1.1.1 The clinic offers specialist assessment of dementia and cognitive decline.

1.1.2 The clinic employs a multidisciplinary team.

Guidance: When required, a comprehensive and multidisciplinary assessment may be offered either via 1) the multidisciplinary team employed within the clinic, or 2) cross-referrals within the established referral networks (e.g., neuropsychologists, nurses, allied health professionals) in the local catchment area. 

1.1.3 The service is able to provide general advice and support after the diagnosis as well as post-diagnostic support in the form of evidence-based programs, either at the clinic or via timely referral to other services and allied health support.

Guidance:  Please refer to Section 13 “Support and advice” for further guidance around the provision of post-diagnostic care.

1.1.4 The service offers education on dementia to general practitioners and the general public.

2.1.1 Face-to-face appointments

2.1.2 Appointments via Telehealth*

Guidance: Lived experience experts particularly endorse this option when they cannot get to the clinic easily. Telehealth includes telephone, videoconferencing or other communication media that permit remote assessments and care.

2.1.3 A roving clinical service

Guidance:  A roving clinic describes a clinical service that operates at different locations to offer easily accessible specialist services in mostly regional and remote areas.

Memory and Cognition Clinics are encouraged to consider how to improve their service accessibility for people in the regional and remote areas within their catchment area.

It is suggested that a face-to-face appointment with a client in the regional or remote area is followed-up with a Telehealth appointment, if possible and appropriate.

Memory and Cognition Clinic has clear guidelines for accepting referrals and a framework for prioritising the accepted referrals.

Guidance: For example, clinics may choose to decline a referral if the cognitive problems are clearly within the context of a psychiatric disorder, non-progressive brain disease with no evidence of decline, traumatic brain injury and/or alcohol dependence, etc.

3.2.1 GP or a medical specialist

Guidance: This is the preferred referral source.

3.2.2 Self-referrals

Guidance: The GP’s endorsement of the self-referral or general involvement of the GP should be encouraged to ensure ongoing support after the Memory and Cognition Clinic assessment.

3.2.3 Other health professionals

Guidance: This may include, but is not limited to, nurse practitioners, allied health and the Aged Care Assessment Team (ACAT).

Triggers for a Memory and Cognition Clinic assessment include:

Guidance: Generally, a Memory and Cognition Clinic assessment would not be indicated for clients who have received a prior dementia diagnosis and for whom their dementia has progressed well past the early/mild stage, their dementia subtype was considered clear, and for which there are no novel referral questions.

Clients who present with non-dementia related cognitive decline (e.g., which can be clearly associated with an acute stroke or traumatic brain injury) may be referred on to a different diagnostic service.

However, accepting these clients is left up to the discretion of the Memory and Cognition Clinic. 

3.3.1 A client presents with a potential diagnosis of young onset dementia

3.3.2 A differential diagnosis of dementia (e.g., specific syndrome) is required.

3.3.3 A client shows a complex symptom presentation.

3.3.4 Longitudinal tracking of cognitive problems at potentially prodromal stages of dementia / MCI is required.

3.3.5 A client presents with behavioural and/or personality changes.

Guidance: This includes behavioural and psychological symptoms of dementia (BPSD) such as, but not restricted to, depressive symptoms, anxiety, apathy, agitation, sleep problems, psychosis irritability and wandering.

3.3.6 There is evidence of risk factors for dementia in the presence of subjective cognitive complaints.

Guidance: Examples of risk factors may include a strong family history of dementia, diabetes, history of smoking, heavy alcohol use or other substance use.

3.3.7 There is evidence for rapid cognitive decline.

3.3.8 A client presents with progressive cognitive problems and / or progressive cognitive problems are reported by a family member, care partner or other informant close to the client.

Guidance: This may include subjective memory complaints.

Guidance: This includes information that is required to assess the appropriateness of a referral, as well as prioritisation. The information can be received from various sources, including the referring health professional, client, and care partner.

3.4.1 Demographic information

3.4.2 Client’s preferred spoken language, language abilities, and the need for an interpreter

3.4.3 Main symptoms

3.4.4 Progression of symptoms (e.g., rapid decline, no decline noticed)

3.4.5 Medical and psychiatric history

3.4.6 A list of current medications

3.4.7 Family history

3.4.8 Presence of behavioural and / or psychological symptoms

Guidance: This includes BPSD such as, but not restricted to depressive symptoms, anxiety, apathy, agitation, sleep problems, irritability and wandering.

