Re: Clinical Practice Guidelines for Dementia in Australia public consultation

Transcription

1 15 May 2015 Dr Kate Laver Rehabilitation and Aged Care Repatriation General Hospital, Daws Rd Daw Park SA 5041 By to: Dear Dr Laver Re: Clinical Practice Guidelines for Dementia in Australia public consultation The Royal Australian and New Zealand College of Psychiatrists (RANZCP) welcomes the opportunity to provide feedback into the Clinical Practice Guidelines for Dementia in Australia (the Guidelines) public consultation. The RANZCP is a membership organisation that prepares doctors to be medical specialists in the field of psychiatry, supports and enhances clinical practice, advocates for people affected by mental illness and advises governments on mental health care. The RANZCP is the peak body representing psychiatrists in Australia and New Zealand, and has more than 5000 members including around 3700 fully qualified psychiatrists. It is pleasing to note that two RANZCP Fellows, Professor Henry Brodaty and Professor Brian Draper, are members of the Guideline Adaptation Committee. The RANZCP commends the NHMRC Partnership Centre for Dealing with Cognitive Related Functional Decline in Older Peoples for developing an informative, comprehensive and accessible set of Guidelines. Dementia is an increasingly important issue in Australia, yet there is a dearth of guidelines available to support health and aged care workers in providing optimal diagnosis and management of dementia nationally. The implementation of these Guidelines will be crucial in filling this as yet unmet need. The RANZCP does have a number of recommendations for honing the Guidelines, detailed in the enclosed submission. If you would like to discuss any of the issues raised in the submission, please contact Rosie Forster, Senior Manager, Practice, Policy and Partnerships via to rosie.forster@ranzcp.org or by phone on (03) Yours sincerely Prof Malcolm Hopwood President Ref: La Trobe Street, Melbourne VIC 3000 Australia T F ranzcp@ranzcp.org ABN

2 Clinical Practice Guidelines for Dementia in Australia public consultation 15 May 2015 developing and promoting best practice standards 309 La Trobe Street, Melbourne VIC 3000 Australia T F ranzcp@ranzcp.org ABN

3 Royal Australian and New Zealand College of Psychiatrists submission Introduction The Royal Australian and New Zealand College of Psychiatrists (RANZCP) welcomes the opportunity to provide feedback into the National Health and Medical Research Council Partnerships Centre for Dealing with Cognitive and Related Functional Decline in Older People s Clinical Practice Guidelines for Dementia in Australia (the Guidelines) consultation. The RANZCP commends the Partnership Centre for producing a very comprehensive and useful resource. A number of the RANZCP s members have identified that, despite the abundance of resources out there, the document fills a previously unmet need for a comprehensive and evidence-based set of guidelines on dementia. Given predictions that, without a medical breakthrough, the number of people living with dementia in Australia will rise from 308,000 in 2011 to 890,000 in 2055 (Treasury, 2015), the Guidelines will be an important resource for health and aged care services going forward. As medical specialists with expertise in mental health, psychiatrists play a key role in researching, assessing and managing dementia, directly with patients, as well as in consultation with other medical practitioners, carers and family members to provide holistic person-centred care encompassing physical health as well as mental health. The RANZCP welcomes the opportunity to contribute the expertise of its members into the development of the Guidelines, detailed below. Key themes and sections Stigma The stigma of being labelled with the term dementia is touched upon in the Guidelines, however with only a limited level of detail. This is a major issue and one that frequently arises for health workers, patients and the patient s support network. This is particularly the case in the early stages of assessment and diagnosis. It is essential that health workers are supported to approach this aspect of the illness appropriately and are well-versed in best practice when negotiating this early stage of their relationship with the patient and their family. The RANZCP recommends that the significance of this be reflected in the Guidelines. Carers The Guidelines refer extensively to carers, which the RANZCP welcomes given the importance of their role in responding to the needs of their loved ones. As the Guidelines touch upon, the term carer can have its limitations, however, as some people do not feel that this term applies to them. This can particularly be the case when dementia has newly been diagnosed and when the cognitive and functional impairment of the person is only just becoming evident. In order to ensure that some linkages are not given precedence over others arbitrarily, the RANZCP recommends care should be taken to ensure inclusive language is used and that families, spouses and partners are incorporated on an equal footing to carers. On page 92 the centrality of a patient s carer and/or informal support network in contributing to the wellbeing of a person with dementia is identified. The RANZCP supports recognition of the importance of the caring role, and the need for carers to be mindful of their own health and wellbeing. The RANZCP recommends, however, that caring should not be pathologised and inference that assuming a caring role will necessarily lead to burnout or disease should be avoided. The RANZCP is not aware of any evidence to suggest that dementia carers are any more at risk of developing physical or mental health conditions than carers of people with other illness, such as Parkinson s disease or stroke for example. The RANZCP recommends using the phrase carers are at an increased risk of poor health and their needs should be looked for at assessment and reviewed regularly by their own health practitioners to Clinical Practice Guidelines for Dementia in Australia RANZCP submission Page 2 of 9

