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22/03/2016 Assessment and Management of Dementia in General Practice Projected number of people with dementia NB: Flat line Leon Flicker WA Centre For Health and Ageing University of Western Australia Royal Perth Hospital 2016 Source: Calculations by AIHW based on data from Lobo et al. 2000 and Harvey et al. 2003 Cause of Death in Australia Years of Life Lost by Condition In millions per year WHO website (http://www.who.int/mental_health/neurology/dementia/en/) WHO website (http://www.who.int/mental_health/neurology/dementia/en/) 1 22/03/2016 Dementia - ICD 10 • Syndrome due to disease of the brain • Usually chronic and progressive - at least 6 months for a confident diagnosis • Involves a decline in multiple higher cortical functions including memory. • Should attempt to avoid false positive diagnoses, especially depression. • Decline in intellectual functioning affecting personal activities. • No clouding of consciousness (delirium) Vascular Dementia (ICD10) • General criteria for dementia are met. • Deficits in higher cognitive functions are unevenly distributed. Thus memory may be quite markedly affected while thinking, reasoning and information processing may show only mild decline. • Clinical evidence of focal brain damage ( > 1). – – – – Unilateral spastic weakness Unilateral increased tendon reflexes Extensor plantar response Pseudobulbar palsy • Evidence from history, examination or tests of significant cerebrovascular disease which may be reasonably judged to be aetiologically related to the dementia (eg history of stroke, evidence of cerebral infarction). Criteria for Lewy Body Dementia • • • • • Dementia plus two of : Fluctuating cognition (chronic delirium) Recurrent visual hallucinations (well formed 80%) Spontaneous motor features of parkinsonism (75%) If these features are present then specificity is high but sensitivity is low (50%). • Cholinesterase inhibitors may improve apathy, anxiety, hallucinations and delusions. Alzheimer’s Disease (ICD 10) • Primary degenerative cerebral disease with characteristic neuropathological and neurochemical features. – Presence of dementia – Insidious Onset with slow deterioration – Absence of clinical evidence or findings from special investigations to suggest that the mental state may be due to other systemic or brain disease which can induce a dementia – Absence of a sudden, apoplectic onset or of neurological signs of focal damage such as hemiparesis, sensory loss, visual field defects and incoordination occurring early in the illness (although these phenomena may be superimposed later) Frontotemporal dementia • Largely defined by the presence or absence of language disturbance – Behavioural variant – Progressive nonfluent aphasia (PFNA) – Semantic dementia (SD) • Disordered executive functioning (initiation, planning) and disinhibited behaviour • Relatively little memory disturbance • Anosognosia is common Mild Cognitive Impairment • Subjective memory complaints • Performance on memory functioning or other mental function below average for age • Not dementia – no functional impairment • At this stage prognosis uncertain In one study > 20% improved in cognitive function over 2 years and these changes correlated with improvements in brain structure Song et al J Neurol Neurosurg Psychiatry 2013; 84:71 2 22/03/2016 DSM-5 • Was published on May 18, 2013. Both neurocognitive disorders indicate a decline from previous function • Dementia became major neurocognitive disorder without a necessary requirement for memory disorder and DSM5 has a new list of neurocognitive domains, with a list of potential causative conditions. • Mild Neurocognitive Disorder due to various putative conditions seeks to characterize those with objective but modest cognitive decline who are still independent in everyday life • There remains considerable controversy regarding the use of DSM-5 and whether it has advanced past the available evidence. The “Alzheimerization” of dementia • This is the idea that dementia is nearly all due to Alzheimer’s Disease • There are comparatively little data to support this. • Reports have increasingly found less correlation of Alzheimer pathology with dementia than the original report, Blessed et al Br J Psych 1968; 114:797 Dementia or Cognitive Frailty? • Amyloid as the “cause” of Alzheimers dementia Masters et PNAS 1985 • Hopes were raised that within 10 years, effective interventions that alter disease progression would be available. • Some 30 years later, such hopes are somewhat diminished. • Interventions based on this hypothesis were duly tested and removed amyloid protein from the brain. • They did not result in any clinical improvement, and in one trial of a gamma secretase inhibitor, semagacestat, worsening. • The most parsimonious explanation is that amyloid accumulates as part of the brain’s repair mechanism. • Not all