Swallowing Difficulties and Medicines – Free Online Course

An online friend thought this Future Learn online course might be of interest to some of our group members.  It’s about administering medications to someone with swallowing difficulties (dysphagia).  This course is for healthcare professionals and family caregivers.  There is no charge to participate.  The details are below.

Robin
—————————–

www.futurelearn.com/courses/dysphagia

ONLINE COURSE
Dysphagia: Swallowing Difficulties and Medicines

This course will enhance the knowledge of any person involved in the administration of medicines to patients with dysphagia.

Why join the course?
Share knowledge about swallowing difficulties and medicines with other learners and professionals. This course offers an opportunity to network with other learners and with the educators through discussions and social networking features.

Duration:  6 weeks
2 hours per week
FREE online course

What topics will you cover?
* Definition and causes of dysphagia
* How to improve medicines administration for patients with dysphagia
* Supporting patients with dysphagia to take their medicines
* Different medicine formulations and the important considerations for patients with dysphagia
* Legal and ethical considerations when administering medicines to patients with dysphagia
* Standardising the approach to reviewing medicines in patients with dysphagia

What will you achieve?
* Describe the swallowing process and different causes of swallowing problems.
* Describe the different types of medicines formulations and how these should be administered to patients.
* Describe how tablets and capsules are designed to ensure that drugs are appropriately distributed in the body.
* Describe special considerations which need to be taken into account when giving medicines to older people and children.
* Describe the special considerations which are required to administer medicines via enteral tubes.
* Describe the law relating to the selection and administration of medicines.
* Describe how best to administer medicines to patients with dysphagia.

Who is the course for?
There are no requirements for this course, other than an interest in swallowing difficulties and medicines. The course will be of particular interest to carers, nurses and those in the field of medicine

Who will you learn with?
David Wright:  Professor of Pharmacy Practice at the School of Pharmacy, University of East Anglia. Research interests include the management of medicines and their administration to patients with dysphagia.

Six tips on coping with inappropriate dementia behavior; saying “I’m sorry”

The Capital Gazette newspaper has a column written by Mary Chaput of the Department of Aging and Disabilities of Annapolis, MD.  A recent column had a question about frontotemporal dementia.  Ms. Chaput’s answer applies to dealing with someone with any type of dementia.

In terms of dealing with inappropriate behavior, she offers six tips:

* Don’t take the behavior or comments personally.
* Be empathetic.
* Don’t argue.
* Look for the situation(s) and environmental factors that trigger the behaviors.
* Talk with your family member’s physician about the behavior.
* Keep in mind that this, too, shall pass.

Another question was about saying “I’m sorry” to placate someone with dementia.

Here’s a link to the full column:

www.capitalgazette.com/lifestyle/ph-ac-cc-caregivers-0402-20170401-story.html

Caregivers Corner: Be patient and empathetic when dealing with frontotemporal dementia
by Mary Chaput, Correspondent
Capital Gazette
April 1, 2017

Robin

 

Mayo Rochester finally reports results from mesenchymal stem cell study in MSA

Finally Mayo Rochester has reported results from its mesenchymal stem cell study of multiple system atrophy.  Local support group member John Yanez-Pastor participated in the study.  This was a phase I/II safety and tolerability study, NOT an efficacy study.  Wolfgang Singer, MD, reported at this week’s annual meeting of the American Academy of Neurology that the 24 probable MSA patients who participated in the very small study reported no serious adverse events with the treatment.

I guess with the phase II aspect of the study, a bit about efficacy could be studied.  Dr. Singer said that the “efficacy of MSCs on slowing multiple system atrophy progression….appeared to be dependent on the dose, and, in the highest dose individuals, had a painful implantation response.”

Slowed disease progression was measured by the Unified MSA Rating Scale.  There was only one point difference between the study group and a “historical placebo group.”  I’m not sure a one point difference really leads to better quality of life.  (Sorry.)  There was no change on on any autonomic scales.

Mayo Rochester is in the late planning stages for a multicenter, double-blind, placebo-controlled phase II/III study.

There’s a four-minute video interview with Dr. Singer here:

link.videoplatform.limelight.com/media/?mediaId=689b6aec47124b42b39095f7863f1cf8&width=630&height=421&playerForm=19ca168687014a7b8cff84fa4c87d03f

And here’s a link to the full article from Clinical Neurology News:

www.mdedge.com/clinicalneurologynews/article/136483/movement-disorders/video-pilot-stem-cell-trial-multiple-system

VIDEO: Pilot stem cell trial for multiple system atrophy shows promising results
Publish date: April 25, 2017
By: Jeff Evans, Clinical Neurology News
At AAN 2017

Robin

Notes from webinar on three non-AD dementias, including Lewy Body Dementia

There was a 90-minute webinar on April 6th, hosted by Resources for Integrated Care, was packed with lots of info on dementia with Lewy bodies (DLB) and frontotemporal dementia (FTD) with less info on vascular dementia (VAD).  (Note that throughout the webinar, with few exceptions, the term “Lewy body dementia” was used.)  The webinar, for both healthcare professionals and family caregivers, was fast-paced.  Presentations were for the first hour, and then there was a 30-minute Q&A.

You can find a link to the webinar recording here:

www.resourcesforintegratedcare.com/GeriatricCompetentCare/2017_GCC_Webinar_Series/Beyond_Alzheimers

You can find a link to the webinar slides here:

www.resourcesforintegratedcare.com/sites/default/files/Beyond_Alzheimers_Disease_0.pdf

VAD, DLB, and FTD are the most common dementia types after Alzheimer’s Disease (AD).  Here are short definitions:

* Vascular dementia – cognitive deficits most often associated with vascular damage in the brain, either micro or macro in nature.

* Dementia with Lewy Bodies – a dementia that also includes one or more of these core findings: recurrent and detailed visual hallucinations, parkinsonian signs, and fluctuating cognition.

