friends (a national network of students, residents and clinician educators) deliver a little knowledge food for your brain hole. Yummy! No boring lectures here, just high value content and a healthy dose of humor …BrainShape Podcast

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Empowering You Organically – Audio Edition

17 HOURS AGOAt Organixx our mission is simple: “Supporting you in being the healthiest YOU possible.” Subscribe to hear cutting edge natural health topics. Let natural health leaders share their knowledge and empower you to live a healthier life. We’re dedicated to supporting you because we’ve all experienced pain, suffering, and the struggle of our own bodies, or a loved one not being the healthiest they can be.Dr. Douglas Stockel Health and Wellness Weekly News Update

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1 DAY AGOCourtesy of Dr. Douglas StockelVertical Hold: Behind The Tech News

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2 DAYS AGOYour source for tips and strategies to improve the health and wellness of you and your familyThe BMJ Podcast

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Natalie Spence’s Podcast

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6 DAYS AGOFeaturing CoHosts: Neuropsychologists Dr. Laura Jansons, Dr. Skip Hrin, and QEEG Legend Jay Gunkelman. NeuroNoodle combines talk therapy with technology to improve the quality of your life. We discuss symptoms such as ADHD, Anxiety, and Depression and the different ways they can be addressed via Neurofeedback, Brain Maps,QEEG, and Talk Therapy Want to come on the show? Have a topic? Pete@neuronoodle.com Sign up to our Newsletter https://lp.constantcontactpages.com/su/moOsZyB/NeuroNoodle Second Half of Life Podcast

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Dr. Bond’s Life Changing Wellness

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3 DAYS AGO Luke & Carrie’s Bad Rapport

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7 WEEKS AGO35 listeners can’t be wrong.Alzheimer’s and Dementia Care

Alzheimer’s and Dementia Care

2 YEARS AGOTim Tholen, CEO of Thoughtful Health Care, discusses valuable strategies, tips, and information used every day in the care of Alzheimer and dementia patients at home. Thoughtful Healthcare is committed to providing your loved ones with the very best in personable, caring and friendly at home care. By providing compassionate and professional caregivers a higher quality of life for loved ones under our watch is achieved through advocacy, integrity, continuous improvement and, above all else, h …Cantonese and Mandarin for medical matters and much more

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23 DAYS AGOLearn the Cantonese and Mandarin ways to say things related to health and medical matters, and a hodgepodge of many other things you won’t learn in a formal classroom.Care Giver Life with Dignity Podcast

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27 DAYS AGOSue Salach-Cutler and Fran Piekarski co-host this podcast on the challenges caregivers face when helping their loved ones. Each episode is committed in ensuring that our listeners, and those they care for, live a life with dignity, no matter their mental or physical state. We advocate for our listeners in a system that grows more complicated each year. https://habaneromedia.net/Christ For The City Podcast

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3 DAYS AGOThe Christ for the City Podcast is a ministry of The Burning Bush Tabernacle Church. We are located at 2955 W. Belmont Avenue, Chicago, Illinois in the heart of the Avondale area. We are a Christ-centered, Bible believing church that seeks to minister the love of Christ according to the truth of God’s Word to the heart of the city through leading and power of the Holy Spirit. Visit us at: http://www.bbtab.org The Financial Advocate

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1 HOUR AGOTune in for practical health advice from Cleveland Clinic experts. What’s really the healthiest diet for you? How can you safely recover after a heart attack? Can you boost your immune system? Cleveland Clinic is a nonprofit, multispecialty academic medical center and is ranked as one of the nation’s top hospitals by U.S. News & World Report. Our experts offer trusted advice on health, wellness and nutrition for the whole family. Our podcasts are for informational purposes only and should no …Let’s chat health

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22 DAYS AGOOn this podcast I’m going to explore our personal story about our experiences of navigating the healthcare system when Dad had a life-changing stroke. This is a daily and shocking experience shared by hundreds of families. I’m going to talk about why families need be involved in their relatives’ healthcare, and to encourage them to ask questions, and to be informed. By rebalancing the power dynamic between the healthcare team, the patient and family I want to discuss how we can give patients …Dhru Purohit Podcast

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TVH Health Chat

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4 DAYS AGOFor over 30 years, Dr Robert Prather has been transforming the lives of his patients at Holistic Integration, the top Structure Function medical practice in the United States. Tune in every week as he addresses health issues from back pain to vitamin deficiency and acupuncture to homeopathy. Each episode is created with education in mind, as Dr. Prather seeks to debunk common myths of the medical field, educate listeners on what holistic healthcare can and should look like, and clarify what …The Dr. Axe Show

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20 DAYS AGOHonest conversations about mental health and faithDefining Dad Bod

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24 DAYS AGOCoach Alex VanHouten is the owner and founder of two health and fitness companies — The Betterment Company and Defining Dad Bod and he brings 15 years of fitness industry experience to this epic podcast EVERY WEEK! Through “Defining Dad Bod” Coach Alex helps moms and dads with cutting edge nutrition, exercise, and lifestyle change designed optimize their bioindividuality and help them show up better for themselves and their families. He hosts THIS podcast to cut through the confusion of the …All Power To The Developing!

All Power To The Developing!

15 DAYS AGOA podcast of the East Side Institute, an international center for social change efforts that reinitiate human and community development. We support, connect and partner with committed and creative activists, scholars, artists, helpers and healers all over the world. In 2003, Institute co-founders Lois Holzman and the late Fred Newman had a paper published with the title “All Power to the Developing.” This phrase captures how vital it is for all people—no matter their age, circumstance, statu …Kendal Corporation – Lubetkin Media Companies LLC

Kendal Corporation – Lubetkin Media Companies LLC

12 YEARS AGOTelling Stories in Sound and ImagesConversations in Complexity

Conversations in Complexity

1 YEAR AGOThis is about challenges of complex care of patients with multimorbidity and patient caregiver involvementI Am Do Filmmaker

I Am Do Filmmaker

6 YEARS AGOUK filmmakers talking about making films.The Toad Elevating Moment

The Toad Elevating Moment

9 YEARS AGOWeekly radio show done on Dementia Radio now also a podcast. We play comedy music as well as talk about geeky things, recorded and streamed from I3 Detroit, a hacker space in Michigan.The Herald Podcasts

The Herald Podcasts

12 WEEKS AGOWelcome to The Herald’s podcast collection. We’ll be bringing you the latest political discussion and cultural conversations from across Scotland and catching up with some of the country’s leading experts.Internet Archive – Collection: SciFi_Horror

Internet Archive – Collection: SciFi_Horror

4 YEARS AGOThe most recent additions to the Internet Archive collections. This RSS feed is generated dynamicallyFrom My Mama’s Kitchen® Talk Radio

From My Mama’s Kitchen® Talk Radio

8 DAYS AGOFrom My Mama’s Kitchen® Talk Radio is based on the multi-award-winning & bestselling book, From My Mama’s Kitchen – “food for the soul, recipes for living” by Johnny Tan honoring his 9 moms. FMMK Talk Radio serves as a resource center vibrant with motivational, inspirational, and spiritual stories from guests of ordinary people especially moms doing extraordinary feats, instilling a positive attitude in our global community. Conversation topics address family matters, relationships, communit …Getting Explicit with Keyshia

Getting Explicit with Keyshia

3 YEARS AGOWelcome to the Blah blah blah with Keyshia podcast, where I speak out of my ass with no actual point. Do I have dementia?The Boo Crew

The Boo Crew

1 DAY AGOJoin your hosts Leone D’Antonio, Trevor Shand, and Lauren Shand as they bring you discussions and interviews covering all things horror! Our guests are not only icons from your favorite horror and genre films from in front of and behind the lens, but also artists, actors, musicians, authors and personalities inspired by horror and dark entertainment. A truly unique experience that has something for everyone.Talking Life

Talking Life

4 YEARS AGOCreated Out of Mind presents Talking Life, a series of podcast conversations with a person, or people, experiencing a dementia about their relationships with topics such as beauty, willpower, purpose, connection, and sleep. This series aims to engage listeners in collective conversations with people experiencing dementias about everyday subjects, challenging them to reconsider their initial assumptions about dementia. Presented by Susanna Howard, Music by Hannah Peel and edited by Erland Coo …Good Sitcom Ideas

Good Sitcom Ideas

4 YEARS AGOJoe Kenmore pitches his best sitcom ideas.Health Report – Separate stories podcast

Health Report – Separate stories podcast

2 DAYS AGOSpecialist and mainstream audiences alike rely on the Health Report to bring clarity to health and medical issues from social, scientific and political points of view.Nerve hope beyond brain disease

Nerve hope beyond brain disease

2 YEARS AGONerve is about living well with brain diseases like dementia, stroke and migraine, run by neurologists at http://www.sydcog.com.au who are inspired by their courageous patients. Mind and mood, memory and thinking, give us our unique experiences. Conversations will focus on quality, not just quantity, of life and motivate patients and carers alike.NOUS

NOUS

9 WEEKS AGONOUS tackles the deepest questions about the mind, through conversations with leading thinkers working in philosophy, neuroscience, psychiatry and beyond. Each episode features an in-depth conversation focussing on one big idea. How does the brain produce consciousness? Are mental illnesses just biological? Are there limits to the power of neuroscience – or will it eventually unravel the mysteries of free will and morality? Hosted by Ilan GoodmanAlzheimersQ

AlzheimersQ

5 YEARS AGOFive million Americans have been diagnosed with Alzheimer’s, a number that’s expected to increase to 15 million by 2050. The disease is the sixth leading cause of death in the United States and disproportionally impacts minorities and women. Two out of three Alzheimer’s patents are women.BMJ talk medicine

BMJ talk medicine

30 WEEKS AGOPodcast by BMJ GroupExploring Mental Illness

Exploring Mental Illness

1 YEAR AGOExploring Mental Illness: Everything You Wanted To Know But Were Too Afraid To AskView Point

View Point

3 YEARS AGOWelcome to View Point. It’s a Podcast where you learn people’s stories and truly get to know it from their point of view.JournalSpotting.