4 emphasise the need to support carers, but avoid pathologising the role. To this end, the RANZCP also recommends reconsidering the inclusion of the phrase the forgotten patient. Terminology The first sentence of the Plain English summary on page three, dementia is the name given to a number of conditions (including Alzheimer s disease) that affect memory, thinking, behaviour and ability to perform activities of daily living is potentially misleading. Dementia is a clinical syndrome which can be caused by a number of underlying diseases. This particular issue is a source of great confusion for many patients, families, carers and also for some health workers. This statement should be reworded to avoid perpetuating this confusion. The RANZCP recommends changing the phrasing from including Alzheimer s disease to including dementia caused by Alzheimer s disease. In Box 1 on page 25 of the Guidelines the Types of dementia are described. Similar to the recommendation made regarding the Plain English summary on page three, the RANZCP recommends the subheading Alzheimer s disease should be changed to Dementia of the Alzheimer Type or a similar more accurate rubric. Further, whilst quantifying the portions of people living with different types of dementia can be useful, the percentages quoted in Box 1 did not reflect the RANZCP s member s clinical experience and the accuracy of the statistics were questioned. In particular, the RANZCP queries whether frontotemporal dementia is more common than Dementia with Lewy Bodies, as Box 1 indicates. The Guidelines refer to psychogeriatricians, however this term does not exist in all jurisdictions. Members have reported that the phrase is not always well understood. For greater clarity the RANZCP recommend the phrase geriatric psychiatrist. Similarly, page 41 lists psychiatrists and psychogeriatricians. This is redundant, either the term psychiatrist or geriatric psychiatrist would suffice. Rather than using the term mild-to-moderate Alzheimer s disease, consider using the term mild to moderately severe as this reflects the new terminology used by the Pharmaceutical Benefits Scheme. Pharmacological treatments The RANZCP supports the recommendations to prescribe antipsychotics to people with dementia with caution. The RANZCP would add that in instances when Behavioural and Psychological Symptoms of Dementia (BPSD) are treated with antipsychotics, if there is no efficacy observed within a relatively short timeframe, normally one to two weeks, the medication should be discontinued. Further, unlike when antipsychotics are used in a major psychiatric illness like schizophrenia (where antipsychotics are prescribed on a long term basis), when they are used to treat BPSD regular review of the need for antipsychotics and consideration of trial cessation should occur every four to 12 weeks. Feedback from the Aboriginal and Torres Strait Islander Mental Health Committee The RANZCP undertook consultation with its Aboriginal and Torres Strait Islander Mental Health Committee for input into the relevant aspects of the Guidelines. The Aboriginal and Torres Strait Islander Mental Health Committee is composed of psychiatrists who have direct experience working in Aboriginal and Torres Strait Islander mental health, as well as Aboriginal and Torres Strait Islander community members who are involved in mental health service provision and policy development. Overall the response from the Aboriginal and Torres Strait Islander Mental Health Committee was positive, and in particular complementary of the consideration given to Aboriginal and Torres Strait Islander patients in the Guidelines. One important issue that should be added to the Guidelines is the difficulty of assessing cognitive function in Aboriginal and Torres Strait Islander populations. This is often due to differing definitions, Clinical Practice Guidelines for Dementia in Australia RANZCP submission Page 3 of 9

