Developing an Individualized
Dementia Program
November 9, 2014
Mountain Central Conference
Diane Dismukes, OTR
Learning Objectives
• Understand the Theory of Retrogenesis as it relates to Dementia
• Understand the stages of Dementia and how they relate to Allen
Cognitive Levels, Adapted FAST and Developmental Age
• Understand abilities and characteristic behaviors at each stage
• Understand the benefits of using objective assessments in
determining the current dementia stage.
• Understand the importance of obtaining and incorporating a patient’s
past occupational performance for meaningful treatment strategies.
• Understand how to develop a FMP as part of caregiver education
• Will be able to develop objective and meaningful goals and
documentation of skilled therapy
Understanding Dementia
Dementia:
A general term that describes a group of symptoms-such as
loss of memory, judgment, language, complex motor skill, and
other intellectual function-caused by the permanent damage
or death of the brain’s neurons.
• Alzheimer’s Disease is the most common cause of
dementia, representing 60% of all dementias
• The next most common cause of dementia is vascular
dementia
Alzheimer’s Prevalence
• 5.1 Million Americans
• It is estimated that about a half million Americans younger
than age 65 have some form of dementia, including
Alzheimer’s Disease.
• It is estimated that one to four family members act as a
caregiver for each individual with Alzheimer’s disease.
Theory of Retrogenesis
“The process by which degenerative mechanisms reverse in
the order of acquisition in normal development”.
– Dr. Barry Reisburg
This a reverse developmental theory. Retrogenesis literally
means “back to birth”.
The research on Retrogenesis led to the development of the
FAST tool and Adapted FAST for staging Alzheimer’s with a
correlation to developmental ages.
General Pattern of Degeneration
• Hippocampus: Integral area for memory formation
• Amygdala: Controls primitive emotions, fear, anger, and
cravings
• Temporal Lobes: Organization of sensory input and for
processing language
• Parietal Lobes: Awareness of touch, vibration, spatial
awareness. Ability to recognize objects by physical
contact.
• Frontal Lobes: Assist in Retrieval of early formed
memories and self- identity
Dementia Staging Comparisons
General Summary of Comparison between Scales
Dementia
Stage
ACL Levels
Development
Age
Adapted Fast
Scale
GDS
End Stage
1.0 – 1.8
0-12 months
8
7
Late Stage
2.0 – 2.8
9-23 months
7
7
Middle Stage
3.0 -3.4
3.6 – 3.8
3.8
4.0 -4.4
4.6 – 4.8
5.0 – 5.2
5.4 – 5.6
18-24 months
2-3 years
6 de
6 abc
6
6
4-6 years
6-7 years
7-13 years
14-17 years
5
4
3
2
5
4
3
2
5.8 – 6.0
18-21 years
1
1
Early Stage
Mild
Cognitive
Impairment
Normal
Dementia Stage Characteristics
Mild Cognitive Impairment
ACL 5 / Adapted FAST 2-3
Developmental Age: Teenager
• Memory Lapses: Forgetting familiar words/names, location of keys
• Difficulty with Memory, Concentration, Planning & Organization
• Doesn’t always understand the effects of own actions
on others
• Decreased performance in work and social settings
• Trial and Error Reasoning Skills
Dementia Stage Characteristics
Early Stage Dementia
ACL 4 / Adapted FAST 4 -5
• Decreased knowledge of recent occasions or current events
• Can learn a new activity if meaningful and with repetition
• Difficulty with performing complex tasks such as planning a dinner,
paying bills, managing finances
• Optimal performance with structure and familiarity (i.e. memory
books, schedules)
• Unaware of safety hazards
• Conversationally verbal; but has hesitancy in finding words
• Time/Place Disorientation (especially in new environments)
• Can become anxious easily
Treatment Considerations
General Treatment Considerations for ACL 4:
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Need Consistency/ Structure with routine
Structure the environment to make them safer (Compensate for cognitive
deficit)
– Arrange for assist with meal planning, meal prep
– Use of pill boxes or bubble cards for medication
– Initiate use of grab bars, tub benches, walker
– Remove unsteady furniture, provide automatic night lights
Establish lists, schedules, and memory devices
Train to prevent falls, use of assistive devices now
Add value and meaningful activities to enhance learning
Review of Environment: Is it over or under stimulating?