JournalSpotting.

24 DAYS AGOGeneral Medicine Education Podcast to keep up to date with the latest and most important medical literature.Safe Space Radio

Safe Space Radio

41 WEEKS AGOSafe Space Radio is the show about subjects we’d struggle with less if we could talk about them more. We combine storytelling with empathy and expertise to foster courage in navigating challenging conversations and combating shame and stigma. Our new miniseries is Can We Talk?Conversations 2016

Conversations 2016

4 YEARS AGOSpend an hour in someone else’s life. Conversations draws you deeper into the life story of someone you may have heard about, but never met.FOXcast SLP

FOXcast SLP

16 WEEKS AGOFOXcast SLP: a podcast for clinicians made by clinicians. It’s brought to you by FOX Rehabilitation. Find out more at foxrehab.org. The purpose of our show is to have professional conversations about SLP for older adults. (Tim Fox, PT, DPT, GCS | License #40QA00702100 | 7 Carnegie Plaza Cherry Hill, NJ 08003 | 877-407-3422)Healthy Senior Living with Smiles by Delivery

Healthy Senior Living with Smiles by Delivery

1 YEAR AGO Conversations In Care

Conversations In Care

5 YEARS AGOConversations In Care the radio show providing you with a collection of care programs. Covering senior health topics, type 1 diabetes and everything inbetween. Using the simple act of conversation we can create awareness, establish a course of action and design a community of support.Revising on the Run

Revising on the Run

4 YEARS AGOWe’ve made Revising on the Run for medical students to learn on the go. We both love running, but you can listen to us at any time. Our first episode focusses on two topics in geriatric medicine – dementia and urinary incontinence. Have a listen, and let us know what you think!Mainstreet Halifax from CBC Radio

Mainstreet Halifax from CBC Radio

1 DAY AGOA vibrant blend of top news stories, local weather, traffic reports, comedy, local music, and interviews about politics, science and culture. Tune into Mainstreet on weekdays from 3 to 6 p.m. Add your voice by calling us at 1-888-686-MAIN (6246) or e-mail mainhfx@cbc.ca.Soundproofist

Soundproofist

6 DAYS AGOSoundproofist is a podcast about unwanted or harmful noise and what you can do about it. We also cover acoustics and people who work with sound.MediCave

MediCave

7 YEARS AGOHow the world around you is out to make you ill and how you can make it well.The Curious Case of Benjamin Button by F. Scott Fitzgerald

The Curious Case of Benjamin Button by F. Scott Fitzgerald

28 WEEKS AGOA life lived backwards, with events happening in reverse order forms the strange and unexpected framework of one of F Scott Fitzgerald’s rare short stories. The Curious Case of Benjamin Button was published in Collier’s in 1927 and the idea came to Fitzgerald apparently from a quote of Mark Twain’s in which he regretted that the best part of life came at the beginning and the worst at the end. Fitzgerald’s concept of using this notion and turning the normal sequence of life on its head resul …Speaking of HomeGuard

Speaking of HomeGuard

7 DAYS AGO“Speaking of HomeGuard” shares upcoming National Rifle Association news, current events in the firearms industry both in Florida and around the nation, and vital information regarding your Second Amendment rights. Thank you for listening! Please share our podcast, visit our website and connect with us on Facebook. Rick WehrheimNeurosearch’s Podcast

Neurosearch’s Podcast

12 YEARS AGONeurosearch is setting new standards in the research of new treatments for Parkinson’s disease and other neurodegenerative diseases. Our podcast is intended to provide listeners with a sense of hope and a better understanding of the exciting work that Neurosearch researchers are engaged in to fight neurodegenerative diseases.Drug Positive

Drug Positive

11 WEEKS AGODrug Positive is the risk reduction and benefit enhancement podcast reducing shame and stigma to save lives and end the drug war.Senior Care Conversations

Senior Care Conversations

3 YEARS AGOLooking to stay ahead in the booming elder care industry? Join Senior Care Conversations with Bluebird Homecare as we bring you news, insights, and stories about meeting the challenges of aging in America. Stuart Brunson, Bluebird Homecare Chairman & CEO, speaks with industry leaders and caregivers to highlight opportunities and challenges in providing healthy, independent home living for seniors across the country.This Old Cowgirl

This Old Cowgirl

3 YEARS AGOThis Old Cowgirl’s journey in moving back to my family farm.I moved back to the farm to care for my Dad who had Dementia so that he could stay on his beloved farm for as long as possible…which he did. He took his final breath here.The Legacy of family farms and ranches is what I am passionate about. We need to gather the stories of how our farms and ranches came to be. The stories of the hard times, the good times. When one of our farmers or ranchers passes away, all those stories and answ …The Graze

The Graze

1 YEAR AGOThe podcast of John LeFevre (former investment banker, Twitter personality, and best-selling author) and Robert Maxwell (founder of Houston-based Chowning Group) interviewing an eclectic group of guests spanning political figures, media personalities, professional athletes, business magnates, and thought-leaders.“Livin’ With Me” podcast

“Livin’ With Me” podcast

18 DAYS AGO“Livin’ With Me” podcast – pop culture, current events, conspiracy, “Black Mirror Rewind”, “Music of the Month”, rock n’ roll, 90’s podcasts and other showsOn The Merits

On The Merits

18 HOURS AGOBloomberg Law’s On The Merits brings you the biggest legal stories of the week, coupled with smart interviews and analysis on a variety of legal topics. You’ll hear voices and perspectives from across the legal industry, including reporters, editors, attorneys, legal scholars, and general counsel. And, from time to time, we’ll pull out a court filing or legal opinion from the week that, for whatever reason, piqued our interest. Host: David Schultz.The Morning Four

The Morning Four

1 YEAR AGOThe Morning Four is a weekday podcast that lasts 5 minutes or less and contains two fun facts, one feel-good news story and ends with an affirmation. Host Katie Parsons intends to start each day on the right foot, no matter what else is happening in the world.Cochrane Library Podcasts

Cochrane Library Podcasts

6 DAYS AGOCochrane produces systematic reviews which are recognized as the highest standard in evidence-based health care resources. Listen to Cochrane review authors explain in plain language the evidence and findings of their high-impact reviews. In 5 minutes or less, healthcare professionals to patients and families can understand the latest trusted evidence to help make better informed decisions.healthylivingradio’s Podcast

healthylivingradio’s Podcast

8 YEARS AGOHealthy Living from the Cooper Aerobics Center is designed for listeners of any age who want to gain research-based, practical information that can improve the way they look and feel. The program focuses on timely topics in the areas of health, fitness, nutrition, and lifestyle. The program features Dr. Ken Cooper along with members of the Cooper Aerobics Center staff and is hosted by Todd Whitthorne.It’s Time Podcast-Startup Inspiration, Entrepreneur Hustling to Build a Dream Business

It’s Time Podcast-Startup Inspiration, Entrepreneur Hustling to Build a Dream Business

5 YEARS AGOLearn about the ups and downs and lessons learned while starting a business . . . Oh, and did we mention that Bethanie is doing all of this while juggling a demanding life as a wife, mom, caregiver, and full time employee? Join Bethanie as she builds her company, Memnto, from scratch. Bethanie’s mother’s life inspired her to start her own business that will help us preserve our family histories, as she balances her already busy and full life. It’s real talk about the universal challenges tha …Oak Springs Chiropractic HealthNews

Oak Springs Chiropractic HealthNews

1 DAY AGOCourtesy of Oak Springs ChiropracticThe Art of Aging

The Art of Aging

24 HOURS AGOThe Art of Aging seeks to provide information and inspiration on how to improve our lives as we grow older. This podcast is produced by the Dayton Foundation Encore Fellows Initiative and the Ruth Frost Parker Center of Abundant Aging.The Pelvic Health Podcast

The Pelvic Health Podcast

26 DAYS AGOPodcast for professionals, as well as the general public, on all things related to pelvic health. Interviews with leading experts. Hosted by physiotherapist Lori Forner, BScH, MPhtySt, PhD candidateTeb Talks

Teb Talks

4 YEARS AGOWelcome to Teb Talks! Here’s a taste of what’s to come every fortnight as I put the world rights with my friends. I am taking on a personal mission to undo the taboo around so many everyday issues that women (and men) go through such as depression, jealously, miscarriage, taking back our cheating boyfriends, live at home adults, bikini waxes, periods….the list goes on. The things we talk about together in private but we don’t see reflected back at us in any public way!Research and insights from CPFT NHS FT

Research and insights from CPFT NHS FT

7 WEEKS AGOAt Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) we are dedicated to providing high quality care with compassion. We deliver many of the NHS services that are provided outside of hospital and in the community such as physical, mental health and specialist services. We provide integrated physical and mental health services for adults and older people; specialist mental health and learning disability services; children and young people’s mental health services; children’s communi …Food is Medicine with Patrick Holford

Food is Medicine with Patrick Holford

ImperfectlyPerfect Podcast

2 DAYS AGOBe sure to join Founder and Creator; Glenn Marsden of the Global Imperfectly Perfect Campaign as seen though out international publications and networks sharing real life stories from real life people to unite them in global change for the face of mental health and reduce the stigma, creating communication, healing and awareness to save lives and inspire. Join Glenn weekly as he talks to some of the highly acclaimed faces, influencers, experts and those who have been through extreme adversity.ASU College of Health Solutions

ASU College of Health Solutions

2 YEARS AGOTalk about creating better health, health care outcomes and a new kind of health professional.Move or Improve with Debbie

Move or Improve with Debbie

9 DAYS AGOHost Debbie Miller discusses relevant topics about housing issues and how the Sandwich or Boomer Generation can decide what works best for them. Should they age-in-place or move? If they move, where should they go; and if they stay, then what should they do? She draws on decades of experience in real estate, remodeling, and senior housing to provide solutions for all ages.UCD Humanities Institute Podcast

