Category Archives: FTD

Coping with problem behaviors (DICE approach and a useful caregiver guide book)

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Coping with problem behaviors (DICE approach and a useful caregiver guide book)

The NIH (National Institutes of Health) hosted a two-day summit in October 2017 on research that is needed to improve quality of care of persons with dementia and their caregivers.  The summit was streamed live.  The summit was of most interest to those involved in research.  Only a few useful ideas were shared, including the DICE approach, which we’ve heard about previously.  It is an approach to responding to difficult behaviors.

DICE =

Describe – the who, what, when and where of situations where problem behaviors occur (the physical and social contexts)

Investigate – current dementia symptoms, medications, sleep habits, etc. that may be contributing to difficult behavior.

Create – a plan to prevent and respond to difficult behaviors by changing environment and educating the caregiver.

Evaluate – how well the plan is being followed and how it is working.  Make necessary adjustments that work for the family.

Recently, Laurie White, a social worker in the North Bay, sent me a copy of her excellent guide for family caregivers on “Coping with Behavior Change in Dementia” (dementiacarebooks.com).  (The book is to be shared within our local support group.)  Basically, this is a handbook to implementing the DICE approach.  Laurie and co-author Beth Spencer begin by saying that the family caregiver must become a “detective” to understand the cause of these behaviors.  They address coping with the 4As – anxiety, agitation, anger, and aggression – among other problems.  One guide book gives lots more helpful ideas to dementia caregiving than an entire two-day NIH conference!

Robin

 

Dealing with lack of motivation and helping someone accomplish tasks (with coaching)

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CareGiving.com runs a “Caregiving Podcast Network” on Blog Talk Radio. Every week, they host a 30-minute “FTD Chat” about various aspects of frontotemporal degeneration. (Both PSP and CBD are FTD disorders.) In a chat over the summer, guest speaker Geri Hall, PhD, ARNP, talked about motivating someone with FTD to do things and be less apathetic. As lack of motivation and apathy are issues in all of the disorders in our group, I thought the notes from this podcast were worth sharing with everyone. In addition, the focus of this podcast is helping someone with a neurological disorder do more for themselves, with coaching from the caregiver.

Denise Brown, founder of CareGiving.com, is host of the podcast. The expert speaker, Dr. Geri Hall, works at Banner Alzheimer’s Institute with families coping with all types of neurological disorders.

Brain Support Network volunteer Denise Dagan recently listened to the podcast. Denise has shared some overall insights. Note the two suggestions offered by Dr. Hall —
1- get the help of an occupational therapist
2- have your care receiver attend a day care program

In terms of overall insights, Denise Dagan says:

This 30-minute podcast is a very good talk about helping someone with a neurodegenerative disorder, who is having trouble accomplishing tasks, to be able to do more for themselves with coaching from their caregiver(s). Dr. Hall explains that people with neurodegenerative disorders do have goals. When their executive function process breaks down it prevents them from accomplishing those goals – or even starting them. This is especially true for those with dementia or advanced Parkinson’s disease. Dr. Hall emphasizes that people with executive function issues are not being lazy, willful, or manipulative. She gives specific suggestions for helping them to stay focused to complete each step of a task on the way to their goal. People with [neurological disorders] can suffer from apathy and/or depression, making some projects seem overwhelming. Breaking projects into separate tasks, even over several days, makes them more manageable and less exhausting.

If you have difficulty breaking down a task into its composite steps for your family member, Dr. Hall recommends having your neurologist write you a referral to an occupational therapist (OT) for “Functional assessment and task simplification techniques.” The OT will evaluate your care receiver to establish his/her skill level and teach you, the caregiver, how to break a task into an appropriate number of steps.

Both Dr. Hall and Denise Brown recommend having your care receiver attend an adult day program and pay attention to how they give instruction to the program attendees in a step-by-step fashion. Getting your care receiver used to this method of instruction both at home and at the day program brings continuity to their days. Having a routine both at a day program and home helps them anticipate what comes next.

Denise Dagan’s full notes from the podcast are below.

Robin

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www.blogtalkradio.com/caregiving/2017/08/24/talking-ftd-with-geri-motivating-persons-with-ftd

Notes by Denise Dagan, Brain Support Network Volunteer

Talking FTD with Geri: Motivating Person with FTD
Caregiving Podcast Network on Blog Talk Radio
August 24, 2017

Denise Brown is the host of this podcast. She has been having her own struggle motivating her husband. She recently put together that her husband is quite capable of participating in activities if she takes the time to instruct him step-by-step.

