Category Archives: FTD

Brain Donation: It Takes Brains to Solve FTD

Date
Posted by

Brain Support Network was recently featured by the FTD Disorders Registry in their quarterly newsletter  “The Voice of FTD”. The article delves into the importance of brain donation for researchers and families searching for an accurate diagnosis.

Excerpt : “Currently, there are no known cures nor treatments to slow the progression of FTD. But brain donations provide researchers tools to investigate the complex genetic and biochemical steps that lead to loss of brain cells. This may provide clues to discovering ways to prevent, treat, or cure these neurological diseases.”

The full article can be viewed here.

Swallowing, Eating/Chewing, Taste/Smell, etc – Notes from Speech Therapist

Date
Posted by
Swallowing, Eating/Chewing, Taste/Smell, etc – Notes from Speech Therapist

Courtney Lewis, a speech pathologist in Australia, spoke recently to the FTD (frontotemporal degeneration) support group in Hawthorn. She addressed swallowing, eating/chewing, oral behaviors (common in the behavioral variant of frontotemporal dementia), taste/smell, and taking medication. Helpful notes from the meeting were taken by Wendy Kelso. I read these notes on the FTD Support Forum, posted by online friend Glen, whose late wife had semantic dementia. Wendy has given permission for these notes to be shared.

Note: I’ve left in all the Australian spellings and terminology (eg, “swallowing tablets” for “swallowing medication”).

Robin

———————————————

Summary of Discussion with Courtney Lewis, Speech Pathologist
FTD Support Group, Dementia Australia Hawthorn
1st November 2019
Minutes: Wendy Kelso

SWALLOWING

– Swallowing is a highly complex activity that requires planning and co-ordination of a number of brain regions
– Controlled by motor cortex – muscles/movement
– Orbitofrontal cortex – behaviour
– Precentral gyrus – voluntary initiation of the swallow reflex
– Brain stem – cranial nerves
– When you swallow, the airways are closed to prevent food going down
the wrong way
– If the windpipe does not properly close off, or if swallowing is not well coordinated, choking can occur
– Aspiration pneumonia can occur if food enters the lungs
– Malnutrition and dehydration may occur as a result of swallowing difficulties

To help the swallowing reflex:

– Verbal instructions usually don’t work – better to use tactile (touch) cues to swallow
– Tap or stroke the persons chin or cheek gently to encourage swallowing
– Take little sips of water when the person has the sensation in their mouth
– Put a cold spoon on their lips to open the mouth to allow them to be fed
– Sometimes people have forgotten what to do next after chewing and need prompting to swallow
– Try and provide food that needs less chewing – steak/tough meat requires too much chewing and is effortful to swallow
– If the mouth is overfull, this affects swallowing
– Try and encourage smaller mouthfuls of food to assist swallowing

EATING/CHEWING

– Brain changes in FTD cause changes in eating, drinking, chewing and swallowing behaviour
– Many people consume food and drink to excess and cannot control their food intake
– They may consume large quantities of sweet foods, sweet drinks and/or alcohol and cigarettes
– They may eat items that are unpleasant or non-food items, such as soap
– Sweets have a high reward centre in the brain – quickly sends pleasure information to the brain
– If the person doesn’t chew their food, it usually reflects frontal/behavioural changes rather than a problem with swallowing

Eating Tips:

– Change the environment – reduce the volume of food/drink and the number of options
– Provide healthy food options in portion controlled sizes
– Never have a buffet meal if the person overeats and cannot monitor their food intake
– Use smaller spoons, plates, cups and wine glasses
– Routine helps – regular meal times in the same place using the same cutlery and crockery. This helps the person recognise it is meal time
– Using hands to eat and finger food is fine – it can assist people to remain independent at feeding for longer
– Changing the temperature and texture can assist the food to go down
– Soup can make the food more moist
– Some people will require 1:1 supervision with meal times to assist the process and ensure safety
– Chewing requires a lot of effort – it is a form of exercise
– Sometimes people become breathless when chewing and this can lead to aspiration
– Fatigue affects chewing and swallowing

ORAL BEHAVIOURS

– Common behaviours include lip smacking, lip chewing and tongue clicking
– Strategies can include sucking or biting items such as a soft piece of fabric or using ‘chewy tubes’
– Chewy tubes are highly tactile and can be in the form of a necklace or bracelet
– If the person licks their lips, try using lip balms or chapsticks
– If the person tongue clicks or thrusts, try and reduce the sound
– If the person is a smoker, this can leave their mouth feeling very dry and they can exhibit a variety of oral behaviours
– Try and encourage sips of water

TASTE AND SMELL

– Changes to taste and smell are caused by changes in the frontal and temporal lobes in the brain
– These changes are very common in bvFTD
– The olfactory bulb (smell) is usually working but the information is not being relayed back to the other areas of the brain that control smell
– Sweet foods are highly desirable as they have a stronger more pleasant taste and have a high reward and value system in the brain
– People with FTD find it difficult to process sour/bitter and disgusting foods
– As an example, broccoli and cauliflower have a ‘negative’ taste, so is less palatable than ice cream to the person with FTD

SWALLOWING TABLETS

– Sometimes swallowing tablets with ice-cream, yoghurt or custard can help
– Many people will find it very hard to swallow tablets with water/liquid
– Swallowing tablets with water is a complex multi-step task and requires more co-ordination

Nine tips for traveling with family members impacted by dementia (AFA)

Date
Posted by
Nine tips for traveling with family members impacted by dementia (AFA)

The Alzheimer’s Foundation of America (AFA, alzfdn.org) offers nine tips for traveling with family members impacted by dementia.  These tips apply whether you are traveling near or far.

