Dementia in Australia: Clinical recommendations post-diagnosis
David Foxe and Mirelle D'Mello contributed equally to the work.
Abstract
The delivery of a dementia diagnosis, the information provided, and the practical advice and support arranged can have a long-lasting impact on patients and their families and deserves attention equal to that given to the assessment and investigation process. Patients and their families need a constructive yet sensitive conversation about the nature and cause of their difficulties, communicated in plain language, and tailored to their main concerns and needs. This conversation should lead to the provision of high-quality, easily accessible information. Following this, clinicians may wish to consider broaching the following dementia topics: (1) pharmacological and non-pharmacological interventions, (2) connection and integration with relevant organisations, (3, 4) application for formal support services and engagement with support teams, (5) safety in the home, (6, 7) financial planning, guardianship and legal matters, (8) driving eligibility, (9) support and education resources to family carers and (10) research initiatives and genetic information. Addressing these topics will contribute to improved disease management, which is likely to improve the dementia journey for the patient, their carer(s), and family.
Practice Impact
This article serves as a comprehensive guide for Australian primary and tertiary health-care clinicians involved in dementia diagnostics and post-diagnosis care. It provides up-to-date practical information, including relevant websites and services in both Australia and internationally. Additionally, it features a Dementia Resources Guide booklet (Appendix S2) for clinicians to share with patients.
1 INTRODUCTION
Providing patients with a timely and accurate dementia diagnosis can be challenging but is essential to ensuring appropriate treatment and care (Table 1).1 A diagnosis provides an explanation for the presenting symptoms, which may bring a sense of relief to patients and their families, easing the anxiety and uncertainty surrounding the condition. The success of this process, however, relies on effective communication skills so that the implications of the diagnosis are provided in an empathetic, sensitive and accessible manner that is tailored to the patient's specific needs.
| We are aware that the choice of words used to discuss or write about dementia holds immense influence over how people living with dementia are perceived and treated within our community. In this article, we have used the term ‘patient’ for individuals living with dementia as this article is written for clinicians within a clinician-patient context. Furthermore, we have referred to the support person, most commonly the partner, as the family carer. We consider close friends and neighbours engaged in supporting the patient to be part of the family construct. Below are terminologies recommended by Dementia Australia |
| Preferred terms when referring to a person with dementia: |
| A person/people with dementia |
| A person/people living with dementia |
| A person/people with a diagnosis of dementia |
| Preferred terms that carers, family and friends may be referred to as: |
| Living alongside (someone/a person/my partner/my mother) who has dementia |
| Living with/caring for/supporting a person who has dementia |
| Living with the impact of dementia |
- Note: Terminology taken from Dementia Australia (website accessed on 21 August 2023).
These discussions require sufficient time to address the patient's and their family's priorities and needs, considering the specific diagnosis and stage of illness. While no clinically meaningful disease-modifying treatments are currently available for dementia,2, 3 patients and their families should not be left feeling hopeless or unsupported after receiving the diagnosis. It is important to include, or at least introduce for future discussion, key information and practical tips on managing the condition. The discussion may include information about primary and secondary symptoms relevant to the diagnosis (e.g., cognition, behaviour, motor and communication), possible interventions to optimise the quality of life for both the patient and family carer(s) and details on how and where to access additional support and services.
Currently, guidance on how to obtain this information in Australia is lacking, particularly for young-onset dementia (age of symptom onset <65 years).1, 4, 5 Drawing from our clinical experience, this article offers recommendations and resources for post-diagnostic care, addressing both younger- and older-onset dementia populations in Australia.
2 COMMUNICATING THE DIAGNOSIS
In Australia, it is a fundamental right for all patients, including those living with dementia, to be informed about their diagnosis. It is the responsibility of the clinician, however, to assess and respect the patient's preferences regarding the amount and timing of information they wish to receive.6 Ideally, the disclosure of the diagnosis will take place in a joint meeting with a family carer, allowing sufficient time to sensitively explain the complexities of the diagnosis in a clear and easily understandable manner. Using lay language and explicit terms to describe the specific subtype of dementia is particularly important during initial feedback consultations. Common misunderstandings, such as distinguishing between dementia and Alzheimer's disease, may need to be addressed. When relevant, patients and their families will need sufficient and reliable information to understand less common dementia types, such as Lewy body and frontotemporal dementia. Additionally, clarifying possible terminologies used to describe clinical presentations (i.e., syndrome) and underlying pathological processes (e.g., aetiology) may be necessary to ensure a comprehensive understanding (e.g., differentiating posterior cortical atrophy from Alzheimer's pathology or explaining the convergence between the non-fluent variant of primary progressive aphasia and frontotemporal lobar degeneration).