Family/Caregiver Education
Dementia Stage Characteristics
High Level ACL 4 (4.6 – 4.8)
• May be able to live alone with support
• Can complete self-care tasks and familiar IADL’s
• Can learn a new activity if valued and repetition is
provided
• Can communicate needs and engage in conversation
(topics may be self-centered)
• Likes autonomy
• Difficulty learning a new activity that is not valued
Dementia Stage Characteristics
Low Level ACL 4 (4.0 – 4.4)
• Can complete self-care tasks, quality may be impaired
(i.e. May have “bed head” from combing hair only the
front of hair)
• Can follow simple directions, responds best with a slow
demonstration
• Able to learn how to use a new device that is similar in
nature to a familiar device (i.e. built up handled spoon)
• Able to understand and play simple games & takes turns
Dementia Stage Characteristics
Middle Stage Dementia
ACL 3 / Adapted FAST 6
• Severely impaired memory of recent events
• Will need some level of cognitive or physical assist with
ADL’s
• Repetitive physical movements
• Cognitive Tunnel Vision / Visual Agnosia
• Their perceptions are reality
• Requires cuing to sequence a task
• One minute attention span
Treatment Considerations
• Behaviors may become an increasing issue: Understand behaviors
are a result of an unmet need:
– At this stage, often related to inappropriate cues or a task that is
too difficult
– Sensory Environment is often over stimulating
• Rehab Dining: Prevention of weight loss related to decreased
attention to task, visual agnosia, and cognitive tunnel vision
• Grooming/Dressing: Maintaining physical ability to perform task; will
need items set out in visual field and assist with sequencing
• Offer one step directions and allow 15-30 seconds for a response
• Cuing will typically be focused on sequencing of task, attention to
task
• Increased focus on staff training for FMP
Dementia Stage Characteristics
High Level ACL 3/ Adapted FAST 6 a,b,c
• Requires consistent assistance to locate unfamiliar rooms
and locations; although able to learn the new locations
• Able to complete self care activities with cues
• Can relearn familiar task; but requires consistent repetition
for up to 3 weeks per step
• Can read words, talks in short sentences/phrases
• Can initiate a familiar activity when supplies are visible and
within reach
• Can follow simple verbal instructions, given slowly
Dementia Stage Characteristics
Low Level ACL 3/ Adapted FAST 6d,e
• Cognitive Tunnel Vision: Can only see about 12-14 inches
in front of them
• Visual Agnosia
• Able to manipulate object, although may be clumsy
• Able to feel and name familiar objects
• Able to be sequenced through basic ADLs, with verbal and
tactile cuing
• Communicates in short sentences or phrases
• Cuing to continue task, shortened attention span
• Can sing, move to music, and count
Dementia Stage Characteristics
Late Stage Dementia
ACL 2/ Adapted FAST 7
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Has ability to stand/walk, sit unsupported
Make take 2-3 times longer to process
Focused on Postural Actions: May rock, fear of falling, posterior weight shift
If walking, fall risk due to being unsteady, confused by floor contrast and
pattern
Will often “follow” once in visual field
Increased difficulty communicating needs, 1-6 words
May disrobe due to somatic issues
Incontinent
Grabs onto items/bars for support “Death Grip”
Treatment Considerations
• Focus on staff training for methods to cue resident using visual,
tactile, verbal and kinesthetic cueing to increase ability of patient to
assist with mobility/ADL tasks
• Postural Security: Encourage bending at waist, reciprocal
movements, proprioceptive cues during movement
• Prevention of falls, positioning issues, combativeness, contracture
formation as mobility declines
• Provide simple communication slowly, waiting 15-30 seconds for a
response
• Provide items to be attended to within 14 inches from eye level
• Sensory Stimulation: At this stage, weighted blankets and
increased deep pressure and joint compression increase
postural security
Dementia Stage Characteristics
End Stage Dementia
ADL Level 1 / Adapted FAST Level 8
• Communication is usually limited to grunts, crying out, or
with one word.
