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Dementia Wellness Program Stacy McLaughlin, M.A. CCC-SLP Laura Lagala, M.A. CCC-SLP Kessler Institute for Rehabilitation West Orange, New Jersey Chester, New Jersey Disclosure Statement We have no relevant financial or nonfinancial relationships in the products or services described, reviewed, evaluated or compared in this presentation. Objectives Learn the frequently treated types of Dementia and a general background of Dementia Learn what a Neuropsychological Evaluation assesses specific to the dementia program Learn the stages of Dementia and the reasons for staging patients Understand referral guidelines for outpatient dementia program Objectives (cont’d) Learn how to set appropriate goals for Dementia treatment Learn 5 evidence-based treatment approaches for Dementia Learn specific assessments for Dementia Learn how to apply a multidisciplinary approach to treatment of dementia Objectives (cont’d) Understand barriers to treatment Learn common treatment codes used Learn whom to network with in your community Learn resources to use in treatment Why institute the Dementia Wellness Program? Traditionally, treatment of dementia scarce especially at the outpatient level In the case of most progressive dementias, including Alzheimer's disease, there is no cure and no treatment that slows or stops its progression Therefore, therapy seen as unnecessary and nonreimbursable The Dementia Wellness Program does not aim to slow or stop the progression of dementia, but rather improves quality of life for clients and caregivers through education and evidence-based therapeutic techniques to support cognition, communication, completion of ADLs, behavior management and social abilities. What is Dementia? Dementia is a general term for a decline in mental ability severe enough to interfere with daily life and is progressive in nature Alzheimer's is the most common type of dementia, as it accounts for 60-80% of cases While symptoms of dementia can vary greatly, at least two of the following core mental functions must be significantly impaired to be considered dementia: Memory Communication and language Ability to focus and pay attention Reasoning and judgment Visual perception Other conditions can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies. Normal aging vs. Dementia Typical Aging: Dementia: Independent for ADL’s Dependent for ADL’s Complaints of memory loss, but can recall forgetfulness Unable to recall forgetfulness though others can Recent memory intact Decline in recent memory Occasional word-finding difficulties Frequent word-finding difficulties Will not get lost in familiar areas Gets lost in familiar areas Maintains social skills & enjoys socialization Loss of interest in socialization Normal performance on cognitive testing Decline in performance on cognitive testing Frequently Treated Disorders Dementia of the Alzheimer’s Type (DAT) Vascular Dementia Dementia with Lewy Body Frontotemporal Dementia Parkinson’s Dementia Mild Cognitive Impairment Getting Started Suspected candidates undergo Neuropsychological Evaluation (NPE) Candidates are staged according to the Global Deterioration Scale and attend Feedback Session with Neuropsychologist For community based referrals, neuropsychologist completes Diagnostic Interview and staging. Candidacy for Dementia Wellness Program determined at this time Neuropsychological Evaluation Orientation, attention, working memory, processing speed, visuospatial skills, language, memory, executive functioning and emotional functioning are assessed Spared abilities are identified to direct treatment Functional assessment of ADL’s are examined to differentiate MCI versus Dementia (e.g. Independent Living Scales) If patient staged at or less than 5, may be referred to Dementia Program. Patients staged at or above stage 6, will be referred to community/home-based alternative services. What is Staging and Why? Refers to how far a patient’s dementia has progressed Lower stages = less impairment Allows for determining best treatment approaches Aides in communication between health care providers and caregivers Specific staging tools: Global Deterioration Scale (GDS) or Reisberg Scale www.dementiacarecentral.com/node/540 Staging Stage 1: No cognitive decline Stage 2: Very mild decline Stage 3: Mild decline Stage 4: Moderate decline Stage 5: Moderate-severe decline Stage 6: Severe decline Stage 7: Very severe decline Not necessary to have NPE for staging; Any therapist (PT, OT, ST) can stage Referral Guidelines Admissions determined on case-by-case basis Must have diagnosis of dementia or mildcognitive impairment (MCI) as determined by NPE Must have impairment of memory and at least one other cognitive domain WHICH represents a decline from previous level of functioning Must be staged as mild-moderate dementia (staging must be equal or less than 5) Must have ability to engage in personal hygiene independently or have personal aide Referral Guidelines (cont’d) Medically stable Free of substance abuse Free of physically abusive/combative behaviors within the last 3 months Possess some ability for learning, socializing