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Recent 60 Minutes Program on FTD and More...

I wanted to post a link that a colleague shared for the recent 60 minutes program on FTD.  Caring for a loved one with any form of dementia is challenging, stressful and at times overwhelming.  It is like a giant puzzle that seems to have no solution.  However, families that hear the diagnosis of fronto-temporal dementia are sadly and often in for even more challenges.  

 

So what is Fronto-temporal dementia? 

 

Fronto-temporal dementia (FTD) is an umbrella term for a group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain.  These areas are generally associated with personality, behavior, socialization, and language. 

 

General Overview:

  • Selective and progressive atrophy involving the frontal and temporal lobes

  • Changes in behavior, personality, cognitive abilities, language dysfunction and/or motor deficits, functional impairment. 

  • Brain areas impacted - involved in motivation, reward processing, personality, social cognition, attention, executive functioning and language

  • Estimated 10,000 people diagnosed per year

  • Strong genetic component (1 in 3)  

  • Symptoms begin between 40 and 65 years of age (may appear in early 30’s & as late as 90’s)

  • 3rd leading case of dementia, 2nd most common form of early onset dementia

 

There are 3 main FTD syndromes: Behavioral variant, Semantic variant, Non-fluent variant 

 

Most common presentation is behavioral, or frontal variant, which occurs in 50-60 % of cases. 

 

Semantic variant, or temporal variant, is noted in approximately 20% of cases.

 

Behavioral Variant:

  • Frontal, varying behavioral and mood changes.

  • No other part of brain can cause such a wide variety of symptoms!   

  • Disturbing personality / behavioral changes- social, sexual, with spontaneity

  •  Impulse control, initiation, &  judgement issues

  • Memory, language, problem solving, & processing difficulties

  • Motor dysfunction.

 

Semantic Variant primary progressive aphasia:

  • Temporal- involved in  primary auditory perception

  • Gradual loss of the ability to speak, read, write and understand what others are saying, anomia (naming impairment, worse for nouns), and difficulty understanding words and objects. 

  • Substituting prototypes (e.g., dog instead of camel) or superordinates (e.g., animal instead of dog), fluent speech that is disconnected or without meaning, impaired comprehension of single words, spelling and reading errors, impaired use and recognition of objects and/or familiar faces (agnosia).

 

Non-fluent primary progressive aphasia:

  • Also gradual loss of the ability to speak, read, write and understand what others are saying. 

  • Characterized by apraxia and agrammatism, resulting omitting words in sentences, articulation problems, effortful and non-fluent speech, lack of function words.

  • Difficulty with comprehension especially of complex words / sentences, eventual mutism, swallowing issues.  

Caregivers may notice the following changes in their loved one: 

 

• Using the wrong word or having problems expressing needs

• A slow, delayed, or overall lack of response to basic questions and conversation

• Using ‘filler’ words, such as “thingy” "thingamabob" or “whatsit” "whosit"

• Becoming pushy, bossy, inflexible, resistant to change, or with sudden outbursts, abrupt anger  -like hitting a switch.

• Eating inedible items or not comprehending very basic dangers

• Getting information in the wrong order or piecing facts together incorrectly or illogically

• Reduced speech, one word answers, no initiation of conversation and social withdrawal

• Minimal response to questions and lack of  elaboration

• Spontaneous, loud, or socially inappropriate comments or outbursts

• Repetitive sayings,  jokes, phrases, or stories said abruptly , at times inappropriately, and regardless of situation

• Repeated comments, themes, or mantras

• Specific extemporaneous monologues produced, without real interaction, appropriateness, or social connection

• Appearing emotionally blank or showing inappropriate emotional responses or connections to others 

• Lack of an understanding of single very common word and/or of simple concepts

• Lack of an understanding of and connection with the world around them.  Inability to understand common items such as what a key or spoon is for or a tooth brush.

 

The effects of FTD dementia on one's ability to communicate presents numerous challenges for caregivers.  Having an education and understanding of the disease process, however, can make caring for and managing challenging behaviors a little easier.

 

Due to the often significant behavioral issues and unpredictable nature of this disease process, sadly placement in a care community can be very difficult and challenging for many patients.  I often recommend a smaller community with very seasoned staff members or a smaller group home situation or if the client is already in a larger memory care facility or at home they often benefit from having supplemental private duty care for ADL support due to their processing time, etc.  

 

So what exactly causes these type of symptoms in FTD patients? Since clearly the  frontal and temporal lobes are effected by this disease process let's begin there...  

 

The frontal lobe is responsible for regulating our communication with others including the social and emotional aspects of our interactions.  

 

The temporal lobe is responsible for our general knowledge and the understanding of words and concepts. So damage to these areas will produce a variety of results depending upon the individual.  There are of course common themes and situations, but everyone's path is clearly a little different.   

 

Some approaches to take in managing behaviors:

 

1.  Be patient and never rush!  Giving time to process is very important and often times why individuals have difficulties in some facilities when rushed due to the demands of care.  

