We Will Discuss. Dementia and Alzheimer s Disease Basics. Dementia. Developmental Disabilities and Dementia: A Behavior Management Guide

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1 10/18/ Dayna Thompson M.S., LMHC Alzheimer s Educator Developmental Disabilities and Dementia: A Behavior Management Guide Alzheimer s Resource Service IU Health Bloomington-Community Health or DThompson6@iuhealth.org October /18/ We Will Discuss. Dementia and Alzheimer s Disease Basics Stages and Symptoms of Alzheimer s Disease in Developmental Disabilities Responding to Behavioral Issues The Down Syndrome Alzheimer s Link Dementia and Alzheimer s Disease Basics 10/18/ /18/ Dementia Causes changes in: Memory Language Thought Behavior Mood 10/18/ /18/2013 6

2 Dementia Is NOT just normal forgetting. The normal adult forgets, remembers that she forgot, and later may remember what she forgot. An Alzheimer s patient forgets, forgets that she has forgotten.. Dan Blazer, MD Is the loss of abilities Interferes with daily life activities Characteristics of Alzheimer's Disease Gradual Onset Progressive, degenerative brain disease Death of nerve cells in brain (neurofibrillary tangles) Plaque formation in the brain Imbalance in neurotransmitters 10/18/ /18/ Who is Affected? 10% of people over age % of people over age 85. More than 5 million Americans More than $100 billion annually in the U.S. Stages and Symptoms Recognizing and responding to changes and causes for concern EVERYONE!! 10/18/ /18/ Intellectual Disabilities and Dementia In most cases, effects of dementia no different than in general population. Factors that signify a more rapid decline: Greater burden of psychotic symptoms Gait deterioration Down Syndrome diagnosis 10/18/ Pre-Diagnostic Find a baseline Get as much history as possible Look for early warning signs Sporadic memory lapses Losing ones way Confusion with familiar tasks Changes in behavior Changes in personality Refer for further assessment GOAL OF STAGE: Learn about what s normal and track changes. 10/18/

3 NTG-EDSD NTG-Early Detection Screen for Dementia Created by National Task Group on Intellectual Disabilities and Dementia Practices Adapted from Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) Not for diagnosis Suggested Action if Dementia is Indicated Educate family, roommates, staff and individual on dementia. Talk to the individual about the changes they are experiencing. Encouraged engagement and independence, as possible. Begin planning for possible future changes. 10/18/ /18/ Early Stage Typical Symptoms Memory loss that affects daily life Increased confusion Increased anxiety and or depression Lack of interest in previously enjoyable activities Communication difficulties Changes in executive function Early Stage Action Care considerations Safety or accessibility modifications Skill maintenance focus (as opposed to learning new skills) Emotional/spiritual support and encouragement Purposeful engagement Standardizing routines Increased use of non-verbal language and guessing Continue tracking changes GOAL OF STAGE: Encourage autonomy and modify tasks when appropriate. 10/18/ /18/ Moderate Stages Typical Symptoms Increased difficulty with memory (forgetting familiar people and places) Alternative Realities Disengagement or isolating Changes in Gait and Coordination Incontinence Changes in eating Restlessness Challenging behaviors (hoarding, shadowing, hallucinations, agitation, etc) Increased difficulties with communication 10/18/ Moderate Stage Action Care Considerations Safety precautions (increased supervision? equipment?) Self-Care Support Validation Communication with medical providers Continued modification of activities and environment Realistic expectations Start planning for long term services and supports GOAL OF STAGE: Connect do not correct! 10/18/

4 Late Stage Increased falls and/or seizures Loss of ambulation Difficulties with swallowing Respiratory/breathing problems Requires full care Loss of ability to communicate Incontinence Late Stage Action Care Considerations Increased focus on comfort Measures to calm and reassure Continue environmental modifications Inclusion of hospice/palliative care services GOAL OF STAGE: Comfort and Care. 10/18/ /18/ Responding to Behavioral Issues Be a detective, not a judge - Teepa Snow 10/18/ /18/ Common Behavioral Symptoms Repetitive Actions or Speech Wandering Agitation and Aggression Hoarding / Hiding Things Sleep problems Asking difficult questions Solve the Problem Ask yourself, So what? Enter their reality. DO NOT ARGUE OR CORRECT. Focus on feeling, not fact. Remove or redirect. Provide soothing activity or environment. 10/18/ /18/

5 Solve the Problem Change your behavior. Adjust your expectations. If at first you don t succeed..try, try again! Consider different housing arrangements. Considerations for Movement to Alternate Setting As a last resort Build in transition Minimize changes Consider facilities with similar routines 10/18/ /18/ Who gets Alzheimer s? The Down Syndrome Alzheimer s Link Onset in late 40s common Age ~25% Age ~ 75% Almost ALL individuals with Down Syndrome over 40 years old have significant amounts of Beta-amyloid plaques and neurofibrillary tangles, but not all develop Alzheimer s. Alzheimer s Disease Information Network (E News March 2013); Alvarez /18/ /18/ Why is it so prevalent in DS? Chromosome 21 Amyloid Precursor Protein (APP) gene Cognitive Reserve Hypothesis Acetylcholine Deficits Free radicals Common Pathway or different pathways with overlapping results? Alzheimer s Disease Information Network (E News March 2013); Alvarez /18/ Early Symptoms Reduced interest in social activity, conversing, or expressing thoughts Decreased enthusiasm for usual activities Decline in ability to pay attention Increased emotionality sadness, fear, anxiety, irritability Behavioral Changes uncooperativeness, aggression, noisiness/excitability Sleep disturbances Restlessness Late Onset Seizures Changes in walking/coordination Alvarez /18/

6 Diagnosis Document baseline function (by age 35) Watch for changes in day to day function Rule out other possible causes of symptoms Get a professional assessment The Indiana Alzheimer s Disease Center at the IU School of Medicine in Indianapolis is the most cutting edge and comprehensive center in this part of the Midwest. This is the best place for someone with Down syndrome or mental retardation to be assessed. Alvarez, /18/ Treatment Medical Medications No FDA approval specifically for treating AD in Down Syndrome Cholinesterase inhibitors Namenda Diet Antioxidants Alvarez, /18/ Treatment Environmental Decrease visual and auditory chaos Modify tasks/use adaptive equipment Think about safety Keep change to a minimum Behavioral Emphasize maintaining abilities Maintain a routine Simplify or break down tasks Reassure Enhance Communication /18/ Alvarez 2012 Where Can I Learn More and Get Support? Alzheimer s Resource Service Alzheimer s Association ; Alzheimer s Disease Education and Research Center ; 10/18/ Where Can I Learn More and Get Support? Indiana Area Agencies on Aging Down Syndrome Family Connection Questions? Indiana Alzheimer s Disease Center NTG s Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (April, 2013) 10/18/ /18/