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April 2022

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Time to plan for now!

For many people, after receiving a dementia diagnosis, it’s hard to know what do next. Writing a life plan for this year can help you prioritise what is important and what steps and strategies you need to achieve your goals. Having a life plan helps:
  • You to stay in control and have purpose.
  • The people who support you (family and friends, professionals) understand what you want, and means they can help you live your plan.

Your life plan is flexible. As things change in your life, your plan might need to change.

Forward with Dementia provides the My life plan worksheet to help you to identify your goals and work out how to overcome barriers to achieve those goals.

Read more information on developing a life plan

For people with dementia:

For carers:

Plan to use services

Services help you maintain independence and provide practical and emotional support to improve your wellbeing. As well as visiting your GP and specialist, consider how allied health services can help you manage symptoms of dementia.

Also consider home and community services which help you at home or when out an about. These services are provided through the Federal government’s My Aged Care, the Department of Veteran’s Affairs, and the National Disability Insurance Scheme.

Dementia information and support services are also available via Dementia Australia, as well as Dementia Support Australia for people with dementia where changed behaviours are impacting their lives or the lives of their carer.

Read more on the Forward with Dementia website

For people with dementia:

For carers:

Planning for the future

The future belongs to those who prepare for it today!

Many people find it uncomfortable thinking about a future situation when they are very disabled or dying. But talking to your family is important so they know what your future wishes are. You might also find out their thoughts and feelings around the circumstances when you can’t make decisions or are dying.

Ensuring your will, enduring power of attorney, and enduring guardianship documents in place means your wishes will be undertaken in the future.

Many people take the needs and wishes of their family into consideration as part of their plans. This conversation (or conversations) can be really hard, but it’s important to have them now. If you experience conflict in having these conversations with family, consider using the Elder Support and Mediation Service provided by Relationships Australia in your state or territory.

Dementia Australia has a comprehensive workbook to help you in all aspects of planning ahead. You can also watch a webinar on supporting decision making for people living with dementia by Dr Craig Sinclair, Ann Pietsch and Prof Meera Agar via YouTube.

Advance Care Planning

An Advance Care plan or directive is a written document where you specify what health treatments you want and do not want when you’re not able to make those decisions. This is a legal document in some states or territories, but not others.

Talk to your GP, nurse, other health workers and family about future situations where you might have to make health decisions (e.g. if you are no longer able to feed yourself, if you stop breathing). You can also talk to your health professional about the pros and cons of those options and then make a decision based on those discussions.

More information

More information on the Forward with Dementia website


For people with dementia:

For carers:

Plan for future emergencies

The recent fires, COVID-19 pandemic and floods in Australia are important reminders that we need to plan for emergencies. People living with dementia may not cope as well with sudden changes of routine or find the added stress of an emergency very distressing. To help you plan for natural disasters, read 5.13 Plan for emergencies and our recent news article: Natural disasters and people living with dementia.

Carers need contingency plans in case something happens to them. Emergency respite care is available via Carer Gateway if you suddenly find you can’t provide care, for example if you become ill or injured, call Carer Gateway on 1800 422 737 24 hours a day, 7 days a week.

Carer Gateway recommend making an Emergency Care Plan. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get it quickly and easily.

Parkinson’s disease and related dementias

Parkinson’s disease is a progressive degenerative neurological condition characterised by both motor (movement) and non-motor symptoms. It is estimated to affect over 10 million people worldwide and around 100,000 Australians are living with Parkinson's.

The average age of diagnosis is 65 years. While the risk of contracting the condition increases with age, Parkinson’s is not part of the natural aging process. Younger people are also diagnosed with the disease, and this is called Young Onset Parkinson’s.

Parkinson’s is often thought of as a disease that only involves movement. Yet many people with Parkinson’s complain of slowness in thinking, loss of memory, decreased attention span and difficulty finding words.

There is no definitive medical test (blood test or scan) to diagnose Parkinson’s. It is diagnosed by identifying a range of symptoms and features.
 

Symptoms and features

Motor symptoms of Parkinson’s include:
  • Resting tremor
  • Slowed movement (bradykinesia)
  • Rigid muscles
  • Posture and balance problems
  • Reduced facial expression (blank-like appearance)
  • Gait problems such as freezing, shuffling, drooped shoulders and lack of arm swing.
Non-motor symptoms of Parkinson’s 
  • Cognitive impairment
  • Depression and anxiety
  • Sleep difficulties
  • Loss of sense of smell
  • Constipation
  • Speech (voice becomes quieter)
  • Swallowing problems 
  • Writing problems (writing may appear small)
  • Vision difficulties
  • Apathy and fatigue.
Parkinson’s symptoms affect everyone differently. Many people will experience some symptoms and not others. The progression of the disease also varies between people.
 