UCD Humanities Institute Podcast

7 WEEKS AGOThis podcast series features recordings of academic papers from workshops, conferences and seminars in the University College Dublin Humanities Institute. The UCD Humanities Institute provides a creative architectural and conceptual space for interdisciplinary research in the humanities and allied disciplines. The Institute forms an integral element within UCD’s strategic mission to develop as a research intensive university and has set itself the objective of enhancing the critical mass and …Vital Presence – Shaping a new story

Vital Presence – Shaping a new story

43 WEEKS AGODon’t settle for someone else’s story about your life! Your 3rd Act of life is the time to be fully you. In our 3rd Act series. you’ll learn to thrive post-midlife; In our StoryPros series, you’ll learn how stories can transform your life in our StoryPros series. Sally Fox, Ph.D., veteran coach, consultant and writer interviews thought leaders who are shaping the narratives that are shaping the world. Find out more at http://www.vitalpresence.com.Transition Aging Parents

Transition Aging Parents

6 YEARS AGO“Transition Aging Parents” is a free radio show created and hosted by Dale Carter, founder of TransitionAgingParents.com. This show will focus on issues of caregiving, family communication, financial and estate issues, respite options, and first-person stories by older adults.The Peter Attia Drive

The Peter Attia Drive

DA Rockstars for Dental Assistants

1 DAY AGOThis podcast is for all the dental assistants out there ready to up their game to DA Rockstars!Get ready to catch some pearls of knowledge. #dentalassiatantsrockI Hear Design: the i+s podcast

I Hear Design: the i+s podcast

2 DAYS AGOI Hear Design is your source for interior design and architecture news, interviews and opinions. Send any questions to iheardesignpodcast@gmail.com Support this podcast: https://anchor.fm/iandsdesign/support Wisdom of the Wounded

Wisdom of the Wounded

5 WEEKS AGOCaregiver support, sharing information and help when caring for someone suffering a life crisis – grief, illness, loss, relationship, death, old age, etc.Elevate Eldercare

Elevate Eldercare

9 HOURS AGONursing homes rarely garner positive attention, particularly from the media, and especially since the onset of COVID-19. Join Susan Ryan, senior director of The Green House Project, each Wednesday for enlightening, provocative, and sometimes uncomfortable conversations with thought leaders who offer diverse perspectives aimed at elevating eldercare. Susan and her guests explore the opportunities and challenges to actualizing a vision for dignified eldercare through the lens of the Green Hous …FMEC Podcasts

FMEC Podcasts

15 DAYS AGOThis is The Family Medicine Education Consortium, Inc. (FMEC) podcast channel. The FMEC connects those interested in improving the health of the community by strengthening Family Medicine/primary care services and medical education. Our primary area of focus is the northeast region of the U.S. We believe Family Medicine is critical to improving the health of the nation. We‘re working to achieve the full potential of Family Medicine.It’s Just Wallpaper

It’s Just Wallpaper

5 WEEKS AGOSince graduating with a Master’s Degree in Hospital Administration in 1972, I have had the opportunity to work in acute care hospitals, nursing homes, assisted living, retirement communities, home health, hospice and adult family homes. Along the way, I owned and operated a small multi-story nursing care and retirement facility, as well as four adult family homes.As the Director of multiple nursing homes, I was frequently asked about long-term care insurance. In order to provide credible inf …The New World Pictures Podcast

The New World Pictures Podcast

5 DAYS AGOThe New World Pictures Podcast is dedicated to every movie released by New World Pictures. Founded by the infamous Roger Corman, New World Pictures was responsible for all those movies that lived proudly in the back isles of the video store. From Death Race 2000 to Hellraiser, we talk about them all. We talk about every single movie and the history behind its production. Some movies are great. Some are bad. All of them are New World.Advances in Long Term Care Medicine

Advances in Long Term Care Medicine

10 YEARS AGOAdvances in Long Term Care Medicine is produced in cooperation with the American Medical Directors Association (AMDA), the only national organization representing long term care physicians and professionals. This series addresses the most relevant clinical and practice management issues facing those working in long term care settings.So What? Library and Information Science Podcast

So What? Library and Information Science Podcast

9 DAYS AGOA podcast about library and information science research, and why it matters. Created and managed by students at the Faculty of Information and Media Studies(FIMS)at Western University in London, Ontario, Canada.TED Talks Kids and Family

TED Talks Kids and Family

7 WEEKS AGOFun videos to inspire, intrigue and stir your imagination from some of the world’s leading thinkers and doers onstage at the TED conference, TEDx events and partner events around the world. You can also download these and many other videos free on TED.com, with an interactive English transcript and subtitles in up to 80 languages. TED is a nonprofit devoted to Ideas Worth Spreading.Radio Health Journal

Radio Health Journal

3 DAYS AGOListen to Radio Health Journal to get the latest scoop on what’s trending in health, science and technology, and the intersection of medicine and public policy. Each week we speak with leading experts to break down the complex medical jargon and report on a timely topic. Did you know ecstasy could help to cure PTSD? What does “Medicare for All” really mean? These subjects and more with two stories weekly, plus Medical Notes – a short recap of the top medical headlines in the news. Hosted by …Kessler Foundation Podcasts

Kessler Foundation Podcasts

22 DAYS AGOKessler Foundation – Changing the lives of people with disabilities through research in stroke, brain injury, multiple sclerosis, spinal cord injury and by funding innovative programs that promote employment for people with disabilities. Podcasts are from various consumer and professional lectures presented by our researchers and guest lecturers.Vertical Hold: Behind The Tech News

Vertical Hold: Behind The Tech News

NeuroFrontiers

4 WEEKS AGOClinical research and advancements furthering clinicians’ ability to diagnose and treat neurological disorders never stop. And neither does NeuroFrontiers, a series dedicated to covering them all. Here neurology specialists will find essential updates on conditions affecting the nervous system, spinal cord, and overall brain health. So if you want to stay up to date on the latest clinical research and news on neurological disorders, then look no further. Because NeuroFrontiers is where neuro …Nursing Today

Nursing Today

2 YEARS AGOThis lecture series features highly-rated talks by outstanding speakers who presented at University of Washington events. Earn contact hours as you listen to experts discuss healthcare trends, legal and professional issues, self-care, patient safety and best practice—with a focus on evidence-based nursing. UWCNE is proud to be accredited with distinction as a provider of Continuing Nursing Education by the American Nurses Credentialing Center’s Commission on Accreditation (ANCC).OT Potential Podcast | Occupational Therapy CEUs

OT Potential Podcast | Occupational Therapy CEUs

19 DAYS AGOThis podcast is for occupational therapy practitioners and students looking to keep up with evidence based practice. Each month, we discuss one influential OT-related journal article which will be available for CEU credit when you join the OT Potential Club.FOXcast PT

FOXcast PT

6 WEEKS AGOFOXcast PT: the podcast for clinicians made by clinicians. It’s brought to you by FOX Rehabilitation. Find out more at foxrehab.org. The purpose of our show is to have professional conversations about PT for older adults. (Tim Fox, PT, DPT, GCS | License #40QA00702100 | 7 Carnegie Plaza Cherry Hill, NJ 08003 | 877-407-3422)Chicken Soup for the Soul with Amy Newmark

Chicken Soup for the Soul with Amy Newmark

8 HOURS AGOStart your days with inspiration and motivation from the best of Chicken Soup for the Soul and editor-in-chief Amy Newmark. There’s nothing like learning from the personal, revealing stories of other people. Amy shares her favorite stories and the wisdom, advice, and easy-to-implement tips that thousands of people have shared in 25 years of Chicken Soup for the Soul books. Tips and advice on Mondays and Wednesdays, and interviews with fascinating writers and influencers on Friend Fridays. It …Dr. Bond’s Life Changing Wellness

Dr. Bond’s Life Changing Wellness

Heart of Senior Care

25 WEEKS AGOGet ready to laugh, cry, and be inspired with the resilience of the human spirit. The Heart Of Senior Care podcast shares years of industry knowledge in a real way, designed for real people like you, while celebrating elders every day. By joining our community, you gain access to elder care consultant Kelly O’Connor on a personal level, enjoy weekly interviews with senior care professionals and caregivers, and ask questions in a safe space that reminds us all, we are not alone on the elder c …Live Forever Young

Live Forever Young

3 HOURS AGOTo Live Forever Young, health & knowledge should be your 2 Best Friends. Boomers Forever Young has been helping people with Powerful Stress Management Techniques, Life Hacks, Tips and Advanced Nutritional Knowledge since 2010. On Live Forever Young Radio you will become informed and inspired to help keep You, Living Your Best Life. We are guided by the belief that our services and products are an extension of our soul, and now we are excited to share with a whole New Audience. We dedicate Li …The Spark

The Spark

5 WEEKS AGOPresenting the people and stories behind medical education at the University of California, San Francisco School of Medicine and our community of learners.Real Talk with Laurie

Real Talk with Laurie

2 YEARS AGOReal Talk With Laurie with host Lauire Bowen shows her tenacity and determination as she brings guests who inspire and transform you; while Laurie’s humour and easy going nature will keep even the most depressing of topics, light. Laurie’s faith, compassion and capacity for empathy is her greatest strength and as you tune in you will feel immediately at ease when you call in, so give her a call – don’t be shy. Laurie Bowen has lived a life of trauma and abuse and yet she continues to rise. H …Neuro Pathways: A Cleveland Clinic Podcast for Medical Professionals

Neuro Pathways: A Cleveland Clinic Podcast for Medical Professionals

13 DAYS AGONeuro Pathways Podcast Description: A Cleveland Clinic podcast for medical professionals exploring the latest research discoveries and clinical advances in the fields of neurology and neurosurgery. Learn how the landscape for treating conditions of the brain, spine and nervous system is changing from experts in Cleveland Clinic’s Neurological Institute.The Staying Young Show 2.0 – Entertaining | Educational | Health & Wellness

