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June 2022

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Driving and Dementia

For many people, driving is an important part of their way of life. Driving is part of being independent as well as a way of getting to places. Some people like the activity of driving, such as a Sunday afternoon drive, or going for a drive to blow off steam.

The quick reaction times, coordination and problem solving that are needed to drive safely deteriorate in all of us as we age, but more so in people with dementia. When people are told they have dementia, they often worry about whether they will be allowed to drive, or whether they should still drive.
 

You can continue to drive after passing an assessment

When people are diagnosed with dementia, they do not automatically lose their licence. However, Australians are legally obligated to tell their state or territory’s driver licensing authority about medical conditions that may affect their ability to drive, including dementia. If you don’t tell the driver licensing authority about your dementia, your doctor may do so. In some states and territories, it is mandatory for your doctor to tell the driver licensing authority. Also, not telling may compromise your insurance.

The licensing authority will ask your doctor to provide an assessment of your ability to drive. They may also request a Fitness to Drive assessment. If your doctor doesn’t think that you are safe to drive, then you may find your licence revoked. If your doctor is not sure if you are safe to drive, they will recommend that you take a Fitness to Drive assessment.

Fitness to Drive assessments are usually conducted by occupational therapists. They usually have an off-road component, where they might check your vision and reaction time, and an on-road practical test. Fitness to Drive assessments are conducted by private occupational therapists and can be expensive. There may also be a wait of several months to get an assessment.

If you pass the Fitness to Drive assessment, you will be given a conditional driver’s licence, usually lasting 12 months. This driver’s licence might have some conditions such as that you can only drive during the day, within your local area, or under a certain speed. You’ll have to repeat the Fitness to Drive assessment every 6-12 months.

A dementia diagnosis may affect your car insurance. You should tell your insurance provider that you have dementia, as the policy may be void if you don’t tell them this information. They may raise your insurance premiums.
 

Some people with dementia decide to stop driving

Even though they may be allowed to continue to drive, some people with dementia decide to stop driving. They may be worried about causing an accident, have lost confidence in their driving skills, or because they were getting lost while driving. Some people stop driving at the request of their family.
 
You can also read Phil Hazel’s story which describes how he made his decision about driving.
 

It helps to prepare to transition from driving to not driving

It helps to prepare mentally and practically for when you might no longer be able to drive. This is so that you can keep going out, socialising and doing things you enjoy when you stop driving.

Some people stop driving gradually. You might start by limiting your driving to places you go to regularly, only drive during daytime and when traffic is not busy. You might use other transport options to get to some places.

Over time you may reduce the places you drive to (e.g. only to the shops, or to a friend’s home). Getting used to other transport options in this way can make the transition from driving easier.

The Car Free Me program can help you prepare for when you need to stop driving. It is only offered as part of a research for now.
 

Some people are told to stop driving

Some people with dementia do not make the decision themselves to stop driving. Sometimes it’s the doctor’s judgement that the person should not drive. Please note that doctors can be legally liable if they don’t act.

Sometimes the person fails their driving test. Sometimes it’s family members who stop the person from driving, or take away the car keys, and there might have been a family argument about driving.

Some people with dementia feel angry or sad that they are not allowed to drive. They feel frustrated or upset at their loss of licence, independence, and control. These feelings are understandable. It is very unlikely that you’ll be allowed to drive again. There are however transport options so you can keep going out.
 

More information on the website:

Keynote presentation

Congratulations to Professor Lee-Fay Low who gave an insightful presentation as keynote speaker at the Australian Dementia Research Forum on 30 & 31 May 2022. You can now watch her 20 minute talk on the Forward with Dementia YouTube Channel: Post-diagnostic supports for people living with dementia: needs and structural gaps

Celebrating nurses in dementia care

by Yun-Hee Jeon, Registered Nurse & Professor of Healthy Ageing

 
International Nurses Day is celebrated around the world on the anniversary of Florence Nightingale’s birth. On this International Nurses Day, Forward with Dementia is celebrating the importance of nurses in dementia prevention, diagnosis and care.

