8/28/2012 Dementia ‐ Related Behaviors: What Do We Know? What Can We Do? Lisa P. Gwyther, MSW, LCSW Associate Professor, Department of Psychiatry and Behavioral Sciences Director, Duke Family Support Program Education Director, Bryan Alzheimer’s Disease Research Center Duke University Medical Center, Durham, NC Lisa.Gwyther@duke.edu June 4, 2012 29th Annual Summer Series on Aging Lexington, KY What Do Families Say? • She never would have done that before • She never would have done that before. • We need to do something – he’s more than I can handle. • I still care about our relationship – I don’t want to fight like this. g • He seems unaware of how his behavior affects us. Duke Family Support Program, June 2012 1
8/28/2012 What Do Families Say? • She says we never see her or take her anywhere…but we do. h b t d • He’s always at his worst when we get home from work. • How can she be so nice to strangers and so mean to us? mean to us? • He won’t give up driving. Duke Family Support Program, June 2012 What Do Families Ask? What can I do when? • She accuses me of being unfaithful. • He says we stole his money, car, etc. • She won’t let me help, but she won’t bathe. • He tries to go home or to work at 2a.m. • She curses in front of the grandchildren. • He asks what I’ve done to his real wife. Duke Family Support Program, June 2012 2
8/28/2012 The Hardest Parts • “I can’t NOT take it personally!” p y • “It’s like a box of chocolates – you never know what you will find when you bite in.” • “I have never lied to my mother.” • “Couldn’t she remember the good stuff?” • “It only natural to try to explain rationally to a husband of 50 years.” Duke Family Support Program, June 2012 Why Focus on Behavior? • Major cause of suffering for people with dementia and their families • Common and most challenging aspect of care • Major predictor of negative mental and physical health consequences of family care • Major predictor of increased care time, nursing home admission, hospitalization, higher care costs injury and death higher care costs, injury, and death • Major contributor to problems of recruitment, retention, injuries, and burnout of direct care workers (Gitlin, et al., 2010) Duke Family Support Program, June 2012 3
8/28/2012 What Do We Know About Dementia ‐ Related Behaviors? • Anxiety, suspiciousness, restless agitation are Anxiety, suspiciousness, restless agitation are common symptoms of brain disorders despite best care (Goforth & Gwyther, 2009). • Non ‐ drug approaches are recommended first based on evidence and expert consensus (Lyketsos et al, 2006). • Rejection or resistance to care in nursing homes is associated with delirium, delusions, depression or inadequately treated pain (Ishii, 2010). Duke Family Support Program, June 2012 What Do We Know About Dementia ‐ Related Behaviors? • Behaviors communicate unmet need and reduced capacity to cope with stressful situations (van der Ploeg, BMC, 2010). • Dementia ‐ related behaviors may be inconsistent daily or even hourly. • Not all behaviors respond to medicine: Side effects of medication create additional problems. Duke Family Support Program, June 2012 4
8/28/2012 What Do We Know About Dementia ‐ Related Behaviors? • Behaviors may be a response to sensory • Behaviors may be a response to sensory overload, fear, frustration, anticipated embarrassment or physical symptoms. • Dementia ‐ related behaviors respond to changes in activity, routines, environment balancing rest and environment, balancing rest and stimulation and changes in communication from others. Duke Family Support Program, June 2012 Common Dementia ‐ Related Changes • Disinhibition (40%) • Delusions (40%) • Aggression (20%) • Hallucinations (15%) • Apathy (70%) • Sleep disruptions • Agitation (60%) • Anxiety (50%) • Mood blunting/ lability (40%) Duke Family Support Program, June 2012 5
8/28/2012 Which Behaviors are Most Challenging for Families? • Begging, repeated gg g, p • Hitting, biting, g, g, accusations scratching, pinching • Swearing, insulting, • Voiding in the wrong threatening place • Resistance to care • Undressing, unwanted touch or • Shadowing, intimacy rummaging, wandering Duke Family Support Program, June 2012 FTD: Special Considerations • The blank stare Th bl k t • Apathy/lack of motivation • Loss of empathy • Excessive shopping • Excessive shopping Duke Family Support Program, June 2012 6