3.4.9 Blood test results

Guidance: Core blood tests are undertaken ideally within 3 months or within a maximum of 12 months prior to referral or at the time of the diagnosis.

This also forms a Clinical Quality Indicator for the ADNeT Clinical Quality Registry.

3.4.10 Imaging results

Guidance: Structural neuroimaging is completed ideally within 3 months or within a maximum of 12 months prior to referral or at the time of the diagnosis.

This also forms a Clinical Quality Indicator for the ADNeT Clinical Quality Registry.

3.4.11 Reports by other specialists or previous investigations

3.4.12 Information about safety concerns for the client or family/ carer

3.4.13 Results of cognitive screening

3.4.14 Information regarding the clients support network

Guidance: This may include information about the client’s living situation (e.g., living alone, home care), as well as information about the actual and potential carer burden.

3.4.15 Hearing status

Guidance: This includes information about the need for hearing aids or other hearing impairments that might affect the assessment.

3.4.16 Vision

Guidance: This includes information about the need for glasses or other visual impairments that might affect the assessment.

Under the following circumstance a referral is regarded as “high priority”:

Guidance: Any of the criteria from 3.5.1 to 3.5.7 in isolation could be considered sufficient to define the client as "high priority". The precise criteria for a “high priority client” are up to the discretion of the Memory and Cognition Clinic staff and may change depending on evolving circumstances and the capacity of the clinic. Conversely, the definition of a "routine priority" client may similarly evolve.

3.5.1 Safety concerns in the current living situation (for client or family/carer)

3.5.2 Suspected self-neglect or abuse

3.5.3 Clients who care for others (e.g., parents of young children, carers of a person with disability, etc.)

3.5.4 Rapid cognitive decline

3.5.5 Significant carer burden and stress

3.5.6 Other safety concerns (e.g., driving, depression symptoms)

3.5.7 Clients with a suspected diagnosis of young onset dementia

For high priority clients, Memory and Cognition Clinic provides an initial appointment:

3.6.1 Within 30 days of referral *

Guidance: Lived experience experts highlighted that an appointment should be provided within a month after they first contact the Memory and Cognition Clinic.

3.6.2 Ideally, within 14 days of referral

3.6.3 Within 90 days of referral *

This also forms a Clinical Quality Indicator for the ADNeT Clinical Quality Registry.

3.6.4 Within 60 days of referral

3.6.5 Ideally, within 45 days of referral

4.1.1 Types and purpose of the assessment

4.1.2 Waiting times

Guidance: If a booking has not been made, the Memory and Cognition Clinic staff should provide approximate waiting times to the clients with a brief explanation of potential delays. Staff members should emphasise to the clients that the waiting times depend on a variety of factors, and, thus, can vary from the suggested ones.

4.1.3 Assessment costs and duration

4.1.4 General information relevant to the appointment.

Guidance: This includes information about:

• The names of staff members the client will see on the day
• Location and parking or public transport access (e.g., map)
• What to bring for the appointment (especially glasses, hearing aids, and medication)

4.2.1 Memory and Cognition Clinic can provide a referral to an experienced counsellor, in case the client or care partner expresses distress during the waiting time for the initial assessment and requires support.

5.1.1 Memory and Cognition Clinic staff arrange an interview with the client to identify their needs, hopes, and wishes for the Memory and Cognition Clinic assessment independently from others (e.g., separate interview from the carer).

Guidance: This should not occur if the client declines the opportunity and wishes for their carer/informant to remain with them for the duration of the interview.

5.1.2 Memory and Cognition Clinic staff arrange an interview with someone who knows the client well (informant).

Guidance: This only occurs if the client consents to the clinic staff speaking with the informant, who was preferably identified by the client. This interview should also identify the family’s / carer's hopes and wishes for the Memory and Cognition Clinic assessment.

5.2.1 Demographic information

Guidance: This includes information about the client’s place of birth, spoken languages, education, relationship status, and employment.

