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Welcome to the November newsletter!

Forward with dementia challenges stigma and negative stereotypes about dementia and supports people and their carers in the first 12 months after receiving a diagnosis.

Getting back into life and routine after lockdown

By Professor Lee-Fay Low 19.10.21

With vaccination rates for COVID-19 in New South Wales, Australian Capital Territory, and Victoria approaching 80% double doses, health departments are easing or planning easing of social distancing restrictions. Some people are excited by the increased freedoms and are eager to socialise at pubs and clubs and go to the theatre and music events. However, some older people, especially those with underlying health issues, are still worried about catching and getting very sick or dying from COVID.

We know from research that everyone has been affected by lockdowns. Depression, anxiety and stress have been common.  For people living with dementia and their carers, the restrictions and reduced services have been particularly hard. People with dementia have experienced loneliness, low mood, and declines in their thinking and memory. Carers have said that they’ve been doing more to support people with dementia, and also felt isolated and stressed.

Health risks for older people now restrictions are ending

Lifting of restrictions comes with the assumption that more people will get COVID. When vaccinated people get COVID they aren’t likely to get very sick, or die. The risk of dying from COVID in Australia is 0.4%. However, the risk is higher in older people, with the majority of COVID related deaths in older people with other medical conditions.

Since children 12-16 are not all vaccinated, and vaccinations aren’t been given to children under 12, authorities are expecting infections in schoolchildren. While children don’t usually get very sick, there is a risk that grandparents might catch COVID from their grandchildren.

Tips for how to get back into life after lockdown

  • Take your time. Take a few weeks to get used to going out again.
  • Prioritise activities. Do the things that are most important to you first, like seeing family, getting a haircut, or shopping for that thing you’ve been needing.
  • Plan one activity rather than many on the same day. You might feel really tired after your first big outing, as you get used to being out in the world again.
  • Choose lower COVID-risk activities if you’re concerned. If you are feeling worried, choose to do things which are lower risk. For instance, meet outside, or at home rather than in a café or restaurant. You might increase your social bubble slowly, seeing family and close friends first.
  • Socialise in smaller groups first. People with dementia might find socialising in a smaller group easier, especially when out of practice. It might also be more comfortable socialising in a place that is not noisy or crowded. It takes more effort to concentrate on the conversation in noisy settings.

Find routines

You might want to go back to some of the routines you had before lockdown (e.g. family dinner on Fridays, golf on Saturdays, church on Sundays).

You might also find new routines that suit you better (e.g. golf on Wednesdays so that outings are spread out a bit)

This may also be an opportunity to start a new physical activity or social activity (e.g. join a local walking club, or council senior’s group, or dementia friendly café). For more ideas, see 4.9 Join a group to be more socially active. 

Get rehabilitation

People with dementia might find it harder to do things after the break imposed by lockdowns. If you find your physical strength has deteriorated, consider seeing a physiotherapist or exercise physiologist who can help with exercises to build muscle strength and mobility.

If you find it’s harder to manage getting out and about (e.g. with public transport), an occupational therapist can help people with dementia with strategies so they can continue to do things they enjoy.

Now might be the time to tend to other health issues that you’ve put off seeing the doctor about during lockdown.

Keep helpful changes

If changes you made in lockdown are helpful, healthy or enjoyable, then keep them going.

For example, if you arranged for home-delivery groceries and you like this arrangement, keep it going (particularly if it frees you up for more meaningful social interactions with family and friends).

If you exercised more during lockdown, this is also a great routine to continue, particularly given the benefits of physical activity for people living with dementia.

Your say on Forward with Dementia

Please provide feedback on our website and other activities in the Forward with Dementia program. This will help us to further develop the website and improve post-diagnostic support for people in the 12 months following a dementia diagnosis.


Thank you in advance for your time.

Improving the dementia diagnosis experience

Most people feel overwhelmed when first diagnosed with dementia. They described a sense of being lost and wondering “what next?”.

