Dementia in Australia: nine clinical recommendations

People with dementia and their families should not be left feeling hopeless or unsupported after receiving a diagnosis. The following recommendations can help them, and their health care providers, to navigate this time.

Dementia is the second leading cause of death in Australia, and the leading cause among Australian women. It is estimated over 400 000 Australians are living with dementia, with this number expected to double by 2058. The socio-economic burden of dementia is expected to exceed $26.6 billion in the next two decades, representing an eightfold increase. In this context, prioritising innovative and efficient clinical care is imperative.

Communicating the diagnosis

Providing patients with a timely and accurate dementia diagnosis is crucial for ensuring appropriate treatment and care. A diagnosis provides an explanation for the presenting symptoms and may bring a sense of relief to patients and their families by alleviating the uncertainty surrounding the condition. The success of this process, however, relies on effective communication skills so that the diagnosis and its implications are provided in an empathetic, sensitive and accessible manner tailored to the patient’s specific needs. Although few clinically meaningful disease-modifying treatments are available in Australia, patients and their families should not be left feeling hopeless or unsupported after receiving a diagnosis of dementia.

After the diagnosis: nine general recommendations

Based on our extensive multidisciplinary clinical experience and following international practice guidelines, we have recently published recommendations articulated around nine topics when providing post-diagnostic care. These recommendations are outlined below.

1. Medications

Pharmacological dementia-related treatments need careful consideration based on the type and stage of dementia, and given their possible side effects. It is important to acknowledge that medications available in Australia provide only modest benefits in symptom management and do not alter the underlying course of the disease. If medications are prescribed, it is important to emphasise that any medication adjustments should be made under medical supervision.

Even though no disease-modifying treatments are currently on the market in Australia, several clinical trials, including those involving monoclonal antibody-related drugs, are underway. Patients can also register their interest to participate in research trials through research matching platforms, such as StepUp for Dementia Research.

2. Providing information on dementia and encouraging integration with relevant organisations

Patients and their family carers should be provided with current and relevant information about their specific condition, and be encouraged to seek further information and engage with relevant organisations. A helpful starting point is to inform patients and their family carers about the two main dementia support lines in Australia: Dementia Australia (1800 100 500) and Dementia Support Australia (1800 699 799). These support lines are available 24/7. Patients can also be provided with this Dementia Resources Guide booklet.

3. Applying for formal support

Australian residents diagnosed with dementia before the age of 65 years are eligible for formal support through the National Disability Insurance Scheme (NDIS), while those diagnosed at 65 years or older qualify for My Aged Care (MAC) (Table 1). Despite primarily catering to two different age groups, the two agencies overlap somewhat. Notably, NDIS recipients do not transition to MAC upon turning 65 years old.

4. Building a formal clinical care team

In addition to the GP and/or the specialist, other health care professionals may also contribute to the patient’s overall wellbeing and that of their family, including:

• psychologists for symptom management and mood (for both the patient and family members);
• occupational therapists for functional assessment and home safety;
• speech pathologists for communication and swallowing difficulties;
• neuropsychologists for cognitive rehabilitation and compensatory strategies;
• physiotherapists or exercise physiologists for physical therapy; and
• dietitians for nutrition.

Appropriate physical and nutritional interventions may improve quality of life and slow the progression of dementia.

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. While functional impairments may not be immediate concerns at diagnosis, often these become apparent over the course of the disease. A proactive approach involves educating, anticipating and monitoring the progression of these functional challenges.

The NDIS and MAC care package offer support by formal carers (ie, support workers) who may supervise and assist with domestic tasks (eg, house cleaning), personal care, social outings, transport and more.

A dementia diagnosis may prompt modifications to the home environment to ensure the patient’s safety, especially when mobility, balance and/or vision issues are involved. These modifications may include decluttering, enhancing visibility (eg, extra/brighter lights), installing rails and ramps, and/or switching to unbreakable crockery instead of ceramic and glassware. Such adjustments can be included in the patient’s formal care package.

6. Financial planning

Emerging research indicates that certain dementia syndromes (eg, frontotemporal dementia, Alzheimer’s disease) are associated with reduced financial capacity. Patients with limited financial capacity may require support and oversight from a family member or legally appointed attorney to mitigate their vulnerability to financial scams, especially as their cognitive abilities decline. With appropriate notification, their financial institution should assist in implementing safeguarding measures to prevent such scams.

7. Initiating legal planning

It is important for patients to address key legal matters as soon as possible after the diagnosis of dementia.

Wills. The patient may wish to consult a Wills and Estates lawyer (or their personal lawyer) or the Public Trustee in their state or territory to create or update their wills.

Enduring power of attorney (EPOA). The patient should be encouraged to designate a trusted person or group to manage financial affairs and assets on their behalf when they are no longer able to do so. The requirements for an EPOA vary across states and territories.

Enduring guardian (EG). An EG is an individual or group appointed by the patient to make decisions about their health care, living arrangements, and other lifestyle matters. The process for appointing a guardian varies across states and territories.

8. Driving

A diagnosis of dementia does not automatically preclude a person from driving. In Australia, the national framework from AustRoad mandates that individuals with any severity of dementia must report their diagnosis to the local authority (eg, Service NSW for New South Wales, VicRoads for Victoria etc). Conversations regarding road safety and driving should emphasise legal obligations rather than personal opinions. If a patient’s ability to drive is uncertain, a formal occupational therapy driving assessment may be needed. Early discussions about alternative transportation options, such as public transport, taxi vouchers or carer assistance, are essential to ensure continued engagement in activities.

9. Supporting the family carer

Family members often assume the primary carer role for patients with dementia. Educating carers about dementia-related symptoms can help them recognise and adapt to evolving changes as the disease progresses. Psychoeducation will also aid family members in distinguishing the disease from the person and maintain an empathetic relationship with their loved one. Learning resources are available here. Equally vital is addressing carers’ own health and emotional needs. Financial assistance, such as Carer’s Allowance via Centrelink, is also available to reduce the financial burden of carer responsibilities.

Conclusions

Receiving a dementia diagnosis is a life-altering event for patients and their families. Clinicians have an important opportunity to ensure patients receive sufficient information about the diagnosis, connect them with appropriate support services, and instil a sense of hope for the future.

Dr David Foxe is a clinical neuropsychologist and researcher with the FRONTIER Clinical Research Group, University of Sydney.

Dr Sau Chi Cheung is a clinical neuropsychologist at Royal Prince Alfred Hospital, Sydney, and researcher with the FRONTIER Clinical Research Group, University of Sydney.

Professor Olivier Piguet is a professor of clinical neuropsychology and director of the FRONTIER Clinical Research Group, University of Sydney.

Dr Yun Tae Hwang is a cognitive neurologist at Gosford Hospital, lecturer at Central Coast Clinical School, University of Newcastle, and researcher with the FRONTIER Clinical Research Group, University of Sydney.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated. 

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