Parkinson’s dementia and Lewy body dementia

Parkinson’s dementia is diagnosed if the onset of dementia occurs a year or more after the onset of motor symptoms. If symptoms of dementia appear before or at the same time as symptoms of Parkinson’s, it is called dementia with Lewy bodies.

People with Parkinson’s or Lewy body dementia have trouble with their visuo-spatial skills, concentration and attention, movement and falls. They frequently have abnormal movements during sleep. Their concentration and attention can fluctuate so that the person can be really clear in the morning but muddled and confused later that same day. These fluctuations can also be experienced over a few days. Their walking might become slow or stiff.

People with Lewy body dementia sometimes see things that aren’t there (visual hallucinations typically of people or animals) and may believe things that aren’t true (delusions). They can benefit from physiotherapy and exercise physiology to help improve movement.
 

More information on the Forward with Dementia website:

More information on external sites:

George, a retired veterinarian living in the Illawarra region of New South Wales, describes his diagnosis of Lewy body dementia, and how he’s managed to move forward despite a major set-back and time in hospital.


George's early symptoms of Parkinson’s included slowness, lack of arm swing, very small handwriting, and difficulty contributing to and keeping apace with conversations.

"About a year after my Parkinson's diagnosis, I lost the sight in one eye with a retinal arterial occlusion. Not long after that, I started to see unusual things like balloons, small pets and children, and others would tell me they weren’t actually there. The hallucinations did not bother me, though others became worried.

Initially, I wondered if it was a complication of my vision loss, but my hallucinations and double vision became a lot worse. Some mornings it looked like I was drinking five cups of coffee! My wife noticed my growing confusion, and eventually, my neurologist diagnosed Parkinson’s dementia.

My physical symptoms gradually became worse, especially in the afternoons and evenings. My wife is my full-time carer and helps me to dress and get in and out of bed.

Some nights I’d wake up and live out my dreams of being a vet again, and one night I had a fall which resulted in a life-threatening fracture. I had extensive neck surgery and spent almost six weeks in hospital.

After hospital, I started using a walker. I also have a sensor mat beside my bed so my wife is alerted when I get up overnight.

I received a Level 4 home care package via My Aged Care. I now have two male carers who come most weekdays and help me in the shower, and with my exercises and walks. I’ve seen an exercise physiologist for about two years now and she’s prescribed exercises as part of a specific Parkinson’s program.

My neurologist and GP helped me manage symptoms with medications to reduce my hallucinations, improve my sleep and continence issues, as well as the dopamine replacement therapy. My wife takes very good care of me and manages all my medications.

I still enjoy listening to audio books, watching TV and spending time with family and friends, although it is hard to get out and about. I feel very grateful for the care and attention I’ve received since my diagnosis. I always try to keep a sense of humour and keep everyone laughing, including myself!”

Navigating the system: finding supports after a dementia diagnosis
This live webinar was held on 16 March and featured a panel discussion led by Professor Henry Brodaty with Dr Andrea Lees, Sue Tolhurst, Bill Yeates and Dr Stephanie Daly. They describe the challenges and practical solutions in negotiating the Australian health and aged care systems to find treatments and supports post diagnosis.
Watch the Webinar

Interview for people with dementia

We are looking for people who have recently been diagnosed with dementia (in the past 2 years) to participate in an interview about their experiences with the Forward with Dementia program.

  • 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.

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

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.

Last chance: Win one of ten $50 vouchers!

You are invited to provide feedback on our website and other activities as part of the Forward with Dementia program.
  • People with dementia and their supporters, carers and family can participate in a 20-minute survey by clicking on the link in the yellow button below. Everyone who returns a completed survey will go in to a draw to win one of ten $50.00 shopping vouchers.
  • Others involved in dementia diagnosis and care can provide 2-minute feedback via the link directly.
This will help us with further development and future efforts to improve post-diagnostic support for people in the 12-months following a dementia diagnosis.
Take the Evaluation Survey
Thank you in advance 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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Our mailing address is:
Centre for Healthy Brain Ageing (CHeBA)
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Room 305, Level 3, AGSM (G27)
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