Denise’s expert guest, Geri Hall, PhD, begins by explaining how executive functioning is required to accomplish a task.

You must be able to:
– Set a goal
– Make a plan to accomplish the goal, and
– Be able to carry out the plan.

A person with executive function difficulties knows what they want to do.
– The more they think about it or concentrate on what’s involved in accomplishing the task, the less they are able to organize their thoughts and accomplish the task.
– They are not being willful or lazy or manipulative. Some days executive function may be better than others. Fatigue makes executive function much worse.
– Depending on the neurodegenerative disorder, they may or may not realize they have difficulty figuring out the proper order in which to do things.

A person with executive function difficulties may:
– Refuse to participate because they cannot immediately think how to get started. Don’t ask, “Do you want to…?” The answer will always be, “No.”

– Wander away in the middle – not because they lost interest or forgot what they were doing, but because they cannot think what to do next to accomplish the goal/task. Sometimes, if you touch their arm to distract them from their mental muddle, and give them the next step to continue toward their goal, they can complete the task at hand.

– Getting the steps mixed up or backward. Putting underwear on outside their outerwear, etc.

– Have difficulty maintaining attention or concentration.

To improve executive function and motivate participation in activities:
– Have a consistent schedule day-to-day. Even so, don’t expect them to be able to know what comes next.

– Use non-verbal prompting. They may not process complex sentences well. Aphasia = not being able to get the words out, but can also include not being able to process what’s being said to them.

— Listening to you splits their concentration from what they are trying to do (like shower), so hand them the soap, rather than tell them to pick it up.

— Trying to follow your instructions makes them think about the task. The more they think about it, the less they are able to finish the task.

– Have bright colored toothbrush, comb, cup, plate, etc. so your care recipient will gravitate toward them – and use them. [My mom liked purple! If it was purple, she would pick it… clothing, cake, toothbrush, comb, etc.]

– Post written instructions (on a white board). This may work early in the disease.

– Task simplification = break activities into steps your family member can follow. Take a bath may become: take off your clothes, use the toilet, turn on the water, get in the shower, etc. Or, you may have to break it down further: take off your shirt, take off your pants, take off your underwear… Have your neurologist write you a referral to an occupational therapist for “functional assessment and task simplification techniques” This teaches the caregiver how to break goals into the number of steps your care receiver needs.

– Get rid of distractions, like the TV. They cannot split their attention.

– Keep activities short in duration. Next time you ask them to participate, notice how long it is before they begin to lose eye contact and drift away from the activity. Keep future activities to just short of that time limit.

– The goal is to get the task done – not necessarily entirely independently.

It definitely can be frustrating. It is easier to just let them watch TV, but the reward is worth the effort because it gets your family member involved with life again. They only watch TV so much because nobody is helping them accomplish things by breaking down the task into each individual step.

Denise Brown was able to have her husband help bake blackberry cobbler by giving him one task at a time until he lost interest. Later she built raised beds for him to garden in because he used to love gardening. She goes out with him and gives him each task to accomplish planting, watering, etc. Then, they made eggplant parmesan together when he brought an eggplant in from his raised garden beds, and were able to enjoy the food together. See if you find joy in your loved one’s face when they are able to do something themselves, even with some assistance. It will warm your heart as a caregiver.

Dr. Geri Hall says to recognize as caregivers you have a lot on your plate and need to develop one way you reward yourself at the end of the day (wine, hot bath, etc. that you find relaxing) as a reward for a job well done in the overwhelming effort you make to engage your loved one in life.

Start with things that are over learned, bathing, eating, hobbies. Your care receiver will be able to participate easier doing these activities with help than doing something that’s totally new. Remember, if it doesn’t work, so what? Try something a bit different tomorrow.

Denise says having your family member go to an adult day program a few times a week helps them to be able to follow these step-by-step instructions at home because that is how the day programs get participation from the program attendees. If you can learn how instruction is presented to your care receiver most effectively, you will be more successful at giving instructions at home. Day programs also follow a routine every day, which helps your care receiver anticipate what comes next.

When your family member is at the day program, you have time for yourself. You should take the opportunity to relax and engage with others outside of caregiving conversation, rather than running errands or doing chores.

You will experience resistance from your care receiver to attending a day program, but if you are persistent and allow them some weeks to acclimate to the new place, people and routine, you may find they really enjoy it, eventually.