5.2.2 Detail of the nature, onset, and progress of cognitive complaints

5.2.3 Medical and psychiatric history

Guidance: Details of conditions associated with cognitive impairment are particularly pertinent. This may include but is not limited to: vascular risk factors, head injury, neurological disorders, depression, and thyroid abnormalities.

5.2.4 Possible risk factors

Guidance: Examples of risk factors may include a strong family history of dementia, diabetes, history of smoking, and heavy alcohol or other substance use.

5.2.5 Presence of depression or anxiety symptoms

Guidance: Where possible, an assessment of depression should be completed using a standard screening tool in addition to the clinical interview.

5.2.6 Presence of psychotic symptoms including hallucinations and delusions

Guidance: It is also recommended to screen for the presence of other BPSD such as, but not restricted to, apathy, agitation, irritability, and wandering.

5.2.7 Sleep disturbance

Guidance: Where possible, a sleep assessment should be completed using a standard screening tool in addition to the clinical interview.

5.2.8 Nutrition / diet

Guidance: Where possible, a malnutrition risk assessment should be completed using a standard screening tool and, if indicated, a referral made to a dietitian-nutritionist with expertise in dementia and preferably an Accredited Practising Dietitian (APD).

5.2.9 Mobility and falls

5.2.10 Current medications

Guidance: Staff is generally encouraged to confirm the information on current medications provided at the time of referral and obtain any missing information. Staff is further encouraged to discuss the ability to manage medications safely and review the use of any dosing aids.

5.2.11 Family History

Guidance: Particularly relevant is the family history of mental health issues, neurological disorders, dementia, as well as the corresponding ages of onset.

5.2.12 Client's social support

5.2.13 Client’s everyday functioning

5.2.14 Driving

5.2.15 Legal issues

Guidance: This point pertains only to potential legal issues that may influence the assessment and the post-diagnostic care-plan. Informed consent should be sought for the assessment and development of a care-plan and, if needed, the capacity of the client with regard to this should be tested (see 7.2.8). Clinic staff should inquire about the presence of a current substitute decision maker. Other forms of capacity, including testamentary capacity, would generally not be assessed during the clinical interview.

5.2.16 Advance care-plans

5.2.17 Physical activity engagement and routine

6.1.1 Multiple cognitive domains are tested.

Guidance: Cognitive testing needs to be tailored to the client’s cultural and educational backgrounds and to their presenting symptoms. 

Assessments by a neuropsychologist should be considered as required (see section 7.2 for further guidance around the circumstances that may warrant a neuropsychological assessment).

This also forms a Clinical Quality Indicator for the ADNeT Clinical Quality Registry.

6.1.2 A person’s ability to undertake personal and instrumental activities of daily living (IADL) are assessed.

Guidance: Under some circumstances, an occupational therapist with expertise in dementia is consulted to conduct a standardised performance-based assessment to clarify domains and extent of functional impairment. These circumstances include but are not limited to 1) a client presents with mild functional impairment and good cognitive test scores; 2) reliable information on the client’s IADL is not available.

This also forms a Clinical Quality Indicator for the ADNeT Clinical Quality Registry.

6.1.3 Result  of all investigations including neuroimaging should be considered when making the diagnosis.

7.1.1 Specialised neuropsychological assessment for diagnosis

Guidance: This includes but is not limited to the assessment of multiple cognitive domains as well as mood, behaviour, sleep, and everyday functioning.

7.1.2 Behavioural assessments

Guidance: While specialised neuropsychological assessment includes a general assessment of behaviour changes via questionnaires and/or clinical interview, a behavioural assessment is a more detailed, individualised breakdown of the client’s BPSD including contexts, triggers, consequences (such as the A-B-C model of Antecedent, Behaviour, Consequence). A behavioural assessment informs post-diagnostic intervention strategies with individualised recommendations and education for the client, family, carers, and allied health professionals.

7.1.3 Non-pharmacological post-diagnostic support

Guidance: This may include evidence-based cognitive interventions and cognitive or memory strategies.