Given the complexities of dementia and its associated changes, patients and their families may struggle to fully process and comprehend the provided information. Consequently, a follow-up consultation may be required to address any unanswered questions or concerns. Providing patients and their designated family carer(s) with reliable information about the specific subtype of dementia will be immensely helpful for future reference. These resources can be taken home and reviewed at their convenience (Rf. Table 2; Appendix S2).
| Australian and international organisations | |||
|---|---|---|---|
| Aus | Int. | ||
| Alzheimer's disease (AD) and other dementias (including vascular dementia) | |||
| Dementia Australia | https://www.dementia.org.au/ | ✓ | |
| Alzheimer's Disease International | https://www.alzint.org/ | ✓ | |
| Alzheimer's Association | https://www.alz.org/global | ✓ | |
| Lewy body dementia (DLB) | |||
| The Lewy Body Society | https://www.lewybody.org | ✓ | |
| Lewy Body Dementia Association | https://www.lbda.org | ✓ | |
| Frontotemporal dementia (FTD) | |||
| The Association for Frontotemporal Degeneration | https://www.theaftd.org/ | ✓ | |
| The Australian Frontotemporal Dementia Association | https://theaftd.org.au/ | ✓ | |
| Parkinson's disease (PD) and Parkinson-plus syndromes (PSP, CBS, MSA) | |||
| Parkinson's Australia | https://www.parkinsons.org.au | ✓ | |
| Fight Parkinson's | https://www.fightparkinsons.org.au/ | ✓ | |
| PSP Australia | http://www.psp-australia.org.au/default.html | ✓ | |
| Multiple System Atrophy | https://www.multiplesystematrophy.org/ | ✓ | |
| Motor neuron disease (MND) | |||
| MND Australia | https://www.mndaustralia.org.au | ✓ | |
| Fight MND | https://fightmnd.org.au/ | ✓ | |
| Aphasia related dementias | |||
| The Australian Aphasia Association | https://aphasia.org.au/ | ✓ | |
| Aphasia Centre of California | https://aphasiacenter.net/ | ✓ | |
| Australian Aphasia Rehabilitation Pathway | https://www.aphasiapathway.com.au/ | ✓ | |
- Note: Websites accessed on 21 August 2023. Additional organisations and websites are provided in Table S2.
- Abbreviations: Aus, Australian; Int., international.
When describing the diagnosis, it is crucial to communicate honestly and empathetically, explaining the meaning of the diagnosis and its likely impact on various aspects, including symptom progression, everyday independence and survival. Although specific timeframes, such as when full-time care may be needed, are difficult to predict, it is essential to (eventually) prepare the patient and their family for potential later-stage developments of the disease. The interventions and support discussed below can help delay certain events, such as transitioning to residential care. Considering the presence of cognitive deficits in dementia, information needs to be presented in an easily understood manner adapted to the patient's current cognitive function. Checking their comprehension and repeating information, when necessary, is helpful. Written materials for later review will also facilitate understanding and serve as a valuable resource. Patients with reduced insight into their cognitive and behavioural problems may require sensitive handling to avoid argumentative or angry responses.
3 AFTER THE DIAGNOSIS: TEN GENERAL RECOMMENDATIONS
A diagnosis of dementia is a life-changing event that is likely to initiate a number of questions. It is important for clinicians to provide the patient and their family adequate time to process the diagnosis, offer follow-up discussions, if needed, and initiate appropriate recommendations. Exploring support and services early on can immediately benefit patients and prepare them for later stages of the disease.
3.1 Medications
Dementia-related drug treatments must be carefully chosen based on the type and stage of dementia. It is essential to acknowledge that the medications currently available in Australia provide only modest benefits in symptom management and do not alter the underlying course of the disease.2, 3, 7 Patients and their families need to be informed that current medications do not provide a cure for dementia.2, 3, 7 If medications are prescribed, it is crucial to emphasise the importance of seeking medical advice before making any changes to the medication regimen. Discontinuing medication, even if there is no apparent improvement in symptoms or if the dementia severity worsens, should not be considered without proper clinical consultation.
While no disease-modifying treatments are currently on the market in Australia, a number of clinical trials are underway (see https://www.australianclinicaltrials.gov.au).2, 3 Patients can also register their interest in participating in research trials through various research matching platforms, such as StepUp For Dementia Research, which also offers non-pharmacological research interventions (more about research participation in Section 3.10; Table 5). It is important to provide patients and their families with sufficient information regarding any benefits and/or potential risks associated with pharmacological clinical trials.