 

2.  Keep wording simple, concise,  and provide visual cues.  

 

3.  Maintain a specific routine / schedule to provide comfort and support.  Change can be disruptive and upsetting. However, always be flexible in meeting care needs as expressed by individual!  Take the cues from them and connect at their level!  Let them set the pace!  

 

4. Be realistic and proactive with behavior management.  Do not allow visitors at difficult times of the day and ensure that a rest period is maintained on their terms to limit late day fatigue and further behavioral issues.  Non medication interventions are very important!  

 

5.  Ensure that your loved one is followed by a Geriatric or Neuro Psychiatrist specializing in dementia care.  This is critical for proper medication management if  / when needed.   

 

If you or your loved one has fronto temporal dementia and you require guidance please feel free to contact me through the contacts tab.  I am always happy to assist and to help you in putting the pieces together! 

 

 

60 minutes Link Below:

 

 

________________________

 

References:

  • •Boxer AL, Tsai RM. Therapy and clinical trials in frontotemporal dementia: past, present, and future. Journal of Neurochemistry. 2016 Aug; 138(Suppl 1): 211–221.

  • •Boxer AL, Knopman DS, Kaufer DI, Grossman M, Onyike C, Graf-Radford N, Mendez M, Kerwin D, Lerner A, Wu CK, Koestler M, Shapira J, Sullivan K, Klepac K, Lipowski K, Ullah J, Fields S, Kramer JH, Merrilees J, Neuhaus J, Mesulam MM, Miller BL. Memantine in patients with frontotemporal lobar degeneration: a multicentre, randomised, double-blind, placebo-controlled trial. Lancet Neurol. 2013 Feb; 12(2): 149-56.

  • •Jicha GA and Nelson PT. Management of frontotemporal dementia: targeting symptom management in such a heterogeneous disease requires a wide range of therapeutic options. Neurodegener Dis Manag. 2011 April; 1(2): 141–156.

  • •https://www.lbda.org/go/lbd-spectrum

  • •https://www.karger.com/Article/FullText/375363

  • •https://nanfoundation.org/neurologic-disorders/dementias/what-is-frontotemporal-dementia

  • •https://ftd.med.upenn.edu

  • •https://www.lbda.org/content/therapeutics

  • •https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia

  • •https://memory.ucsf.edu/frontotemporal-dementia

  • •https://ftd.med.upenn.edu/about-ftd-related-disorders/what-are-these-conditions/progressive-language/semantic-variant-primary-progressive-aphasia-svppa

  • •https://www.theaftd.org/what-is-ftd/primary-progressive-aphasia/nonfluent-agrammatic-ppa-nfvppa/

  • •https://www.ninds.nih.gov/Disorders/All-Disorders/Frontotemporal-Dementia-Information-Page

  • •https://ftd.med.upenn.edu/living-with-ftd-related-disorders/common-medications-treatments

  • •https://www.ucsf.edu/news/2009/11/8211/binge-eating-clues-thanksgiving-overeating-frontotemporal-dementia

  • •https://www.ucsfhealth.org/conditions/frontotemporal_dementia/signs_and_symptoms.html

  • •https://www.theatlantic.com/health/archive/2014/01/a-lesser-known-dementia-that-steals-personality/282661/

  • •https://www.nytimes.com/2012/05/06/health/a-rare-form-of-dementia-tests-a-vow-of-for-better-for-worse.html

  • •https://www.theaftd.org/for-health-professionals/treating-ftd/

  • •Boxer AL, Tsai RM. Therapy and clinical trials in frontotemporal dementia: past, present, and future. Journal of Neurochemistry. 2016 Aug; 138(Suppl 1): 211–221.

  • •Boxer AL, Knopman DS, Kaufer DI, Grossman M, Onyike C, Graf-Radford N, Mendez M, Kerwin D, Lerner A, Wu CK, Koestler M, Shapira J, Sullivan K, Klepac K, Lipowski K, Ullah J, Fields S, Kramer JH, Merrilees J, Neuhaus J, Mesulam MM, Miller BL. Memantine in patients with frontotemporal lobar degeneration: a multicentre, randomised, double-blind, placebo-controlled trial. Lancet Neurol. 2013 Feb; 12(2): 149-56.

  • •Jicha GA and Nelson PT. Management of frontotemporal dementia: targeting symptom management in such a heterogeneous disease requires a wide range of therapeutic options. Neurodegener Dis Manag. 2011 April; 1(2): 141–156.

  • •https://aspe.hhs.gov/system/files/pdf/257216/ExamDCMod.pdf

  • https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737

  • https://memory.ucsf.edu/frontotemporal-dementia

  • https://www.nia.nih.gov/health/what-are-frontotemporal-disorders

 

https://www.alz.org/dementia/fronto-temporal-dementia-ftd-symptoms.asp

 

Jackie Kindell, Specialist Speech and Language Therapist, Penine Care NHS Trust

 

 

 

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