Responding to Behavioural Changes in the Person with Dementia

1. Responding to Behavioural Changes in the Person with Dementia Lois Stewart-Archer RN, MN, CPMHN(C) Regional Clinical Nurse Specialist WRHA Geriatric Mental Health Alzheimer Society Manitoba Conference 2007 Alzheimer Society Manitoba Conference 2007

2. The Dementias Dementia is not a single disease, but a syndrome More than one type can exist at one time Diagnosis tends to be misused and overused

3. What is Dementia?

4. Diagnostic criteria for Dementia Development of multiple cognitive deficits manifested by both: I) memory impairment (impaired ability to learn new information or to recall previously learned information);

5. Criteria for Dementia (cont’d) ii) One (or more) of the following cognitive disturbances: Aphasia (language disturbance) Apraxia (impaired ability to carry out motor function despite intact motor function) Agnosia (failure to recognise or identify objects) Disturbance in executive functioning

6. Criteria for Dementia (cont’d) B. The cognitive deficits in criteria A and B each cause significant impairment in social or occupational functioning and represent a significant decline from previous level of functioning. (DSM-IV TR)

7. DEMENTIA • THE PAST • Memories intrude on the present due to loss of ability to differentiate between the two. • The past is the true memorable reality and the present is a brief experience often not recorded and stored for future reference

8. DEMENTIA • THE FUTURE • Not able to store new information about events in the future • The future is what happens next • There may be some retention of future events as a result of frequent reminding, but this often becomes confused with the present moment

9. What is it like to become increasingly forgetful? “He’s not himself somehow” “She never used to be like that” “How do people with early dementia see themselves?”

10. People with Dementia are indeed remarkable! • REMEMBER: They are trying the very BEST they can!!!

11. STRESS RESPONSE • Hans Selye was awarded the Nobel Prize in medicine in the mid-'60s for his landmark research that identified the effects of stress on the human body. He found that stress, regardless of its source (chemical, mechanical, or emotional), always elicited a specific response. He called this process the "General Adaptation Syndrome" and said it consisted of the following stages: • 1. Alarm reaction to any stress... • 2. Resistance or compensation to meet that stress... • 3. Exhaustion if the stress was too strong or was maintained too long, thus exhausting the body... • 4. Resulting in the stages of disease, degeneration, and finally death. • Selye's complete findings may be found in his book, "The Stress of Life" (McGraw-Hill, 1956)

12. STRESS • Hans Selye (1972) described the General Adaptation Syndrome (GAS). The GAS has three fairly well defined stages, namely, Alarm, Adaptation, and Exhaustion. The GAS in man is induced by the three well known Fs – Fright, Fight, and Flight. These three animal characteristics cover our entire lives. Chronic stress repeatedly induces this syndrome (Barar, 2006).

13. STRESS • It is lamentable that peace does not come in capsules or pills. • Medical science today recognises that emotions like fear, sorrow, anger, envy, and resentment are responsible for 60% to nearly 90% of our sicknesses, and the concept of psychosomatic (mind and body) disease is evolving (Barar, 2006)

14. STRESS & DEMENTIA • Alarm Fright • Adaptation Fight Flight • Exhaustion

15. Stress and the Stress Response • Stress is a fact of life, but succumbing to it is not. • Regardless of the cause, stress sets in motion the "fight-or-flight" response designed to give the body a quick burst of energy. • This attribute has evolved from our prehistoric ancestors.

16. Stress and the Stress Response • Breathing , liver releases  glucose to provide  energy, the heart  beats and the blood pressure , blood flow to the brain and muscles  with simultaneous reduction in flow to the digestive tract, sweating , and  calories are burnt without a rise in body temperature. • After the stressor disappears, the body’s activities return to normal (homeostasis). • But upon repeated (chronic) stress, the body stays on "high alert" .

17. SLEEP • The state of natural rest. • It is characterised by a reduction in voluntary body movement, decreased reaction to external stimuli, an increased rate of the synthesis of cell structures, and a decreased rate of the breakdown of cell structures. • In humans, mammals and many other animals which have been studied, such as fish, birds, mice and fruit flies, regular sleep is necessary for survival. • The capability for arousal from sleep is a protective mechanism and also necessary for health and survival. • Sleep is not synonymous with unconsciousness.

18. SLEEP • Experts say that one cannot make up for the sleep lost during the week, by sleeping more on the weekends. It is called a sleeping binge. • When try to make up for this lost sleep in a day or two by sleeping in, it disrupts the circadian rhythm. • It also disrupts sleeping pattern for the rest of the week, continuing the cycle of poor sleeping habits.

19. SLEEP • The National Sleep Foundation maintains that eight hours of sleep is optimal, claiming that it brings improved performance in tests, reduced risk of accidents, and a better immune system (NIH, 2006). • U of Pen. Sch of Med., demonstrated that cognitive performance declines with less than eight hours of sleep. • U of C, San Diego, psychiatry study found that people who live the longest, sleep for four to seven hours each night.

20. Preventing and Managing Sleep Disturbance A= Activating Event What was the A or Trigger? • Sleep Facts • Impairment common in both • older and those with Dementia • Day time sedation and night • time walking/pacing are • common in Dementia • Sleep disruption leads to • caregiver stress/exhaustion • in the community • Healthy sleep patterns should • be encouraged by using • behavioural strategies • Pharmacological management • is not always effective B = Behaviour Identify specific behaviour that is of concern D = Decide & Debrief How can you change A to better manage B? Brainstorm C= Consequence What is the consequence of B? What caused the sleep disturbance.