The Staying Young Show 2.0 – Entertaining | Educational | Health & Wellness

1 YEAR AGOWith all the mixed messages on health, you need information that you can use and that you can trust. Listen in as the experts discuss all topics health related. It’s time to STAY YOUNG and stay healthy! Each week we tackle a topic and often with leading scientists, best selling authors, and even your favorite celebrities!Edge of Aging

Edge of Aging

5 WEEKS AGOA podcast that aims to open minds by examining aging, caregiving, and the intersection of healthcare as an opportunity to reshape how we partner in care. Thought leaders Cooper Linton and Nicole Clagett are reimagining aging and eldercare one idea at a time.JNNP podcast

JNNP podcast

9 DAYS AGOJNNP’s ambition is to publish the most ground-breaking and cutting-edge research from around the world. Encompassing the entire genre of neurological sciences, our focus is on the common disorders (stroke, multiple sclerosis, Parkinson’s disease, epilepsy, peripheral neuropathy, subarachnoid haemorrhage and neuropsychiatry), but with a keen interest in the Gordian knots that present themselves in the field, such as ALS. * The purpose of this podcast is to educate and to inform. The content o …Caregiver SOS On Air

Caregiver SOS On Air

1 DAY AGOThis hour-long weekly radio show airs 6 p.m. Sundays on NewsTalk 930 (AM) KLUP in the Greater San Antonio region. Hosted by nationally recognized gerontologist Carol Zernial and veteran broadcaster Ron Aaron, and featuring author/psychologist Dr. James Huysman PsyD, LCSW, Caregiver SOS On Air explores issues important to you.FivesSquared’s podcast

FivesSquared’s podcast

3 YEARS AGOToday’s ever-changing business landscape requires companies to continually evolve by adopting increasingly smarter and more efficient solutions to remain competitive. Strategic work “on the business” and not just “in the business” must be a priority for leaders looking to drive measurable, strategic growth. FivesSquared specializes in integrated business and technology consulting driven by the belief: smart solutions must be developed based on strategic goals and driven by smart tools. From …NOUS

NOUS

Evolving Past Alzheimer’s

2 DAYS AGOWe are absolutely convinced that Alzheimer’s and other brain diseases are generally treatable and reversible. Early translational evidence supports this belief. The Evolving Past Alzheimer’s podcast brings you the highest caliber information about what you can do to identify, prevent, and treat Alzheimer’s disease. The show’s secondary goal is to use Alzheimer’s and cognition as a platform to explore consciousness and the human experience in it’s “second half of life.” Topics include emergin …Life After 50 Show

Life After 50 Show

44 WEEKS AGOIt’s what you need to know!The second half of your life may bring new challenges and opportunities. We are here to help you navigate Medicare, caring for aging parents or a spouse, retirement options, new employment options, health challenges and so much more. Let us know what you want more information about and we will be happy to provide. Your host Kathryn Watson brings in experts in all areas to interview. Listen to real people who offer real advice about living life to the fullest in the …David Essel Alive!

David Essel Alive!

50 WEEKS AGODavid Essel’s mission is to help you become more alive in every area of your life. David is a best-selling author, counselor, master life coach, all faiths minister, and inspirational speaker. Each week David will address issues that matter to you such as relationships, finances, depression, addiction, and anything that is keeping you from living your best life. Call in to share your story or to connect for help, motivation, and strategies to tackle the world today.“David is the radiant soul …Thoughtful Mind with Tzvi

Thoughtful Mind with Tzvi

1 YEAR AGOThoughtful Mind with Tzvi is a weekly podcast about Personal Growth, Mental Health, and Interesting Ideas. Each week, we talk about becoming a better person, address the pain in our lives, or spend time with a challenging thought. Along the way, we will talk about depression, anxiety, addiction, happiness, and how to find meaning in your life. Although Tzvi is the host, we’d like to hear what you have to say, and make it a part of the show! Contact us by email or voicemail, and visit the web …Uehiro Centre for Practical Ethics

Uehiro Centre for Practical Ethics

5 WEEKS AGOA selection of seminars and special lectures on wide-ranging topics relating to practical ethics. The Oxford Uehiro Centre for Practical Ethics was established in 2002 with the support of the Uehiro Foundation on Ethics and Education of Japan. It is an integral part of the philosophy faculty of Oxford University, one of the great centres of academic excellence in philosophical ethics.Rotary Speakers

Rotary Speakers

7 YEARS AGOPublic presentations delivered at the weekly lunches of The Rotary Club of Dublin-WorthingtonGPWorks

GPWorks

1 YEAR AGO AgeSpace Podcast

AgeSpace Podcast

2 YEARS AGOA new podcast sharing advice on elderly care from AgeSpace.org.The Voice of the Patient

The Voice of the Patient

4 YEARS AGOThe mission of The Voice of the Patient is simple: To change lives, that is, to improve the care and quality of the lives we touch by improving healthcare through not only hearing, but truly listening to the voice of the patient.The LIONESS ROAR

The LIONESS ROAR

11 DAYS AGODo you want to achieve something great in your life? Do you lack the focus required to reach your goals? The Lioness embodies attitude, creativity, imagination, originality, vision, inspiration, resilience and resourcefulness. This podcast provides answers that will help you improve your confidence and performance and find the success you want! Each one of us has a dream, whether it is something enormous like winning an Olympic gold or something ordinary and more easily achieved, like owning …Thinking Philosophy

Thinking Philosophy

1 YEAR AGODelve into the world of ideas, ethics and deep reflection with philosophers committed to the examined life.WISERD Podcasts

WISERD Podcasts

3 YEARS AGOPodcast by WISERDBarbara Dicker orations

Barbara Dicker orations

2 YEARS AGO True Health Recovery

True Health Recovery

7 DAYS AGOHow many people do you know who struggle with their health? Chances are, whether they show it or not, most of the people in your life do. And chances are, you’re one of them — whether you’re dealing with anxiety, depression, endometriosis, pcos, acne, eczema, psoriasis, autoimmune, thyroid conditions, lyme disease, brain fog, or fatigue. You’re far from alone. Living with symptoms has become the new normal. Much of the time, people coexist with their ailments, accepting them and never questi …FOXcast OT

FOXcast OT

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Lewy Body Dementia Preparing For End Stage End Of Life Care

As stated in our blog declaration we will always try our very best to search and find the latest up to date information available wherever we can find it upon the web so that you can access it more easily all in one place.

Please be aware that the information we collect will not always be from one country alone or the country you reside in at present, but nonetheless the information may still be very helpful and informative.

Dated May 7, 2020

This webinar was recorded and can be viewed for free on YouTube here.

Source Stanford PD Community Blog

The presentation began with an acknowledgment from Dr. Katz about the presentation: these are difficult topics that may be sad or challenging to think about.

Still, it is important to have this kind of information to help you plan and prepare for the future. Topics included what caregiving is like in advanced LBD, end-of-life care, indicators of the individual’s prognosis, and advance care planning.

Within the palliative care field, there is a concept called “total pain,” which posits that the physical pain experienced by the sick individual is only part of all the suffering caused by the disease.

The illness impacts the entire family, including the caregiver, and all family members may experience suffering in the physical, psychological, social, and spiritual realms. Unfortunately, physicians rarely bring up end-of-life issues, and less than half of caregivers say they felt prepared for what was to come.

Caregiving in advanced LBD is very challenging and often causes grief, guilt, and existential distress.

Anticipatory grief, a feeling of mourning for an expected future that has been lost, is common. Most caregivers at this stage of illness never feel that they are doing a good enough job of caregiving, even though they are.

This feeling of guilt is common and is a normal part of the situation that should be acknowledged. Finding support from a friend circle, support group, faith community, or family is essential. Spiritual care or counseling can be very helpful for the caregiver, family, and person with LBD during this time, to help find perspective.

Resilience isn’t only about enduring; it’s about how you are able to recharge and bounce back. It is not about becoming stoic and being able to endure an increasingly burdened situation; rather, it is about your ability to take a break and recover from a challenging situation.

Caregiver burnout is real: it affects health outcomes and leads to higher mortality in caregivers. Burnout is a healthy, adaptive response – an alarm to notify us that something needs to change before this gets worse. It’s important to notice the alarm is ringing, often by practicing mindfulness and self-care.

What does self-care look like?

Monitor yourself for signs of caregiver burnout: feelings of exhaustion, irritation, or frustration.
Promote your own well-being and seek balance.
Think of it as putting on your own “oxygen mask” on before you help others.
Build resilience in yourself.
Strengthen meaning and purpose in life: remember why you have chosen to care for this person.
Connect with yourself and with others: “connection is protection.”
Broaden your understanding of your options and choices (self-efficacy): remember that you do have a choice in how you handle situations, even if they are quite difficult.

Palliative care focuses on improving the quality of life of patients and their families facing serious illness. It seeks to affirm life and provide relief from pain, while offering a support system to the family and the patient. While palliative care services can be particularly essential later in the disease, increasingly it is recognized as having great value earlier in the course of the illness as well. In some studies, palliative care not only improved the quality of life, but also the length of life.

Motor symptoms

Increased slowness and stiffness can cause discomfort and pain and can lead to contractures. Contractures are stiffness or constriction in the muscles, tendons, or ligaments, which prevent the extremity from moving and can cause severe pain. Falls often increase due to the loss of balance and impulsivity. Supervision around-the-clock becomes necessary. Patients become wheelchair-dependent, and, eventually, many will become bedridden.

