The FrontoTemporal Dementia Symptoms and Staging Tool — FTD-SST

Behavioral Communication Motor & Movement

FrontoTemporal Dementia
Personality & Language Disorder
Stages & Symptoms FTD FTD FTD
FrontoTemporal Dementia (FTD) is

Motor Neuron Disease

ProSupra Nuclear Palsy

Corticobasal Ganglionic
Semantic Dementia**
bvFTD — Behavioral

Progressive Aphasia

Logopengic Variant

ALS with Dementia

named because it primarily affects the

Pick’s Disease**

PPA — Primary

Degeneration
Variant FTD**
frontal and temporal lobes. It is the most

FTD with
PSP**

PSP**
common dementia between the ages of
40-60. Sometimes referred to as Fronto-
Temporal Lobar Degeneration, the term
FTLD is the post mortem name.

Stage 1 — Normal Aging

Stage 2 — Typical First Signs and Early Depression Symptoms*
Alterations in alertness
Apathy
Slow withdrawal of emotional responses
Agitation
Bursts of anger
* Signs of disinterest
* Apathy not related to being sad
* Little insight into being sad
* No self awareness of changes in mood
* Increased irritability
* Poor concentration
* Lack of attention during interaction
* Sadness or negative mood
* Poor appetite or increased over eating
* Insomnia or hypersomnia
*** If sleeping more than 14 hours/day,
increased risk for infections and atrophied
muscles
Stage 3 — Early Stage Symptoms
Sudden interest in drinking x
Gradual loss of empathic response x x
Decreased insight into behavior x x
Shoplifting x x
Increase in weight — 40lbs in 6 months x x
Self-centered behavior x x
Tam Cumings, PhD - Dementia Association
The FrontoTemporal Dementia Symptoms and Staging Tool — FTD-SST, continued
Behavioral Communication Motor & Movement
FrontoTemporal Dementia
Personality & Language Disorder
Stages & Symptoms FTD FTD FTD
FrontoTemporal Dementia (FTD) is

ProSupra Nuclear Palsy

Motor Neuron Disease

Corticobasal Ganglionic
Semantic Dementia**
bvFTD — Behavioral

Progressive Aphasia

Logopengic Variant

ALS with Dementia

named because it primarily affects the

Pick’s Disease**

PPA — Primary

Degeneration
Variant FTD**
frontal and temporal lobes. It is the most

FTD with
PSP**

PSP**
common dementia between the ages of
40-60. Sometimes referred to as Fronto-
Temporal Lobar Degeneration, the term
FTLD is the post mortem name.

Stage 3 — Early Stage Symptoms

Uncaring behavior x x
Withdrawal from people and activities x x
Increase in spontaneous behavior, such
as inappropriate friendliness, speaking
candidly, revealing personal information
to strangers, becoming angry during x x x
routine tasks at job or at home, may
appear restless or irritable

Unusual eating habits, such as food

fixation (eating too much of a specific
food), great craving for sweets, sucking x x x
and chewing on objects (pens, combs,
spoons, etc.), hyper oral, shovel food

Ignores social etiquette and boundaries,

such as getting too close when speaking
to others, tendency to hug, touch, talk x x x
in inappropriate or intimate ways (new
behaviors for this person)

Displays poor judgment x x x x

Loss of facial empathy — masked face x x x
Decreased interest in spouse, children,
family x x x x x x x x x

Very mild short-term memory loss x x x x x x x x x

Personal hygiene changes x x x x x x x x x
Math skills good x x x x x x x x x
Visual ability good x x x x x x x x
Mild word-finding difficulty (anomia) x x x

Tam Cumings, PhD - Dementia Association

The FrontoTemporal Dementia Symptoms and Staging Tool — FTD-SST, continued
Behavioral Communication Motor & Movement
FrontoTemporal Dementia
Personality & Language Disorder
Stages & Symptoms FTD FTD FTD
FrontoTemporal Dementia (FTD) is

Motor Neuron Disease

ProSupra Nuclear Palsy

Corticobasal Ganglionic
Semantic Dementia**
bvFTD — Behavioral

Progressive Aphasia

ALS with Dementia

Logopengic Variant
named because it primarily affects the

Pick’s Disease**

PPA — Primary

Degeneration
Variant FTD**
frontal and temporal lobes. It is the most

FTD with
PSP**

PSP**
comon dementia between the ages of
40-60. Sometimes referred to as Fronto-
Temporal Lobar Degeneration, the term
FTLD is the post mortem name.