* Frontotemporal dementia – a disease often seen in individuals with onset of cognitive symptoms at a younger age; these individuals present most often with executive and language dysfunction and significant behavioral changes.

The management strategies that are effectively in AD are less effective in these other three dementia types.

Brain Support Network volunteer-extraordinaire Denise Dagan listened to the webinar a couple of times and took extensive notes on the LBD content and some notes on the other two dementias.  She has provided the time stamp at various points so that you can fast forward through the recording, if you’d like.

Robin

————————–

Denise’s Notes from

Beyond Alzheimer’s Disease, Other Causes of Prerogative Dementia in the Older Adult
Webinar hosted by Resources for Integrated Care
April 6, 2017

Presenters:
* Melinda S. Lantz, MD, Chief of Geriatric Psychiatry, Mount Sinai Beth Israel Medical Center, New York, NY
* Geri Hall, PhD, ARNP, CNS, FAAN, Banner Health, Phoenix, AZ
* Rebekkah Wilson, MSW, Dementia Care Consultant and Trainer
* Sharon Hall, Family Caregiver (to someone with FTD)

After many housekeeping comments and credits, introduction of the webinar presenters begins at time stamp 3:15.

DR. LANTZ SPEAKS….

DEMENTIA

After some audience polling, Dr. Lantz begins at time stamp 9:15 with how dementia is identified and diagnosed by evaluation as there are no clinical tests yet available to diagnose any type of dementia.

Dementia is a major neurocognitive disorder.  According to the American Psychiatric Associations Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (APA DSM5), to be diagnosed with dementia a person must exhibit significant decline from a previous level in the five domains of cognitive functioning, which include:
* Complex attention
* Executive function
* Learning and memory, language
* Perceptual-motor
* Social cognition

Diagnosis is based on collateral information including self-reporting, standardized neuropsychological testing or quantified clinical assessment.

Cognitive deficits interfere with everyday activities, social or occupational functioning.

MCI

Mild Neurocognitive Disorder [Mild Cognitive Impairment (MCI)], according to the APA DSM5, does not meed criteria for dementia.  MCI is described as:
* Subjective and objective decline in cognitive domain: primarily memory, language or motor
* No significant impairment in:
— Other cognitive domains
— Activities of Daily living
— Social or occupational functioning
* 10-15% of patients with MCI progress to develop dementia each year
* “Precursor of dementia” versus spectrum of normal aging
* Patients with MCI should be identified and monitored for cognitive and functional decline due to their increased risk for dementia
* There are no currently FDA approved medications for MCI

VASCULAR DEMENTIA

Vascular Dementia = dementia due to cerebrovascular disease.
* Cognitive loss due to cerebrovascular disease
* 2nd most common cause in late-life after Alzheimer’s.
* Risk factors:
— Hypertension (high blood pressure)
— Diabetes
— Hyperlipidemia
— Smoking
— TIAs (transient ischemic attack) or mini-stroke is a neurological event with the signs and symptoms of a stroke, but which go away within a short period of time.
— Stroke.
* Decline may be abrupt due to a stroke or series of TIAs
* Cognitive loss may be focal, with more awareness of symptoms
* Disturbance of emotions and mood is common
* Caregiving needs are due to medical and physical conditions (paralysis of one side of the body due to stroke, and multiple medical problems and medications).
* Decline may be step-wise with plateaus in symptoms.  They may recover after 1st stroke, but decline years later due to more strokes.
* Mixed variants of dementia (Alzheimer’s with vascular dementia) are common.
* More men than women because men have more vascular disease than women.

She displayed a scan of vascular dementia at time stamp 13:45

She inserted a slide of two other types of vascular dementia at time stamp 14:00, but didn’t discuss them.

LEWY BODY DEMENTIA

Lewy Body Dementia
* Memory loss and other cognitive deficits that often have a fluctuating and variable course, and relatively rapid onset
* Motor rigidity, parkinsonism features
* Prominent hallucinations, usually visual
* Unsteady gait, syncope (fainting), unexplained falls
* More rapidly deteriorating course
* 3rd most common dementia after Alzheimer’s and Vascular dementias
* more common in men than women

She displayed a microscope image of a lewy body at time stamp 15:30

Sensitivity to all psychiatric meds, but definitely psychosis requiring meds, which makes it complex to treat.

FRONTOTEMPORAL DEMENTIA

Frontotemporal dementia at time stamp 16:12
* Significantly earlier onset between 40-60 yrs old because of slow and subtle onset
* Atrophy prominent in the frontal and temporal lobes of the brain (associated with personality, mood, behavior, impulse control)
* Slow onset with early changes in personality, impulse control and language
* Memory, arithmetic, copying figures often preserved until later in the course so difficult to diagnose early on
* Behavior often disinhibited, repetitive, socially inappropriate
* Prominent personality change very early
* Early onset with very slow, progressive decline
* Memory impairment later in the course
* Behavior changes: Disinhibition, impulsivity, apathy, depression, verbal outbursts
* Lack of recognition, agnosia (Inability to interpret sensations and hence to recognize things, people and/or sounds.  With agnosia they are particularly unable to recognize their own changes in behavior and capabilities, hampering diagnosis and caregiving.)
* Treatment is very symptom driven as there are no agents available for prevention or slowing progression

Two subtypes: Pick’s disease and frontotemporal dementia with parkinsonism at time stamp 17:52