There are a number of strategies and techniques to manage these issues:

Range of motion exercises (independent or assisted) and massage to help prevent contractures
Skin care to ensure skin is clean and dry
Change positioning every 2 hours to prevent formation of pressure ulcers
Use a gait belt to help walk and transfer safely
Mechanical lifts may be needed eventually
Use specialized cushions or mattress to prevent pressure ulcers
Broda specialized positioning and mobility chairs

Dr. Katz mentioned a 2019 study in the New England Journal of Medicine entitled “Rehabbed to Death,” which found that for a minority of older adults, sometimes a stay in rehab facility after a hospitalization is actually a gateway into a cycle that sends the individual from the rehab facility back to the hospital, then back to rehab, in their final months of life. The rehab facility in this case is not really able to “rehabilitate” or improve the person’s health or quality of life; more accurately, this should be called “post-acute” care. This can be in part due to payment structures within Medicare and Medicaid that perpetuate the cycle, and it does not generally represent a good quality of life for someone in their final months or weeks.

If your loved one with LBD is hospitalized and you are recommended to send them to sub-acute rehab, it is more of a post-acute care convalescent home rather than a rehab facility. It is something to be aware of.

Communication

In advanced LBD, communication often becomes quite difficult. Voice changes, poor attention, confusion, and word-finding problems are common; impaired communication can also lead to anxiety or agitation.

Some basic tips:

Say “yes, and…” – do not argue, even if they are hallucinating or confused.
Speak clearly in a calm voice. Tone is often more important than content. Be aware of your tone and facial expressions.
Ask “yes” or “no” questions rather than open-ended questions.
Maintain eye contact.
Offer a reassuring response to frequently asked questions.
Find a place and time to talk without distractions.
Refer to people by their names instead of pronouns like he or she, to avoid confusion.
Talk about one thing at a time.
Have patience.
When giving instructions, use simple sentences – one piece of information at a time.
Recognize what you’re up against.
Understand that there will be good days and bad days.

Psychiatric symptoms

Those with advanced LBD often experience hallucinations that may be severe and frightening. Make their neurologist and psychiatrist aware if this is happening.

Behavioral treatments include figuring out or anticipating some possible triggers of the hallucinations or agitation. Cover reflective surfaces, as mirror images are often disturbing to those with advanced LBD. Use a calm tone of voice and avoid confrontation.

At the end of life, hallucinations and psychosis are often so severe that they need medication treatments to help control the symptoms.

The “Five R’s” from the Family Caregiver Handbook:

Remain calm.
Respond to the person’s feelings.
Reassure the person.
Remove yourself.
Return when you are calm.

Eating and taking medications

Most people will need help with feeding once the disease is advanced. Keep the patient as involved and independent as they can be; finger foods can sometimes allow them to feed themselves for longer than a fork and knife. Using a plate in a contrasting color can help your loved one to be able to distinguish the food from the plate. Always position them in the upright position when eating, and continue to sit upright for 20-30 minutes after a meal.

Sometimes, those with LBD may refuse to eat due to confusion or hallucinations. They may also experience swallowing problems, such as choking, aspirating food into the lungs, or forgetting how to swallow so that food stays in the mouth.

Recommendations:

Do not use thickeners; evidence shows they can actually worsen quality of life.
Try carbonated beverages.
Try smoothie-consistency drinks; thin liquids are most difficult.
Give medications with applesauce or something of a similar consistency.
Alternate between a bite of food and a sip of fluid.
Have them do a chin tuck when swallowing.
Benevolent trickery is sometimes necessary.

Weight loss

Weight loss is expected for those with LBD and is an indication of end-stage disease. Anorexia (lack of eating) and cachexia (weakness and wasting of the muscles) are common. It may seem counter-intuitive, but high-calorie supplements or appetite stimulants will not help with these issues and can actually worsen quality and quantity of life. It can be very hard to see the number on the scale continuing to drop, but it’s not something we can fix – it’s a hallmark of end-stage LBD.

Toileting and incontinence

Give your loved one as much privacy and independence as is consistent with their safety. Give them extra time, assess if they need help, and acknowledge that it may be uncomfortable or embarrassing for them. Timed voiding – visiting the bathroom at regular times throughout the day – can be very helpful to keep them comfortable and avoid accidents. A pad inside the absorbent briefs can provide extra protection. The Liberty catheter is an external catheter that goes on at bedtime, which can be helpful. Consider keeping a urinal or commode at the bedside so they do not have to get up to the bathroom overnight.

Dental care

It’s important to continue dental care. Brush teeth twice a day; eventually, they will likely need assistance with this task. A little bit of lemon juice can aid in swallowing and help clean the palate.

Practices to avoid in advanced LBD

In the past, patients with swallowing difficulties were often given thickened liquids. However, recent studies have shown this is actually a harmful practice and should not be continued! Thickened liquids are generally so unpalatable that people often refuse to drink them, which can lead to dehydration and kidney damage.

Feeding tubes are another practice in those with dementia that have now been shown to be counter-productive: artificial nutrition does not prolong or improve life for those with advanced dementia. Rather, assisted oral feedings are the best course. Post-operative pain and infection after feeding tube insertion, as well as increased likelihood of delirium and repeat surgeries, are some of the reasons why this practice is no longer recommended. Caregiver burden often increases as well.

Fluctuations in alertness

As LBD progresses, individuals will have more and more fluctuations of alertness. This often presents as seeming “zoned out” for a few minutes, and then they come back to normal. It is not a medical emergency, and there is no known treatment.

End-of-life care: Days to weeks

At this point, most people are bedridden. Focus on creating comfortable surroundings. Bring nature indoors, if possible, and play your loved one’s favorite music. Soothing touch, such as a gentle massage, can be relaxing and pleasurable. Smells such as lavender oil can be pleasant as well.

In terms of medications, if Sinemet (carbidopa-levodopa) has been helpful for them, continue it for as long as possible. Reduce other medications to only what is necessary, or will help them remain comfortable. If liquid formulations of medications are available, switch to those; if the person is unable to swallow, then suppositories may be the best option. Most patients at this stage of LBD will need sedating medications to control the agitation and psychosis that generally increase at the end of life.

Prognostic indicators in LBD

There are certain indicators that provide a prognosis – the likely course or time frame of late-stage LBD. These indicators are used by Medicare to determine eligibility for hospice services, which require an estimate of six months or less of life.

For those with weight loss, these are the same criteria as for “Adult Failure to Thrive,” a different medical diagnosis. The main criteria for hospice eligibility are a body mass index (BMI) of less than 22, and a score on the Palliative Performance Scale (PPS) of 40 or less, indicating someone who is mainly in bed and needs assistance with activities of daily living (ADLs). These two factors are strong indicators that someone is likely within 6 months of the end of their life, and should receive hospice services to ensure the best care.

For those with dementia, hospice eligibility requires at least one of the following in the past 12 months:

Aspiration pneumonia
Pyelonephritis (kidney infection)
Septicemia (infection of the blood)
Stage 3 or 4 pressure ulcers
Recurrent fever
10% weight loss (or greater) in the past 12 months
Albumin less than 2.5 mg/dL (measurement of protein indicating malnutrition) and greater than or equal to 7C on the FAST scale:

Speaks 5-6 words per day
Speaks only 1 word clearly per day
Cannot walk without personal assistance
Cannot sit up without personal assistance
Can no longer hold up head independently

What do people die of in LBD?

There have been very few studies on this question. For most, aspiration pneumonia – a lung infection caused by inhaling food or oral secretions into the lungs – is the cause of death. Sometimes aspiration pneumonia leads to sepsis, an extreme reaction by the body in response to a systemic infection, which can be fatal. Reduced mobility, falls, or fractures can also be life-threatening. Failure to thrive, which is the severe weight loss associated with late-stage dementia, is another cause as well.

Hospice care: Role of the neurologist

Right now, only about 5% of patients with LBD will receive hospice services

It’s important that more LBD patients and families receive the help and care available to them through hospice. Your loved one’s neurologist can still play a helpful role even after hospice is involved, by helping to communicate and coordinate with the hospice team and educating them about the specific needs of LBD patients, such as medications that are commonly used in a hospice setting, but which should NOT be given to those with LBD.

Medications to avoid in hospice patients with LBD:

Haloperidol (Haldol)
Metoclopramide
Phenergan

Alternative medications that are safer to use in LBD are quetiapine (Seroquel) for agitation/psychosis and ondansetron (Zofran) for nausea.

The Advance Healthcare Directive is a legal document that allows an individual to spell out their preferences for life-saving medical interventions and end of life care, ahead of time, and designates an individual who is empowered to make healthcare decisions on their behalf, if necessary. This requires that you speak with the loved one about their wishes while they are still able to consider such decisions.

www.prepareforyourcare.org

Most people who go into cardiac arrest are not able to be resuscitated successfully; only 5% of people with dementia who undergo CPR survive. It is not like the movies; the chances of a good recovery are actually quite small, contrary to the portrayal in the movies. The POLST (Physician’s Order for Life Sustaining Treatment) is a form, usually yellow, that tells emergency professionals what to do in a crisis when the patient cannot speak for themselves.

Dr. Katz cited a quote from the book Being Mortal: Medicine and What Matters in the End by Atul Gawande, MD:

“… Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer.”

Two questions to ask around advance care planning:

If you look ahead, what worries you the most?
When you look to the future, what are you hoping for? (in addition to a cure)

“Our ultimate goal, after all, is not a good death, but a good life to the very end.” – Atul Gawande, MD

Lewy Body Dementia: A Doctor’s Story

Below we post yet another touching and revealing personal testimony from a doctor concerning Lewy Body Dementia.

When I finished my training, I was taught that the vast majority of dementia was Alzheimer’s disease, with occasional cases of multi-infarct dementia as well as odd syndromes such as Kreutzfeld-Jacob disease and genetic, traumatic, toxic and tumor-related syndromes.

Parkinson’s disease, we were taught, caused a tremor and freezing up of a person’s movements and only very rarely was associated with any kind of memory loss.

These teachings helped us modern doctors leave behind terms such as “senility” or “hardening of the arteries” to explain cognitive loss. We still had no useful tools to change the course of dementia, but we were more scientific in our description of it.

In the last several years, however, neurologists have determined that there is a very common dementia that is associated with Parkinson’s disease.