people progress to dementia from MCI and that some actually improve over time Song et al J Neur, Neurosurg Psych 2013 • Would explain high rates in Indigenous Australians, effects of physical activity, education, dementia following delirium etc DSM-5 Cognitive Domains • Complex attention, which includes sustained attention, divided attention, selective attention and information processing speed • Executive function, which includes planning, decision making, working memory, responding to feedback, inhibition and mental flexibility • Learning and memory, which includes free recall, cued recall, recognition memory, semantic and autobiographical long term memory, and implicit learning • Language, which includes object naming, word finding, fluency, grammar and syntax, and receptive language • Perceptual-motor function, which includes visual perception, visuoconstructional reasoning and perceptual-motor coordination • Social cognition, which includes recognition of emotions, theory of mind and insight Dementia or Cognitive Frailty? Age, neuropathology and dementia Savva et al N Engl J Med 2009; 360:2302 The association between the presence of dementia and Alzheimer pathology decreases with age • 5 separate pathologies associated with “Alzheimers-type dementia” • Plaques and tangles • Microvascular Lesions • Atrophy • Hippocampal sclerosis • Cortical Lewy Bodies (White L 2009) Spectrum of Possibilities 1. We will develop a series of interventions which will be effective, cheap and these interventions will not be prone to side-effects. We will then provide these interventions universally e.g. BP treatment, vitamins, physical activity, smoking cessation, cognitive stimulation…. 2. The major disease process causing dementia is a single disease process, called Alzheimer Disease. This disease process has a stable pathogenic pathway with specific inhibitors. It is thus possible to devise a specific strategy to target those individuals who are highly likely to develop the disease. 3 22/03/2016 Can we diagnose Alzheimers Disease before clinical symptoms? Preclinical AD 1. Amyloid-β accumulation PET amyloid imaging and/or low Aβ42 on CSF assay 2. Biomarker evidence of synaptic dysfunction and or early neurodegeneration (Stage 2 = evidence of amyloid positivity + presence of one or more additional AD markers) a. Elevated CSF tau or phospho-tau b. Hypometabolism in an AD-like pattern c. Cortical thinning/grey matter loss in AD-like anatomic distribution and/or hippocampal atrophy on volumetric MRI 3. Evidence of subtle cognitive decline How do we apply this? Schneider Lancet Neurology 2013 The AIBL investigators postulate a17-year preclinical period for AD, consisting of a presymptomatic phase of about 13 or 14 years until episodic memory impairment, and a symptomatic, pre-dementia phase of 4 years, on average. ..It is evident that a substantial majority will die earlier than in 17 years and not develop dementia. Assessment and Management of Dementia • Assessment is closely interlinked with management. • There has been an increase in interest in this area because of the cholinesterase inhibitors. • These symptomatic treatments for Alzheimer's Disease mandate the need for comprehensive assessment of people with Alzheimer's Disease and their carers. • These assessments have the potential to provide more benefit than the medications themselves though better access to services and general support. Recommended screening tools for cognitive impairment Early or Timely Diagnosis? • A diagnosis should be made as soon as possible in every individual case - Driven by personal and professional experiences of delays in access to diagnosis and support. • Currently no high quality evidence that diagnosis before the usual point of clinical presentation leads to long term improvements for people with dementia and their families. “policy cart before the research horse.” • “Early” versus “screening” • Potential harms of premature diagnosis – Diversion of resources from activities of proven value – Misclassification of substantial numbers of people – Overdiagnosis and overtreatment – Raising levels of anxiety in the population, particularly among older people. Domains of Assessment • Cognition • Functioning – Activities of daily living – Instrumental Activities of Daily Living • Informant information – Related to cognitive decline – Abnormal behaviour • Carer Assessment – (Medical) Type of dementia & medical comorbidities Brodaty et al MJA 2003 178: 231-234 Modified Mini Mental Exam (3MS) Mini Mental State Exam (MMSE) The Alzheimer’s Disease Assessment Scale - Cognition (ADAS-Cog) General Practitioner Assessment of Cognition (GPCOG) Psychogeriatric Assessment Scale (PAS) Rowland Universal Dementia Assessment Scale (RUDAS) Kimberley Indigenous Cognitive Assessment (KICA-Cog) Montreal Cognitive Assessment (MoCA) Frontal Assessment Battery (FAB) EXIT 25 Addenbrooke’s Cognitive