She displayed a Pick body microscope image at time stamp 18:05

TREATMENT

Treatment of Cognitive Symptoms of Vascular and Lewy body Dementia:
* Cholinesterase Inhibitors slows the rate of decline:  Donepezil, Galantamine, Rivastigmine, for mild to moderate Alzheimer’s (AD), Vascular dementia (VAD), mixed the benefits relatively similar: +3 points ADAS-Cog, 4 to 6 Month delay in progression
* Individual response variable and difficult to measure:  20% of patients show “Greater than average” response, 20% “some response”, but 30-50% show no response
* Greatest effect appears to be delay in need for nursing home placement of 6 to 8 months
* NO ROLE for use in Frontotemporal Dementia (FTD), may worsen behavioral symptoms

Treatment of Cognitive Symptoms:
* Rivastigmine may be more helpful in LBD than the other available cholinesterase inhibitors
* Memantine is approved by the FDA for Alzheimer’s, but not enough evidence to show benefit for other types of dementia
* Cholinesterase inhibitors have no benefit in FTD and may worsen mood and behavior
* Cholinesterase inhibitors may cause nausea, vomiting, weight loss (due to GI upset) and bradycardia (slow heart rate)

Pharmacologic Treatment for targeted severe symptoms:
* The idea is to minimize symptoms without side effects, especially from poly-pharmacy.
Use of these is justified when patients are disturbed by hallucinations, especially if they try to act on them in dangerous ways.
* Not a substitute for good care and behavioral management.
* Psychosis (hallucinations, delusion) > Rx options: Antipsychotic Agents (risperidone, olanzapine, quetiapine, aripiprazole)
* Depression, Anxiety, & Irritability > Rx options: SSRI (sertraline, citalopram) or bupropion, trazodone, mirtazapine)
— These are particularly common early in these dementias, when mood treatment can be particularly helpful.

Pharmacologic Treatment for physical aggression:
* These are all off-label drug uses, but can be helpful.
* Severe Physical aggression (also helpful for severe impulsivitity and mood lability > Rx options: Mood Stabilizer (valproate, lithium, carbamazepine, gabapentin)
* Moderate Physical Aggression > Rx options: Mood Stabilizer

She put up three slides with Dosing Guidelines and Side-Effects charts for antidepressants and mood stabilizers at time stamp 23:37

DR. HALL SPEAKS….

Symptom presentation in dementia depends on these factors and directly affect care challenges:
* Location of the degeneration
* Function of the degenerated area of the brain
* Pathologic changes at the cellular level (e.g. presence of Lewy bodies)
* Comorbid conditions
* Environmental factors producing excess disability
* Premorbid personality

At time stamp 25:22 she put up PET scan imagines distinguishing dementias from each other (kind of amazing).

The location of damage is different, therefore so are care needs:
* Due to time constraints we will examine two more common non-Alzheimer’s dementias:
— Lewy Body Dementia (LBD)
— Frontotemporal Lobar Degeneration (FTD or FTLD)

LEWY BODY DEMENTIA

Lewy Body Dementia:  Three common presentations
* Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features.
* Some individuals will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia.  This is diagnosed at Parkinson’s disease dementia.
* Another group of individuals will start out with a cognitive/memory disorder that may be mistaken for Alzheimer’s disease, but over time two or more distinctive features of fluctuating cognition and psychosis (hallucinations and/or delusions) become apparent leading to the diagnosis of ‘dementia with Lewy Bodies’ (DLB).
* Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations (primarily visual, but also olfactory or auditory), behavioral problems, and difficulty with complex mental activities, also leading to an initial diagnosis of DLB.

Common Symptoms of Lewy Body Dementia:
* Sleep disorders (can be present up to two years prior to LBD diagnosis)
— Acting out dreams while asleep
— Excessive daytime sleepiness
— Restless leg movement
* Impaired thinking
— Executive function (planning, processing information.)
— Memory fluctuates
— Ability to understand visual information fluctuates
* Problems with movement
— Tremors, stiffness, slowness and difficulty walking
— Anti-Parkinson medications often don’t work well and may cause initial hallucinations
* Altered sensory perception (particularly visual-spacial perception)
* Hallucinations
— Often of animals or children
* Behavioral and Mood Symptoms
— Depression, apathy, anxiety, agitation, delusions or paranoia
* Changes in Autonomic Body Functions
— Blood pressure control, temperature regulation, postural control (tend to fall a lot), bladder and bowel function
* Exquisite Sensitivity to medications, particularly those that affect the central nervous system.
— Don’t use old generation antipsychotics.  With new antipsychotics, start with a low dose and ramp up to an effective dose.
— Don’t use general anesthesia.

Care of Lewy Body Dementia:
* Similar to Alzheimer’s – decrease stimuli, increase rest, promote exercise (Big & Loud Programs) and balance
* Safety due to REM sleep disorder, fall precautions due to autonomic dysfunction, swallowing issues
* Supportive (self-care) activities of daily living (ADLs)
* Control of misleading environmental stimuli (especially TV) and medications that trigger hallucinations and delusions
* Prepare family for response to potential aggression
* LBD Association and support groups

Use of Therapies:
* Physical therapy – Design a program and teach to patient/family focusing on postural stability and core strength
* Exercise Programs – Big and LOUD Programs!!!
* Recreational Therapy
* Occupational therapy – ADLs
* Speech pathology – swallowing, spoken volume
* Pharmacist consultation – OTCs can be problematic and interact, so ask before taking anything.

Lew Body Dementia Support and Resources slide includes a list of resources, including encouragement to attend local support group meetings.

Robin’s note:  See Brain Support Network’s list of top LBD resources here, which includes the two resources Dr. Hall mentioned:

www.brainsupportnetwork.org/education/lewy-body-dementia/

Denise’s note:  If you are in the San Francisco Bay Area, please attend Brain Support Network’s LBD caregiver-only support group meetings!  We just met last Sunday.  Our next meeting is in June.  Email Robin Riddle to get on the meeting reminder email list.

FRONTOTEMPORAL DEMENTIA

She spoke about Frontotemporal Dementia (FTD) from time stamp 31:29 until her summary at 46:43.  FTD is often misdiagnosed for 10-14 years and is the most difficult to care for, because of youth and psychiatric issues.

