Overview of Alzheimer’s Disease and Other Dementias

1. Overview of Alzheimer’s Disease and Other Dementias Colloquium The Aging Population, Alzheimer’s and Other Dementias: Law & Public Policy University of Iowa College of Law January 26, 2012 Kathleen CoenBuckwalter, PhD, RN, FAAN Prof. Emerita of Gerontological Nursing Co-Director, National Health Law and Policy Resource Center

2. More than “confusion” • Many things can interfere with memory • Being overloaded; having too much going on at one time • Medications, even ones taken according to directions • Illness and disease that are unrelated to brain disease • Unfamiliar surrounding such as relocation or hospitalization

3. Dementia • Permanent loss of mental abilities caused by damage to brain cells • NOT a “normal” part of aging! • The common end result of many entities • diseases • traumas • infections • drugs

4. Dementia: Essential Features Progressive loss of intellectual abilities . . . • MEMORY impairment • Short-term early • Long-term later • Loss of LANGUAGE • Loss of ability to express oneself • Loss of ability to understand what is said

5. Dementia: Essential Features • Loss of PURPOSEFUL MOVEMENT • Has the physical ability • Can’t perform the task (e.g., getting dressed) • Loss of ability to accurately interpret SENSORY INFORMATION • Cannot understand what is seen, heard, felt • Not related to sensory impairment

6. Dementia: Essential Features • Impairments in . . . • Abstract thinking • Ability to reason • Judgement • Impulse control • Personality changes • Not “him/herself”

7. Who has dementia? REVISED • Dementia is a “generic term” • Many different types • Alzheimer’s disease  Most common type • Risk increases with advancing age • 25% of 80 year olds • 33% of 85 year olds • 50% of 90 year olds

8. Who has dementia? REVISED • Common problem among nursing home residents: 50% to 80% have dementia • Increasing problem among those in assisted living: [add statistic here]

9. Dementia: Types Types • Alzheimer’s Typea.k.a. Alzheimer’s Disease = Most common • 360,000 new cases annually • 4 million Americans afflicted • 4th leading cause of death • 14 million (1 out of 45) by the year 2050 • 80% of population in nursing homes • Leading cause of behavioral symptoms

10. Dementia: Types Types • Vascular, a.k.a., Multi Infarct = 2nd most common • Mixed Alzheimer’s AND Vascular = 3rd most common

11. Dementia: Types Types Dementia due to . . . • HIV Disease • Parkinson’s Disease • Huntington’s Disease • Head Trauma • Substance-Induced Persisting Dementia

12. Dementia: Types Types Dementia due to . . . • Pick’s Disease • Creutzfeldt-Jakob Disease

13. Dementia: Types Types • Not specifically listedin DSM-IV . . . • Diffuse Lewy Body Disease • Frontal Lobe Dementia • Many medical causes! • Normal Pressure Hydrocephalus • Anoxic damage • Vitamin deficiency

14. Dementia: Types Types • Bottom Line: All Alzheimer’s is DEMENTIA . . . but not all DEMENTIA is Alzheimer’s!!

15. Dementia: Types Types • LOTs of variability in presentation! • Within specific types . . . • BETWEEN types . . . • Overlapping syndromes are common • Dementia AND delirium • Alzheimer’s AND vascular dementia

16. “Reversible” Dementia • Multiple health problems may cause “confusion” • Always explore alternative causes • Treatment of underlying physical problem may arrest losses • Problems not fully “reversible” but remaining capacity may be preserved

17. D-E-M-E-N-T-I-A Like working a puzzle . . . D rugs E motion M etabolic E ndocine N utrition T rauma I nfection A lcoholism

18. Diagnosis of Alzheimer’s:New Criteria and Guidelines • Preclinical Alzheimer’s Disease • Mild cognitive impairment (MCI) due to Alzeimer’s Disease • Dementia due to Alzheimer’s Disease

19. Stages of Dementia for Behavioral and Environmental Approaches • Early - Forgetful • Middle - Confused • Later - Ambulatory • Terminal - Endstage

20. Early: Forgetful • Short-term memory impaired • Loses things • Forgets • Blames stress, fatigue • Compensates with lists, memory aids • Depression common

21. Later: Confused • Loss of memory • Increasing disorientation • Time • Place • Person • Things

22. Confused: Example • “Helen” crochets using a single simple stitch but doesn’t remember that she is retired - and sometimes puts her bra on over her blouse. • “Harold,” greets everyone like his oldest friend (“Nice to see you! So good of you to drop by! I’m great! How are you?”) but doesn’t know his own wife.