7.2.1 Where there is diagnostic uncertainty or for the purpose of differential diagnosis

7.2.2 If a client presents with complex or unusual symptom pattern

7.2.3 In the presence of functional decline despite ‘normal’ scores on gross screening tools, especially if the client has a high level of education

7.2.4 If a client presents with pronounced speech and language difficulties (e.g., suspected primary progressive aphasia)

Guidance: In many cases, speech pathology diagnostic assessment should be preferred over neuropsychological testing. Consultation with a speech-language pathologist is generally encouraged when a client presents with significant language difficulties.

Speech Pathology diagnostic assessment should, therefore, be particularly considered when a detailed testing of language functions (e.g., semantic, phonological, syntactic functioning) is required; for differential diagnosis; in the presence of re-emerging motor speech vs. phonological difficulties, or social communication changes and eating/swallowing/hyperorality changes.

7.2.5 If a client presents with suspected young onset dementia

Guidance: Young onset dementia is defined here as a diagnosis of dementia in clients under the age of 65. It may have highly varied and complex symptom presentation that does not necessarily include memory decline.  

7.2.6 If there is a need to understand the cognitive profile to inform treatment and management

Guidance: This may include determining whether decline in cognitive domains (such as memory, executive functioning, or language) is sufficient to interfere with the client’s adherence to treatment or compromise the likely success of treatment. A detailed neuropsychological profile may be informative regarding the client’s cognitive strengths and weaknesses, which in turn can inform management plans.

7.2.7 If a client presents with pronounced behavioural changes

Guidance: This may include apathy, suspected behavioural variant frontotemporal dementia, etc.

7.2.8 If there is a need to conduct a specific capacity assessment (e.g., capacity to make informed decisions on finances, treatment, care-plan, placements into residential aged care)

Guidance: This standard refers to situations where more information about cognitive abilities would be beneficial to determine the client’s capacity for these specific forms of capacity.

7.2.9 If a client presents with subtle cognitive changes

Guidance: This may include subjective cognitive complaints and mild cognitive impairment. In this instance, neuropsychological assessment may be required, as it is more sensitive to subtle changes in cognition than cognitive screening measures.

8.1.1 Where there is diagnostic uncertainty and/or detailed diagnostic information is required, advanced neuroimaging, e.g., Positron Emission Tomography (PET) is conducted.

Guidance: To be considered based on out-of-pocket costs for the client, expertise of staff, and access.

8.1.2 Lumbar puncture is undertaken for more complex cases, including the use of CSF markers of amyloid and tau pathology.

8.1.3 Testing of common genetic polymorphisms and/or mutations associated with dementia onset and/or progression can be conducted where considered to provide additional diagnostic value.

Note: Once the validity and prognostic utility have been demonstrated for Australian clinics and appropriate training is provided to clinicians, obtaining blood-based biomarkers may form part of the diagnostic work-up.

Interdisciplinary case-conferences are conducted:

9.1.1 For complex cases with an unclear diagnosis

9.1.2 For every client

9.2.1 After the initial assessment

9.2.2 After the follow-up session, as required

9.3.1 Assessment results (e.g., cognitive test results)

9.3.2 Imaging results

9.3.3 Consensus diagnosis

9.3.4 Medical prognosis

9.3.5 Early support

Guidance: The immediate support needs of the client and care partner should be identified during the case-conference.

9.3.6 Client's strengths, weaknesses, and available resources

9.3.7 Possible care strategies for the client

9.3.8 Pharmacological intervention options

9.3.9 Risk factor modification

9.3.10 Driving capabilities

9.3.11 Risk of abuse

9.3.12 Counselling needs

9.3.13 Education needs

9.3.14 Suitability for pharmacological and non-pharmacological research studies

9.3.15 Cognitive intervention options

9.3.16 Legal and financial capabilities

Recommendation developed during the Delphi process of people with the lived experience of dementia and their care partners.

10.1.1 Memory and Cognition Clinic clinicians inform the client of the diagnosis as soon as all the investigations are completed. *

Guidance: Dementia Lived Experience Experts especially stressed the importance of providing the information in both verbal and written forms.

10.1.2 When communicating the diagnosis, the preferred terms are “dementia” and “mild cognitive impairment”.

Guidance: Stakeholders involved in the Delphi process preferred the use of these terms, as opposed to the DSM-5 “major and minor cognitive disorder”. Communicating the dementia subtype is encouraged, at the discretion of the clinician. 