Lewy body disease or Lewy body dementia was a condition that I had been taught was not only uncommon but only accurately diagnosed at autopsy or with a brain biopsy.

It appears, now, that it is quite common, comprising up to 30% of cases of dementia.

It is more common in men than in women, like Parkinson’s disease but not like Alzheimer’s disease and is more common in people who have higher educational attainment.

It is characterized by collections of protein known as Lewy bodies that are found throughout the cerebral cortex, rather than just in the movement centers of the midbrain, as in Parkinson’s disease.

There are some medical tests that will help to diagnose Lewy body disease, but they are not commonly performed. It is most commonly diagnosed by the identifying 2 of 4 common clinical features. These are:

Fluctuating cognition with varying levels of consciousness and alertness. They will fall deeply asleep and be unarousable or be very slow and confused, lasting hours sometimes, then improve to a more normal baseline, laughing and participating in conversations. Family will sometimes think they have had a stroke or a seizure.
Visual hallucinations. These may be quite detailed.
REM sleep disorder. Patients will often talk in their sleep or do complex movements, often getting up and walking or performing complex behaviors. This can be disturbing and even dangerous to a bed partner.
Motor features of Parkinson’s, including pill-rolling tremor, slow movements and rigidity. These features almost always follow the development of memory loss.

Patients have other clinical features such as depression, anxiety, apathy and loss of executive function (unable to clean a closet, sort and pay bills or put together a photo album.) They often have autonomic dysfunction, with fainting spells due to drop in blood pressure or inability to tolerate changes in temperature. They become unstable in their walking or standing and fall frequently. They have urinary incontinence. They have delusions that are detailed and hard to shake.

My father had this and I didn’t recognize it until about 3 months before his death.

He was a very smart man, having graduated in physics from Caltech and then worked with early computers and was an important part of the space program. He worked on developing electric cars and wind power and studied the feasibility of oil shale and tar sands (not feasible and not efficient, he concluded.)

He brought a supercomputer to the island of Maui and helped jump-start their technology industry. He was funny and engaging and had a knack for encouraging others by being a springboard for their ideas. He was the most compelling conversationalist I have ever known and played a mean game of scrabble.

When he lost his wife to cancer 12 years ago he began to notice some disturbing memory failures. He put those down to the stresses of home hospice and the depression that followed her death. He was capable with his laptop computer and enjoyed the early handheld computing devices, but when he got his first smartphone, the technology became more difficult for him to learn.

He could use email, but forgot how it worked and never learned to access it with his iPhone. He took on the position of board president with an academic organization and wasn’t able to keep up with what he needed to do. He resigned and felt terrible about that. He tried to take blood pressure medication but would pass out unexpectedly so stopped it. He kept all of his mail and couldn’t figure out how to file it, feeling ashamed about the state of his desk. He flailed and talked in his sleep so much that his wife had to go to bed elsewhere. He would wake up at 4 in the morning, inconsolably sure that he needed to catch a plane or teach a class.

He fell frequently and when he walked or stood, would lean to one side, unaware that he was doing it. It was nerve-wracking to walk with him because he refused to take an arm and never learned to use a walker or cane. He slept more, often while sitting up, and had periods of unresponsiveness that were alarming. His falls were not minor and he gashed his face and ripped the skin on his arms, broke his hand and hit his head hard enough to spend an agitated night in the hospital. His writing became small, shaky and cramped.

It was clear he had dementia and that it wasn’t a normal kind. He saw a neurologist who thought he might have Parkinson’s disease and a wonderful gerontologist who diagnosed Alzheimer’s disease. His wife, who had been attending a dementia support group, had heard about how common Lewy body dementia was and suggested it might be that. I read the most recent literature and decided she was right. Not only did he have it, so had many of my patients over the years who I had thought had Alzheimer’s disease.

The fluctuations. The falls. The detailed hallucinations and delusions. The executive dysfunction. It isn’t subtle how different it is from Alzheimer’s disease. These are the people who come into the emergency department frequently when they are clearly worse than normal but improve overnight and return home, even though we think that’s a bad idea. They do fine until they fluctuate again and then are back. These are the difficult to handle patients with the mean delusions who drive their families or spouses nuts but are unmanageable in nursing homes. If Alzheimer’s disease were vanilla ice cream, Lewy body dementia would be rocky road, with real rocks.

My father was a sweet guy but this disease made him critical, unkind and selfish. But only sometimes. Only when we were so deliberately stupid that we didn’t understand that his reputation would be ruined if he didn’t get to the airport or to the lecture he was supposed to be giving. Only if we tried to help him walk when he could clearly do it better without our pushing him off balance. Only when he woke up scared and didn’t understand what was going on. At other times he was kind and appreciative and full of sweetness, humor and wisdom that he could no longer put express with words.

It was possible for him to stay at home with his wife for a long time with the help of caregivers. Eventually, however, the combination of impulsiveness, weakness and sleep disturbance made even 24 hour caregiver support inadequate and he had to be moved to a memory care center.

The facility was really wonderful, catering to the dotty, delirious and demented, many of them with what appeared to be Lewy body dementia. He perked up briefly after moving, but then began to sleep more, sitting up in his wheelchair. He still had up times, explaining the chemical properties of tungsten, listening to a talk I needed to practice and offering good questions. He became weaker, unable to hold a cup or a fork, barely able to lift a cookie. Eventually he didn’t wake up at all and two days later died peacefully, in the care of hospice.

Since his diagnosis, I have been much more aware of those demented people who don’t have Alzheimer’s disease. It helps to know, so we don’t compare them unfavorably. They aren’t just difficult people with dementia, they are regular people with difficult dementia.

Robin Williams, the gifted actor and comedian, developed a set of disturbing symptoms in the last years of his life that were unexplained but progressive and horrible. He said goodnight to his wife one evening (she slept in a separate room because of his sleep behaviors), went to his bedroom and hung himself. An autopsy showed severe Lewy body dementia. She wrote a letter to the journal Neurology detailing their medical odyssey. It is heartbreaking to read.

We have no useful treatments for Lewy body dementia. Sometimes benzodiazepines help a bit with the sleep disorder, but my experience was that they did nothing. Anti-psychotic medication is not helpful and often can worsen the symptoms significantly. Parkinson’s medication can help with the rigidity and tremor, but my experience was that, by the time that was prominent it was more helpful for my father not to have the ability to act out his impulsivity. A wheelchair was much safer. Cholinesterase inhibitors, used in Alzheimer’s disease, are recommended but don’t help much and can cause sleep problems, nausea and drooling.

I will miss my father. I will think about his voice, his conversation, his smile, his love of math and his scientific contributions. I will remember his smell, his wispy white hair and the way he loved to have his back scratched hard. I will not miss his last 6 months, though, and I resent those nasty Lewy bodies that infested his wonderful brain.

Dr. Janice M. Boughton is an internist in Moscow, Idaho and is affiliated with multiple hospitals in the area, including Gritman Medical Center and Good Shepherd Health Care System-Hermiston. She received her medical degree from Johns Hopkins University School of Medicine and has been in practice for more than 20 years.

Susan Williams: The Terrorist Inside My Husband’s Brain. Lewy Body Dementia.

Lewy Body Dementia (2)

We post the personal testimony of Susan Schneider Williams, widow of the late Robin Williams.

I am writing to share a story with you, specifically for you. My hope is that it will help you understand your patients along with their spouses and caregivers a little more. And as for the research you do, perhaps this will add a few more faces behind the why you do what you do. I am sure there are already so many.

This is a personal story, sadly tragic and heartbreaking, but by sharing this information with you I know that you can help make a difference in the lives of others.

As you may know, my husband Robin Williams had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease’s symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease. As you may know, almost 1.5 million nationwide are suffering similarly right now.

Although not alone, his case was extreme. Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.

Robin is and will always be a larger-than-life spirit who was inside the body of a normal man with a human brain. He just happened to be that 1 in 6 who is affected by brain disease.

Not only did I lose my husband to LBD, I lost my best friend. Robin and I had in each other a safe harbor of unconditional love that we had both always longed for. For 7 years together, we got to tell each other our greatest hopes and fears without any judgment, just safety. As we said often to one another, we were each other’s anchor and mojo: that magical elixir of feeling grounded and inspired at the same time by each other’s presence.

One of my favorite bedrock things we would do together was review how our days went. Often, this was more than just at the end of the day. It did not matter if we were both working at home, traveling together, or if he was on the road. We would discuss our joys and triumphs, our fears and insecurities, and our concerns. Any obstacles life threw at us individually or as a couple were somehow surmountable because we had each other.

When LBD began sending a firestorm of symptoms our way, this foundation of friendship and love was our armor.

The colors were changing and the air was crisp; it was already late October of 2013 and our second wedding anniversary. Robin had been under his doctors’ care. He had been struggling with symptoms that seemed unrelated: constipation, urinary difficulty, heartburn, sleeplessness and insomnia, and a poor sense of smell—and lots of stress. He also had a slight tremor in his left hand that would come and go. For the time being, that was attributed to a previous shoulder injury.

On this particular weekend, he started having gut discomfort. Having been by my husband’s side for many years already, I knew his normal reactions when it came to fear and anxiety. What would follow was markedly out of character for him. His fear and anxiety skyrocketed to a point that was alarming. I wondered privately, Is my husband a hypochondriac? Not until after Robin left us would I discover that a sudden and prolonged spike in fear and anxiety can be an early indication of LBD.

He was tested for diverticulitis and the results were negative. Like the rest of the symptoms that followed, they seemed to come and go at random times. Some symptoms were more prevalent than others, but these increased in frequency and severity over the next 10 months.

By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels—just to name a few—were settling in hard. Psychotherapy and other medical help was becoming a constant in trying to manage and solve these seemingly disparate conditions.