 

“Is It Alzheimer’s or Another Type of Dementia? How the Experts Make a Diagnosis”

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This post may be of interest to those dealing with the non-Alzheimer’s dementias in our network — Lewy body dementia, progressive supranuclear palsy, and corticobasal degeneration. (PSP and CBD do not always present with dementia.) Lewy body dementia is specifically mentioned in this interview.

Being Patient (beingpatient.com) is an Alzheimer’s news website. In July 2017, the news organization interviewed Dr. Marwan Sabbagh of the Barrow Neurological Institute in Phoenix, AZ. In the interview, Dr. Sabbagh describes the challenge in making a dementia diagnosis. He describes some improvements that could be made in the standard practice of diagnosing dementia.

Dr. Sabbagh says: “Pathologically pure Alzheimer’s without any other pathology is quite rare. It’s only like 33 to 40 percent. Most Alzheimer’s is mixed with something else – hippocampal sclerosis, vascular change, argyrophilic grain [disease], or Lewy body. Pure disease of any type is quite uncommon. A lot of people have overlap but they look typically like Alzheimer’s dementia, so the clinical presentation and the pathological presentation don’t always align as much as you would think they would. … As a clinician, I ask ‘What’s the clinical syndrome and how do we go about teasing it out to make sure we have the correct diagnosis?’ … People are grossly misdiagnosed. Lewy body is not detected often. Most of the other dementias are completely missed.”

The video interview is just under 12 minutes. Excerpts from the interview are copied below. (The “transcript” doesn’t include all of the interview.)

Robin

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www.beingpatient.com/alzheimers-another-type-dementia-experts-make-diagnosis/

Is It Alzheimer’s or Another Type of Dementia? How the Experts Make a Diagnosis
Interview with Marwan Sabbagh, MD
Being Patient (beingpatient.com)
July 26, 2017

Although the National Institute of Health has published medical reports on guidelines to diagnose Alzheimer’s disease, it can sometimes take years for patients to get an accurate diagnosis from their primary care doctors. Expensive scans or lumbar puncture tests are one way to confirm the presence of beta amyloid plaques or tau tangles in the brain, but those aren’t an option for many patients due to their high cost. Being Patient asked Marwan Sabbagh, a leading researcher on the diagnosis of Alzheimer’s disease at the Barrow Neurological Institute about the best way to determine if a patient is suffering from mild cognitive impairment or dementia.

Being Patient: There’s a lot of confusion over how you get diagnosed for Alzheimer’s disease. Previously, we’ve been told that a PET (positron emission tomography) scan or a spinal tap are the only conclusive ways to figure out whether there are plaques and tangles in your brain. Why is there so much confusion over diagnosing dementia?

Marwan Sabbagh: The historical, medical practice in the United States has been to take a diagnosis of exclusion. You have a medical history, a neurological exam, cognitive impairment, historically, and then you get a MRI to exclude brain tumors, masses, hydrocephalus, or stroke. You get a thyroid [exam] to exclude thyroid problems, and you get a B12 level [test] to exclude deficiencies in B12. The problem has been a diagnosis of exclusion is a grossly inaccurate approach and the diagnostic accuracy, at best, is 75 percent.

Being Patient: What are some of the essential questions you need to ask and what are some of the essential things that primary care doctors should be looking at in order to determine whether or not this is Alzheimer’s dementia?

Marwan Sabbagh: I think doctors know how to do a mini-mental state exam – a MOCA, Montreal Cognitive Assessment. They know what to do but they don’t know what questions to ask on the front end, so I’ve been proposing a restructuring of the initial side of the consultation. There are structured interviews that are available now – the AD8, the AQ and the IQ code. These are caregiver informant-based interviews. Do they have this?Do they have that? Are they doing this? [These questions] inform the provider to say, “It’s time to look further.”

The second thing I propose is that we need to look at aggregate risk analysis. There are now ways to say that the probability of Alzheimer dementia is very high if you are age 85, have a family history, female gender, hypertension and diabetes. You can come up with a score that says the probability of Alzheimer dementia is very high.

Being Patient: I want to talk a little bit now about different types of dementia and diagnosis – a number of patients say they were misdiagnosed and a pathologist we spoke to said that, through autopsy, he found that the majority of cases in his practice are being misdiagnosed. How do you tell if it is Alzheimer’s or another type of dementia?

Marwan Sabbagh: Pathologically pure Alzheimer’s without any other pathology is quite rare. It’s only like 33 to 40 percent. Most Alzheimer’s is mixed with something else – hippocampal sclerosis, vascular change, argyrophilic grain (disease) or Lewy body. Pure disease of any type is quite uncommon. A lot of people have overlap but they look typically like Alzheimer’s dementia, so the clinical presentation and the pathological presentation don’t always align as much as you would think they would.