5 manifestations and conceptualisations of mental health in Aboriginal and Torres Strait Islander communities, which are poorly understood by the wider community. Misunderstanding of what constitutes normal or abnormal behaviours can lead to misdiagnosis and incorrect treatment. The RANZCP recommend reference to the following article which provides a comprehensive overview of this topic: Dingwall K, Cairney S (2010) Psychological and cognitive assessment of Indigenous Australians. Australian and New Zealand Journal of Psychiatry, 44: Tools designed to generate a level of cultural consideration such as the Kimberley Indigenous Cognitive Assessment (KICA) and the Rowland University Dementia Assessment Scale (RUDAS) should be referenced. Discussion should encapsulate their utility as well as their limitations. The RANZCP notes that on page seven and again on page 37 the Alzheimer Australia s National Aboriginal and Torres Strait Islander Dementia Advisory Group (NATSIDAG) has been incorrectly named the National Indigenous and Torres Strait Islander Dementia Advisory Group. This should be corrected. On page 36 the section on Aboriginal and Torres Strait Islander peoples comes under the heading of considerations for culturally and linguistically diverse (CALD) populations. Consultation with the Aboriginal and Torres Strait Islander Mental Health Committee included strong feedback that Aboriginal and Torres Strait Islander peoples should not be subsumed under the CALD category, as this is misleading. The RANZPC recommend that discussion of Aboriginal and Torres Strait Islander-relevant issues be placed in a separate category. There are several references to the need for bilingual bicultural staff and workers. While these descriptors may be useful in the context of CALD populations, they are inappropriate when referring to the needs of Aboriginal and Torres Strait Islander peoples. Bilingual bicultural incorrectly implies that there is just one Aboriginal and Torres Strait Islander language and culture. Rather, it would be more appropriate to recommend that staff be culturally sensitive and informed, and access translators and/or cultural interpreters as appropriate. Suggestions for specific sections of the text Plain English summary The fifth dot point on page three states medical practitioners should consider medication (acetylcholinesterase inhibitors or memantine) to manage the cognitive symptoms of dementia. The RANZCP suggests the following is a more accurate statement: medical practitioners should consider medication (acetylcholinesterase inhibitors or memantine) to assist in the management of the cognitive symptoms of dementia. The Plain English summary moves from diagnosis and use of cholinesterase inhibitors to the recognition and management of agitation, however does not address the apathy and anxiety which, with depression, often precede the diagnosis of dementia and its underlying disease. Given that apathy, anxiety and depression are often major challenges to people with dementia and their supporters, the RANZCP recommend that this should be signposted early on. Referencing Page 33 references Alzheimer s Australia s 2005 text Legal planning and dementia. The RANZCP recommends updating this reference O Neill and Peisah s Capacity and the law, which is generally acknowledged as the Australian resource for capacity: Clinical Practice Guidelines for Dementia in Australia RANZCP submission Page 4 of 9

