I was thinking mostly of clinic protocols and testing, they will need a major overhaul.
Current guidelines will need to be changed quickly if 2-73 is approved:
Clinical practice guidelines for dementia in Australia Kate Laver, Robert G Cumming, Suzanne M Dyer, Meera R Agar, Kaarin J Anstey, Elizabeth Beattie, Henry Brodaty, Tony Broe, Lindy Clemson, Maria Crotty, Margaret Dietz, Brian M Draper, Leon Flicker, Margeret Friel, Louise Mary Heuzenroeder, Susan Koch, Susan Kurrle, Rhonda Nay, C Dimity Pond, Jane Thompson, Yvonne Santalucia, Craig Whitehead and Mark W Yates Med J Aust 2016; 204 (5): 191-193. || doi: 10.5694/mja15.01339 Published online: 21 March 2016
Summary
About 9% of Australians aged 65 years and over have a diagnosis of dementia. Clinical practice guidelines aim to enhance research translation by synthesising recent evidence for health and aged care professionals. New clinical practice guidelines and principles of care for people with dementia detail the optimal diagnosis and management in community, residential and hospital settings. The guidelines have been approved by the National Health and Medical Research Council. The guidelines emphasise timely diagnosis; living well with dementia and delaying functional decline; managing symptoms through training staff in how to provide person-centred care and using non-pharmacological approaches in the first instance; and training and supporting families and carers to provide care.
Dementia is a National Health Priority Area in Australia. As our population ages, the number of people with dementia will increase.1 People with dementia have deficits in one or more of the areas of memory, communication, attention, thinking and judgement.2
The quality of clinical practice in dementia care in Australia is variable. The availability of high-quality services to support workforce training, diagnosis and ongoing care, advance care planning and support for families to provide care is inconsistent.
Clinical practice guidelines can improve uptake of research findings by identifying, synthesising and disseminating evidence to clinicians.3 Most importantly, adherence to clinical practice guidelines can improve the quality and consistency of care.4
The National Health and Medical Research Council (NHMRC) Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People was established in 2013 with funding support from the NHMRC, HammondCare, Alzheimer’s Australia, Brightwater Care Group and Helping Hand Aged Care. One of the activities of the Partnership Centre was to develop Australian clinical practice guidelines for dementia. The guidelines were adapted from existing guidelines5 using ADAPTE methodology6 to reflect the Australian context and the latest evidence. A multidisciplinary guideline committee, which included consumers, was appointed to refine the scope of the guidelines and form recommendations based on systematic reviews of the evidence.
The purpose of the guidelines is to provide recommendations for an agreed standard of practice for the diagnosis and management of people with dementia in Australia. The guidelines address care of people with dementia in community, residential care and hospital settings and are relevant to medical practitioners, nurses, aged care workers and allied health professionals. They are also useful for researchers, educators, policy makers and decision makers.
Main recommendations The guidelines provide 109 recommendations, categorised as evidence-based recommendations (formulated after a systematic review of the evidence), consensus-based recommendations (formed where a systematic review has failed to identify sufficient studies to inform a recommendation) and practice points (based on expert opinion). Key recommendations prioritised by the committee for implementation are presented in the Box.
Box Key recommendations identified by the committee as priorities for implementation*
Changes in management Delays between the onset of symptoms and diagnosis of dementia are widely acknowledged.7 There is currently a lack of information regarding the benefits and harms of population screening for cognitive impairment.8 The guidelines focus on timely diagnosis by recommending that symptoms are explored when first raised by the person experiencing the symptoms and/or their carer or family and are not dismissed as “just a part of ageing”. People with a possible diagnosis of dementia should be referred to a service or specialist in dementia diagnosis (eg, a memory clinic, neurologist, geriatrician or psychiatrist).9
The guidelines recommend a systematic approach to diagnosing dementia; this includes patient and informant history taking, cognitive assessment, medication review, blood tests and computed tomography or magnetic resonance imaging to exclude other cerebral pathologies. The use of single-photon emission computed tomography is not recommended.10 More recent diagnostic techniques using biomarkers (including the use of positron emission tomography) are not recommended for routine use.11
Clinical cognitive assessment should include examination with a screening tool with established reliability and validity. A number of tools are recommended in the guidelines including the Mini-Mental State Examination. The Kimberley Indigenous Cognitive Assessment tool for remote living Aboriginal and Torres Strait Islander populations and the Rowland Universal Dementia Assessment Scale for people from non-English speaking backgrounds are recommended for use where illiteracy, language or cultural considerations deem their use appropriate.