23. Confused: Example • “Mildred” avoids the question “How old are you?” with “Jack Benny and I are both 29.” When asked what she had for lunch, she replied, “I went to the Riviera and had pink champagne and caviar.” • “George” got lost walking in his neighborhood of 30 years -- as soon as he could no longer see his own house.

24. Later Still: Ambulatory Dementia • Progressive loss of ability interferes with FUNCTION • Increasingly withdrawn and self-absorbed • Depression tends to resolve

25. Ambulatory: Functional losses • Willingness and ability to bathe • Grooming • Choosing among clothing • Dressing • Gait and mobility • Toileting • Communication, reading, and writing skills

26. Ambulatory: Behaviors • Behavioral symptoms more common • Irritability • Agitation • Anxiety • Pacing • Reduced tolerance for stress • Resistiveness to care

27. Endstage Dementia • All abilities lost • Mute • No longer walks • Little purposeful activity • Forgets to eat, chew, swallow • Complications are common

28. Symptoms: Not in distinct stages! • Losses and symptoms vary from person to person, depending on • Extent of brain cell death and loss • Location of brain cell death and loss • Speed with which losses occur

29. Common Behavioral Symptoms • Concealed memory losses • Wandering • Sleep disturbance • Losing and hiding things • Inappropriate sexual behaviors

30. Common Behavioral Symptoms • Repeating questions • Repetitious actions • Territoriality • Hallucinations • Delusions • Illusions

31. Agitation Combativeness Confusion Fearfulness Night wakening Noisy behavior Purposeful wandering Sudden withdrawal from activities “Sundowning” Catastrophic Behaviors Unexpected, intense, and “out of proportion” reactions to a situation . . .

32. Dementia Care Practices • General • Slow down, Eye contact, Cueing • Redirecting, Distracting, Reassurance • Comfort measures (pain meds, food) • Individualized interventions • Promote continuity between levels of care • Pain management • Interdisciplinary team approach • Person vs. Disease focus

33. Nursing Care Models/Approaches • Need-Driven Dementia-Compromised Behavior Model • Understandable needs not disruptive behaviors • Background/proximal factors • Progressively Lowered Stress Threshold Model • Less able to manage stress as a disease progresses • Modify internal/external environment • Support vs challenge, promote safety/comfort

34. Other Models/Approaches to Care • Person-Centered Approach (Kitwood) • Understanding vs management • Well-being/personhood • DCM • Validation (Feil) • Response to feeling/meanings/internal context of behavior • Need to be valued *(Livingston, et al., 2005 and Old Age Task Force of the World Federation of Biological Psychiatry) Using Oxford-Center Guidelines

35. Formal/Informal Caregiver Interventions • Psychoeducation and Skills Training • Change interactions • Behavioral management • FIC Staff Education • Services, social and cognitive support • Family Counseling (Fossey et al., 2006; Maas et al., 1994; Mittelman et al., 1996; Pusey & Richards, 2001; Schultz et al., 2002)

36. Pharmacological Interventions

37. Non-Pharmacological Management of Behavioral and Psychological Symptoms of Dementia (BPSD): Best Practices • Interventions • No “easy” answers • Complicated by changing clinical course • Principles of Care: • Adjust daily routines • Change reaction and responses to behaviors • Monitor and adjust the environment, remove triggers • Adjust interaction and communication strategies Gould (2007) Williams (2005) (Ballard et al., 2009; Burgener & Twigg, 2002; Smith & Buckwalter, 2005)

38. Non-Pharmacological Management, cont’d • Cognitive training: Early Stage (Yu et al., 2009) • Cognitive stimulation, memory rehab, R.O., Neuropsychological Rehabilitation • Structured Activities • “Simple Pleasures” • Recreational • Physical (exercise and movement) • (Alzheimer’s Assoc, 2007; Buettner et al., 2008; Cohen-Mansfield, Libin & Marx, 2007; • Kolanowski, Litaker, & Buettner, 2005; Opie, Doyle, & O’Connor, 2002; Richeson et al., 2008; Volicer & Hurley, 2003)

39. Non-Pharmacological Management, cont’d • Socialization • Pets • Reminiscence, R.O. • Video Respite • Simulated Presence Therapy • Sensory Enhancement/Stim • Expressive Arts • Music • Aromatherapy • Snoezelen • (Burge-Allen, Stevana, & Burgio, 1999; Gerdner, 2005; Mahoney, Volicer, & Hurley, 2000; vanWeert et al., 2005)

40. Summary • Alzheimer’s disease is INCURABLE, but not UNTREATABLE! • Preserve & enhance remaining abilities • Avoid unnecessary stress & overstimulation • Treat illness or other complications • Provide education & guidance for families and other caregivers