Apathetic appearance in whole body x x x x

Difficulty moving whole body
or parts of body x x x x

Struggles to form words (dysarthia) x x x x

Trembling limbs x
Balance problems x
Tipsy walking gait x
Exhibits doll’s eyes — an inability to
coordinate eye movements or aim the x
eye quickly up and down

Acalculia — difficulty with math x x

Stiff muscles in motion or when still x
Clumsy with one side of body
(asymmetrical decline) x

Stiffness in one arm, followed by stiffness

in one leg (paratonia) x

Alien hand movements — hand pushes

away other objects or other hand x

Magnetic hand — hand seems drawn to

other hand or other people’s hands x

Fasciculations
(muscle twitches or flutters) x

Muscle jerks x
Muscle cramps x
Loss of muscle tone x x

Tam Cumings, PhD - Dementia Association

The FrontoTemporal Dementia Symptoms and Staging Tool — FTD-SST, continued
Behavioral Communication Motor & Movement
FrontoTemporal Dementia
Personality & Language Disorder
Stages & Symptoms FTD FTD FTD
FrontoTemporal Dementia (FTD) is

ProSupra Nuclear Palsy

Corticobasal Ganglionic

Motor Neuron Disease

Semantic Dementia**
bvFTD — Behavioral

Progressive Aphasia

Logopengic Variant

ALS with Dementia

named because it primarily affects the

Pick’s Disease**

PPA — Primary

Degeneration
Variant FTD**
frontal and temporal lobes. It is the most

FTD with
PSP**
PSP**
common dementia between the ages of
40-60. Sometimes referred to as Fronto-
Temporal Lobar Degeneration, the term
FTLD is the post mortem name.

Increase in falls and falls with injury x x x x

Difficulty doing skilled hand movements
with one or both hands or arms (apraxia),
which may result in difficulty buttoning x x x x
shirt, turning book pages, shaving,
applying makeup, eating, writing, etc.

Stage 4 — Early Middle Stage

Judgement x x
Rational thought x x
Personality changes x x
Impulse control x x
Little concern about losses x x
Rapid Eye Movement Disorder (REMD)
— sleep disturbances x x

Thrashing, kicking, punching, striking out

while sleeping x x

Can read and write accurately x x x x

Loss or changes in executive function,
such as time management, attention
management, switch focus, plan and x x x
problem solve, integrate past experience
with present

Difficulty expressing words — nonfluent

asphasia
x

Incorrect grammar x x

Tam Cumings, PhD - Dementia Association

The FrontoTemporal Dementia Symptoms and Staging Tool — FTD-SST, continued
Behavioral Communication Motor & Movement
FrontoTemporal Dementia
Personality & Language Disorder
Stages & Symptoms FTD FTD FTD
FrontoTemporal Dementia (FTD) is

ProSupra Nuclear Palsy

Motor Neuron Disease

Corticobasal Ganglionic
Semantic Dementia**
bvFTD — Behavioral

Progressive Aphasia

Logopengic Variant

ALS with Dementia

named because it primarily affects the

Pick’s Disease**

PPA — Primary

Degeneration
Variant FTD**
frontal and temporal lobes. It is the most

FTD with
PSP**

PSP**
common dementia between the ages of
40-60. Sometimes referred to as Fronto-
Temporal Lobar Degeneration, the term
FTLD is the post mortem name.

Difficulty naming objects or recognizing

familiar words or faces x x

Performs ADLs x x x
Slow response to conversation x x x
Slow, weak, slurred, breathy, nasal
speech (dysarthia)
x x

Speaks at a normal rate — fluent aphasia,

but may be difficult to understand
x

Difficulty understanding speech of others x

Expresses appropriate emotions x
Slow rate of speech x
Can repeat short, single words x
Outbursts of laughing or crying x
Akinesia — absence or slowed movement x x
Bradykinesia — lack of spontaneous
movement
x

Shortness of breath due to weak muscles x x

Stage 5 — Late Middle Stage
Loss of insight
Repetition of behaviors
Memory problems x x
Severe cognitive deficits x x
Language skills function late x x

Tam Cumings, PhD - Dementia Association

The FrontoTemporal Dementia Symptoms and Staging Tool — FTD-SST, continued
Behavioral Communication Motor & Movement
FrontoTemporal Dementia
Personality & Language Disorder
Stages & Symptoms FTD FTD FTD
FrontoTemporal Dementia (FTD) is

ProSupra Nuclear Palsy

Semantic Dementia**

Motor Neuron Disease

Corticobasal Ganglionic
Progressive Aphasia
bvFTD — Behavioral

Logopengic Variant

ALS with Dementia

named because it primarily affects the

Pick’s Disease**

PPA — Primary

Degeneration
Variant FTD**
frontal and temporal lobes. It is the most

FTD with
PSP**

PSP**
common dementia between the ages of
40-60. Sometimes referred to as Fronto-
Temporal Lobar Degeneration, the term
FTLD is the post mortem name.