Finally, within the broader context of medications, it is crucial to acknowledge that patients may already be on medications for other health conditions (e.g., hypertension and arthritis). Accordingly, considering a medication review, aimed at simplifying regimes and enhancing adherence, is advisable.
3.2 Providing information on dementia and encouraging integration with relevant organisations
Patients and their family carers should be encouraged to seek information about their specific condition and to engage with relevant organisations (Tables 2 and 3). A helpful starting point is to inform patients and their family carers about the three main dementia support lines in Australia: Dementia Australia (1800 100 500), Dementia Support Australia (1800 699 799) and Dementia Behaviour Management Advisory Services (1800 699 799). These support lines are available 24/7 (Table S1).
- Note: Websites accessed on 21 August 2023.
- a Relevant to eligible veterans.
3.3 Applying for the National Disability Insurance Scheme or My Aged Care
It is highly recommended that patients apply for formal support, as this will open access to a range of services and alleviate the financial burden. Such services and support play a crucial role in improving quality of life and lessen the care responsibilities placed on the family (as discussed below and in Sections 4.4, 4.5, and 3.9).
Australian residents diagnosed with dementia before the age of 65 are eligible for support through the National Disability Insurance Scheme (NDIS), while those diagnosed at 65 years or older qualify for My Aged Care (MAC) (Table 3). Although the NDIS and MAC primarily cater to different age groups, overlap exists between the two agencies. Of note, NDIS recipients do not transition to MAC when they turn 65.
The general practitioner (GP), specialist and/or social worker (if available) can assist patients in understanding their options before applying for either NDIS or MAC. They may be able to offer guidance in completing the paperwork and provide supporting documentation. The MAC plan is coordinated through a nominated provider (e.g., Hammond Care). The NDIS plan can be self-managed (e.g., by the family carer) or by the NDIS or its nominee. Direct assistance for those applying to NDIS is available from NDIS navigators; there are also specific entities dedicated to assisting those with young-onset dementia (e.g., www.yodreflections.com.au).
3.4 Building a formal support and care team
Ensure the patient has a nominated and reliable medical practitioner (GP or specialist) who is committed to a strong patient-provider relationship and is familiar with the patient's condition and medical history. Ideally, it is advisable that a family carer accompany the patient to appointments to ensure a thorough understanding of the consultation and to offer additional support in implementing the recommendations. It is recommended to schedule routine appointments with a dementia specialist (e.g., neurologist and geriatrician) every 6–12 months.
Other health-care professionals can also contribute to the patient's overall well-being and that of their family, such as psychologists for symptom management and mood (for both the patient and family carer), occupational therapists for functional assessment and home safety, speech pathologists for communication difficulties, physiotherapists or exercise physiologists for physical therapy, dietitians for nutritional guidance, and neuropsychologists for cognitive rehabilitation and compensatory strategies. Audiologists and optometrists can also assist with any age-related hearing or vision impairment, respectively. Engaging in music and/or art therapy has also been found to benefit some individuals living with dementia.8, 9 Less formal support structures can also be implemented, such as art groups, walking groups, men's shed and so on, depending on local accessibility.
While it is important to consider these options and discuss them with the patient and those involved in their management, it is also important to consider the financial implications. Many, if not all, of these services may be funded through the NDIS and/or MAC.
3.5 Assessing functional capacity and ensuring a safe, adaptive home environment
Functional capacity refers to the patient's ability to initiate, plan and perform activities of daily living (ADLs). ADLs can be broadly categorised into two main types: (i) basic ADLs, which include personal hygiene, toileting, dressing and eating and (ii) instrumental ADLs, such as cooking, using the telephone, shopping, housework, managing finances, driving and using public transport.10 Instrumental ADLs tend to decline before basic activities due to their complex nature.10
While functional impairments may not be immediate concerns at initial diagnosis, it is important to recognise their potential evolution over the course of the disease. A proactive care plan approach involves educating, anticipating and monitoring the progression of these functional challenges.
Formal support, in the form of a NDIS or MAC package, is designed to assist the patient with their day-to-day functioning and support family carers in their role. This support is often provided by formal carers (e.g., ‘support workers’) who assist with domestic tasks (e.g., housecleaning), personal care, social outings, transport and more. Should this be an option, it is helpful to have the same formal carers attend to ensure familiarity and maximise engagement.