Our research found that many people, when diagnosed, were not given printed information, a care or support plan or even a follow-up consultation by their specialist. Many reported dissatisfaction with their diagnosis experience, and said their specialist failed to connect them to support services or give them any sense of hope.

A key objective of the Forward with Dementia program is to improve the dementia diagnosis experience for people living with dementia and their carers.

Tools and resources for healthcare professionals

The program targets healthcare professionals via a media campaign and webinar series to improve the diagnostic consultation and ensure the provision of post-diagnostic support.

The Forward with Dementia website provides a healthcare professionals portal with a range of tools and resources. For example, the Checklist for communicating a diagnosis and care planning encourages doctors to arrange follow-up and care planning, and provide written information including contact details of key support organisations. Soon, we’ll be sending printed tools and resources to dementia specialists throughout Australia. We’re also promoting this website as a resource they can show their patients to help them in their first 12 months following diagnosis.

Tools and resources for people with dementia and their carers

The Forward with Dementia website helps people with dementia and their carers to better understand the diagnosis. This includes information about the types of dementiathe progression of dementia, plus a downloadable Possible questions for your doctor. We recommend newly diagnosed people and their carers can learn from other dementia experts, including advocates and people living well with dementia.

When we evaluate the impact of this program over the next six months, we hope to find significant improvements in how dementia diagnoses are communicated, and the support and written information provided to patients.

New video resource
Watch this 2-minute video where Professor Henry Broadaty encourages doctors to:
  • communicate information
  • show compassion
  • convey hope, and
  • ensure timely follow-up.

WEBINAR: Thursday 11 November 5pm AEDT
Rethinking support after dementia diagnosis:
Unmet needs and evidence for rehabilitation

 Professor Lee-Fay Low 
Faculty of Medicine and Health
University of Sydney
A/Prof Lyn Phillipson
School of Health and Society
University of Wollongong
Australians with dementia and carers receive minimal health treatments and psychosocial supports following diagnosis.
This webinar, presented by Professor Lee-Fay Low and chaired by A/Prof Lyn Phillipson, targets healthcare professionals working in dementia diagnosis and care.
The webinar describes the unmet needs of people living with dementia and carers for information, psychosocial support, treatments to optimise function and wellbeing.
There is a strong evidence base that physical exercisecognitive stimulation therapyoccupational therapy and carer programs improve outcomes for people with dementia. 
There is also emerging evidence for the benefits of multidisciplinary rehabilitation programs and psychotherapy for anxiety and depression associated with dementia.
The webinar will present practical suggestions on how clinicians can help people with dementia and carers obtain rehabilitation and additional supports after diagnosis.

Celebrating Carers

We celebrated all carers of people living with dementia during National Carers Week in October and shared some of their inspirational carer stories on our website :
Tracking the campaign
Over the past few weeks, Forward with Dementia appeared in the following news sties:
  • Australian Ageing Agenda
  • ABC Radio Illawarra
  • Australian Nursing and Midwifery Journal
  • Aged Care 101 | The Donaldson Sisters
  • BioSpectrum Asia Edition
  • Community Care Review
  • Hospital and HealthCare
  • Mirage News
  • The Conversation
  • The Senior
Past presentations on Forward with Dementia include:
  • Swinburne Wellbeing Clinic Education Webinar
  • ReThinking Dementia Diagnostic Conversation Webinar
  • Australian Dementia Network Webinar: Post-diagnostic support – how ‘Forward with Dementia’ and Dementia Australia can help
  • Keeping Connected, Social Health and Ageing Webinar
  • “All the questions you were afraid to ask” - A Dementia Action Week activity conducted by Western Sydney Local Health District
  • QLD conference of Statewide Older Persons MHAOD clinical group.
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Our mailing address is:
Centre for Healthy Brain Ageing (CHeBA)
UNSW Medicine, School of Psychiatry
Room 305, Level 3, AGSM (G27)
Gate 11, Botany Street NSW 2052 AUSTRALIA

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