6 O Neill N, Peisah C (2011) Capacity and the law. SydUPLawbk1 (Sydney University Press). Available at: (accessed 6 May 2015). On page 88 there seems to be an error in the referencing under analgesia. Rather than references 8 10, the RANZCP suggests that for this type of evidence review the papers themselves should be used, rather than general reviews and should be replaced with: Chibnall JT, Tait RC, Harman B, Luebbert RA (2005) Effect of acetaminophen on behaviour, wellbeing, and psychotropic medication use in nursing home residents with moderate-to-severe dementia. Journal of the American Geriatrics Society, 53: Buffum MD, Sands L, Miaskowki C, Brod M, Washburn A (2004) A clinical trial of the effectiveness of regularly scheduled versus as-needed administration of acetaminophen in the management of discomfort in older adults with dementia. Journal of American Geriatrics Society, 52: In the same section reference to the step-wise protocol reference 10 should be replaced with reference 254 from the Guidelines: Husebo B, Ballard C, Aasland D (2011) Pain treatment of agitation in patients with dementia: A systematic review. International Journal of Geriatric Psychiatry, 26(10): Guideline Recommendations 1 practice point (PP) The RANZCP recommends that person centred and family-centred care should be referenced so as to emphasise the importance of the insight and contribution of the patient s family. 6 practice point 6 PP references Enduring Power of Attorney, enduring guardianship and Advanced Care Plans. In different jurisdictions these terms can have different legal meanings. The RANZCP recommends that more generic terms should be used to ensure consistent meaning. Overall, an enduring power of attorney generally permits a person to authorise the attorney to: Consent to medical treatment Refuse medical treatment Consent to the donation of an organ, blood or tissue on their behalf if that person is unable to do so themselves. Reference to these three durable powers more generically would avoid cross-jurisdictional confusion. 11 practice point The RANZCP welcomes the recommendation in 11 PP for hospitals to implement strategies to maximise independence and minimise the risk of harm for patients with dementia. The RANZCP would like to see more specific recommendations for how hospitals and health workers should approach this. Most hospitals undergo regular external audits, but these have not generally led to the provision of dementiafriendly policies, environments or care. More guidance on this point would be valuable. Clinical Practice Guidelines for Dementia in Australia RANZCP submission Page 5 of 9

7 25 practice point The RANZCP supports 25 PP, namely that medical practitioners should be alert to cognitive decline in older people, however recommends greater clarity on this point. Cognitive decline is a universal phenomenon and is strongly age-related even in the absence of disease. It is not so much the identification of cognitive decline that is needed, but the identification of functionally significant cognitive decline. This tends to be seen initially as cognitive decline associated with impairment in complex instrumental activities of daily life. 26 evidence-based recommendation (EBR) The recommendation to refer people with a possible dementia diagnosis to memory assessment specialists or services is often not practicable due to scarce resources, and not necessarily the most efficient use of these resources. The RANZCP suggest that a more realistic approach is to recommend that general practitioners receive additional training so they can effectively undertake these assessments, and that advice lines should be more accessible for secondary consultation when required. 30 consensus-based recommendation (CBR) The RANZCP suggest that the newly introduced term Mild Neurocognitive Disorder should be added in parentheses as a synonym for Mild Cognitive Impairment. 33 practice point Calcium is an electrolyte so does not need to be listed separately. 36 practice point The RANZCP supports the recommendation made in 36 PP, that cerebrospinal fluid examination should not be performed as a routine investigation for dementia. Subsequent discussion of the role of lumbar puncture is limited, however, and should be expanded upon. Many diagnostically unclear cases, or those occurring in younger people, might benefit from lumbar puncture examinations. There is also evidence to suggest that the cerebrospinal fluid Tau/Abeta42 ratio might provide useful information about the likely rate of progression. 38 practice point 38 PP references cerebrospinal fluid examination in the testing for Creutzfeldt-Jakob disease or other forms of rapidly progressive dementia. The RANZCP would add that whilst lumbar puncture examination can be useful in diagnosing Creutzfeldt-Jakob disease, the protein is not necessarily diagnostic. Lumbar puncture may in fact be unnecessary in the context of an appropriate clinical picture, Magnetic Resonance Imaging (MRI) findings and Electroencephalogram (EEG). Further, it should be acknowledged that it can be extremely difficult to find a centre prepared to perform a lumbar puncture on any patient with suspected Creutzfeldt-Jakob disease due to concerns over contamination engendered by the prion protein. 41 practice point In 41 PP Positron Emission Tomography (PET) (with 18F-flurodeoxyglucose [FDG]) is correctly referred to as a new technology with utility in assessing dementia. However, FDG-PET is currently used far more frequently in the diagnosis of difficult cases than the practice point implies, and the RANZCP recommends 41 PP be reworded to reflect this. The RANZCP also recommends that FDG should not be listed alongside amyloid and tau ligands, as this is technically incorrect. Clinical Practice Guidelines for Dementia in Australia RANZCP submission Page 6 of 9