21. A = Activating Event Assess for: Physiological Causes Environmental Causes Lack of daytime activity or exercise Life time habit of poor sleep hygiene (late night tv watching) Disturbing dreams Psychological Causes Preventing and Managing Sleep Disturbance

22. Preventing and Managing Sleep Disturbance Activating Event/Trigger • Physical • Health, • Trauma • ___________ • Pain • Infection • Medication • Cognition • Dehydration • Impaction • Metabolic • Environment • ___________ • Changes • Activity • Climate • Stimulation • Aesthetics • Psychological, • Mental Health • ____________ • Mental Illness • Recent Loss • Grief • Past Life • Events

23. B = Behaviour Identify specific behaviour that is of concern: E.g. early am wakening Initial insomnia Disrupted Sleep Daytime Drowsiness PREVENTING AND MANAGING SLEEP DISTURBANCE

24. SLEEP • The state of natural rest. • It is characterised by a reduction in voluntary body movement, decreased reaction to external stimuli, an increased rate of the synthesis of cell structures, and a decreased rate of the breakdown of cell structures. • In humans, mammals and many other animals which have been studied, such as fish, birds, mice and fruit flies, regular sleep is necessary for survival. • The capability for arousal from sleep is a protective mechanism and also necessary for health and survival. • Sleep is not synonymous with unconsciousness.

25. SLEEP • Experts say that one cannot make up for the sleep lost during the week, by sleeping more on the weekends. It is called a sleeping binge. • When try to make up for this lost sleep in a day or two by sleeping in, it disrupts the circadian rhythm. • It also disrupts sleeping pattern for the rest of the week, continuing the cycle of poor sleeping habits.

26. C = Consequence Assessment of the causes of sleep disturbance needs to be thoroughly investigated. Note: Early am awakening may be a symptom ofdepression or too early bedtime Persistent sleep deprivation may lead to fatigue, irritability, restlessness PREVENTING AND MANAGING SLEEP DISTURBANCE

27. D = Decide & Debrief What changes do you need to make? E.g. environmental, staffing How can A be changed to better manage B? Brainstorm. What changes need to be made to overcome A and encourage a healthy sleep routine? Preventing and Managing Sleep Disturbance

28. MANAGEMENT OF DISRUPTED SLEEP • Assess for signs of infection ?delirium • Identify what woke them. Check above causes/strategies • Avoid daytime napping. Check for amount of sleep • Communicate in uncomplicated manner, validate feelings, and provide reassurance+++++. • Use touch and massage • Remain with them until settled • Assess for amount of sleep already had. If adequate, may trigger resistance, frustration etc. • Allow to sit/walk quietly in safe area. Offer warm drink, light snack etc. • Review medication effects. Use meds only as last resort.

29. MANAGEMENT OF DISRUPTED SLEEP (Cont’d) • Sleep disruption • - One of the leading causes of care-giver stress • - Likely to lead to placement • A. Make the house/area safe for night time walking/pacing by: • Providing a gate at the top and bottom of stairs • Installing alarms for external doors • Locking away dangerous implements • Turning off the gas at night (disabling stove) • Locking windows • B. Provide regular daytime/night time respite so caregiver can get • adequate sleep and rest. (H/care, CTS, GMH, GPAT)

30. MANAGEMENT OF DISRUPTED SLEEP (Cont’d) • Sleep disruption • - One of the leading causes of care-giver stress • - Likely to lead to placement • A. Make the house/area safe for night time walking/pacing by: • Providing a gate at the top and bottom of stairs • Installing alarms for external doors • Locking away dangerous implements • Turning off the gas at night (disabling stove) • Locking windows • B. Provide regular daytime/night time respite so caregiver can get • adequate sleep and rest. (H/care, CTS, GMH, GPAT)

31. Ways of Helping: as the Illness Progresses • LEVEL 5 (Early loss, Routine, Repetition) • Some word finding problems,  reasoning • Easily frustrated by changes in plans, routines • Seeks reassurance, difficulty with “taking over” • Still fairly adept at ADLs • May over- or under-estimate skills

32. Ways of Helping: as the Illness Progresses • LEVEL 4 - (Mod. Loss, Just Get it Done, Purpose, Mission) • Gets tasks done, quality poor • Leaves out steps, makes errors, WON’T fix • Willing to help, however needs guidance • Models - uses others’ actions to figure it out • Asks what/where/when? • ADLs with supervision and prompts • Sociable, content limited and confusing

33. Ways of Helping: as the Illness Progresses • LEVEL 3 (Middle loss, See, Touch, Take, Taste, Gathering) • Handles almost anything visible • Does not recognise others’ ownership • Able to walk around, go places • Language poor, comprehension limited • Responds to tone, body language, facial expression • Loses ability to use tools, utensils • Does things because they feel, look, taste good, refuses, if not • Stops doing, when no longer interesting • Can often imitate, not often aware of you as a person

34. Ways of Helping: as the Illness Progresses • LEVEL 2 (Severe loss, Gross Automatic Action, Constantly on the Go, or Down & Out) • Paces, walks, rocks, swings, hums, claps, pats, rubs, etc. • May ignore people and small objects • Does not remain long in any one place, akathisia • Not interested in food, significant weight loss expected • Grossly imitate big movements and actions • Generally enjoys rhythm, motion - music, dance

35. Ways of Helping: as the Illness Progresses • LEVEL 1 (Profound Loss, Immobile, Reflexive) • Generally bed- or chair- bound,  dependence • Often contracted with “high tone” muscles • Poor swallowing and eating • Still aware of movement and touch • Often reactive to voice, noise • Difficulty with temperature regulation • Limited responsiveness at times

36. Contact Information Lois Stewart-Archer RN,MN,CPMHN(C) Regional Clinical Nurse Specialist Winnipeg Regional Health Authority Geriatric Mental Health Services 2109 Portage Avenue Winnipeg, MB. Tel. (204) 831-2179 Fax: (204) 895-2076 email: lsarcher@deerlodge.mb.ca