SUMMARY

Summary:
* As diagnostic specificity improves, non-Alzheimer’s dementias will be diagnosed more frequently.
* A “one-side-fits-all” care program will not meet the needs of people with non-Alzheimer dementias.  They differ in terms of symptom presentation, behavioral responses, and ability to tolerate medications.  [When searching for a day program or caregivers for your family member with a non-Alzheimer’s dementia diagnosis, interviewing for their understanding of they type of dementia your family has, and their preparedness in caring for that type of dementia, is critical in finding the right program or caregiver.]
* Families and care providers are desperate for answers, ongoing support, and to seek out others suffering from similar conditions.
* Interdisciplinary care and research is essential for humane approaches to these vexing conditions.

MS. WILSON SPEAKS…

Rebekkah Wilson, MSW spoke next at time stamp 46:29

Beyond Alzheimer’s Disease, Impact on the Individual/Family System:
* Challenges with diagnosis
* Symptoms generally less recognized/understood
* Caregiver burden
* Younger onset considerations
* Community resources and considerations
— Legal
— Financial
— Emotional support
— Care options

Psychosocial Impact – Diagnosis
* Misdiagnoses common
— in FTD as late onset mental health issues (bi-polar), or marital problems
— in LBD when initial presentation is non-motor symptoms
* Rearview mirror clearer; but by then there are consequences of actions taken prior to diagnosis
— unnecessary treatments, or surgery
— impulse control issues in FTD can result in overspending of college & retirement funds, or loss of jobs & stability
* Sense of relief to get diagnosis
— Negative experiences prior to diagnosis
— Empowerment through learning about diagnosis (now I know what I’m dealing with)
* Present and future support – Programs are set up on an Alzheimers disease model.  Some areas of the country are more progressive and have more support groups and day programs/caregivers for non-Alzheimer’s dementia.

Psychosocial Impact – Symptoms
* Less recognized because Alzheimer’s disease is everyone’s reference point
– Memory may not be impacted, so dementia not recognized and symptoms not addressed
* Safety considerations due to brain changes (driving, wandering, judgement)
* Fluctuations in mental status misinterpreted (esp. in young patients misdiagnosed as bi-polar, marital discord, OCD, etc.)
* hallucinations/REM
* Impact of FTD symptoms
– Legal
– Financial
– Employment
– Social

Psychosocial Impact – Caregiver Burden
* Nature of Symptoms
— FTD – especially behavior and language changes
— LBD – especially cognitive fluctuations (can be moment to moment, rather than good morning & bad afternoon)
* High caregiver stress
* Isolation due to being a ‘rare’ diagnosis (need to find a support group with the same non-Alzheimer’s diagnosis)
* Age of onset impacts normalization (especially FTD & young onset Alzheimer’s)
— Expect memory and cognitive changes in older adults.
Younger people with dementia are misdiagnosed with mental health issues or arrested for unruly public behavior.
— Parents providing care for person with dementia (PWD)
— Care for PWD while caring for kids in household (sandwich generation)
* Ambiguous loss / anticipatory grief

Psychosocial Impact – Young Onset
* Developmental stage of the family
— Young kids at home, frequently in young onset families.
— Aging parents caring for their children with young onset dementias.
* Concerns about genetics
* Career and employment considerations
* Financial implications – primary caregiver may now have to work (maybe more than one job, depending on their skill set.)
* Challenges finding services because they are not trained to care for non-Alzheimer’s dementia

Legal and Financial Considerations
* Legal planning documents (maybe guardianship or conservatorship)
— Power of Attorney for Healthcare
— Power of Attorney for Finances
— Living Will
* Employment Laws
* Early Onset diagnosis impacts income and insurance (pre-Medicare age)
* Medicare
* Social Security Disability
* Social Security Compassionate Allowance to expedite benefits
* Additional option for financing care

The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s definition of disability.  It is not a separate program from SSA’s two disability programs, SSDI and SSI.

There is no special application or form that is unique to the CAL initiative.  Individuals with a CAL condition apply for benefits using the standard SSA process for filing claims for SSDI, SSI or both SSDI and SSI benefits.  SSA will expedite the applications of those with a CAL condition.  Applications for disability may be filed online, in the local field office, or by calling 1-800-772-1213.  To learn more about the CAL initiative, see:

www.ssa.gov/compassionateallowances/

Community Resources and Services
* Support Groups for both caregiver AND the person with a diagnosis
* Care models in programs, including day facilities and nursing facilities are based on Alzheimers, but expanding.
* Families are using online information & medical community to educate care models.
* Limited experience and understanding of non-Alzheimer’s dementia

Care Planning
* Establishing the care team (Neurologist, PT, OT, Pharmacist, speech therapist, and the primary caregiver.)
* Determining goals for care team, based on location of care (home or facility) (comfort & safety).  Focusing on the primary goal(s) helps to make decisions.  For example, when choosing a care facility for someone with LBD, focusing on fall prevention as the primary goal may eliminate several options.  Narrowing the number of choices makes the decision easier.
* Support for the person with the diagnosis
* Knowledge and support of the care partners
– Family/friends
– Professionals

Challenges with Home & Community Based Care in Non-Alzheimer’s dementias
* Facility care for FTD
* Cognitive fluctuations as a challenge for care in LBD
* Hospice / palliative care & denials of admission because guidelines are based on Alzheimer’s

Best Practices for Home & Community Based Care
* Recognize care for non-Alzheimer’s dementias is different than Alzheimer’s
* Structure very important
* “Failure free,” low demand engagement
* Group versus individual activities (For Alzheimer’s people, group activities work well, while for young onset individual and non-Alzheimer’s dementias, independent activities work better)
* Recognize preferences may differ from other residents if younger
* Risky or impulsive behavior may increase safety concerns.