Examination (ACE-R now replaced by ACE-III) Source: www.dementia-assessment.com.au 4 22/03/2016 Noncognitive Symptoms in Alzheimer’s Disease • Personality changes often occur before obvious cognitive impairment - Range from progressive passivity to marked hostility. • Decreased emotional expression, increased stubbornness, diminished initiative, greater suspiciousness. • Delusions in up to 50% of patients with paranoid delusions being the most common. • Hallucinations, usually visual in up to 25% of patients. • Depression and anxiety in up to 40% of patients. Dementia - Diagnostic Protocol There are two main uses for this information: Case Identification Severity and Impact Profile Positive Cognition Informant information on Cognitive decline ADL and IADL Carer evaluation ? Depression, behaviour If: Short history, acute illness, depression More intensive medical assessment is mandatory Dementia Disclosure Analogous to cancer • You see a 75 year old male patient with normal cognitive function and a central mass on chest X-ray. • Sputum cytology reveals non small cell lung cancer • Do you discuss with his wife whether he can “take” the diagnosis and then collude to shield him from the diagnosis? • He dies without ever knowing the diagnosis • This was STANDARD treatment for patients with cancer before 1960. Oken D. What to tell cancer patients. A study of medical attitudes. Journal of the American Medical Association1961;175:1120–8. 5 22/03/2016 Why disclose dementia diagnosis? • Patient has a right to know (or not to know) • Helps to avoid later confusion and ambiguity • Starting point for sharing information • Fosters a collaborative relationship between the patient and healthcare professional • Makes future communications easier • Enables patient and carer to plan for the future • Enables patient to start sorting out legal, financial and practical issues • Maintains openness in the relationship with the patient Foy et al, 2007 shop 23rd June 2012 Cholinesterase - Inhibitors • Donepezil or rivastigmine or galantamine. • Initial treatment of mild to moderately severe AD • Confirmation of diagnosis must be by a specialist/consultant physician (psychiatrist). • The authority must include the result of the baseline MMSE, and if this result is at least 25 points, you can include ADAS-cog. • May be allowed to use CIBIC if particular group eg CALD, previous intellectual impairment etc • Up to a maximum of 1 month’s therapy plus 5 repeats • Need to demonstrate improvement within 6 months, to continue treatment. 31 Memantine (Cochrane review McShane et al 2006) • Low affinity N-methyl-D-aspartate (NMDA) type receptor antagonists, such as memantine, might prevent excitatory amino acid neurotoxicity without interfering with the physiological actions of glutamate necessary for learning and memory. • Memantine has a small beneficial, clinically detectable effect on cognitive function and functional decline measured at 6 months in patients with moderate to severe Alzheimer's Disease (AD). (PBS MMSE 10-14) • In patients with mild to moderate dementia, the small beneficial effect on cognition was not clinically detectable in those with vascular dementia and barely detectable in those with AD. • It is well tolerated. Slightly fewer patients with moderate to severe AD taking memantine develop agitation, but there is no evidence either way about whether it has an effect on agitation which is already present. Background CLINICAL PRACTICE GUIDELINES AND PRINCIPLES OF CARE FOR PEOPLE WITH DEMENTIA NEW practice guidelines for the diagnosis and treatment of dementia in Australia promise to help frontline health care professionals to improve the quality and consistency of the care they offer their dementia patients, according to a Clinical Focus published online (March 14 2016) by the Medical Journal of Australia Purpose • Guidelines synthesise existing evidence. • Guidelines can improve health outcomes and increase the efficiency and quality of care. (Grimshaw 2004) • The NHMRC and ACSQHC agreed that Guidelines for Dementia should be prioritised. • Funding received via the NHMRC Cognitive Decline Partnership Centre to review existing guidelines and adapt for the Australian context. • An agreed standard of care for diagnosis and management of dementia. • Apply to home, residential and hospital settings. • Relevant to health professionals, researchers, administrators, policy makers. 