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:
You can find a link to the webinar slides here:
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.
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
* 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….
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
* 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.
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 = 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)
— 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.
* 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 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 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)
— 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:
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.
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.
* 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
— 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.)
* Impact of FTD symptoms
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)
* 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:
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
* 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
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.