MS. HALL SPEAKS…

Sharon Hall spoke last about being a family caregiver of two types of dementia simultaneously at time stamp 1:07:47

Cares for both her 90+-year-old mother with vascular dementia and her husband with bvFTD – yikes!

Feels most difficult aspects is changing role from daughter/wife to caregiver through ambiguous loss process.

Challenging to early onset patient in finding long-term care, especially day programs.  Her husband is physically robust so people don’t expect his behavior to be dementia, but think he’s joking or has mental illness.  Day programs don’t have activities he’s interested in.

Physical contact is ok for people with Alzheimer’s, but if you touch someone with FTD they WILL touch you back.  They also say inappropriate things.  She tried handing out cards excusing his behavior, but she finds talking with people about it, even including her husband in that conversation, educates people better.  Sometimes, they don’t believe her.

Meds are not the only way to manage behavior, especially in FTD, and can make things worse.  It is better to be their advocate and understand how to manage behavior without it.  You can’t expect someone with dementia to follow standard rules of behavior.  You have to go with whatever they’re doing, as long as it’s not dangerous or too disruptive.

Being their advocate, especially in understanding where difficult behaviors come from, is key.  Employing their assistance in as many activities of daily living as they can manage, throughout the day but including rest periods, is the best way to minimize behavior problems.  It occupies their attention, keeps them out of trouble and from being bored, and makes them feel they still are useful members of the family and society.

There’s a crazy financial burden with young onset dementia families, because they had to stop working early so they qualify for less SSI than people who retire later.  Especially people with FTD, because of spending compulsions, can spend through college and retirement savings so must be taken off all financial accounts as soon as diagnosis is made.

FTD has unusual eating habits, crave carbs, etc.  Hygiene can be an issue, but nobody ever dies from not taking a shower.  Forcing participation in conventional hygiene and other tasks on someone with non-Alzheimer’s dementias can bring on unwanted behaviors.  Understanding what you’re dealing with and working with them is the key.  If it’s not dangerous, let them do what they want to do.

QUESTION AND ANSWER

Q&A at time stamp 1:16

Sharon, what techniques work best to manage behaviors.
I apologize to him if she sees she’s done something to trigger a behavior.  Being on his side diminishes the behavior.

Rebekkah, can a healthcare surrogate with no family member present, place a dementia patient in assisted living or LTC if its in their best interest?
A medical decision maker can

Dr. Hall, do you have suggestions for alternatives when access to site services is a challenge?
Psychiatric services, but start with medical and neurological workup.

Dr. Lantz, FTD has been connected with concussion or head trauma?
No (listen for longer answer)

Dr. Hall, are sensory used to treat patients with challenging behaviors arising from dementia?
Sensory rooms are used to treat dementia.  (listen for longer answer)

Dr. Lantz, In early FTD what techniques do we use for early treatment and diagnosis?
monitor and evaluate symptoms and mitigate problems.  PET scan.  Team diagnosis approach, especially behavioral neurology training will better recognize FTD.

What do any of you know about a web based tool called WE Care Advisor geared to help family caregivers?
Nobody has heard of it.

You all stress the importance of interdisciplinary team supporting dementia and caregivers.  Non-medical support?
Area Agency on Aging, the Alzheimer’s Association, access to social services and medical help, as well.
FTD & LBD have national resources but those 2 have local resources.
Join a support group to share resources, moderators educate on resources in these groups.

Dementia friendly communities?  How do I find one?
They look at developing activities and resources places for people with dementia, including painting, coffee shops with dementia-firendly hours.  Locations are based on minimal stimulations, etc.  People with FTD have a harder time participating because their dementia peers with other diagnosis can’t communicate with them well.  Your local newspaper may have done an article on the opening of one in your area to help you find one near you.

“Dementia caregivers: Learning to live in your loved one’s reality” (Philadelphia Inquirer)

This Philadelphia Inquirer article is a report on an Alzheimer’s caregiver conference in Valley Forge.  The keynote speaker was Tam Cummings, a gerontologist from Texas.  Ms. Cummings and other speakers made several points:

* “Cummings urged family members to ask their doctors more questions — as many questions as they might ask if the diagnosis were cancer.  Knowing more, she said, may help them understand and cope with the memory lapses, confusion, delusions, falls, depression, and stubbornness that often accompany dementia.”

* “A recurring theme: People with dementia have brain damage that limits what they can do and how they can think.  It’s those around them who have to change. … If people with dementia are being obstinate or aggressive, it’s up to caregivers to try to figure out whether there is an explanation that their loved one can no longer communicate: Are they in pain? Are they afraid? Were the instructions too complicated? Have perceptual changes made the environment look dangerous to them?”

* “Cummings told the crowd that ‘your loved one’s reality is your reality.'”

This short article is worth reading.  Here’s a link to it:

www.philly.com/philly/health/Dementia-caregivers-Learning-to-live-in-your-loved-ones-reality-alzheimers-association.html

Dementia caregivers: Learning to live in your loved one’s reality
Updated: April 26, 2017 — 3:01 am EDT
by Stacey Burling, Staff Writer
Philadelphia Inquirer

Robin

Supporting, and getting support, from loved ones after a diagnosis

Though this newspaper article is about dementia, I think most of the concepts apply to everyone with a neurological diagnosis.

In Monday’s article in The Sacramento Bee, retired journalist Kent Pollock writes about his dementia diagnosis and how many with a dementia diagnosis struggle to receive support from their loved ones.