A dementia diagnosis often prompts modifications to the home environment to ensure the patient's safety, especially when mobility, balance or vision issues are involved (e.g., in motor neuron-, parkinsonian- and posterior cortical-related dementias).11 Home modifications may involve decluttering, improving visibility in the bathroom and toilet areas, new installations (e.g., rails and brighter lights), and/or using durable plastic plates and cups instead of ceramic/glassware. These home modifications can be included in the patient's formal care package.
While not an immediate concern post-diagnosis, as the dementia progresses, the affected person may reach a stage requiring 24-h monitoring and care. Some individuals may continue to be able to reside at home with support, but others may require residential care. This decision is unique to each family, but the most important factors are the safety of the person with dementia and the family's ability to provide appropriate care and support. If residential care is sought, the best outcome is achieved with careful planning, visiting potential facilities and meeting staff to ensure a good fit for the person living with dementia. Additionally, it is important to have discussions about palliative care in due time (Appendix S1).
3.6 Financial planning
Considering the patient's financial situation is important, especially since a diagnosis of dementia often leads to increased medical appointments and related support services (e.g., speech pathology, physiotherapy and respite care). The financial burden can be particularly significant if these services are not funded or only partially subsidised (co-payment may be required) through a formal NDIS or MAC care package. Furthermore, emerging research indicates that certain dementia syndromes (e.g., frontotemporal dementia and Alzheimer's disease) are associated with reduced financial literacy.12 For patients with limited financial literacy, support from the family carer is essential to assist with household financial management. Additional oversight may be necessary from the family carer or a legally appointed attorney to mitigate their vulnerability to financial scams, particularly as the patient's cognitive capacities, judgment and reasoning decline.12 Their financial institution, if appropriately informed, may assist in implementing safeguarding measures to protect against such scams.
Additionally, it is essential to acknowledge that family carers may need to take additional leave or modify their work arrangements as the needs of the patient increase, resulting in further negative financial ramifications. In these cases, the carer may be able to access the Carers Allowance through Centrelink to reduce the financial impact (Table 3 and Appendix S2).
3.7 Initiating legal planning
It is important to address key legal matters soon after the diagnosis of dementia because the patient's decision-making abilities will progressively decline (Appendix S1). The patient should be advised about the following actions:
3.7.1 Create or update wills
Patients should consult a Wills and Estates lawyer (or their personal lawyer) or the Public Trustee in their State/Territory to establish or revise their wills. This step is particularly important if the patient is already experiencing decision-making challenges (Table 4).
- Note: Websites accessed on 21 August 2023.
3.7.2 Appoint an enduring power of attorney (EPOA)
The patient should designate a trusted person or group to manage financial affairs and assets on their behalf when they are no longer able to do so themselves. The requirements for an enduring power of attorney (EPOA) vary across States/Territories (Table 4).
3.7.3 Appoint an enduring guardian (EG)
An enduring guardian (EG) is an individual or group appointed by the patient to make decisions about their health care, living arrangements and other lifestyle matters. This may be, but does not have to be, the same person that holds EPOA. The EG may also have authority over Advanced Care Plans (Table 4). The process for appointing a guardian differs in each State/Territory (Table 4). If no EG has been designated, the Civil and Administrative Tribunal may appoint a guardian, which could potentially be a Public Guardian.
It is important to explain that taking a proactive approach to preparing these legal documents will ensure that the patient's preferences are taken into account and will prevent legal challenges later on.
3.8 Driving
A diagnosis of dementia does not automatically rule out a person from driving. Those with mild dementia may still have the ability to drive, but they may face limitations as the disease progresses.13 Different dementia syndromes will affect driving skills differently due to distinct symptom profiles (e.g., poor vision in posterior cortical atrophy and poor motor function in Parkinson's plus syndromes).14 In Australia, the AustRoad Guidelines mandate individuals with a diagnosis of dementia of any severity to report their diagnosis to the local authority (e.g., Service NSW [Transport for NSW] for NSW and VicRoads for VIC), and clinicians have a professional responsibility to inform the patient about this requirement. If deemed unfit to drive, the clinician can assist the patient in informing the local authority or surrendering their license. Clinicians should discuss the benefits and risks of driving, framing it as a legal requirement rather than a personal opinion. Explaining the options of immediate or eventual license withdrawal are also important. If there are uncertainties about a patient's ability to drive safely, a formal occupational therapy driving assessment at a local centre can aid in the decision process. This considers the patient's personal circumstances, including factors such as driving in rural or remote regions, and the distances they intend to travel. Losing a driver's license can significantly impact independence, self-esteem and well-being, so early discussions about alternative transportation options, such as public transport or carer assistance, are crucial to ensure continued engagement in activities. The patient and carer may also qualify for disabled parking permits.