We often hear that nurses are essential, and especially so for people living with dementia and their care partners. Nurses are involved in most aspects of the dementia journey from prevention to assessment and the provision of person-centred care and support. Nursing is the largest healthcare profession in Australia, with nurses often seen as ‘the glue that holds everything together’. 

Nurses work with many other health professionals in the public or private health sectors. Settings where nurses work include, but not limited to are:
  • hospitals
  • rehabilitation
  • aged care
  • disability
  • general practice (GP) clinics
  • community health services
  • palliative care

Dementia prevention

In a range of settings, including general practice and community care services, nurses have a fundamental role in the prevention of chronic disease. Nurses promote physical activity and encourage socialization and mental stimulation which are known to reduce the risk of dementia. They also help manage hypertension and cardiovascular disease which are known risk factors for vascular dementia. Preventing a further progression or deterioration of chronic illness is also an important role nurses play in all care settings.
 

Dementia assessment

Nurses are involved in observing and reporting potential signs of underlying dementia in their patients. Practice nurses work with GPs to conduct 75+ health assessments. As part of this assessment, psychological function, including cognition (memory and thinking) is reviewed using scientifically validated screening tools. Nurses also work in dementia diagnosis as part of specialist memory clinics throughout Australia.
 

Navigating dementia support and care

Once you have a dementia diagnosis, nurses can assist with arranging an Aged Care Assessment via My Aged Care and access to subsidised services. Similarly, they can help people with Younger Onset Dementia (under 65 years) to access services through the NDIS.

Nurses can help you and your care partner to navigate other supports as well as respite services. They may refer you to Dementia Australia for post-diagnostic support, or to undertake a Living with Dementia program. They may connect you with other services such as Dementia Support Australia, or local support groups and other local services.
 

Goal setting, reablement and rehabilitation

Nurses work with people with dementia and their care partners to establish what the person wants and needs to maintain their quality of life. Through their comprehensive assessment, nurses look at the person’s wholistic care needs across clinical, social, emotional and mental health areas and support them in their journey. Understanding and acknowledging individuals’ uniqueness and preferences is an important step that enables person centred and tailored goal setting.

Working with care partners, and others involved in day-to-day care of the person, nurses provide opportunities to help the person maintain their functional independence, motivating them to do as much as they can on their own, with appropriate support when needed. Everyone wishes to have a sense of purpose, independence and autonomy in everyday life and respecting those desires and wishes and enabling the person to achieve them is an important part of nurses’ work.

Nurses also work with occupational therapists and other allied health professionals to help people living with dementia at home to achieve their goals. For example, the IHARP program featured previously on this website. Nurses with specialist qualifications in dementia care can educate care partners and families throughout all stages of the dementia journey.
 

Dementia care

Nurses provide care to people living with dementia at home via aged care and disability care providers, as well as palliative care services. They also provide care in hospitals and residential aged care facilities and respite centres.

Nurses are responsible for implementing and supervising most activities within care facilities, including education, physical and social activities to improve wellbeing and quality of life. When required, nurses provide personal care services (such as help with dressing, washing, toileting) while maintaining the dignity and comfort of the person with dementia.
 

Types of nurses involved in dementia

Practice nurses work with GPs within the GP practice. They assist with health promotion, education and provision of support, 75+ assessments and chronic disease management.

There are also nurses who are specialised in dementia and aged care, under different descriptions and scope of practice. They include dementia care nurse specialist, dementia clinical nurse consultant, nurse practitioner in dementia care, gerontological nurse, and psychogeriatric nurse.   
 

For more information:

  • People with dementia can read: Plan to use services - Services help you maintain independence and provide practical and emotional support to improve your wellbeing
  • Carers can read:
    Know about support services Learn about services and getting them in place for you and the person you support is an important part of moving forward; and Types of Services

Families and dementia diagnosis & support

Families are important in most aspects of life, but especially so in noticing early signs and symptoms of dementia and providing support following a dementia diagnosis.
 

Families and dementia symptoms

When people live together, or see each other all the time, it can be harder to notice subtle changes that occur to memory and thinking. Sometimes these changes can be more apparent to family members who see each other less often, as the changes seem more markedly different. You may notice early signs and symptoms of dementia when you come together for annual celebrations such as Mother’s Day or Father’s Day.