The article is here:

www.sacbee.com/news/local/health-and-medicine/article144682519.html

HEALTH & MEDICINE
APRIL 17, 2017 8:00 AM
Supporting, and getting support, from loved ones after a dementia diagnosis
By Kent Pollock
Special to The Bee

Robin

 

“Next-Generation Tau PET Tracers Strut Their Stuff” – differentiating PSP from AD

This is a report by Alzforum from the Alzheimer’s/Parkinson’s 2017 conference in Vienna at the end of March.  The focus of the report is on next-generation tau PET tracers.  Tau is the protein involved in Alzheimer’s Disease (AD), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), Pick’s disease, and chronic traumatic encephalopathy.

There are five new PET tracers under development.  The report says:

“[The] new tracers…appear at first glance to be able to overcome the limitations of the earlier compounds. In general, the newcomers boast higher brain uptake and more specific binding, yielding cleaner-looking scans with sharper distinction between positive and negative findings. While the older tracers work only in AD, some of the new ones appear to light up other tauopathies, as well. Researchers at Piramal Imaging wowed the crowd with scans showing a distinct, specific pattern of binding of their tracer in progressive supranuclear palsy (PSP) compared to AD.”  (Check out the online version of the article for AD vs. PSP images.)

The first-generation tau PET tracers described in the report are:  Lilly/Avid’s AV-1451 (flortaucipir) and THK5351, discovered at Tohoku University in Sendai, Japan, and licensed by GE Healthcare for commercial distribution.  The report indicates that both tracers have lots of problems.

As a result, many researchers are “now eyeing Merck’s and Piramal’s [tracers]. … Merck reported on their tau PET tracer, MK-6240, at the Human Amyloid Imaging (HAI) meeting held January.”  Other companies working on tau ligands include Genentech, Roche, and Janssen.

“Piramal started a Phase 1 trial on four people with AD, three with PSP, and two healthy controls. … Notably, AD and PSP scans revealed distinct patterns. In PSP, only a few discrete regions, mainly the pallidum and substantia nigra, lit up. In contrast, AD patients took up tracer in broader areas known to accumulate tau tangles, such as the lateral temporal lobe, hippocampus, entorhinal cortex, and precuneus.  Curiously, one of the AD patients had a negative tau scan. Stephens noted this patient had mild AD, with an MMSE of 26, and may not have accumulated much pathological tau yet. Incidentally, other PET experts, too, noted that as more research groups image both amyloid and tau pathology in the same cognitively impaired people, they are finding a few whose scans are amyloid-positive but tau-negative.”

Here’s a link to the full report:

www.alzforum.org/news/conference-coverage/next-generation-tau-pet-tracers-strut-their-stuff

Next-Generation Tau PET Tracers Strut Their Stuff
Series – AD/PD 2107 Draws Record Number of Scientists To Vienna
14 Apr 2017
by Alzforum

Robin

 

“Anticipatory Grief and Ambiguous Loss” – Webinar Notes

Though the webinar described in this post was focused on dementia caregivers, the content of this webinar applies to all caregivers as it relates to grief and loss.  It may also apply to those coping with a neurological diagnosis as well since certainly grief and loss are part of the package.

This is a follow-up to last month’s post about a Family Caregiver Alliance (caregiver.org) webinar on anticipatory grief and ambiguous loss.  These two terms are defined by FCA as:

* “Anticipatory grief is the emotional pain and sadness that arises in advance of an expectant loss or death.”

* “Ambiguous loss is the confusing feeling of interacting with someone who is not fully present mentally or socially, as often happens to family caregivers who are closely involved with a person living with dementia.”

The webinar was recorded and is now available online:

Wading in Emotional Quicksand: The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care
Family Caregiver Alliance Webinar
March 29, 2017

www.youtube.com/watch?v=SzOMlXzVhzo&feature=youtu.be

In the webinar, speaker Kay Adams, LCSW, shares seven rules for getting out of emotional quicksand of grief and loss, plus one bonus rule:

1. Don’t panic.
2. Get emotional relief.
3. Reassess/reevaluate frequently.
4. Lay back and relax…and breathe.
5. Take your time.
6. Use a stick (support person/people).
7. Take frequent breaks.
8. Laugh through your tears.

Brain Support Network volunteer Denise Dagan listened to the webinar recently.  Here are the highlights from Denise’s viewpoint:

In this webinar, speaker Kay Adams makes the point that in the case of long-term illness both the care recipient and care giver suffer many losses.  It is only human to grieve those losses as they occur, and each person’s grieving process will be different.  She offers some strategies to aid in the process, all of which require getting past the first stage of grief, which is denial.

Educating yourself about the long-term illness with which you are dealing allows you to anticipate what demands will be made upon you as a caregiver.  It is the best defense against the belief that you can do it all by yourself.  Not trying to care for someone all by yourself over the entire course of a long-term illness will help prevent burnout and is the cornerstone of a good self care strategy.

Gathering others to help both carer and caree from the very beginning is the best way for both care giver and care receiver to stay socially engaged and involved in those things you love for as long as possible.  It provides you both the emotional support needed to best deal with the grief of losses along the way.

Denise’s extensive notes from the webinar are copied below.  The notes include the short question-and-answer session.  “The Story of Rosie and Vince” is referred to within Denise’s notes.  See an earlier post for that story.

Robin

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Denise’s Notes

Wading in Emotional Quicksand: The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care
Family Caregiver Alliance Webinar
Speaker: Kay Adams, LCSW
March 29, 2017

Kay begins by giving a brief timeline of her work history and what brought her to working with dementia and grief, and the definitions of anticipatory grief and ambiguous loss.  She has several quotes from the recommended reading material which she shares throughout this talk.

As a practical example she reads “The Story of Rosie and Vince” about an older women who came into the clinic for cognitive testing due to memory changes.  Dementia ran in her family.  Her husband accompanied her to the appointment and had his own terminal diagnosis.  Rosie had been a successful professional and had been compensating well so her diagnosis was probable Alzheimer’s in moderate stages.