and communicating Functional visual and auditory abilities Program Overview Initial Evaluation + 4 weeks of treatment Frequency of treatment determined at IE. Can be up to 2 times/week per discipline if warranted Family involvement required. Frequency of caregiver attendance depends on results of DI/NPE and level of impairment. Patients with MCI may have less family involvement. Goal Setting Goals are based on patients spared abilities in context of identified stage Goals related to functional outcomes Skilled, measurable, attainable, reasonable and medically necessary Goals related to one of the following areas: mobility, activities of daily living, communication, socialization, behavior, or dysphagia Evidenced-Based Interventions for Dementia Sensory Therapy Reminiscence Therapy Validation Therapy Spaced Retrieval Montessori Therapy Sensory Therapy Can be utilized at all stages Involves the patient’s sense of touch, taste, hearing, smell or sight, or some combination Interventions can include music therapy, aroma therapy, light therapy, pet therapy, recreational activities, exercises, sweet foods Reminiscence Therapy Utilized with stages 4-6 Involves collections of memories from the past Highly beneficial to patient’s inner self, communication and interpersonal skills Interventions can be visual (photographs), music, smell/taste, tactile (painting, pottery) Michelle S. Bourgeois, Ph.D., CCC-SLP is a leading researcher in this area and has published various works relating to reminiscence as well as memory aids (http://www.michellebourgeois.com) Validation Therapy Can be utilized for all stages Involves communicating with dementia patients by validating and respecting their feelings; this is done for whatever timeframe the patient’s reality is in, not the here and now, not your reality Option for managing outbursts and negative behaviors Brings about increased communication, decreased anxiety, less overt acting out, improved socialization, improved facial expressions, and increased smiling and eye contact Spaced Retrieval Utilized for patients with spared procedural memory per evaluation Stimulus -> Response -> Reinforcement Slowly increase the interval between correct recall of target items using errorless learning Uses spared abilities and repetitive training for recall; most effective for specific information (e.g., room number, where the bathroom is located, making a safe transfer, inserting a hearing aid) Montessori Therapy Utilized with stages 4-6 Diminishes/eliminates problematic behaviors (e.g., wandering, hitting, repetitive questioning) by providing stimulating, meaningful activities Connects past interests or skills with the present spared skills and needs of intervention; purpose is to maintain or improve existing skills. Occupational Therapy within Dementia Wellness Program Initial Evaluation Conducted Assessments administered MoCA, SLUMS, Brief Cognitive Rating Scale, GDS, Memory Strategy Repertoire Questionnaire Assess basic and instrumental ADLs Identify spared skills, cognitive strengths and deficits, behavioral issues via staging tool Determine level of support and supervision via home assessment measures (e.g., Caregiver Burden Scale, Safety Assessment Scale) Can assign cognitive HEP (e.g. website) OT: Week 1 Safety, Judgment and Behavior management Provide education about Dementia/MCI regarding changes in judgment and denial of symptoms/hiding problems Review General Principles of Safety Identify specific safety needs and strategies Discuss common behavioral issues and strategies Provide patient and family member resources such as Helpline, MedicAlert, Safe Return Home, etc. OT: Week 2 Daily Schedule and Activities Discuss need for structure and routine Establish a daily routine Integrate home chores, hobbies, interest, volunteering Memory strategies for daily life Review strategies to enhance memory (internal & external) Internal – visualization, association, chunking (appropriate for early stages or MCI) External – calendar, planner, journal, activity-specific OT: Week 3 Environmental Modifications Strategies for ADLs Define environmental modifications Review modifications for the home to enhance functioning Identify strategies to assist with handling BADLs and IADLs Discuss need for more support, supervision or relinquish of responsibility with ADLs Review Functional Maintenance Plan for patient and caregiver to use at home OT: Week 4 Health and Wellness Review stress management techniques and resources for caregiver and patient Review brain healthy tips such as proper diet, hydration, sleep and fatigue management Social activity involvement Physical exercise routine Common brain foods Cognitive HEP Speech Therapy within Dementia Wellness Program Initial Evaluation Conducted Assessments administered MoCA; SLUMS; Brief Cognitive Rating Scale; GDS; Function, Reason, Orientation, Memory, Arithmetic, Judgment and Emotional Status (FROMAJE); Arizona Battery for Communication Disorders of Dementia (ABCD); Functional Linguistic Communication Inventory (FLCI); SET test Identify spared skills, cognitive strengths and deficits, behavioral issues Obtain information regarding patient