6 22/03/2016 Guideline Adaptation Committee Prof Robert Cumming (Chair) A/Prof Meera Agar Prof Kaarin Anstey Prof Elizabeth Beattie Prof Henry Brodaty Prof Tony Broe Prof Lindy Clemson Prof Maria Crotty Ms Margaret Dietz Prof Brian Draper Prof Leon Flicker Content • • • • • • • • • • • • • • Ethical and legal issues Barriers to care Considerations for CALD populations Considerations for ATSI peoples Diagnosis and assessment Models of care Training for staff and students Promoting independence Cognitive training and rehabilitation Acetylcholinesterase inhibitors and memantine Nutritional supplements Management of BPSD (non-pharmacological and pharmacological) Support for carers Palliative and end of life care Dignity in Care Recommendation: “Health and aged care professionals should provide personcentred care, by identifying and responding to the individual needs and preferences of the person with dementia, their carer(s) and family. The 10 Principles of Dignity in Care should be used as the standard by which care is delivered and evaluated” (PP) 1 2 Zero tolerance of all forms of abuse. Support people with the same respect you would want for yourself or a member of your family. 3 Treat each person as an individual by offering a personalised service. 4 Enable people to maintain the maximum possible level of independence, choice and control. 5 Listen and support people to express their needs and wants. 6 Respect people’s privacy. 7 Ensure people feel able to complain without fear of retribution. 8 Engage with family members and carers as care partners. 9 Assist people to maintain confidence and a positive self-esteem. 10 Act to alleviate people’s loneliness and isolation. Ms Meg Friel Ms Louise Heuzenroeder A/Prof Susan Koch Prof Sue Kurrle Prof Rhonda Nay Prof Dimity Pond Dr Jane Thompson Ms Yvonne Santalucia A/Prof Craig Whitehead A/Prof Mark Yates Types of recommendations Type of recommendati on Evidence based recommendati on (EBR) Consensus based recommendati on Description Recommendation formulated after a systematic review of the evidence, with a rating of the overall quality of the evidence and supporting references provided. Recommendation formulated in the absence of adequate evidence, when a systematic review of the evidence has failed to identify sufficient studies meeting the inclusion criteria for that clinical question to inform a recommendation. (CBR) Practice point (PP) A recommendation that is outside the scope of the search strategy for the systematic evidence review, or for which a systematic review was not conducted, and is based on expert opinion. Timely diagnosis • “General population screening for dementia should not be undertaken.” (CBR) • “Concerns or symptoms should be explored when first raised, noted or reported by the person, carer(s) or family and should not be dismissed as ‘part of ageing’.” (PP) • “Medical practitioners working with older people should be alert to cognitive decline, especially in those aged 75 years and older.” (CBR) Evidence: There were no studies identified that evaluated screening for cognitive impairment in the general population. Potential harms and benefits are unknown. 7 22/03/2016 Memory assessment specialists and services • • “People with a possible diagnosis of dementia should be offered referral to memory assessment specialists or services for a comprehensive assessment.” (EBR) “Memory assessment specialists and services should offer a responsive service to aid timely diagnosis and should be able to organise a full range of assessment, diagnostic, therapeutic and rehabilitation services to accommodate the needs of people with different types and severities of dementia as well as the needs of their carer(s) and families living in the community. Referrals for required health and aged care services should be made directly by the specialists or the memory assessment service.” (PP) Evidence: One Australian RCT found improved psychosocial status for carers at six months after visiting a memory clinic compared to those visiting a GP (Logiudice 1999). An RCT and economic evaluation in the Netherlands found no evidence of a significant difference in cost between memory clinics and general practitioner care (Meeuwsen 2012). Training staff • “Health and aged care organisations should ensure that all staff working with people with dementia receive dementia-care training (attitude, knowledge and skill development) that is consistent with their roles and responsibilities. Training should reflect programs that have been shown to optimise care for people with dementia. Effective programs tend to be: delivered face-to-face by someone experienced in dementia care; scheduled over several training sessions; involve ongoing mentoring or support from someone experienced in dementia care; and, utilise active learning techniques such as problem solving, case based training and role plays.” (EBR) • “Training programs should be comprehensive and have a strong focus on communicating effectively with the person with dementia and his or her carer(s) and family and recognising, preventing and managing behavioural and psychological symptoms of dementia. Staff should be trained in the principles of person-centred care and how these principles are applied in practice.” (EBR) Evidence: There are a number of RCTs that demonstrate that training programs in residential care settings (as described above) can