• Loses ability to sit up independently and progresses to
difficulty holding head up
• Swallowing mechanism is impaired
• Able to respond to sensory stimulation
• Can turn head and follow stimulus with eyes
Treatment Interventions
• Positioning
• Contracture Management
• Caregiver Training in Sensory Stimulation: Aroma Therapy,
Music, Movement, Massage
Assessment
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Functional Assessment Staging (FAST) or Adapted FAST
Allen Leather Screen
Allen Diagnostic Modules: i.e. Placemat
Routine Task Inventory (RTI)
Occupational Performance
Global Deterioration Scale (GDS)
Montreal Cognitive Assessment (MOCA)
Functional Assessment Staging- FAST/
Adapted FAST
• Correlates to the GDS and ADL Activities
• Correlates to developmental ages
• Adapted FAST by Kim Warchol defines stages in the
context of the Allen Cognitive Levels and is an 8 vs. 7 point
scale
• Easy to administer based on observation of client and/or
reliable caregiver interview
Allen Leather Screen (ACLS & LACLS)
• Can assess for ACLS level 3-6
• A small and large version are available
• Video resources to train in it’s administration
– http://allencognitivelevelscreen.org/index.html
• Correlates to a Functional Cognitive Level
• Can be used for psychiatric and dementia population
• Cost: $60 for the Kit and ~$70 for Manual
Allen Diagnostic Module: Placemat
Test
• Screening tool for ACL Level 3-4.6
• Non-threatening and easy to set up
• Cost: Approximately $40-45
Routine Task Inventory (RTI-E)
• Developed by Naomi Katz, based on Allen
• Free and available online
– http://www.allen-cognitive-network.org/index.php/allencognitive-model/routine-task-inventory-expanded-rti-e
• Can use a combination of self report, caregiver report,
therapist observation of client
Occupational Performance Profile
• Free and interview based
• May need to interview family/caregivers
An occupational profile is defined in the Practice Framework (AOTA,
2002) as information that describes the client's occupational history and
experiences, patterns of daily living, interests, values and needs.
• An occupational history that lists previous patterns of engagement in
occupation and meaning of these to the client
• Especially with the cognitively impaired patient, understanding
interest and value improves functional performance
Global Deterioration Scale (GDS)
• Free and based on Observation
• Only used for degenerative cognitive diagnosis
• Closely relates to FAST Scoring and theory of Retrogenesis
Montreal Cognitive Assessment
(MoCA)
• Free, online and only takes 10-15 minutes
– http://www.mocatest.org/
• Available in multiple languages
• Purpose is designed to assist Health Professionals for
detection of mild cognitive impairment
• High Validity for Mild Cognitive Impairment
Medicare Coverage Guidelines
(IOM 100-2: Chapters 7,8,15)
Medicare Skilled Therapy Guidelines:
• Skilled therapy service is when the inherent complexity of
the service is such that it can be performed safely and/or
effectively on by or under the general supervision of a
skilled therapist.
• Services provided with expectation…that the patient will
improve materially in a reasonable and generally
predictable period of time, OR the services must be
necessary for the establishment of a safe and effective
maintenance program
Medicare Coverage Guidelines (IOM
(100-2: Chapters 7,8, 15)
• Teaching and Training a patient or caregiver in a treatment
regimen
• Reasonable and necessary to the treatment of the patient’s
illness or injury or to the restoration or maintenance of
function affected by the patient’s illness or injury
• While a particular medical condition is a valid factor in
deciding if skilled therapy services are needed, a patient’s
diagnosis or prognosis should never be the sole factor in
deciding that a service is or is not skilled. The key issue is
whether the skills of a therapist are needed to treat the
illness or injury, or whether the services can be
carried out by unskilled personnel.
Jimmo v Sebelius Settlement
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Landmark settlement in which the plaintiffs alleged that Medicare
contractor were inappropriately applying an “Improvement Standard” in
making claim determinations.
Settlement sets forth a series of steps for CMS to clarify and educate
regarding benefit coverage, specifically stating that the beneficiary’s
lack of restoration potential cannot, in itself, serve as the basis of
denying coverage, without regard to an individualized assessment of
the beneficiary’s medical condition and the reasonableness and
necessity of the treatment, care or service in question. Conversely,
coverage in this context would not be available in a situation where the
beneficiary’s care needs can be addressed safely and effectively
through the use of nonskilled personnel
Claims must contain sufficient documentation to substantiate
clearly that skilled care is required.