interests, communication skills, social activities, caregiver interaction, any swallowing activities Can assign appropriate HEP (e.g. websites) ST: Week 1 Education on Dementia – diagnosis, symptoms, stages, treatment Review goals with patient and caregiver Education on validation therapy and practice with caregiver and patient Education on communication breakdown analysis form and issued for HEP ST: Week 2 Education on strategies caregivers can use to improve patient’s verbal expression and practice with caregiver and patient Education on strategies caregivers can use to improve patient’s listening and comprehension and practice with caregiver and patient ST: Week 3 Reminiscence therapy via education on memory book/wallet Determine font size suitable for patient to read and language complexity for memory book Provide memory book templates and have caregiver practice making pages with patient for HEP Behavior management strategy education (e.g. communication breakdown analysis form) ST: Week 4 Spaced retrieval and Errorless Learning education and practice Reading strategies Review Functional Maintenance Plan for patient and caregiver to use at home OT/ST Therapy Schedule Please note schedules are flexible Schedule will be determined by client and caregiver needs Therapist, based upon his/her clinical judgment, may see it necessary to extend overall treatment time to fully educate and train patient and caregiver Barriers to Treatment Limited insight/awareness Client and family denial of diagnosis Level of impairment in memory abilities Pre-morbid level of functioning Pre-morbid use of strategies and level of organization Family dynamics and communication Lack of caregiver attendance or involvement Limited resources and support Reimbursement ICD-9 Codes Additional Codes if applicable 331.0 Alzheimer’s Disease 331.83 Mild Cognitive Impairment 331.82 Dementia with Lewy Bodies 331.19 Frontotemporal Dementia NEC 799.52 Cognitive-communication deficit 780.93 Memory Loss 799.59 Cognition signs/symptoms NEC 784.3 Aphasia 799.55 Frontal Lobe Deficits CPT Codes 97532 Cognitive Skills Development 92606 Therapeutic Services for non-speech generating device (e.g., memory book) Case Study - JK 65 year-old male diagnosed with Frontotemporal Dementia during NPE after experiencing significant behavioral changes Referred for NPE by Neurologist Was a full-time estate & trust lawyer with his own private practice in NYC Living in an assisted living facility during the week while wife worked and would go home on weekends when family could supervise him Significant family history: patient’s mother had dementia JK (cont’d) Symptoms/presentation: Very impulsive Was walking 24x7, could not stop. Placed on medication which discontinued this behavior. No awareness of cognitive or personality changes Poor topic maintenance, verbose and tangential Poor reasoning Frequent inappropriate comments Personality changes: pre-morbidly was reserved, now talked to strangers and “overly friendly and helpful.” JK (cont’d) Reading, writing, and arithmetic skills had decreased Poor attention Verbally repetitive behavior (e.g. telling same stories over and over) Patient was fixated on sweet foods Patient’s wife noted to correct pt frequently, which resulted in behavioral outbursts by pt. Wife stated she was overwhelmed. Patient’s interests: 60s music, reading novels, work, going for walks, dancing, spending time with family & friends Patient perseverated on going back to work in NYC JK - Testing ABCD and BCRS administered ABCD results revealed deficits in: Orientation (Mental Status subtest = 10/13), Immediate and Delayed memory (Story telling: immediate = 8/17, delayed = 10/17), Reading (Reading Comprehension: Word = 7/8, Sentence = 6/7), Fluency (Generative naming = 6 with multiple perseverations) BCRS = 18 which correlates to GDS of 3.6 (Mild to moderate severity) JK - Goals OT Goals: Patient and caregiver will identify current home safety issues and apply at least 1-2 strategies for each problem area with minimal assistance. Caregiver will identify triggers for current behavioral issues and apply at least 1-2 new techniques to manage behaviors with minimal cues. Patient and caregiver will identify and apply strategies for promoting safety and independence with ADLs (e.g. preparing coffee, taking medication, routine tasks) with minimal assistance. Patient will learn and apply at least 1 new cognitive HEP with set up from caregiver 20 minutes/2-3 x per week. Patient and caregiver will identify 1-2 areas for improvement re: health and wellness and apply at least 1-2 new techniques with minimal assistance. JK - Goals ST Goals: Patient and caregiver will learn about Frontotemporal Dementia and caregiver will answer comprehension questions with 80% accuracy and minimal cues. Patient and caregiver will learn validation treatment and caregiver will demonstrate use with 80% accuracy and minmoderate cues. Patient and caregiver will learn compensatory reading strategies to improve patient’s functional reading skills and will utilize 1-2 strategies with 80% accuracy and minmoderate cues for functional reading (e.g. newspaper) Patient and caregiver