8 50 53 practice points The RANZCP supports this set of practice points. More specific reference is required, however, to the stigma associated with the use of the term dementia. Furthermore, the risks of premature categorisation if the syndromal diagnosis is in any doubt should also be emphasised. In their feedback, the RANZCP s membership related more than one instance of having to un-diagnose people who have been prematurely diagnosed with dementia, have resigned from their employment, gone on the Disability Support Pension and accessed their superannuation early, only to find later that the diagnosis was incorrect evidence-based recommendations, practice points The RANZCP recommends that acknowledgement of the importance of the private sector in assessing and caring for people with dementia should be referenced in this section evidence-based recommendations, 75 practice point Information contained in these recommendations is limited and does not necessarily provide the full picture when it comes to prescribing acetylcholinesterase inhibitors and memantine. There is the risk that if these recommendations are read and interpreted as comprehensive, important issues could be missed. For example, one additional issue that requires consideration is the side effect of increased urinary frequency associated with cognitive enhancers, which in turn increases nocturnal falls. Further, the RANZCP recommends that people who are prescribed a cognitive enhancer should be reviewed at an initial stage, for example after one month, for adverse effects. A follow-up review for efficacy should occur later, after six to 12 months. 71 evidence-based recommendation Mention should be made of the potentially increased risk of prescribing drugs that might cause symptomatic bradycardia in people with dementia who live alone. It is not clear that ECG screening alone would entirely resolve this issue. 72 evidence-based recommendation Reference should be made to muscle cramps, as a common occurrence associated with acetylcholinesterase inhibitors. 75 practice point The RANZCP suggests that people who have been prescribed an acetylcholinesterase inhibitor or memantine should be reviewed after one month for adverse effects and dose titration, not six months as 75 PP suggests. 76 practice point The RANZCP suggests 76 PP would be more accurately expressed as an evidence-based recommendation, given that there are randomised control trials clearly indicating that cholinesterase inhibitors have no clinically significant efficacy in Mild Cognitive Impairment. 78 practice point The RANZCP welcomes the recommendation that care should be taken to monitor the behaviour and psychological symptoms of people with dementia. However, people with dementia appear to be excluded from treatment by Medicare-funded psychologists and even if a person with dementia has access to affordable sessions, many psychologists have not had access to adequate training in the outpatient management of people with dementia. A more strongly worded statement directed towards this anomaly is recommended. Clinical Practice Guidelines for Dementia in Australia RANZCP submission Page 7 of 9