I was getting accustomed to the two of us spending more time in reviewing our days. The subjects though were starting to fall predominantly in the category of fear and anxiety. These concerns that used to have a normal range of tenor were beginning to lodge at a high frequency for him. Once the coroner’s report was reviewed, a doctor was able to point out to me that there was a high concentration of Lewy bodies within the amygdala. This likely caused the acute paranoia and out-of-character emotional responses he was having. How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.

In early April, Robin had a panic attack. He was in Vancouver, filming Night at the Museum 3. His doctor recommended an antipsychotic medication to help with the anxiety. It seemed to make things better in some ways, but far worse in others. Quickly we searched for something else. Not until after he left us would I discover that antipsychotic medications often make things worse for people with LBD. Also, Robin had a high sensitivity to medications and sometimes his reactions were unpredictable. This is apparently a common theme in people with LBD.

During the filming of the movie, Robin was having trouble remembering even one line for his scenes, while just 3 years prior he had played in a full 5-month season of the Broadway production Bengal Tiger at the Baghdad Zoo, often doing two shows a day with hundreds of lines—and not one mistake. This loss of memory and inability to control his anxiety was devastating to him.

While I was on a photo shoot at Phoenix Lake, capturing scenes to paint, he called several times. He was very concerned with insecurities he was having about himself and interactions with others. We went over every detail. The fears were unfounded and I could not convince him otherwise. I was powerless in helping him see his own brilliance.

For the first time, my own reasoning had no effect in helping my husband find the light through the tunnels of his fear. I felt his disbelief in the truths I was saying. My heart and my hope were shattered temporarily. We had reached a place we had never been before. My husband was trapped in the twisted architecture of his neurons and no matter what I did I could not pull him out.

In early May, the movie wrapped and he came home from Vancouver—like a 747 airplane coming in with no landing gear. I have since learned that people with LBD who are highly intelligent may appear to be okay for longer initially, but then, it is as though the dam suddenly breaks and they cannot hold it back anymore. In Robin’s case, on top of being a genius, he was a Julliard-trained actor. I will never know the true depth of his suffering, nor just how hard he was fighting. But from where I stood, I saw the bravest man in the world playing the hardest role of his life.

Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back.

Powerless and frozen, I stood in the darkness of not knowing what was happening to my husband. Was it a single source, a single terrorist, or was this a combo pack of disease raining down on him?

He kept saying, “I just want to reboot my brain.” Doctor appointments, testing, and psychiatry kept us in perpetual motion. Countless blood tests, urine tests, plus rechecks of cortisol levels and lymph nodes. A brain scan was done, looking for a possible tumor on his pituitary gland, and his cardiologist rechecked his heart. Everything came back negative, except for high cortisol levels. We wanted to be happy about all the negative test results, but Robin and I both had a deep sense that something was terribly wrong.

On May 28th, he was diagnosed with Parkinson disease (PD).

We had an answer. My heart swelled with hope. But somehow I knew Robin was not buying it.

When we were in the neurologist’s office learning exactly what this meant, Robin had a chance to ask some burning questions. He asked, “Do I have Alzheimer’s? Dementia? Am I schizophrenic?” The answers were the best we could have gotten: No, no, and no. There were no indications of these other diseases. It is apparent to me now that he was most likely keeping the depth of his symptoms to himself.

Robin continued doing all the right things—therapy, physical therapy, bike riding, and working out with his trainer. He used all the skills he picked up and had fine-tuned from the Dan Anderson retreat in Minnesota, like deeper 12-step work, meditation, and yoga. We went to see a specialist at Stanford University who taught him self-hypnosis techniques to quell the irrational fears and anxiety. Nothing seemed to alleviate his symptoms for long.

Throughout all of this, Robin was clean and sober, and somehow, we sprinkled those summer months with happiness, joy, and the simple things we loved: meals and birthday celebrations with family and friends, meditating together, massages, and movies, but mostly just holding each other’s hand.

Robin was growing weary. The parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion.

It felt like he was drowning in his symptoms, and I was drowning along with him. Typically the plethora of LBD symptoms appear and disappear at random times—even throughout the course of a day. I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later, blank, lost in confusion.

Prior history can also complicate a diagnosis. In Robin’s case, he had a history of depression that had not been active for 6 years. So when he showed signs of depression just months before he left, it was interpreted as a satellite issue, maybe connected to PD.

Throughout the course of Robin’s battle, he had experienced nearly all of the 40-plus symptoms of LBD, except for one. He never said he had hallucinations.

A year after he left, in speaking with one of the doctors who reviewed his records, it became evident that most likely he did have hallucinations, but was keeping that to himself.

It was nearing the end of July and we were told Robin would need to have inpatient neurocognitive testing done in order to evaluate the mood disorder aspect of his condition. In the meantime, his medication was switched from Mirapex to Sinemet in an effort to reduce symptoms. We were assured Robin would be feeling better soon, and that his PD was early and mild. We felt hopeful again. What we did not know was that when these diseases “start” (are diagnosed) they have actually been going on for a long time.

By now, our combined sleep deficit was becoming a danger to both of us. We were instructed to sleep apart until we could catch up on our sleep. The goal was to have him begin inpatient testing free of the sleep-deprived state he was in.

As the second weekend in August approached, it seemed his delusional looping was calming down. Maybe the switch in medications was working. We did all the things we love on Saturday day and into the evening, it was perfect—like one long date. By the end of Sunday, I was feeling that he was getting better.

When we retired for sleep, in our customary way, my husband said to me, “Goodnight, my love,” and waited for my familiar reply: “Goodnight, my love.”

His words still echo through my heart today.

Monday, August 11, Robin was gone.

After Robin left, time has never functioned the same for me. My search for meaning has replicated like an inescapable spring throughout nearly every aspect of my world, including the most mundane.

Robin and I had begun our unplanned research on the brain through the door of blind experience. During the final months we shared together, our sights were locked fast on identifying and vanquishing the terrorist within his brain. Since then, I have continued our research but on the other side of that experience, in the realm of the science behind it.

Three months after Robin’s death, the autopsy report was finally ready for review. When the forensic pathologist and coroner’s deputy asked if I was surprised by the diffuse LBD pathology, I said, “Absolutely not,” even though I had no idea what it meant at the time. The mere fact that something had invaded nearly every region of my husband’s brain made perfect sense to me.

In the year that followed, I set out to expand my view and understanding of LBD. I met with medical professionals who had reviewed Robin’s last 2 years of medical records, the coroner’s report, and brain scans. Their reactions were all the same: that Robin’s was one of the worst LBD pathologies they had seen and that there was nothing else anyone could have done. Our entire medical team was on the right track and we would have gotten there eventually. In fact, we were probably close.

But would having a diagnosis while he was alive really have made a difference when there is no cure? We will never know the answer to this. I am not convinced that the knowledge would have done much more than prolong Robin’s agony while he would surely become one of the most famous test subjects of new medicines and ongoing medical trials. Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him. There is no cure and Robin’s steep and rapid decline was assured.

The massive proliferation of Lewy bodies throughout his brain had done so much damage to neurons and neurotransmitters that in effect, you could say he had chemical warfare in his brain.

One professional stated, “It was as if he had cancer throughout every organ of his body.” The key problem seemed to be that no one could correctly interpret Robin’s symptoms in time.

I was driven to learn everything I could about this disease that I finally had the name of. Some of what I learned surprised me.

One neuropathologist described LBD and PD as being at opposite ends of a disease spectrum. That spectrum is based on something they share in common: the presence of Lewy bodies—the unnatural clumping of the normal protein, α-synuclein, within brain neurons. I was also surprised to learn that a person is diagnosed with LBD vs PD depending on which symptoms present first.

After months and months, I was finally able to be specific about Robin’s disease. Clinically he had PD, but pathologically he had diffuse LBD. The predominant symptoms Robin had were not physical—the pathology more than backed that up. However you look at it—the presence of Lewy bodies took his life.

The journey Robin and I were on together has led me to knowing the American Academy of Neurology and other groups and doctors. It has led me to discover the American Brain Foundation, where I now serve on the Board of Directors.

This is where you come into the story.

Hopefully from this sharing of our experience you will be inspired to turn Robin’s suffering into something meaningful through your work and wisdom. It is my belief that when healing comes out of Robin’s experience, he will not have battled and died in vain. You are uniquely positioned to help with this.

I know you have accomplished much already in the areas of research and discovery toward cures in brain disease. And I am sure at times the progress has felt painfully slow. Do not give up. Trust that a cascade of cures and discovery is imminent in all areas of brain disease and you will be a part of making that happen.

If only Robin could have met you. He would have loved you—not just because he was a genius and enjoyed science and discovery, but because he would have found a lot of material within your work to use in entertaining his audiences, including the troops. In fact, the most repeat character role he played throughout his career was a doctor, albeit different forms of practice.

You and your work have ignited a spark within the region of my brain where curiosity and interest lie and within my heart where hope lives. I want to follow you. Not like a crazed fan, but like someone who knows you just might be the one who discovers the cure for LBD and other brain diseases.

Thank you for what you have done, and for what you are about to do.

DISCLOSURE

Susan Schneider Williams serves on the Board of Directors for the American Brain Foundation (americanbrainfoundation.org) but reports no disclosures relevant to the manuscript.

Go to Neurology.org for full disclosures.

Recognising Diagnosing Misdiagnosing Lewy Body Dementia: The Doctor’s Perspective

Lewy Body Dementia is often mistaken for other forms of dementia.

Below we post a detailed report and perspective from a qualified doctor Charles E. Driscoll, MD.

Frequently misdiagnosed as Alzheimer’s disease, Lewy body dementia is notable for its up-and-down swings that precede the eventual decline.

As a family physician/geriatrician, I sometimes speak to primary care physicians about dementia with Lewy bodies (DLB) because of the understanding my spouse and I have gained while caring for our family members during their personal walk with LB disease.

I once asked an audience of 400 primary care providers who among them was currently caring for a patient with DLB. Fewer than a dozen hands went up.

After my presentation, when I called for another show of hands, most in the room realized they probably had been caring for a patient with DLB under the assumption that it was another type of dementia.

