Developing an Individualized Dementia Program November 9, 2014 Mountain Central Conference Diane...

Developing an Individualized Dementia Program

November 9, 2014Mountain Central Conference

Diane Dismukes, OTRTodd Novosad, 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 ScalesDementia

StageACL Levels Development

AgeAdapted Fast

ScaleGDS

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 18-24 months 6 de 63.6 – 3.83.8

2-3 years 6 abc 6

Early Stage

4.0 -4.4 4-6 years 5 54.6 – 4.8 6-7 years 4 4

Mild Cognitive Impairment

5.0 – 5.2 7-13 years 3 35.4 – 5.6 14-17 years 2 2

Normal 5.8 – 6.0

18-21 years 1 1

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


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:•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


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


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


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


• 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


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


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


Late Stage Dementia

ACL 2/ Adapted FAST 7•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”


• 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


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

• 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

http://allencognitivelevelscreen.org/index.html

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/allen-cognitive-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

• 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.


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.


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 6Goals: 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 tactile- kinesthetic and verbal cues, caregiver training


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


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

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