10.1.3 If the diagnosis of dementia is uncertain, clients are given an easy-to-understand written explanation of the results and the next steps.*

10.1.4 Memory and Cognition Clinic offers a lay person summary of the client’s test result reports.*

Guidance: This would ideally include scan reports, neuropsychological reports, biomarker analyses, etc. A copy of the test results reports may be provided to the client upon request.

10.1.5 The appointment during which the diagnosis is communicated is long enough for the client to process the information and ask questions. *

Guidance: The length and format of the appointment(s) should be determined based on the clinical judgement and may vary according to the client’s preference. Clinicians should consider providing an opportunity for a break within the appointment or offering an additional appointment to continue discussing the diagnosis where required, especially if the client seems confused or distressed.
More recommendations about the feedback session during which the diagnosis is communicated can be found in section 12 “Feedback and Follow-up”.

11.1.1 The assessing clinician confirms if the client wishes to know the diagnosis.

Guidance: The client should be informed about the benefits of learning their diagnosis, including how their quality of life may be improved.

11.1.2 If a client does not wish to know the diagnosis, the medical practitioner and other Memory and Cognition Clinic staff respect that wish as much as possible.

Guidance: Wherever possible, clinicians should seek to understand the client’s preference and act in accordance with it. If the client does not wish to know their diagnosis, clinicians should use their clinical judgement to determine whether the client’s family/care partner should be informed of the diagnosis, considering factors such as autonomy, capacity, confidentiality, and risk/safety.
The clinician should aim to provide education to reduce the stigma of the diagnosis and outline the benefits of knowing the diagnosis to ensure that the client receives all the needed support.

11.1.3 The assessing clinician asks the client if and with whom the outcome of the assessments should be shared.

11.1.4 If the client does not have capacity to decide whether to receive their diagnosis, the decision of their proxy decision maker (known as a Person Responsible in most states) should be respected and further discussed over time.

Guidance: Where possible, the clinician should provide education to outline the benefits of knowing the diagnosis. 

Guidance: Recommendations for the follow-up sessions apply after a diagnosis of dementia or MCI classification is established and may apply for clients with subjective cognitive complaints, if required (e.g., monitoring risk factors).

12.1.1 A separate feedback session to communicate or discuss the diagnosis, start on the care-plan, and organise a care coordinator (if available) *

Guidance: In some cases, two shorter feedback sessions may be necessary to allow sufficient time for the client to process the diagnosis. Please refer to Section 10 for more guidance.

12.1.2 A minimum of one post-feedback follow-up session to assess the status of the care or referral plan's implementation *

12.1.3 If necessary, at least one additional follow-up session to provide further support and to monitor and adjust the care-plan

The clinical specialist who assessed the client has a leading role in the initial post-diagnostic process (i.e., feedback session and care-plan development).

Guidance: This may include medical specialist, nurses, and allied health professionals.

12.3.1 The feedback session is conducted as soon as possible after the final diagnostic assessment.

Guidance: Ideally, a feedback session is conducted within 4 weeks of the initial assessment, provided that all assessments have been completed and the results of all investigations are received.

This includes the assessing clinicians and the client and may also include the following:

12.4.1 Support person or care partner (with client’s consent)

12.4.2 Allied health professionals

12.5.1 Memory and Cognition Clinic follows up all clients with a diagnosis of dementia at least once every 12 months and thereafter based on the client’s need for review.

Guidance: Follow-ups should be based on the client’s needs. Ideally, they are offered within the 12 months after the diagnosis, particularly if the client cannot be followed-up and supported by other clinical services.

Clinics with limited resources, who are unable to offer follow-up sessions for all clients with an established dementia diagnosis, should ensure an appropriate follow-up mechanism by linking the client into appropriate services.

12.5.2 Memory and Cognition Clinic follows up all clients with a diagnosis of MCI at least once every 12-18 months based on the clinical judgement and thereafter based on the client’s need for review.

This also forms a Clinical Quality Indicator for the ADNeT Clinical Quality Registry.

Directly after the diagnosis, Memory and Cognition Clinic provides support and advice to enable clients to better understand, adjust to, and live well with their diagnosis. This includes:

1. Educating the client about their diagnosis or opportunities for risk reduction with the aim of reducing stigma;
2. Developing a clear post-diagnostic care-plan;
3. Providing information about and referring to support services with dementia expertise, depending on their diagnosis and need (e.g., Dementia Australia, legal services, social worker, relevant community health services);
4. Providing or referring to evidence-based programs and interventions.