Documenting Skilled Therapy Needs
Diagnosis / Medical History: Indicate the Dementia Dx
Reason for Referral/Skilled Care: Indicate the recent decline
and that is expected to improve related to an acute
illness/episode or an exacerbation of another co-morbidity (i.e.
OA, CVA, fracture)
OR, if for a FMP: Note that the patient is of such a complex
nature that the staff/family are unable to identify the remaining
ability and/or adapt the activity level of the resident without the
skills of a therapist to improve functional skills and/or safety.
Documenting Skilled Therapy Needs
Cognitive Assessment: Utilize an assessment that can
indicate the patient’s current stage of dementia.
*Note: Encourage the use of a system that can share
that information with others on the team and can track
a patient’s cognitive level.
Prior Level of Function: Include PLOF for noted areas of
decline, changes in cognitive level, changes in incidents of
maladaptive behaviors.
Documenting Skilled Therapy Needs
Goals: Objective and Measurable, consider adding % of
cognitive assist/cues, and task adaptations
Understanding the abilities of your patient for each cognitive
level is instrumental in establishing appropriate goals. Also,
understanding if changes in cognitive level are expected due
to acute illness/injury.
Many of your goals may be similar to what you currently utilize
such as:
• Patient will feed self with minimal assistance with use of
contrasting bowls/plates.
Sample Goals /Skilled Interventions by
Level
ACL 5/ Adapted FAST 2-3:
Goal: Patient will manage medication administration with
weekly medication tracking box and 100% accuracy.
Patient will be independent with donning socks with the
use of a sock aid.
Skilled Interventions: IADL Retraining with task adaptations,
organizational and planning training, adaptive
equipment training
Sample Goals/ Skilled Interventions by
Level
ACL Level 4/ Adapted FAST 4-5
Goals: Patient will safely toilet self with use of RW with
Modified Independence.
Patient will brush the back of their head 75% of time
with use of external cues.
Skilled Interventions: ADL Retraining, assessment of
appropriate cuing techniques for learning of a new adapted
device, training in external memory cues
Sample Goals / Skilled Interventions by
Level
ACL Level 3 / Adapted FAST 6
Goals: Patient will feed self with minimal assist with caregiver
assist for set up and cuing.
Patient will follow 1-step familiar commands related to
grooming 75% of time with minimal verbal cues to
maximize ADL function.
Patient will decrease episodes of refusal and aggression
during bathing to 25% of time with caregiver staff.
Skilled Interventions: ADL retraining including altering procedures,
analyzing and modifying functional tasks, graded tactilekinesthetic and verbal cues, caregiver training
Sample Goals/ Skilled Interventions by
Level
ACL Level 2 / Adapted FAST 7
Goals: Patient will achieve G- sitting balance during ADLs,
to decrease fall risk and improve ADL performance.
Patient will drink from a cup 75% of time when
placed in hand to initiate task.
Skilled Interventions: Dynamic Balance retraining,
development of FMP to facilitate movement, ADL training
with a adapted technique, caregiver training
Sample Goals/ Skilled Interventions by
Level
ACL Level 1 / Adapted FAST 7-8
Goal: Patient will turn head right and left when presented
with a sensory stimulation to prevent further
contractures.
Patient will achieve and maintain anatomically correct
position for 2 hours in wheelchair with use of
positioning devices in order to increase socialization
and safety during mealtimes.
Skilled Interventions: sensory stimulation to facilitate
head/neck AROM, Seating system modification to
facilitate safety and decrease restraint use
Functional Maintenance Program
Therapy Goal: Desired performance with use of caregiver
Therapy Intervention: Caregiver training in specific
techniques (should identify the technique..i.e.: present one
bowl of food at a time). Document percentage of return
demonstration, caregiver trained, barriers
The FMP should specify:
• Functional Goal in layman terms
• Specific Approaches/Recommendations
• Who is responsible? RNA, CNA, All Nursing Staff,
Activities