Helping people with Young Onset Dementia using Telehealth

What is Young Onset Dementia (YOD)?

Young Onset Dementia (YOD) is onset of dementia symptoms before the age of 65 years - though even before 70 years is still quite young. People with can experience a lot of difficulty in getting YOD correctly diagnosed, as the symptoms are frequently present with psychiatric symptoms at the beginning. This often happens in certain people who have behavioural variant frontotemporal dementia or Huntington’s disease. People may have psychiatric symptoms for some months or years before YOD.

On average, people with YOD experience delay in diagnosis of up to 5 years, and have frequently seen numerous medical specialists.

Young-onset dementia affects approximately 25,000 patients in Australia, and while this is about 10 per cent of all people with dementia, it remains a relatively uncommon condition. Many medical and mental health teams are not familiar YOD .

There is evidence to show that centralised multidisciplinary care, such as from our Neuropsychiatry Unit, is helpful for people with YOD.

Our Neuropsychiatry Unit runs a YOD specialist clinic, seeing people from across Victoria and Tasmania, and occasionally other states.

How does our Telehealth service work

Telehealth can help people get assessment and ongoing specialist care. They may not be able to get to our Neuropsychiatry Unit due to issues such as:

• being a long distance from us
• support issues
• mobility issues
• cognitive impairment

Telehealth uses technology to allow patients, who are deemed clinically appropriate, to have video appointments with specialists using their own smartphone, tablet or computer.

Sometimes a video consultation to you at home is fine and sometimes it is best with your GP, Practice Nurse, specialist, or at your local health service.

Instead of travelling to your appointment to see our specialists, you simply enter our Telehealth waiting area through your computer, phone or tablet. The specialist/clinician will be notified when you arrive, and will join you when ready. Once the connection is made, both sites will be able to see each other on the video screens. Our specialists will be seated in a closed and confidential office located at the Royal Melbourne Hospital.

Is it secure? Will my medical information be kept confidential?

Yes, video calls are secure. The privacy and confidentiality of all information (including medical records) shared including the consultation itself, is maintained and protected at all times – at both the Neuropsychiatry Unit and at your local health service. You have your own private video room that only authorised clinicians can enter.

No video recording is made of the consultation.

What are the benefits of Telehealth?

Telehealth reduces travel, saving you time, effort and money. It gives you access to specialist services without having to travel to Melbourne. There are often reduced waiting times associated with making a Telehealth appointment compared to being seen by a specialist in person.

How can I access the Neuropsychiatry Unit Telehealth Service?

Please ask your GP or doctor about Telehealth at your next appointment.

Your doctor, GP, health service provider will confirm if Telehealth is suitable for you before an appointment is made.

Telehealth can be particularly useful if you:

• live in rural or regional areas
• are in an aged care facility
• have transport or mobility issues
• want to include other people in the discussion who would not be able to come to the RMH with you (for instance, friends, family, your GP, specialist, or local health service provider).

Request a referral

You will need your GP or specialist service provider to make a referral to the service for a Telehealth appointment to be made.

Relevant information on your condition, some medical notes and medical imagery will be sent to the specialist to inform them for the consultation.

What will it cost me to access the Telehealth service?

The video call is free, except for your internet usage.

There are no costs to you when using the Telehealth service from the Neuropsychiatry Unit / Melbourne Young Onset Dementia (MYOD) Service. We provide free Australian public healthcare. You will only need to present a valid Medicare Card at the time of your appointment.

There may be additional costs with your local health provider including service fees or relevant pharmaceuticals recommended from the consultation. Please consult your clinician to see if this is applicable.

What do I need to make a Telehealth Call?

You or your local doctor will need a reasonably up-to-date computer, iPad, tablet or smart phone and internet, with the Chrome browser (or Safari for iPhone or iPad). There is no need to create an account. No information you enter is stored.

Find out more about Telehealth and its technical requirements.

Where will the Telehealth consultation take place?

We recommend a private, quiet and well-lit room. As your medical information will be discussed, do not have your appointment in a public area such as an open plan work office or a cafe. You should feel comfortable to speak openly to make sure you get the most benefit from your appointment.

We suggest having the appointment in the privacy of your own home or your carer’s home. However, sometimes it might be better for you to go to your local doctor and include them in the Telehealth consultation.

What will I have to do?

Attend your scheduled Telehealth appointment at your local health service or at home. After the consultation, you will be asked to complete a brief satisfaction survey for us to ensure we are providing the best care possible.

What are my other options?

You are not obliged to attend your appointment by Telehealth. You may actually prefer to be seen in person by a specialist, you may not have access to a space where you feel private enough, and / or you may not have sufficient internet speed and bandwidth. There is always the option to have a regular face-to-face appointment.

Telehealth may have some limitations in technology reliability or you may prefer to be seen in person by a specialist. If this is the case, please speak to your local clinician who can discuss referral to the service for a face-to-face consultation. In some cases a face to face appointment with the Unit may need to be scheduled regardless of Telehealth availability.