reduce symptoms such as agitation, reduce restraint use and improve the quality of care. Management of symptoms “To assist the carer(s) and family help the person with dementia who is experiencing behavioural and psychological symptoms of dementia, carer(s) and family should be offered interventions which involve: •carer skills training in managing symptoms and communicating effectively with the person with dementia •meaningful activity planning •environmental redesign and modification to improve safety and enjoyment •problem solving and management planning.” (EBR) Diagnosis of dementia • Comprehensive assessment (history taking, cognitive and mental state examination, physical examination, medication review, exclusion of other causes) • Basic screen (routine haematology, biochemistry, thyroid function, serum Vit B12 and folate) • Regular assessment for comorbidities and key psychiatric features (eg depression and psychosis) • Routine use of diagnostic technologies (eg biomarkers for β-amyloid or neuronal injury (eg. 18Ffluorodeoxyglucose Positron Emission Tomography [FDG-PET] or CSF tau) is considered premature Management of symptoms Recommendations support: • Attempting to minimise symptoms by considering unmet needs and lowered stress threshold • Comprehensive assessment by a professional with skills in this area (eg ABC approach) • Objective measurement to monitor the type and patterns • Non-pharmacological approaches in the first instance Management of symptoms pharmacological The Guidelines recommend: • Trial of analgesic medication where the person is suspected to be in pain due to distress • Trial of SSRI antidepressants for agitation (citalopram has the strongest evidence) • Avoiding antipsychotics in people with mild to moderate symptoms • There is uncertainty around the efficacy of antidepressants in the treatment of depression in people with dementia. Larger trials have not shown benefit. 8 22/03/2016 Management of symptoms pharmacological Management of symptoms • People with severe symptoms causing distress to themselves or others may be offered treatment with an antipsychotic. Risperidone and olanzapine have the strongest evidence for agitation/aggression. Conditions of use are outlined in the recommendations. • Recommendations provided regarding use of parenteral medication (noting that oral medication should be offered first). “Where people with dementia have moderate to severe behavioural and psychological symptoms of dementia that puts themselves or others at risk, referral to a specialist service for the management of behavioural and psychological symptoms should occur.” (PP) DBMAS, new Severe Behaviour Response Teams (SBRTs) Support for carers “Carer(s) and family should have access to programs designed to provide support and optimise their ability to provide care for the person with dementia. Programs should be tailored to the needs of the individual and delivered in the home or at another accessible location. Programs should be delivered over multiple sessions and include: •education regarding dementia and its consequences •information regarding relevant services including respite •referral to support organisations such as Alzheimer’s Australia or Carers Australia •development of individualised strategies and building carer skills to overcome specific problems experienced by the person with dementia as reported by the carer •training in providing care and communicating most effectively with the person with dementia •support and information regarding coping strategies to maintain their own wellbeing including stress management •training in the use of pleasant and meaningful activities as a strategy to engage the person with dementia” (EBR) End of life care • Should be consistent with the person’s Advance Care Plans. • Health and aged care staff and carers and families should continue to offer people with dementia food and drink by mouth. • Nutritional support, including artificial (tube) feeding, should be considered if dysphagia is thought to be a transient phenomenon, but artificial feeding should not generally be used in people with severe dementia • Any decision about rehydration should be made in conjunction with the carer(s) and family after providing them with up-todate information on the potential benefits and harm. • Ethical and legal principles should be applied in all decision making (see NHMRC Guide on ethics and decision making in palliative care for older people) Carers should be offered respite and be provided with information on how to join a mutual support group Conclusion • The Guidelines are a tool: they provide clinicians with recommendations detailing an agreed standard of care • Evidence based medicine considers the person’s preferences and clinical judgement • Dissemination alone is rarely sufficient – translation can be challenging and should be guided by a knowledge translation framework 9