The committee recommended review of people with mild cognitive impairment after 6–18 months. This recommendation was formulated based on an existing systematic review which found that, in a clinic setting, the annual conversion rate of mild cognitive impairment to Alzheimer disease was close to 10%.12
At the time of diagnosis of dementia, and at regular intervals subsequently, assessment should be made for medical comorbidities and key psychiatric features associated with dementia, including depression, to ensure optimal management of coexisting conditions.
The guidelines recommend comprehensive role-appropriate dementia-specific training for health and aged care professionals. Such training can improve the quality of life for the person with dementia13 and reduce restraint use14,15 by teaching staff how to understand a person with dementia and to read body language and behaviour as signs of communication and respond appropriately. The evidence supports training models that focus on understanding symptoms and behaviours and providing person-centred care.16
The guidelines recommend a greater emphasis on promoting and maintaining independence through activities of daily living, continuing exercise and supporting the person to pursue activities that are meaningful and of interest to them. Adequate nourishment and hydration through maintaining a healthy, balanced diet should be encouraged and supported. People with dementia should have their weight monitored and nutritional status assessed regularly. Oral health is important17 and, on diagnosis, the medical practitioner should recommend that the person with dementia (or their carer[s] or family) make an appointment to see a dentist to conduct an assessment and formulate a long-term treatment plan.
Acetylcholinesterase inhibitors and memantine are routinely prescribed for people with mild to moderate Alzheimer disease in order to delay functional decline, and the guidelines support their use.18 Based on recent evidence, the guidelines also state that any one of the three acetylcholinesterase inhibitors (donepezil, galantamine or rivastigmine) could also be considered for people with dementia with Lewy bodies, Parkinson disease dementia, vascular dementia or mixed dementia.19,20,21,22 The combination of an acetylcholinesterase inhibitor and memantine could be considered for managing the symptoms of functional decline for people with moderate to severe Alzheimer disease.23 Clinicians should be aware that not all of these indications are reimbursed under the Pharmaceutical Benefits Scheme and that acetylcholinesterase inhibitors are associated with a number of side effects including (but not limited to) nausea, vomiting, diarrhoea, dizziness, increased urinary frequency, falls, muscle cramps, weight loss, anorexia, headache and insomnia.24 Acetylcholinesterase inhibitors should not be prescribed for people with mild cognitive impairment.25
If people with dementia cannot express their needs through communication, they may communicate through their actions and behaviour. The guidelines recommend the need to understand the person and symptoms via a comprehensive assessment and analysis of the behaviour (eg, antecedent [triggers], behaviour description and consequence [ABC approach]). The objective measurement of behavioural and psychological symptoms of dementia should be undertaken using tools to monitor the type and patterns of behaviours. The provision of care that is consistent with the ten principles of dignity in care26 and non-pharmacological interventions should be implemented before considering use of medications. Non-pharmacological interventions should ideally involve engagement in activities that are enjoyable for the person with dementia and individualised support. Working with the carer and family to build skills in managing symptoms, communicating effectively and problem solving have been shown to be effective in reducing symptoms.27,28
A number of pharmacological treatments are recommended to complement non-pharmacological approaches when the person with dementia is severely distressed or there is an immediate risk of harm. Analgesics are recommended when pain is suspected.29 A trial of selective serotonin reuptake inhibitors is recommended for agitation; the strongest evidence is for citalopram.30 The role of antidepressants in the treatment of depression in people with dementia is uncertain. Larger trials conducted in people with dementia have not shown benefit (in group data) for antidepressants for treatment of depression per se.31 Nevertheless, the committee considered that those with a pre-existing history of major depression (before developing dementia) who develop a comorbid major depression should be treated in the usual way.
People with Alzheimer disease, vascular dementia or mixed dementias with mild to moderate behavioural and psychological symptoms of dementia should not usually be prescribed antipsychotic medications, owing to the increased risk of cerebrovascular adverse events and death.32 For people with severe symptoms who are distressed or causing distress to others, treatment with an antipsychotic may be offered following a full discussion with the person with dementia and/or their carer(s) or family about the possible benefits and harms. Treatment should be reviewed every 4–12 weeks, considering the need for antipsychotics and possible cessation of medication.
Care for people with advanced dementia should be based on a palliative approach and involve a palliative care service if indicated. Treatment and care should be provided as per the person’s advance care plan.
Carers and families should be included in the planning, decision making and care and management of people with dementia. Carers are often not provided with enough support or adequate training to effectively provide care.33 There is evidence that tailored multifaceted programs involving both the carer and the person with dementia can improve quality of life for both.34 Carers should have access to programs that include education regarding dementia; information regarding relevant services such as respite; information about support organisations such as Alzheimer’s Australia; individualised care management strategies to overcome specific problems; training in providing care and communicating most effectively with the person with dementia; and support regarding coping strategies to maintain their own wellbeing, including stress management.