Consider that Rosie is grieving the impending loss of her husband due to his illness as well as the loss of herself to dementia, while Vince is grieving the loss of her wife’s ability to participate in their relationship and daily life as she had before her memory difficulties, along with the burden of caring for her and himself, both now with serious illnesses.

Signs and Symptoms of Anticipatory Grief:  Tearfulness, anger, loneliness, anxiety and depression, guilt, desire to talk or withdraw, fear, fatigue, emotional numbness, poor concentration, forgetfulness.

Recommended reading:
1. “Relentless Goodbye, Grief and Love in the Shadow of Dementia” by Ginnie Horst Burkholder.  Ginnie’s husband had Lewy Body Dementia.  The book started as a journal so it is a series of thoughts, experiences, etc.

2. “Rising Strong” by Brene Brown.

“Grief is the emotion we perhaps fear most.”  Three most foundational elements of grief are loss, longing and feeling lost.

Loss
* Loss of what could be
* Loss of what we thought we knew or understood about something or someone.
* Thoughts of:  This wasn’t supposed to happen.  This wasn’t how things were supposed to go.

Longing
* Not a conscious thing
* An involuntary yearning for wholeness, opportunity, for meaning
* For the opportunity to regain or even simply touch what we’ve lost
* Can come out of nowhere and be triggered by something you didn’t even know mattered.
* Speaker gained 30 pounds in 6 months between her dad’s diagnosis and death trying to fill the emptiness, loss, and longing.

Feeling lost
* Feeling your loved one is far away, uncertain, not sure what steps to take.

Grief requires us to reorient ourselves to every part of our physical, emotional and social worlds.  In caring for dementia we must do this repeatedly over the progression of dementia and losses in the abilities of our caree.

* The more difficult it is for us to articulate our experiences of loss, longing, and feeling lost, the more disconnected and alone we feel.

* Coping strategies— writing down experiences of heartbreak and grief.  Making clear to themselves what they were feeling, so they could articulate it to others without having to explain or justify their feelings.

If you speak with others about your grief it should be to those who get what you’re going through, not someone who has no clue.  If someone cannot relate, he/she is not helpful.

Stages of Grief (Elizabeth Kubler Ross)
* Denial
* Anger
* Bargaining/Guilt
* Depression
* Acceptance

[Denise’s note:  I would add since her book was published in 1969, it is understood these stages are not necessarily sequential, and over the many years caring for dementia (and other long-term illnesses) they will wax, wane, overlap, repeat, etc.  Be patient with yourself and others grieving around you.]

Denial
* Hoping the person is not ill
* Expecting the person will get better
* Convincing yourself that the person hasn’t changes
* Attempting to normalize problematic behaviors

Anger
* Frustration with the person
* Resenting the demands of caregiving
* Resenting family members who can’t or won’t help
* Feeling abandoned

Bargaining/Guilt
* Wondering if you did something to cause the illness
* Feeling bad if you enjoy life, or feeling like a failure
* Wishing the person would go away
* Having unrealistic expectations of yourself… “I should have done _____ ”  Especially common to have promised never to put your loved one in a nursing home and feeling guilty that you have.

Depression
* Feeling overwhelmed by loss
* Crying frequently
* Withdrawing from social events of needing more connection with others
* Withholding (stuffing) emotions or displaying them more openly
* Women tend to feel more comfortable becoming depressed in expression of grief, rather than expressing them constructively.  Grief can also come out in erratic behaviors.
* Other symptoms can include: difficulty focusing, sleeping too much/too little, changes in appetite, increased irritability, feelings of worthlessness/helplessness/hopelessness, loss of interest or apathy, persistent sad or empty feeling.

Acceptance
* Learning to live in the moment & let go of the past
* Find personal meaning in caring for someone and railing the PLWD IS doing the best they can
* Embracing your fried instead of living in resistance
* Think of acceptance of home plate in baseball.  You run around the bases of denial, anger, bargaining, and depression and when you get to acceptance, you find some relief.
* Sadly, when caring for dementia you may grieve each loss separately as they happen one by one; bill paying, cooking, medications, dressing, eating, bathing, etc.

Quicksand (Emotional quicksand is the visualization concept of her grief talk.)
* Definition:  “Loose wet sand that yields easily pressure and sucks anything resting on or falling into it.”

Avoiding emotional quicksand starts by recognizing common quicksand areas:
* Receiving a diagnosis of dementia
* Loss of normalcy and time to yourself
* Loss or change in the relationship
* Loss of driving privileges and financial stability
* Loss of independence, and hope for the future that you had planned for.

Look for Ripples
* Be on the lookout for ground that appears unstable.  This requires looking ahead, not being in denial.
* Know that the grief is going to come.
* It’s not a matter of IF, but WHEN changes will be required to properly care for your loved one.
* It’s best to plan for these eventualities when you are not in crisis mode, and that requires acknowledgement of eventual diminished abilities on their part.

Test the ground in front of you with your walking stick.  Is there quicksand in front of you?
Your walking stick is a good friend, faith, support group, etc. to help you see the reality of the situation and offer emotional support.

How to get out of emotional quicksand; seven rules for survival:

1. Don’t panic.  Think of how thrashing about in quicksand makes you sink faster.
* Know that your feelings of anxiety, fear and overwhelm are normal.
* Find an outlet for your feelings and express them in an environment that feels safe.  Faith, or support group, especially.

2. Get emotional relief.
* If you are wearing something heavy (like a load of grief, guilt and regret), unstrap it immediately and drop everything.
* Understand that it is “real grief” that you need to work through.
* Figure out ways to “let go” so grief doesn’t stop you in your tracks and sink you.
* Daily relief suggestions: prayer, favorite TV show, coffee or tea break, meditation, exercise, a movie

3. Reassess/reevaluate frequently.
* If you feel your feet (or spirit) getting stuck…take steps backward and reassess before the quicksand takes hold.