The following tables outlines services and items that should be ideally:

1. Discussed with the client;
2. Provided at the clinic; or
3. Offered via referral to external services.

13.1.1 Memory and Cognition Clinic provides written post-diagnostic support recommendations to the client, the client’s GP, the referring medical practitioner (if other than the GP) and the post-diagnostic support service(s), as applicable *

Guidance: If a client was not referred by a GP, Memory and Cognition Clinic should encourage the client to involve a GP to ensure ongoing support after the Memory and Cognition Clinic assessment.  

13.1.2 The client, their care partner(s), and all assessing clinicians (e.g., medical practitioner, neuropsychologist) are actively involved in the client's care-planning.

13.1.3 For clients with MCI or early signs of dementia, Memory and Cognition Clinic provides personalised risk reduction information to the client, GP, or other referring medical practitioner, if required.

Guidance: Such information may also be provided to clients with subjective cognitive complaints, if required.

13.1.4 Memory and Cognition Clinic provides support and advice to clients they did not initially assess and diagnose.

Guidance: This may apply to clients with a recent diagnosis, who, for example, have recently moved into the catchment area and seek advice on ongoing support, or clients with a recent diagnosis, who were unable to access relevant advice and information about local post-diagnostic support.

13.1.5 Memory and Cognition Clinic assures the client and their family / care partner(s) that further advice and assistance can be sought after the discharge.

Guidance: For example, this may include information about local support services with dementia expertise.

13.2.1 Memory and Cognition Clinic has active relationships with relevant support services to refer as appropriate (e.g., support group for carers).

13.2.2 Memory and Cognition Clinic offers follow-up phone calls to assist the client with the care-plan implementation. *

13.3.1 Education about dementia (e.g., psychoeducation) provided to the client, family, and carers *

13.3.2 Carer support*

13.3.3 Beneficial lifestyle changes*

13.3.4 Behaviour management interventions

13.3.5 Risk reduction education

13.3.6 Management of safety concerns

13.3.7 Written personalised strategies to help the client live with dementia day-to-day, e.g., use of calendars, medication boxes and phone reminders *

13.3.8 Involvement in research and clinical trials (where appropriate)

13.3.9 Recruitment into the ADNeT Clinical Quality Registry (for eligible clients)

Guidance: This only applies for Memory and Cognition Clinics that participate in the ADNeT Clinical Quality Registry. Click here for further information.

Where appropriate, these services include:

13.4.1 Provision of psychological support (e.g., management of depression / anxiety) *

13.4.2 Nursing Support

Guidance: This may include care coordination.

13.4.3 Occupational therapy

13.4.4 Speech and language therapy

13.4.5 Group based programs focused on improving well-being (e.g., Day Centres with leisure activities, Meeting Centre Support Programs, etc.) *

13.4.6 Dietetic advice

Guidance: Provided by a dietitian with expertise in dementia, preferably an Accredited Practising Dietitian (APD).

13.4.7 Exercise programs

Guidance: Provided by an exercise physiologist or physiotherapist with expertise in dementia.

13.4.8 Provision of interventions for poor sleep-wake functioning (e.g., Cognitive Behaviour Therapy, sleep hygiene, interventions to treat obstructive sleep apnoea)

13.4.9 Home-based multidisciplinary reablement programs

13.4.10 Evidence-based cognitive interventions (e.g., computerised or memory strategy training) via face-to-face appointments or via Telehealth

Guidance: Dementia Lived Experience Experts particularly endorse the option of Telehealth, if they cannot get to the service easily.

13.5.1 Driving assessments

13.5.2 Dementia Australia

13.5.3 Community Care Services *

13.5.4 Legal and financial counselling

14.1.1 Medication review (e.g., where medications may potentially contribute to cognitive impairment)

14.1.2 Dementia specific medications

14.1.3 Pharmacological interventions for BPSD

Guidance: BPSD include but are not restricted to: depressive symptoms, anxiety, apathy, agitation, sleep problems, psychosis, irritability, and wandering.