If your first reaction to DLB is “never heard of it,” you’re not alone, as the disorder was not consistently recognized until 1996 and not listed in the International Classification of Diseases until 2005. This article addresses the key points of what we have learned and information that will help in the care of these patients.

What Defines LBD?
Lewy body dementia (LBD) describes two distinct but related types of dementia: DLB and Parkinson’s disease with dementia (PDD). LBD is now recognized as the second most common cause of dementia after Alzheimer’s disease (AD), affecting more than 1.5 million people and their families and accounting for 20% to 25% of all dementias.1

Mental dysfunction is caused by neurodegeneration accompanied by the cerebral deposition of an abnormal protein called alpha-synuclein as compared with AD, which is associated with the protein beta-amyloid with neurofibrillary tangles.

Unlike AD, which mainly affects the cerebral cortex, LBD can affect the cortex and substantia nigra, altering both cognitive and motor functions. If dementia appears first, followed by or concurrent with PD motor symptoms, it is usually referred to as DLB, but if motor dysfunction presents initially with dementia occurring more than one year later, it is diagnosed as PDD.2

The current consensus is that these neurodegenerative conditions, along with other LB conditions (eg, multiple system atrophy, LB variant of Alzheimer’s, Down syndrome, amyotrophic lateral sclerosis, dementia with brain iron accumulation), are all part of a spectrum of disorders. Experts are still struggling to establish agreement on the taxonomy.

Establishing the Diagnosis
LBD is frequently initially misdiagnosed as AD in its earlier stages until the defining characteristics begin to appear. Unlike the gradual, steady decline of AD, LBD is notable for its up-and-down swings before eventual decline. Some family members initially are confused about what they are observing because their family member can function apparently normally one day and exhibit dramatic symptoms the next.

The key to appropriate LBD management is earlier recognition. Several consequences of misdiagnosing this condition include exposing the patient to potentially harmful medications (eg, exaggerated response to benzodiazepines and neuroleptic drugs), missing an opportunity to choose effective therapies (eg, better response to cholinesterase inhibitors), and delaying the opportunity to help families understand and cope with the significant burden of this illness.

Here are clues that the dementia you are observing is LBD. Unlike early AD, LBD often begins with episodic loss of long-term memory and more marked impairments of executive (eg, making decisions; sequential tasking), visuo-spatial, and attentive functions. People with LBD also show more problems with impulse control and behavior. Research has concluded that LBD patients exhibit a higher rate of periodic limb movements and rapid eye movement (REM) sleep behavior disorder that can help to differentiate DLB from AD.3,4

A diagnosis of LBD requires some combination of dementia and the following2:

• three core symptoms: fluctuating cognition (bad days and good “showtime” days), vivid visual hallucinations and/or delusions, and motor dysfunction; or

• three suggestive symptoms: REM sleep behavior disorder with acting out of dreams or excessive daytime sleepiness, abnormal brain CT/MRI, and extreme sensitivity to haloperidol and tranquilizers.

DLB is considered probable with the presence of dementia plus two core symptoms or one core and one or more suggestive symptoms. It is considered possible with dementia plus one core symptom or one or more suggestive symptoms.

A histological diagnosis can be made at autopsy with the findings of alpha-synuclein–positive Lewy bodies extensively distributed within the neocortical and limbic areas (see Figure 1 below). Unfortunately, there is no accurate premortem test that will nail down the LB diagnosis. At this time, there is research in the use of imaging techniques to aid in the diagnosis.

Single photon emission CT testing has identified an association with occipital hypoperfusion. MRIs have shown DLB-specific changes, including preservation of hippocampal and medial temporal lobe volumes, compared with AD. Recently, presynaptic dopaminergic deficits in the striatum have been visualized using a 123I-radiolabeled marker (DaTSCAN). These techniques are still in the realm of research institutions and not widely available.

Typical Disease Progression
LBD generally is thought to progress to death faster than AD. Some authorities quote a prognosis of between two and seven years after onset until death. Men are more likely to die sooner than women. There also is a shorter course to nursing home placement for DLB patients than for those with AD. DLB patients are higher utilizers of emergency department and outpatient care, community services, and drug therapies.2

The disease evokes many emotions and a great deal of misunderstanding for families. Remembering that all forms of dementia are terminal, note that DLB patients qualify for hospice care to assist in the management of their various symptoms. Early referral often is helpful for families providing care at home. Additionally, referral to a family support group can be beneficial. The best information can be accessed from the Lewy Body Dementia Association (www.lbda.org).

Helpful Medications
The mainstay of LBD therapy is cholinesterase inhibitors (eg, donepezil, galantamine), which work better for the cognitive and behavioral symptoms of patients with DLB than those with AD. If the side effects experienced with one inhibitor are troublesome, another may be tried and may work better. If patients experience difficulty taking pills, a patch formulation (rivastigmine) is available. When a patient takes a cholinesterase inhibitor, the reduction in hallucinations and delusions can be remarkable.

Selective serotonin reuptake inhibitors can be useful for some patients with depression and anxiety, but the required dosages are smaller than those used for non-DLB patients. Disruptive behaviors (eg, aggression, wandering, hallucinations, delusions) are common in DLB and are frequently the precipitating event for a visit to a physician. Because behaviors are similar to those seen with delirium, the first step in dealing with them should be the elimination of organic causes.

Examining for a urinary tract infection, constipation with impaction, and occult infections is always justified. When families insist on pharmacological management, the atypical class of antipsychotics (eg, quetiapine) provide better management of disruptive behaviors because at least one-half of LBD patients are particularly sensitive to traditional antipsychotics and benzodiazepines. Fatal neuroleptic malignant syndrome with fever, restlessness, rigidity, and muscle cell breakdown has resulted from the use of haloperidol.

A higher prevalence of cardiovascular problems and abnormal electrical activity evident on an electrocardiogram (ECG) is more common in DLB patients. Because many medications can produce cardiotoxic effects, a black box warning has been placed on the atypical antipsychotics. An ECG should be performed to look for evidence of prolonged Q-T interval or some other conduction defect. This requires a careful explanation to ensure informed consent and agreement about the risks4 in the event of drug use.

The use of benzodiazepines or narcoleptic medications will often produce a paradoxical response in DLB, and this can be an early supportive clue to the diagnosis. DLB patients also tend to have more autonomic dysfunction than AD patients, and polypharmacy may result from attempts to control hypotension, constipation, urinary retention, myotonia, and excessive salivation as separate issues rather than as a part of the whole.

Many DLB patients will manifest the motor symptoms of Parkinsonism, but unfortunately anti-Parkinson drugs often make the cognitive and behavioral problems worse and thereby force a choice between the lesser of two evils. If simultaneous treatment is to be attempted, the dictum of “start very low and go very slow” certainly applies to patients with DLB.

Where Do We Go From Here?
DLB is underrecognized by physicians, and among the general public there is a very limited awareness of the different types of dementia. For years everything was labeled as AD, with little reason to do otherwise, since physicians’ knowledge base precluded any effective management. Now there are good reasons to discriminate these conditions—and the earlier the better.

DLB is far more apt to overstress and burden families.5 In facilitating a support group, my wife and I have found that getting people to share their experiences makes them realize the commonality of the bizarre symptoms they see in their loved ones and normalizes the experience so that they feel better able to try new coping skills at home. Grieving is common in DLB families, even long before the death occurs, and a support group provides recognition of this fact and significant comfort.

Many caregivers are themselves aged spouses or siblings and are themselves experiencing the onset of personal health issues. They need to be reminded to keep their own doctors’ appointments and be spiritually nurtured in order to remain strong in caregiving. Getting adequate and early assistance for family caregivers helps reduce the strain of caring for someone with dementia.

Managing patients with DLB is a difficult and sometimes frustrating task for physicians. Teamwork by office members will help to spread out the busyness of communication with families, medication management, and coordination of community services. The literature about DLB is sometimes hard to find and in a variety of journals. Monitoring the information for physicians on the Lewy Body Disease Association website is a good way to identify new advances in the science and resources that may be useful in patient care.

— Charles E. Driscoll, MD, is a clinical professor of family medicine at the University of Virginia and a clinical associate professor of family medicine at Virginia Commonwealth University in Richmond. He is board certified in family medicine and geriatrics with special interest in dementia and frailty in the elderly.

— Jean Driscoll, MS, along with her husband, established the first Lewy Body support group for families in Virginia. Together they serve as the group’s facilitators.

Resources for Patients
• A Caregiver’s Guide to Lewy Body Dementia by Helen Buell Whitworth and Jim Whitworth: This book is a comprehensive guide to all things Lewy body. The Whitworths also write a blog, The Lewy Body Rollercoaster, which answers questions, references other sources, and announces new developments (http://lbdtools.com). Jim Whitworth is a cofounder of the Lewy Body Dementia Association.

• A Long Dark Night — A Caregiver’s Journey With Dementia by Philip Edward Phlegar Weeks: Weeks is an Episcopal bishop who, in this book, explains his feelings and frustrations with the Lewy body dementia affecting his spouse. He addresses spirituality, sexuality, and the difficulty of getting community services coordinated.

• Creating Moments of Joy for the Person With Alzheimer’s or Dementia: A Journal for Caregivers by Jolene Brackey: The fourth edition of this work by Brackey, an activities director in a memory care unit, includes practical solutions and strategies for caregivers wrapped in humor, warmth, and a message of hope.

• Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing With the Disease by Joanne Koenig Coste: Coste is a nationally recognized expert in communications techniques. After her experience with a spouse who had Alzheimer’s, she offers her five basic tenets for use by caregivers and provides hundreds of practical tips.

• Living With Lewy’s: Empowering Today’s Dementia Caregiver by Amy and Gerald Throop: The authors’ decade of caregiving experience provides the basis for this book. It was written to provide a better understanding of the dementia process and to share practical, safe methods of dealing with specific disabilities and behaviors.