As a clinician, I ask “What’s the clinical syndrome and how do we go about teasing it out to make sure we have the correct diagnosis?” You are absolutely right. People are grossly misdiagnosed. Lewy body is not detected often. Most of the other dementias are completely missed.

Being Patient: Does it matter to the patient in the end in terms of how they’re dealing, and coping, and engaging in maybe lifestyle treatments or medication?

Marwan Sabbagh: It does. It matters a lot. The reason it matters is lifestyle modifications, which are probably very good for brain wellness and prevention strategies in the Alzheimer’s spectrum from pre-symptomatic to the full dementia probably do not have as much data to support the recommendations in other dementias. Flatly, I don’t think there’s any shred of evidence that lifestyle recommendations would help another dementia like Lewy Body or frontotemporal dementia.

Being Patient: Is there a difference in diagnosing early onset versus dementia as Alzheimer’s in an elderly patient?

Marwan Sabbagh: In the way I approach it, yes. Most commonly, if it were a young person, early onset, I would do a spinal tap as my CSF (cerebrospinal fluid) confirmation to confirm the diagnosis. I tend to be a little bit more aggressive and invasive in what I do to diagnose my patients. Older patients, I might get a PET scan and, if it’s approved, I might get neuropsychological testing. I might get an ApoE genotype.

Being Patient: So many people now are impacted by this disease, a lot who are the children of a parent or a grandparent, and they want to know what are the early signs that they should look out for?

Marwan Sabbagh: You never misplaced things, now you’re misplacing things from time to time. You’re telling something repeatedly and you never did that before. These are the kinds of very subtle, very beginning things that would say [it’s] time to get an evaluation. Especially if there’s a risk.

Being Patient: There are people who carry ApoE4, who have both one variant and are homozygous, and there are people who don’t, who end up getting Alzheimer’s. How much should that genetic profile enter into diagnosis?

Marwan Sabbagh: That’s controversial and I’m sure you’ve had different opinions from different doctors so I’m going to give you my perspective. I tend to be on the more progressive side of the discussion. In the clinical evaluation of my patients with mild cognitive impairment (MCI) due to Alzheimer’s or dementia due to Alzheimer’s, I frequently order an ApoE genotype. If they’re an ApoE4 carrier in the setting of MCI or dementia due to Alzheimer’s then the probability of Alzheimer’s pathology in the mix is very high.

I never order it for people who are asymptomatic, even if they have a family history. I agree with many in the field that it’s not inherently a diagnostic, it is simply a risk factor, but it’s a very rich risk factor because, if you are an ApoE4 carrier, the probability of having Alzheimer’s amyloid on your PET scan is very high. Some people are even proposing the idea of using it as a screening tool. Has this become common practice? The answer is absolutely no.

Being Patient: Once you give someone a diagnosis of Alzheimer’s dementia, do you believe the earlier you catch it the better off you are?

Marwan Sabbagh: I come from the school of thought that Alzheimer’s is a treatable disease. I am aggressive in treating my patients. I am proactive in addressing their healthcare needs, their family needs, their medication needs, their legal needs, and offering clinical trials as an added value to our clinical practice. Patients want that information. They’re seeking it. They’ve craving it. They want it from a credible source.

 

Use of donated brain tissue in research

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One of the key benefits of brain donation is that it enables donated tissue to be used for future research.  Families are understandably interested in knowing how their loved one’s donated brain has been used in research.

The Mayo Clinic Brain Bank does not update families on this.  With hundreds of brains in their brain bank, it would be impossible to keep all families with all diagnoses updated.

So we recommend to families what we do — look at PubMed (pubmed.gov).  PubMed is a US government-funded database of all published research articles around the world.

Conduct a search

Conduct a search in PubMed (pubmed.gov) along these lines:

XYZ (diagnosis) autopsy confirmed Mayo Dickson

XYZ is either the clinical diagnosis of your loved one or the neuropathologic (confirmed) diagnosis of your loved one.

If the neuropathologic diagnosis, it’s best if this is written in the same language as was in your family member’s neuropathology report from Mayo.  Some common neuropathologic diagnoses we see are:

* Alzheimer’s disease

* Lewy body disease  (which are some of the words used when the diagnosis is Parkinson’s Disease, PD Dementia, Lewy body dementia, or dementia with Lewy bodies)

* frontotemporal lobar degeneration (which are the words that might be used when referring to frontotemporal dementia, primary progressive aphasia, or semantic dementia)

* progressive supranuclear palsy

* corticobasal degeneration

* multiple system atrophy

* motor neuron disease

* argyrophilic grain disease

The words “autopsy confirmed” are included in the search as we are hoping to find only the research that includes donated brain tissue.