3.9 Supporting the family carer
Family members often take on the role of primary carer for patients with dementia, and the risk of burden of care associated with this role is well-established.15-17 Educating caregivers about related symptoms can assist them in recognising and preparing for changes that may develop as the dementia progresses.17, 18 This will also aid family members in distinguishing the disease from the person and maintaining an empathetic relationship with their loved one.18 Currently available learning resources tailored to the carer are provided in Table S3. It is equally important that carers seek their own health and emotional resources; discussion and guidance related to these are paramount.17 This includes information about how to safeguard their own health by exercising healthy and sustainable standards of caregiving and understanding personal limits. Many carers benefit from engaging with a psychologist or counsellor early on or joining a support group (Table S3). It is also important that carers visit their GP regularly to monitor their own physical and mental health. Regardless of the carer's needs at the time, it is important to guide them to appropriate and relevant resources.
3.10 Other considerations
3.10.1 Research
Some patients diagnosed with dementia find value, purpose and empowerment in participating in research. Dementia research spans various areas, including pharmaceutical and non-pharmaceutical trials, cognitive testing, brain imaging, genetics and brain donation (Table 5 and Table S4). Engaging in research offers the potential to enhance understanding of the disease, its mechanisms and may ultimately lead to more effective treatments, or even a cure. Research participation allows patients to contribute to the wider community and make a meaningful difference in the lives of people living with dementia.
| Australian Alzheimer's Research Foundation | https://alzheimers.com.au/ |
| Australian and New Zealand Clinical Trials Registry | https://www.anzctr.org.au/ |
| Clinical Trials Registry | https://www.australianclinicaltrials.gov.au/ |
| Dementia Trials Australia | https://www.dementiatrialsaustralia.com.au/ |
| Forward with Dementia | https://forwardwithdementia.au/ |
| FTD Disorders Registry | https://ftdregistry.org/ |
| Shake it up Foundation | https://shakeitup.org.au/ |
| StepUp for Dementia | https://www.stepupfordementiaresearch.org.au/ |
| The Australian Dementia Network | https://www.australiandementianetwork.org.au/ |
| The Australian Parkinson's Mission | https://theapm.org.au/clinical-trials |
- Note: State/Territory-based dementia research centres in Australia are provided in Table S4. Websites accessed on 21 August 2023.
3.10.2 Genetic testing
The decision to pursue genetic testing for dementia necessitates careful consideration of multiple factors.19, 20 Genetic testing may be appropriate in cases where there is a strong family history of dementia, particularly if multiple close relatives have been affected. Additionally, if dementia symptoms manifest at a younger age, genetic testing may provide valuable insights into the cause of the disease.19, 20 Certain types of dementia, such as younger-onset familial Alzheimer's disease or frontotemporal dementia, have a stronger genetic component, compared to late-onset dementia, making genetic testing particularly relevant.19, 20 It is important to recognise that genetic testing is a personal decision with implications for relatives and children. Prior to pursuing genetic testing, it is mandatory for the patient and their close family members to consult a genetic counsellor to gain a comprehensive understanding of the benefits, limitations and potential psychological impact of the testing process.
4 CONCLUSIONS
Receiving a dementia diagnosis is a life-altering event for patients, as well as their families and friends. It is imperative for clinicians to provide patients with complete information about the condition, in understandable language, with guidance for the next steps. It is important to provide timely advice, treatment and practical support to maintain their independence. It is also essential to embrace personalised care by acknowledging each person's values, priorities and circumstances. Finally, offering compassionate communication, involving patients and families in decision-making and ensuring personalised follow-up care can contribute to a positive patient experience.
ACKNOWLEDGEMENTS
We would like to extend our sincere gratitude to the patients and their families who participated in our research. We would also like to thank Dr Penelope Monroe, Dr Nicholas J. Cordato, Dr Manisha Narasimhan and the Sydney Dementia Lived Experience Expert Advisory Panel (LEEAP) for their assistance with sourcing relevant websites and services. We hope the resources from this article will improve the outcomes of people currently living and yet to live with dementia. Open access publishing facilitated by The University of Sydney, as part of the John Wiley & Sons Australia Ltd; The University of Sydney agreement via the Council of Australian University Librarians.
FUNDING INFORMATION
This work was supported in part by a National Health and Medical Research Council (NHMRC) Program grant (GNT1037746) and the Australian Research Council (ARC) Centre of Excellence in Cognition and its Disorders Memory Program (CE11000102). OP is supported by an NHMRC Senior Leadership Fellowship (GNT2008020).
CONFLICT OF INTEREST STATEMENT
No conflicts of interest declared.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