will learn compensatory strategies to use to improve patient’s auditory attention, comprehension, and retention skills and utilize 2-3 strategies in structured practice with 80% accuracy and min-moderate cues Patient and caregiver will learn compensatory strategies to use to improve patient’s verbal expression skills and utilize 23 strategies in structured practice with 80% accuracy and min-moderate cues. JK - Treatment Patient’s wife was required to attend all treatment sessions for caregiver training/education Treatment was 4 hours per week for 4 weeks (2 hours with ST, 2 hours with OT) Patient was engaged in session and participatory. He enjoyed reading aloud handouts on information given in treatment sessions but comprehension of material read was poor JK - Outcomes Education on FTD & Validation therapy (using FOCUSED approach) significantly improved caregiver’s interactions with patient. Reported no more behavioral outbursts at home and increased functioning with ADLs. Used validation technique to set up a home office for the patient to “work” on mock tasks, which decreased his perseveration with returning to work in NYC Education on how to make a memory book. Patient chose pages relevant to him from templates. Patient’s clarity of verbal expression increased during exercise. Caregiver used communication strategies with minimal cues, which increased patient’s comprehension and attention skills. JK – Outcomes (cont’d) Patient read adapted newspaper articles with 80% accuracy and minimal cues for immediate comprehension of material read Functional Maintenance Plan made that included activities such as cleaning, listening to favorite music (e.g. Ray Orbison), walking, and completing home office assignments that his daughter (a lawyer) would send him to “work” on Patient’s wife reported the patient wrote thank you notes independently for when he was in the hospital and mailed them Patient transitioned to living at home full time and attending a day program a couple of times a week for activities he enjoyed (e.g. dancing, socializing) Community Resources/References Important for clinicians to be aware of local and national resources for patients and caregivers Network with: therapists, neurologists, geriatricians, geriatric psychiatrists, geropsychologists, case managers, Neurologists Network with: Support groups, home health agencies, adult day care centers, assisted living facilities Community Resources/References Alzheimer's Association Works on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and related dementias Provides early stage resources (e.g., clinical drug trials, early stage care consultation, welcoming series support group, internet message boards) Provides middle/late stage resources (e.g., caregiver training/support groups, residential care option education Provides 24/7 helpline 1-800-272-3900 http://www.alz.org Community Resources/References Consultants in Dementia Therapy Developed and led by Peggy Watson M.S., CCC-SLP and Nancy Shadowens M.S., CCC-SLP Goal is to bring knowledge based in practice utilizing evidence-based interventions, modeled on simple step-by-step protocols that have proven successful Provide guidance to at-home caregivers, therapists, medical professionals and all those who work with people with dementia Dementia: Loving Care with a Therapeutic Benefit Dementia Therapy & Program Development http://consultantsindementiatherapy.com/ Community Resources/References • • Michelle S. Bourgeois, Ph.D., CCC-SLP is a Professor in the Department of Speech & Hearing Science, Ohio State University. Received numerous grants from the National Institutes of Aging (NIA) and the Alzheimer’s Association to • • • explore interventions for caregivers designed to improve the quality and quantity of communicative interactions with residents with dementia evaluate memory aids and interventions for persons with dementia develop training programs for caregivers Some of her works include • • • • Dementia: From diagnosis to management—A functional approach (2009) Memory Books and Other Graphic Cuing Systems (2007) Augmentative and Alternative Communication Strategies and Tools for Persons with Dementia (ASHA Leader, 2010) http://www.michellebourgeois.com/ Additional Resources Validation Therapy: The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's and Other Dementias, Third Edition by Naomi Feil Spaced Retrieval: A Therapy Technique for Improving Memory: SPACED RETRIEVAL by Jennifer A. Brush & Cameron J. Camp, Ph.D. Additional Resources Montessori Therapy: Can Do Activities for Adults with Alzheimer’s Disease: Strength Based Communication and Programming by Eileen Eisner Montessori-Based Activities for Persons with Dementia by Cameron J. Camp, Ph.D. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss, 5th edition by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H The Source for Alzheimer’s & Dementia by Pam Britton Reese Any questions? Feel free to contact us! Stacy McLaughlin, M.A. CCC-SLP Kessler Institute for Rehabilitation West Orange, New Jersey [email protected] Laura Lagala, M.A. CCC-SLP Kessler Institute for Rehabilitation Chester, New Jersey [email protected]