10/18/2013 1 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 812-353-9299 or DThompson6@iuhealth.org October 2013 10/18/2013 2 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 10/18/2013 3 10/18/2013 4 Dementia Causes changes in: Memory Language Thought Behavior Mood 10/18/2013 5 10/18/2013 6
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 10/18/2013 7 10/18/2013 8 Who is Affected? 10% of people over age 65. 50% 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!! 10/18/2013 9 10/18/2013 10 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 10/18/2013 11 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. 10/18/2013 12
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 www.aadmd.org/ntg/screening 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. 10/18/2013 13 10/18/2013 14 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. 10/18/2013 15 10/18/2013 16 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 10/18/2013 17 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! 10/18/2013 18
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. 10/18/2013 19 10/18/2013 20 Responding to Behavioral Issues Be a detective, not a judge - Teepa Snow 10/18/2013 21 10/18/2013 22 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. 10/18/2013 23 10/18/2013 24
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 10/18/2013 25 10/18/2013 26 Who gets Alzheimer s? The Down Syndrome Alzheimer s Link Onset in late 40s common Age 35-40 ~25% Age 65-70 ~ 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. www.ndss.org; www.alz.org; Alzheimer s Disease Information Network (E News March 2013); Alvarez 2012 10/18/2013 27 10/18/2013 28 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? www.ndss.org; www.alz.org; Alzheimer s Disease Information Network (E News March 2013); Alvarez 2012 10/18/2013 29 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 www.alz.org; www.thearc.org; Alvarez 2012 10/18/2013 30
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. www.alz.org; www.ndss.org; Alvarez, 2012 10/18/2013 31 Treatment Medical Medications No FDA approval specifically for treating AD in Down Syndrome Cholinesterase inhibitors Namenda Diet Antioxidants www.alz.org; Alvarez, 2012 10/18/2013 32 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 www.thearc.org; www.alz.org; 10/18/2013 33 Alvarez 2012 Where Can I Learn More and Get Support? Alzheimer s Resource Service 812-353-9299 Alzheimer s Association 1-800-272-3900; www.alz.org Alzheimer s Disease Education and Research Center 1-800-438-4380; http://www.nia.nih.gov/alzheimers/aboutadear-center 10/18/2013 34 Where Can I Learn More and Get Support? Indiana Area Agencies on Aging 800-986-3505 Down Syndrome Family Connection 812-339-2012 www.downsyndromefamilyconnection.org Questions? Indiana Alzheimer s Disease Center 317-278-5450 NTG s Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (April, 2013) http://aadmd.org/ntg 10/18/2013 35 10/18/2013 36