Visuospatial skills still functional x x

Great loss of affect — mask face x x x x x x x x x
Increased sleep for day and night x x x x x x x x x
Difficulty swallowing x x x x x x x x x
Urinary incontinence x x x x x x x x x
Severe loss of empathy x x x x x x x x x
Difficulty adjusting mood to situation x x x x x
Emotional ups and downs x x x
Hesitance and slowed speech x x x x x
Loss of language fluidity x x x
Mutism x x x
Decreased motor movement skills x x x x
Short-term memory loss x x x x
Muscle atrophy x x x x
Struggles to form words (dysarthia) x x
Abnormal posturing or frozen movements x x
Unaware of one side of body x
Inability to balance — sitting or walking x
Reflexes are overactive x
Stage 6 — Late Stage Symptoms
Short-term/long-term memory affected
May stay in constant motion, walks or
moves for hours

Tam Cumings, PhD - Dementia Association

The FrontoTemporal Dementia Symptoms and Staging Tool — FTD-SST, continued
Behavioral Communication Motor & Movement
FrontoTemporal Dementia
Personality & Language Disorder
Stages & Symptoms FTD FTD FTD
FrontoTemporal Dementia (FTD) is

ProSupra Nuclear Palsy

Motor Neuron Disease

Corticobasal Ganglionic
Semantic Dementia**
bvFTD — Behavioral

Progressive Aphasia

Logopengic Variant

ALS with Dementia

named because it primarily affects the

Pick’s Disease**

PPA — Primary

Degeneration
Variant FTD**
frontal and temporal lobes. It is the most

FTD with
PSP**

PSP**
common dementia between the ages of
40-60. Sometimes referred to as Fronto-
Temporal Lobar Degeneration, the term
FTLD is the post mortem name.

Disheveled appearance
Beginning of severe weight loss
Bowel incontinence begins
Can feed self at times
Great loss of language/mutism
Difficult to engage
Appears lost in own world
Loss of total facial affect — masked
Gait is greatly affected
Combative or aggressive behavior
Difficult to rehab
Disregards eyeglasses, hearing aids,
dentures

Stage 7 — End Stage Symptoms

Unable to sit erect

Unable to walk

Speech is lost

Unable to hold head erect

Extreme risk for falls

Extreme risk for skin breakdown

Semi-alert or asleep most of day

Loss of ability to chew and swallow food

properly

Tam Cumings, PhD - Dementia Association

The FrontoTemporal Dementia Symptoms and Staging Tool — FTD-SST, continued
Behavioral Communication Motor & Movement
FrontoTemporal Dementia
Personality & Language Disorder
Stages & Symptoms FTD FTD FTD
FrontoTemporal Dementia (FTD) is

ProSupra Nuclear Palsy

Motor Neuron Disease

Corticobasal Ganglionic
Semantic Dementia**
bvFTD — Behavioral

Progressive Aphasia

Logopengic Variant

ALS with Dementia

named because it primarily affects the

Pick’s Disease**

PPA — Primary

Degeneration
Variant FTD**
frontal and temporal lobes. It is the most

FTD with
PSP**

PSP**
common dementia between the ages of
40-60. Sometimes referred to as Fronto-
Temporal Lobar Degeneration, the term
FTLD is the post mortem name.

Disinterest in food or drink

Extreme weight loss
Total care for all ADLs
Loss of ability to smile — indicative that
death is near
** Some of the FTDs are recognized as tauopathy disease. Tau is a protein found in the brain’s cellular struc-
ture. Once tau begins to fold incorrectly in the cells, it disrupts and destroys the brain’s ability to function.
Alzheimer’s Disease is also a tauopathy. This probably h elps explain why persons with FTD eventually begin
to have many of the same late symptoms as persons with Alzheimer’s Disease.

Tam Cumings, PhD - Dementia Association