The words “Mayo” and “Dickson” are included in the search as this refers to Dr. Dennis Dickson, the neuropathologist at the Mayo Clinic.  If any research is published around the world utilizing brain tissue donated to the Mayo Clinic, Dr. Dickson will be given credit.

Search results usually go back many years.  You can refine the search by clicking on “Publication Date.”  Example:  let’s say your family member died in 2016.  You can select “1 year” to find articles published in the last year.

Look at the “Methods” section

Say that this refinement yields one article.  You can look — for free — at the abstract of the article.  Pay attention to the “Methods” section of the abstract.  This will provide a date range.  Example – “We assessed the distribution and severity of [some] pathology in [number] autopsy-confirmed XYZ [diagnosis] patients collected from YEAR to YEAR.”  Did your family member’s brain arrive at the Mayo Clinic Brain Bank during that timeframe?

You can perform this same search every so often.

Sign up for email alerts

What we at Brain Support Network do is sign up for email alerts whenever research is published using this search criteria.

It is very exciting when your loved one’s donated brain tissue has been used in research!

We at Brain Support Network will try to keep our blog site updated whenever we see research utilizing donated brain tissue that we’ve helped make arrangements for getting that tissue to Mayo’s researchers.

Thank you for donating your loved one’s brain!  You’ve helped us all by enabling research.

Robin

 

The need to distinguish between Alzheimer’s and other dementias

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This is a long article in a recent LA Times about whether it’s important to distinguish between Alzheimer’s and other forms of dementia. Understandably, the focus is still on Alzheimer’s Disease.

Here are some excerpts:

* “Alzheimer’s disease is the most feared and most common form of dementia, accounting for between 60% and 80% of all dementia cases diagnosed. But at least seven other forms of dementia, and dementia linked to the movement disorder Parkinson’s disease, can cause loss of memory, reasoning, judgment and the ability to speak, comprehend and care for oneself.”

* “Doctors and insurers, including the federal government, which administers Medicare, are asking some variants of the same questions: If an effective test, which costs between $3,000 and $5,000 a shot, can diagnose dementia early, and distinguish Alzheimer’s from other forms of dementia, should it be recommended to patients with cognitive concerns and routinely covered by their insurance? Would it make patients’ lives better, or lower the cost of their care?”

* “At the Alzheimer’s Assn. International Conference in London last week, researchers reported their preliminary findings from a trial that is testing the impact of diagnostic testing for Alzheimer’s disease on nearly 19,000 Medicare beneficiaries … with a diagnosis of either ‘mild cognitive impairment’ or atypical dementia. The study … set out to find out whether knowing — getting the costly test that would offer either confirmation or reprieve — would change the way that patients with cognitive troubles are treated, or the way that they plan their lives. The preliminary results suggested it did. After getting the results of a PET brain scan to detect and measure amyloid deposits, which are the key hallmark of Alzheimer’s disease, roughly two-thirds of the subjects saw their medication regimens changed or were counseled differently by their doctors about what to expect. That new information may have guided family caregivers in planning their own futures, or prodded patients to make financial decisions and power-of-attorney assignments sooner. Some who learned that they did not have Alzheimer’s discontinued medications that can have unpleasant side effects. Others learned they do have Alzheimer’s and decided to enroll in clinical trials that will test new drugs.”

* “A second study presented in London analyzed data from several studies, and found that in a large population of research participants with cognitive concerns, brain amyloid PET scans led to a change in diagnosis in approximately 20% of cases.”

* “To the estimated 16 million Americans living with some form of cognitive impairment, telling the difference could make a significant difference. Dementia forms with different origins progress differently (or sometimes not at all). They respond best to different medications, and will come to require different levels of care and treatment. Some (though not Alzheimer’s) can even be reversed with treatment. Being able to distinguish which form of dementia a patient has should help doctors and caregivers to make better choices.”

Here’s a link to the full article:

www.latimes.com/science/sciencenow/la-sci-sn-alzheimers-transcranial-magnetic-stimulation-20170726-story.html

Science Now
Is it Alzheimer’s or another dementia form? Why doctors need to distinguish and how they might do so
by Melissa Healy
LA Times
July 27, 2017

Robin