Specific recommendations from the box mentioned in the article. Note that this sort of uniform criteria and reimbursement does not exist in the U.S.
Box – Key recommendations identified by the committee as priorities for implementation*
Health and aged care professionals should provide person-centred 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 (http://www.dignityincare.org.uk) should be used as the standard by which care is delivered and evaluated.
People with a possible diagnosis of dementia should be offered referral to memory assessment specialists or services for a comprehensive assessment.
The medical practitioner should be honest and respectful and use a gradual and individualised approach when communicating the diagnosis to the person with dementia and their carer(s) and family.
Health system planners should ensure that people with dementia have access to a care coordinator who can work with them and their carers and families from the time of diagnosis.*
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.*
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.
People with dementia living in the community should be offered occupational therapy interventions which should include: environmental assessment and modification to aid independent functioning; prescription of assistive technology; and tailored intervention to promote independence in activities of daily living.*
People with dementia who develop behavioural and psychological symptoms should be offered a comprehensive assessment at an early opportunity by a professional skilled in symptom assessment and management. This should involve their carer(s) and families as appropriate and include; analysis of the behaviours, assessment of physical and mental health, pain or discomfort, side effects of medication, the influence of religious and spiritual beliefs and cultural norms, physical environmental and interpersonal factors, an assessment of carer(s) health and communication style, understanding the behaviour as a form of communication.*
People with Alzheimer’s disease, vascular dementia or mixed dementias with mild-to-moderate behavioural and psychological symptoms of dementia should not usually be prescribed antipsychotic medications because of the increased risk of cerebrovascular adverse events and death.
The person with dementia, their carer(s) and family should be offered respite appropriate to their needs.
Carers and families should have access to programs designed to provide support and optimise their ability to provide care for the person with dementia. Programs should be individualised, multifaceted and delivered over multiple sessions.*
* Note that some recommendations have been shortened in this publication.
This 2006 document makes it very clear that a GP can not diagnose dementia.
Initial screening and assessment
The purpose of initial screening is to identify people who may benefit from more intense assessment—it has the dual purpose of identifying potential need and also minimising the potential drain on resources caused by unnecessary intense assessment processes. Screening is different from case-finding as it refers to action to determine the presence of likely or possible disease in a person without problems or symptoms pointing to the possibility of dementia (Bridges-Webb & Wolk 2003:31). An assessment of dementia not only aims to determine the condition causing the symptoms (whether to rule out dementia, or determine which disease is causing dementia), but also to assess the needs of the person with dementia and their family and carers. Barriers to early diagnosis include a lack of routine screening for dementia and a lack of access to specialty consultative services (Shores et al. 2004). However, many experts are reluctant to advocate a population-based screening program, arguing that there is currently insufficient evidence to justify the resources that would be required to implement routine screening for dementia of people who do not display symptoms using existing standardised assessment tools (Bridges-Webb & Wolk 2003:31). Further arguments against the implementation of a screening program are that there does not currently exist a screening test that can reliably detect dementia in a cost-effective manner before patients develop noticeable symptoms, and secondly that, even if such a test did exist, there is no treatment available that can cure dementia if applied in the pre-symptomatic phase (refer to Box 2.1 for characteristics of an effective population-based screening program). Thus, initial screening and assessment for dementia is generally initiated when a patient or his/her family expresses concern about symptoms, or when the clinician notices changes or signs which may be associated with a dementing illness in the course of their contact with the patient (Bridges-Webb & Wolk 2003:31). This requires that clinicians, in particular general practitioners (GPs), are aware of signs and symptoms that may be associated with dementia and are open to identifying and discussing these with patients and their families if and when they become apparent.
Assessment and screening instruments
A variety of assessment tools exist which may be helpful in screening for, diagnosing and/or monitoring dementia. In the context of dementia, assessment tools are employed for two basic purposes:
1. to screen people for the likely presence/absence of cognitive impairment which may be indicative of dementia
2. for in-depth assessment for the purposes of formal diagnosis, care planning, and monitoring of disease progression or treatment efficacy.