8/28/2012 FTD: Special Considerations • Can’t resist impulses to manipulate or operate • Ritualistic, compulsive perseveration without purpose • Impulsive disinhibition with no insight about harm to others • Hyper orality • Hyper ‐ orality Duke Family Support Program, June 2012 “It’s not that she can’t dress herself – it’s that she won’t let me help, even when she dresses for church in three shirts, a hat, and panties.” panties. ‐ Daughter of a woman with AD Duke Family Support Program, June 2012 7
8/28/2012 Is the Behavior a Problem? • Causing distress to person or caregiver? i ? • Interferes with function or increases disability? • Impedes delivery of necessary care? • Limits capacity to stay in • Limits capacity to stay in preferred setting? • Safety risk to self or others? Duke Family Support Program, June 2012 What is Agitation? • Physical or verbal aggression • Physical or verbal aggression • Combative or resistive to care • Disruptive vocalizations • Hyperactivity/Restlessness Hyperactivity/Restlessness • Disinhibition Duke Family Support Program, June 2012 8
8/28/2012 Agitation Triggers • Pain • Fatigue • Fatigue • Hunger/Thirst • Dehydration • Constipation • Caffeine/Alcohol • Full Bladder F ll Bl dd • Incontinence I ti • Drug Effects • Infection Duke Family Support Program, June 2012 Agitation Triggers • Disinhibition • Disinhibition • Depression • Delusions • Hallucinations • Sensory Loss • Illusions • Misinterpretation • Immobility • Lost Language • Dependency Duke Family Support Program, June 2012 9
8/28/2012 Agitation: What to Do • Slow down, soothe, structure • Encourage, praise, be gracious and polite • Add visual cues, adjust light • Back off and ask permission • Guided choices • Reassure repeatedly Duke Family Support Program, June 2012 Agitation: What to Do • Ask for adult ‐ like help or “company” • Offer security object, rest and privacy after an upset • Limit caffeine or alcohol • Comfort rituals • Modify favorite social, creative or sports M dif f i i l i activities • Avoid scary TV shows Duke Family Support Program, June 2012 10
8/28/2012 Agitation: What Not to Do Do not: • Take offense • Raise voice • Corner, crowd, restrain • Rush, criticize, ignore • Confront, argue, explain, teach • Show alarm, make sudden movement Duke Family Support Program, June 2012 Agitation: Helpful Talk • May I help you? • Do you have time to help me? • You are safe here. • Everything is squared away. • I will get right to it. • Thanks for letting me know. • I apologize. (Even if you didn’t do it.) Duke Family Support Program, June 2012 11
8/28/2012 Agitation: Helpful Talk • I am sorry you are upset. • I will stay until you feel better. • I know this is hard – I wish things were easier for us. Duke Family Support Program, June 2012 Catastrophic Reactions There is nothing so small that it cannot be blown out of proportion. Duke Family Support Program, June 2012 12
8/28/2012 What is she thinking? • I am overwhelmed. • How dare you question me! • I make sense – you and events don’t. y • Your reasoning wears me out. • I must defend my turf. Duke Family Support Program, June 2012 What is she thinking? • It’s gone and you are here • It’s not a lie – I am filling in memory holes with something reasonable • If I could remember, I wouldn’t ask or repeat questions • Waiting for me to do it myself may just • Waiting for me to do it myself may just frustrate both of us • Give me a clue Duke Family Support Program, June 2012 13
8/28/2012 The Lived Experience of AD “Please don’t correct me ... remember my feelings are intact remember, my feelings are intact and I get hurt easily… I may say something that is real to me but may not be factual. I am not lying. Don’t argue – it won’t solve anything.” D ’t it ’t l thi ” Canadian Early Stage Support Group Duke Family Support Program, June 2012 Behavior Basics • The person is trying as hard as s/he can. Reasoning pleading extracting promises or Reasoning, pleading, extracting promises or punishing won’t help. • People forget what is acceptable public behavior and lose impulse control – short fuse. • Resistance may be a way to avoid R i t b t id embarrassment at being asked to do something too difficult or too childish. Duke Family Support Program, June 2012 14
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