Across the Spectrum of Dementia. Keys to Understanding Behaviours & Anticipating Needs

Transcription

1 Across the Spectrum of Dementia Keys to Understanding Behaviours & Anticipating Needs

2 Outline Review current predictions for dementia prevalence, & the implications for future needs Discuss retrogenesis as a model of understanding dementia Outline challenges associated with each stage of dementia Discuss choke points or crises that can be anticipated, & should be preventable

3 Dementia

4 Dementia Prevalence: 2.4% age % 85 Total prevalence ~ 8% 65 yrs old. Insidious onset, with progressive decline. CSHA CMAJ 1994;150(6):

5 Prevalence of Dementia with Age Qui et al Dialogues in Clinical Neuroscience Vol.11, No.2, 2009

6 Demographics As of 2011, first baby boomers have started to turn World Alzheimer Report by AD International estimated that in 2010, 36.5 million people were living with AD This is expected to double every 20 years J Psychosocial Nursing 2010;48:9:15-18

7 Demographics Over the next 20 years, a 125% increase in AD expected in Middle East & Northern Africa In Canada, million Canadians are expected to have dementia by 2038 This is expected to cost $ 92.8 billion per year J Psychosocial Nursing 2010;48:9:15-18

8 Demographics Families are estimated to provide 90% of the care for demented people in Canada (Forbes & Neufeld 2008) 5-10% of people > 65 live in long term care facilities, often with a low staff to patient ratio Approximately 1/3 of nursing time is spent in medication administration J Psychosocial Nursing 2010;48:9:15-18

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10 Why do Patients See Me? Pt often does not identify a problem Family frequently brings patient in with: changes in personality angry outbursts & aggression delusional ideation inappropriate behaviors apathy

11 BPSD Symptom Clusters Apathy Withdrawn Lack of interest Amotivation Aggression Aggressive resistance Physical aggression Verbal aggression Depression Sad Tearful Hopeless Low self-esteem Anxiety Guilt Psychosis Hallucinations Delusions Misidentifications Agitation Walking aimlessly Pacing Trailing Restlessness Repetitive actions Dressing/undressing Sleep disturbance Mc Shane R. Int Psychogeriatr 2000; 12(Suppl 1):

12 Symptom Intensity vs. Time From: S. Gauthier

13 Dementia Progression Early loss of higher skills (IADL) : driving managing $ using a bank machine making travel plans Later, poor self-care, refusal to bathe, or change clothes (ADL).

14 Alzheimer s Disease-Time Course Mild Moderate Severe Symptom Recognition Diagnosis Loss of functional independence Behavioural Problems Nursing home placement Death Years From Feldman and Gracon, 1996.

15 What Do I Do? Make a Dx Capacity determinations Medication recommendations

16 What Matters? Safety > Dx > Capacity > Medications

17 Retrogenesis

18 Retrogenesis Barry Reisberg (1999) introduced the concept that AD pts lose abilities in nearly the exact reverse order in which they were originally acquired

19 Retrogenesis The course of AD is as consistent as the normal maturational course of human development e.g. newborns learn early to raise their heads & this is one of the last abilities an AD pt loses

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21 Functional Staging As dementia becomes severe, cognitive testing becomes meaningless and functional staging is necessary The floor of the MMSE makes it unhelpful in severe dementia, where many behavioural problems occur

22 FAST The pattern of decline in capacity in AD may be described using the Functional Assessment Staging (FAST) (aka Global Deterioration Scale) 16 successive functional stages and substages are delineated

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25 FAST Each stage of AD can be translated into a corresponding developmental age (DA) The management needs, and activity preferences of AD pts appear to correlate with the corresponding DA

26 Progression of Impairment In AD, most pts lose 3-4 points/year on MMSE Range of on MMSE usually a watershed with: Problems with judgment Medication misadventures Unsafe being left alone Possible disorientation & wandering

27 Progression of Impairment At a developmental age 5-10: Too young to be left alone

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29 Staging of AD

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31 Implications of Retrogenesis Our problem, not theirs What is helpful is what is done around the patient, (not to them) We must make the environment safe, and suitable for their needs Behaviors may be normal for the developmental age, not target symptoms for pills!

32 ISSUES AT EACH STAGE

33 Early stage (MCI) MMSE Generally minimal or no functional impairment Look for reversible conditions Depression, vitamin deficiency, B12 etc Issues: Provide education Assist with planning AHCD/ POA / Will Brain fitness lifestyle modification (diet / exercise)

34 JAMA 2004;292:

35 Mild Dementia (MMSE 22-26) Potential issues Planning: Home Care ADP Housing needs (?assisted living) Meal program POA / AHCD/ Will Cognitive enhancers Driving

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39 Mod. Dementia (GDS 4-5) (MMSE 14-21) Caregiver resources & support Safety Use of stove, Bathing, Wandering Medication adherence

40 Severe Dementia (GDS 6-7) MMSE <13 Safety! High risk for wandering Incontinence Falls Nocturnal behaviour Inability to be left alone 24 hour supervision required

41 MEDICATIONS

42 Role of Medications At best, modest efficacy for antipsychotics ~30% response rate in BPSD May cause side effects: Parkinsonism Metabolic problems Falls Increase mortality in dementia ( 2x)

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44 Mortality Risk with Antipsychotics

45 OBRA 1987 Law passed in U.S. to reduce neuroleptic use in nursing homes Prior to that 50% of use would not satisfied OBRA standards Following are not indications for antipsychotic use: Wandering, pacing, anxiety

46 Role of Medications Wrong to try to make the individual fit the environment with pills Best to adapt to the patient s changes (retrogenesis model) Should be reserved for when safety is an issue

47 Cognitive Enhancers Very modest benefit for ACHEI s (dementia drugs) on behavior Do not alter disease process! Little evidence that they delay institutionalisation

48 Lancet 2004;363:

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50 Frustrations We know the likely problems that will arise How to prevent a crisis? Can t get the help until it s needed, but when you need it, it s too late GMHT (or psychiatrist) seeing the patient cannot take the place of, and may delay, a change in living arrangements (more important)

51 Frustrations Competency usually not the main issue SDM mechanism is clear Some situations should not wait for dx and/or tx An opinion about medication should not delay having the person in a safe environment

52 WRHA SDM Policy

53 A Proactive Approach When a baby is born, in 5 years he or she will start school When dementia is diagnosed, most patients will require increasing supports, and eventually require PCH placement It should be possible to plan for this eventuality, and not have to await a crisis

54 Proactive Approach Graduated, incremental provision of service, along with caregiver support Early stage should involve education and planning Moderate stage should be risk management and safety Severe stage requires 24 hour supervision

55 Take Home Messages Dementia is a mushrooming problem Drugs work only modestly for behaviors Place structure and support around the person to make the environment fit them Anticipate trouble spots Safety first Dx and capacity issues are less important