Common signs and symptoms of dementia you may notice in a family member could include changes to:
  • Progressive and frequent memory loss
  • Confusion
  • Personality change
  • Apathy and withdrawal
  • Loss of ability to perform everyday tasks.
If you think your family member may have the signs and symptoms of dementia, ensure they visit their local doctor as soon as possible to discuss the signs and symptoms. If they don’t have a regular doctor, you can find one by searching on Health Direct.

Everyone’s experience of dementia is different. There is a lot of variability in the type and severity of symptoms each person experiences, and this may change from day to day.
 

Support your family member to seek a diagnosis

In some sections of the community, there is a misconception that little that can be done for people who receive a dementia diagnosis. This can lead to delays in help-seeking either for themselves or their loved ones. However, early detection and diagnosis is important to increase the number of treatment and rehabilitation options and help the person and their family to adjust to their diagnosis and better prepare for the future. For example, read about:

Family reactions to the dementia diagnosis

It can be difficult to communicate the dementia diagnosis to other family members, but sharing the diagnosis helps everyone to come to terms with it and ultimately ensures the person with dementia gets the support they need. For strategies on this website, read: Sharing the diagnosis with family and friends.

Hopefully, most family and friends will be supportive and helpful, but some may not know what to say and avoid the topic. Others may be disbelieving and question whether the person really has dementia. For more information and strategies on this website, read: Reactions of family and friends to the diagnosis.
 

Family support after a dementia diagnosis

Some people with dementia describe their carers or family members as over-protective – they do too much for them or take over, but they don’t want to say anything because they don’t want to seem ungrateful or hurt the other person’s feelings. Where possible, it should be up to the person diagnosed with dementia to decide how they do or don’t want to be supported by family. For more information read Manage how you do and don’t want to be treated.
 

Resources for families

Dementia Australia have produced the Families and friends matter booklet with information, tips and strategies on staying connected to people living with dementia.
Dementia Australia also offer a Family Relationships and Dementia Expert Webinar, available in all states. Check the Dementia Australia Events Calendar for other educational programs (including the Living with Dementia program) available online, or in your area.
 

For more information

Read stories on the website about other family’s experiences of dementia:

Please help us - your opinions matter!

We want to find out if the website and resources are making a difference for people recently diagnosed with dementia, their families and supporters.

We are looking for people who have been diagnosed with dementia within approximately the last 2 years to participate in an interview about their experiences with the Forward with Dementia website.

  • The interview will take about 30-45 minutes.
  • It can be done online (Zoom) or by phone.
  • It is confidential and will be conducted by an experienced university researcher.
  • Previous use of the Forward with Dementia website is required as this will be the interview focus.

If you are interested to participate or have any questions, please email us at forwardwithdementia@unsw.edu.au.

We are also looking for carers to participate in an interview about their experiences with the Forward with Dementia website. The interview will follow the same format as detailed above.

Instead of (or in addition to) an interview, we welcome you to provide feedback via an online survey: https://redcap.link/forwardwithdementia.

Health and social care practitioners

Thank you for your continued engagement with Forward with Dementia. To continue this work in improving lives of people with dementia and families, we need your feedback:
  • It will only take 5 minutes to complete a short survey to see if the Forward with Dementia website, resources or webinars may have changed your practice or knowledge about delivering dementia diagnoses or post diagnostic support.
  • Please complete this short survey here: https://redcap.link/fwdpracticesurvey.  
If you have already completed this survey, we thank you for your time.

Need more information?


Read About Us or email forwardwithdementia@unsw.edu.au or leave a message on Tel: (02) 9065 7307.

You can also follow us on Facebook, Twitter and YouTube (see links at the bottom of this email).

Forward with Dementia is part of the COGNISANCE project. The project was awarded by the European Union Joint Program on Neurodegenerative Disorders and in Australia is funded by the National Health and Medical Research Council.

This project has been approved by the UNSW Human Research Ethics Committee. Project number HC210560 and HC 210308.
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