Robin

———————-

https://alzfdn.org/nine-thanksgiving-travel-tips-families-impacted-dementia/

Nine Thanksgiving Travel Tips for Families Impacted by Dementia

AFA offers the following tips for family caregivers to consider:

  • Advise airlines and hotels that you’re traveling with someone who has memory impairment and inform them of safety concerns and special needs.
  • Inquire in advance with airports/train stations about security screening procedures.  This way, you can familiarize the person beforehand about what will happen at the checkpoint to reduce potential anxiety.
  • Plan the travel mode and timing of your trip in a manner that causes the least amount of anxiety and stress.  Account for the person and their needs when making arrangements; if they travel better at a specific time of day, consider planning accordingly.
  • Preserve the person’s routine as best as possible, including eating and sleeping schedules. Small or unfamiliar changes can be overwhelming and stressful to someone with dementia.
  • Take regular breaks on road trips for food, bathroom visits, or rest.
  • Bring snacks, water, activities and other comfort items (i.e., a blanket or the person’s favorite sweater), as well as an extra, comfortable change of clothing to adapt to climate changes.
  • Consider utilizing an identification bracelet and clothing tags with your loved one’s full name and yours to ensure safety.
  • Take important health and legal-related documentation, a list of current medications, and physician information with you.
  • Depending on the trip duration and/or the stage of the person’s illness, consult with their physician to make sure travel is advisable.

Young-onset dementia: key pointers to diagnostic accuracy

Date
Posted by
Young-onset dementia: key pointers to diagnostic accuracy

This interesting medical journal article from 2019 is about the best practices in the United Kingdom in diagnosing “young onset dementia” (YOD), which is dementia diagnosed under 65 years. The authors indicate that YOD is poorly recognized and often misdiagnosed as psychiatric disorders, including depression.

Excerpt: Recent studies “indicate that the average time to diagnosis was 4.4 years in younger people for all-cause dementia compared with 2.2 years for late-onset disease of comparable severity. Increased time to diagnosis for younger people is more likely when the younger person receives a diagnosis of FTD [frontotemporal dementia], rather than other dementia types. … Given the significance of changes in empathy and disinhibition often associated with FTD, delay in diagnosis can mean that close relationships break down prior to diagnosis or that people take considerable risks. … This complexity often results to delays in diagnosis and additional stress, frustration and burden for families.”

3-step Framework for Diagnosing Dementia (Brad Dickerson, MD)

Date
Posted by
3-step Framework for Diagnosing Dementia (Brad Dickerson, MD)

In this five-minute video, Brad Dickerson, MD, a neurologist at Mass General, describes a 3-step framework for diagnosing dementia:

www.mdmag.com/peer-exchange/early-diagnosis-dementia/recommendations-for-diagnosing-alzheimer-disease

Here are excerpts from the transcript:

Currently, I think we advocate for a 3-step framework that starts by describing the person’s overall cognitive functional status. What we mean by that is, does the person have mild cognitive impairment? Does the person have dementia? … What we really need to do is interview the person and, ideally, an informant, and find out what they are lacking in terms of independent functioning. What have they lost? What do they need help with?

[This] ultimately has major implications for the care plan. Establishing whether the person has mild cognitive impairment or dementia is very important, and I think that threshold varies from person to person and can be quite an arbitrary decision that really takes some clinical experience. Ultimately, what I like to ask people is, if you, as the care partner, can leave the person and go on a trip for a weekend or a week, would they function independently at the things that they need to try to get done to get by in daily life? If the care partner says, “No, I would never do that,” you can pretty comfortably say that the person probably has crossed the threshold into dementia. I think that’s the starting point, No. 1.

No. 2 is, what’s the particular cognitive behavioral syndrome that the person is experiencing? …[Is] the main problem memory loss? Is the main problem executive function? Is the main problem language? Are there multiple problems? A lot of times we see, I think, this common presentation of a person who has memory loss. They’re just not holding on to information, and they also have executive dysfunction. They’re not able to reason. They’re not able to perform tasks to the level that they used to be able to in order to get the job done to reach goals in a valid way.

I think that the syndrome is really meant to capture the major symptoms and signs that the person has of their illness. And that communicates important information to our colleagues and to the patient and family about where their problems are. I think it also allows you to highlight…what their strengths still may be. If this person has a primary memory loss syndrome but their executive function is still good, maybe they can make use of strategies to compensate for some of the problems that they’re having with memory. If they have executive dysfunction, they’re probably not going to be able to do that. Ultimately, that cognitive behavioral syndrome, that second level of specificity in our diagnostic formulation, communicates, in shorthand, to us and to others what the person’s problems are and maybe what they can still do.

And then the third level is, what’s the brain disease that is the cause of the problem? Sometimes it’s multiple diseases. Often, it’s compounded by other medical problems or things like medication effects that affect brain function but are not necessarily a disease in and of itself. The most common, I think, is Alzheimer disease mixed with cerebrovascular pathology in an older adult population—people over the age of 70, 75. In the younger people, I think it can sometimes be a more pure condition, whether it’s Alzheimer disease, or frontotemporal degeneration, or Lewy body disease. Those can often be primary diseases, especially in younger people.

That’s really the 3-step formulation that we advocate that we try to follow. It’s not always possible to be 100% confident in any 1 of those levels, and I think that’s where we have to talk about likely due to Alzheimer disease or likely due to cerebrovascular disease, and rate our level of certainty so we can think about whether we need some additional specialty involvement. If so, what does that involve, and how important is that in thinking about the management? We don’t necessarily have to have the sophisticated biomarkers that we talk a lot about in every individual with dementia likely due to Alzheimer disease. I think there are plenty of people we can all diagnose with fairly straightforward assessments and tests and not do the multimillion-dollar work-up on, that we often end up spending time talking about in the more specialized cases.