4. Lay back and relax…and breathe.
* Sit down and lean back if your feet are stuck fast.
* Breathe deeply…it will help you remain calm and buoyant in hard times.  It actually helps you think better.

5. Take your time.
* Frantic movements will only hurt your cause.
* Take it slow so that the steps you do take really count when it matters.

6. Use a stick (support person/people)
* Carry a walking stick (a support person) any time you’re in quicksand country.
* It can be helpful to shift your focus from the anticipated decline or death of a person, to celebrating what you still have left.
* Cry and grieve the loss of what was, so you can move forward and be effective as a caregiver.

7. Take frequent breaks.
* Extracting yourself alone from quicksand can be exhausting.  Conserve your energy before you become too fatigued.
* Grief must be fully experienced before you can move on.  You need to take breaks and allow yourself ftp grieve the losses (and there are many!) along the way.
* Stay involved in your hobbies, faith, friendships, etc. to reduce stress and increase energy to be available for your caree.

Bonus rule 8. Laugh through your tears.
* It increases endorphins in your brain, which relieves pain and stress.  Caregivers have more cortisol (stress hormone) than others.  Endorphins balance the cortisol.

Being in resistance and in denial…only makes matters worse!

Reach out to others who understand and can help.  You can’t care for someone throughout the length of dementia alone.

Celebrate the good moments, and grieve what can no longer be – away from your caree, so you don’t increase their stress.

Use grief to build inner strength as care partners.

We ALL have our unique journey of grief.  Embrace it.

We must embrace pain and burn it as fuel for our journey.

Question & Answer Session:

Q: How can she help her siblings come to grips with mom’s dementia diagnosis, or must they come to acceptance in their own way?

A:  You can only gently, lovingly, nudge them toward acceptance by sharing your own experience and changes you are grieving about the changes in Mom.  Use “I” messages and your own reality to help them join you in the same place.  Every family member’s stage of grief is going to change over the course of changes in their mother, so be patient with everybody.

Q:  Well meaning friends and co-workers don’t seem to understand.  Visitors don’t see the worst.  Caregiving wife feels isolated.  How can she share with them what she’s going through?

A:  We each have our own unique grief journeys, and our society doesn’t discuss it or deal with it well.  Anticipatory and ambiguous grief is a new concept for many people.  Invite them to listen to what things are like from your perspective as their caregiver and what you’ve already lost in your relationship due to dementia.  If they can imagine being in your shoes, they will begin to understand and empathize.

Q:  Would it be a good idea to bring up anticipatory and ambiguous grief in my support group?

A:  Absolutely!  It is common for a caregiver to say, “Why should I feel sad?  He/she is the one with dementia.”  These people don’t realize they are grieving their loved one’s losses just as much as the person with dementia is grieving their own losses.  Making everyone aware that they are both grieving will reduce stress, bring people closer, eliminate ignorance of these types of grief, and help people work through their caregiving journeys.

Q:  In terms of quicksand and having something heavy (emotional baggage) you must drop.  That’s hard.  How to let go?

A:  Support groups, coffee with a friend, confession of your raw feelings whether to a person or your journal.  Educate yourself about the disease so you know what you’re dealing with and how to do the best you can.  Relieve these feelings daily in some way.

Q:  What are common mistakes people make when being thrown into the role of a dementia caregiver?

A:  Dealing with Alzheimer’s begins with memory issues, but that is only the initial symptom.  When given the diagnosis of dementia, you must understand that when the whole brain becomes involved there are more symptoms to come.  Underestimating the demands that will be put upon you and thinking you can care for someone by yourself is a mistake.  Learn what to expect and start gathering people along the way to help in as many ways as they can.  Both you and your caree will need them.

“Self-Diagnose Successfully” and Research Resources

Someone in our local support group sent me this article recently.  We’ve had quite a few individuals with neurological conditions or family members discover the diagnosis themselves rather than receiving a diagnosis from a physician.  In this article, “People with rare or baffling conditions offer tips on how to do your own research and work with doctors to find answers.”

I think tips and resources suggested by this article are great advice, even after you have a diagnosis you can believe in.

The general research resources suggested include:
* PubMed, pubmed.gov
* CiteFactor, citefactor.org
* Wikipedia, wikipedia.org.  Especially for footnotes.

The research resources specific to rare diseases (defined as fewer than 200,000 Americans affected) include:
* Undiagnosed Diseases Network, bit.ly/UDNInfo
* Online Mendelian Inheritance in Man, omim.org
* National Organization for Rare Disorders, rarediseases.org
* Genetic and Rare Diseases Information Center, bit.ly/NIH-GARD

The tips on finding answers include:
* trust what you see
* follow your instincts
* make connections
* dig into the research
* separate good research from bad
* find a community
* work with your doctor
* don’t give up

Here’s a link to the article:

journals.lww.com/neurologynow/Fulltext/2016/12050/Self_Diagnose_Successfully__Patients_sometimes.17.aspx

Self-Diagnose Successfully: Patients sometimes understand their baffling conditions better than their physicians. Learn how to build a convincing case and work with your doctor to find answers.
by Richard Laliberte

Neurology Now
October/November 2016
Volume 12 – Issue 5 – p 16–20

Robin

 

Compassion fatigue – explanation and how to avoid

This post on The Caregiver Space (thecaregiverspace.org) from summer 2015 shares these suggestions for avoiding compassion fatigue:

* Assess your self-care.
* Stay physically active.
* Try deep breathing.
* Check your support system.
* Join a caregiving support group.
* Care for your spiritual self.

Here’s a link to the full post:

thecaregiverspace.org/what-is-compassion-fatigue/

What is compassion fatigue?
by Harriet Hodgson
The Caregiver Space
Jun 22, 2015

Robin