9 89 evidence-based recommendation The RANZCP queries the evidence base of 89 EBR, as overall there is not yet a clinical consensus regarding the use of antidepressants in the treatment depression in dementia. The RANZCP considers the evidence base too small to draw hard and fast conclusions on this issue at this stage. Furthermore, in the clinical trials of antidepressants in dementia that have taken place, it is not clear whether all patients had a major depressive disorder. The RANZCP believes that patients with a well-established history of treatment-responsive major depression prior to the clinical onset of dementia should be treated in the usual way, with antidepressants, behavioural interventions (including pleasant event scheduling) and, in exceptional circumstances, electroconvulsive therapy. To leave major and treatable depression untreated in dementia patients would be inhumane and discriminatory. The RANZCP s Faculty of Old Age Psychiatry (FPOA) has recently developed Position Statement 81 Use of antidepressants to treat depression in dementia which goes into this issue in some depth (RANZCP, 2015). 90 evidence-based recommendation, 91 practice point The RANZCP does not believe that it is realistic for moderate BPSD to always be excluded from the potential for benefit from lower dose psychotropic medications. In practice, moderate symptoms can be very distressing to the patient and their support network. Treatment often requires a combination of nonpharmacological and pharmacological approaches. The importance of combining pharmacological with non-pharmacological approaches should be emphasised. 91 practice point Mention should be made of the roles of quetiapine, clozapine and cognitive enhancers, particularly rivastigmine, in patient groups with Dementia and Lewy Bodies with mild to moderate BPSD. 92 evidence-based recommendation It should be made clear that aripiprazole/olanzapine are not covered by the Pharmaceutical Benefits Scheme (PBS) for the purposes described in 92 EBR. The RANZCP queries the statement that olanzapine has the best evidence of efficacy and tolerability. On the contrary, the evidence shows that clozapine has the best efficacy, followed by a much weaker evidence base for quetiapine and lastly olanzapine. Whilst the contents of this complex recommendation are admirable, in practice many people with dementia have cortical Lewy Bodies in the absence of a clinical presentation suggesting Lewy Body Dementia, as autopsy studies have demonstrated. 92 EBR describes a textbook case which cannot be achieved in practice until a non-invasive method of determining cortical Lewy Body burden in living patients. The RANZCP recommends rephrasing 92 EBR to state that if the patient has symptomatic Lewy Body Dementia, antipsychotics should be avoided practice points The RANZCP recommend that 98 PP should be made the first recommendation in this series of practice points as this is the key recommendation and chronologically the first one, given specialist advice should be sought before embarking on parenteral treatment. 93 practice point 93 PP references the need for health professionals to understand the cardiorespiratory effects of the acute administration of benzodiazepines and the need to titrate dosage to effect. Benzodiazepines are not explicitly recommended in the Guidelines, however 93 PP infers that benzodiazepines may be Clinical Practice Guidelines for Dementia in Australia RANZCP submission Page 8 of 9

10 used. The RANZCP recommends that there should be more information regarding of the choice of agents in 93 PP. The evidence for benzodiazepine use in these scenarios is conflicting, however they are used in practice. If the Guidelines do not recommend benzodiazepine use this should be made clear. 99 practice point The RANZCP welcomes this important practice point. Emphasis should be placed on the importance of families, spouses and partners as well as carers, so as not to inadvertently exclude those who do not identify as a carer, but who provide essential support to the person with dementia. Families, carers and support networks have important insights and information about the patient which health workers should take the time to discuss. 109 practice point Care should be taken when using legal terminology such as Advanced Care Directive and Advanced Care Plan, as these are not interchangeable and are used in different ways in different jurisdictions. The language in 109 PP should be reworded to ensure the use of legal terminology is clear and equally applicable across Australian jurisdictions. Further, the RANZCP recommends that the practice point specifies that time should be taken to speak with families, carers and support networks about these issues. Formatting and style Overall the Guidelines were described by members as accessible, informative and comprehensive. The RANZCP anticipates that the Guidelines will be very helpful guidance for people in health and aged care professions, both in management and frontline roles. Some members suggested that an abridged version would be useful and would encourage greater uptake and more frequent use no doubt this will be considered as part of the final publication. Feedback from members did identify that the word should was used repeatedly 449 times in the document and that this became distracting. References Royal Australian and New Zealand College of Psychiatrists (2015) Position Statement 81: Use of antidepressants to treat depression in dementia. Available at: Antidepressants-to-treat-depression-in.aspx (accessed 5 May 2015). Treasury (2015) 2015 Intergenerational Report: Australia in Commonwealth of Australia. Australian Capital Territory, Australia. Clinical Practice Guidelines for Dementia in Australia RANZCP submission Page 9 of 9