As dementia is a syndrome with several characteristic features (not all of which may be present in any one case), most assessment instruments include separate components, subscales or domains. Few tests are capable of discriminating across all types and levels of dementia. For example, tests that are capable of identifying mild cognitive impairment may not be suitable for differentiating among more advanced stages of dementia and vice versa. Thus, assessment tools are often best used in combination and in the context of other forms of assessment such as clinical interview, informant interview and biological testing (McDowell & Newell 1996:289; Meade & Bowden 2005). A combination of screening tests may be used to increase the rate of diagnosis for those who have dementia, and reduce the likelihood of falsely diagnosing dementia (Flicker et al. 1997, cited in Black et al. 2001), and clinicians are generally encouraged to look for other evidence of symptoms or functional change in everyday life (Meade & Bowden 2005). Diagnosis cannot be made purely on the basis of screening. People who screen positive for cognitive impairment must undergo further clinical evaluation to confirm or reject a differential diagnosis of dementia (Black et al. 2001). Thus, though GPs may often be the first port of call for people who are worried about their own or a loved one’s cognitive functioning, the final diagnosis of dementia is usually made by a neurologist, geriatrician or psychogeriatrician (Wilkinson et al. 2004, cited in Brodaty et al. 2006). Initial assessment/screening tools must achieve a balance between comprehensiveness and clinical utility. Many standardised tools were initially intended to be a component of a battery of tests in the full assessment and diagnosis of dementia. In applying such items and subscales to initial assessment and screening rather than to diagnosis, a balance must be found between minimising test length and complexity, evaluating total cognitive function and maintaining test accuracy (Boustani et al. 2003). In their entirety, these instruments have more in common with diagnostic protocols (discussed below) than screening instruments.
Box from the above document:
Box 2.2: Requirement for use of MMSE and/or ADAS-Cog and CIBIC to access subsidised anticholinesterase medication through the PBS The use of some standard assessment tools is enshrined in administrative requirements of some aspects of Australia’s health and aged care systems. For example, some anticholinesterase medication used in the treatment of mild to moderate dementia, donepezil hydrochloride (Aricept), rivastigmine hydrogen tartate (Exelon), and galantamine hydrobromide (Remilyn), are approved for listing on the Pharmaceutical Benefits Scheme (PBS) for people with Alzheimer’s disease who meet specific criteria (Alzheimer’s Australia 2004).
People who have a diagnosis of mild to moderately severe Alzheimer’s disease are able to access Aricept, Exelon or Remilyn at a subsidised cost through the PBS provided that certain criteria are met. In order to establish eligibility for this subsidy, the client must have a diagnosis of mild to moderately severe Alzheimer’s disease confirmed by a neurologist, psychogeriatrician, psychiatrist, geriatrician or consultant physician, and a written application for subsidised treatment must be made to Medicare Australia. This application must include the results of a baseline Mini-Mental State Examination (MMSE) test, and to be eligible the client must score 10 or higher, and if the score is 25 points or above, the results of a baseline Alzheimer’s Disease Assessment Scale, cognitive subscale (ADAS-Cog), must also be specified. In order to receive continuing subsidised access to the medication beyond the initial six month treatment period, it must be demonstrated that the client has benefited from the pharmacotherapy. The requisite proof of improvement in cognitive function is an increase of at least 2 points from baseline on the MMSE or a decrease of at least 4 points from baseline on the ADAS-Cog for patients with an MMSE baseline score of 25 points or higher (DoHA 2006).
Access to subsidised Aricept, Exelon or Remilyn may be granted to people who score lower than 10 points on the MMSE under the following circumstances, which are non-cognitive factors accepted as limiting the person’s ability to complete the MMSE. These are where the patient (DoHA 2006): - is from a culturally and linguistically diverse background and has limited English language skills - has less than six years of formal education, and/or is illiterate or innumerate - is an Aboriginal or Torres Strait Islander - has an intellectual disability (developmental or acquired), e.g. Down’s syndrome - has significant sensory impairment, despite best correction, which precludes completion of an MMSE test and/or - has prominent dysphasia, out of proportion to other cognitive and functional impairment.
In such cases, access to continuing subsidised pharmacotherapy requires demonstration of improvement in cognitive function, based on a rating of ‘very much improved’ or ‘much improved’ on the Clinician’s Interview-Based Impression of Change (CIBIC) scale, which must be completed by the same clinician who initiated treatment (DoHA 2006).
As at April 2006, other tests cannot be used to demonstrate initial or ongoing eligibility for PBS-subsidised pharmacotherapy.
From page 19
Diagnostic protocols
Diagnostic protocols are standardised forms of major clinical assessments that can be used in diagnosing dementia. They generally include clinical interview (e.g. covering patient history and current situation), standardised testing of cognitive performance, and a series of diagnostic algorithms to guide differential diagnosis. They tend to be time-consuming and are required to be administered by a specialist who is qualified to make a formal diagnosis of dementia. Examples include (McDowell & Newell 1996:332–3): - Structured Interview for the Diagnosis of Dementia - British Present State Examination - American Diagnostic Interview Schedule - Geriatric Mental State Examination - Canberra Interview for the Elderly - Comprehensive Assessment and Referral Evaluation.
