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December 2022

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Tips for coping with the festive season

It is that time of the year again when the festive season is upon us! Social gatherings are again becoming the norm, and many will be looking forward to travelling with the easing of COVID-19 restrictions. This may mean having more visitors at home or even travelling overseas.

Tips for people with dementia:

  • If you are meeting family members you may not have seen for a long time, they may notice some changes. Acknowledge your feelings about the dementia diagnosis and reach out to your family members and/or friends if you’re ready. Work through if or what you want to tell them about your diagnosis. Try using our Circle-of-Friends-Worksheet  that will help you think through how, what and when to tell family members and friends.
  • Big gatherings can feel overwhelming, but don’t miss out on the fun!
    • Keep gatherings to a small number of people. Try a number of small gatherings than one huge party.
    • Simplify, simplify, simplify! Keep the focus on what matters – connections with other people and ditch the elaborate meals and decorations.
  • If you live alone or have limited family or social connections, do not hesitate to reach out!
    • Seek out companionship with your neighbours or within your community.
    • Some local councils, clubs and churches have celebrations. Support services will know about these in advance, so don’t hesitate to ask.
    • Usual support services may shut down over the holiday period. Talk with support service co-ordinators about alternative supports
    • Read our recent article on Social inclusion for people living with dementia.
  • Plan ahead. Be prepared in advance with meals, shopping, and medications. Pre-arrange services that are essential to your support.
  • When out and about, try avoiding crowds and peak travel times. Use the I-have-dementia-card if you are happy to let others know they may need to be patient.
  • If travelling, be prepared and consider having another person to accompany you through the preparation and the actual trip.
  • It’s OK to say no if you’re not feeling up to it – be it having visitor, or going somewhere, or doing something festive.
  • Do something positive for yourself and make time for yourself. Find an activity you enjoy that reduces stress and restores your inner calm. For example, get in to nature, go for a walk, listen to music.
  • Look after yourself – limit your alcohol, maintain healthy habits like eating more vegetables and exercising. Ensure you get adequate rest.
  • Seek help if you need it. The National Dementia Helpline 1800 100 500 operates 24 hours a day, seven days a week, 365 days a year.

Tips for carers:

  • Discuss the holidays with your person and ask how they feel about the usual celebration. It’s OK to have less activities and only stick to some traditions that are most meaningful.
  • If appropriate, give family and friends an honest update about your person’s condition, particularly if they haven’t seen the person in a long time.
  • Do not hesitate to let them know how you or your person want or don’t want to be treated. Read the article: 2.11 Managing how others treat you and the person you support.
  • Prepare your person for visits if helpful, by showing them a photo of the visitor or talking about the visitor before they arrive.
  • Limit the number and size of gatherings and spread them across different days or weeks. Do not hesitate to postpone or even cancel.
  • It is OK to ask guests to use a COVID-19 rapid antigen test (RAT) before visiting, especially if you or the person is in a high-risk group.
  • Have a balance between keeping routine to as close as possible and participating in holiday festivities.
    • Share memories by playing familiar music, serving familiar foods, or doing activities that are part of your favourite traditions.
    • Have plans to redirect or retreat to a quiet space if things become overwhelming.
    • Share the care with family or friends so your person is not left alone when you are hosting an event at home or going out as a group.
  • If travelling, be prepared. Be ready to leave early, check if the destination and accommodation is dementia friendly, plan travel routes, pack extra clothing and food and allow extra time. Read the Forward with dementia tips on travelling with dementia.
  • Last but not least, be kind to yourself.
    • Do something positive for yourself and that you enjoy. Make some time for yourself.
    • Remember, critical or insensitive comments don’t matter. These are usually made be people who are poorly informed. Suggest they read the Forward with dementia website.
    • Ask family and friends for help. Many people are only too wiling but don’t know what might be helpful.
    • It’s always OK to say no!
  • Seek professional help if you need it. You can reach out to get advice from either helpline in advance. It’s free. 
    • The National Dementia Helpline 1800 100 500 operates 24 hours a day, seven days a week, 365 days a year.
    • Dementia Support Australia 1800 699 799 also operates 24/7, 365 days a year and will assist carers to manage situations.

Tips for family and friends:

  • There may be people around you living with, or caring for, someone with dementia. it is easy to become isolated, and this can feel especially hard over the holiday season. Check-in with people with dementia and their carers. If able, offer to drop a meal in, or offer to take them out shopping or a walk, or they may be happy to just have someone to talk to.

We hope these tips are helpful during the festive season. Most importantly, stay safe and enjoy the holidays!

Medication Update: Lecanemab

By Scientia Professor Henry Brodaty

 

On 27th September 2022, Eisai and Biogen published a press release with results from their Phase 3 trial of an anti-amyloid antibody lecanemab. The drug slowed decline on the primary outcome, a global measure of cognition and function called the Clinical Dementia Rating Scale Sum of Boxes (CDR-SB) with scores ranging from 0-18.

On the CDR-SB lecanemab was superior to placebo over 18 months by 0.45 points. This was heralded as a 27 percent reduction in decline over 18 months in the primary clinical outcome; there were smaller declines in secondary clinical endpoints.

The response to this announcement has been mixed. On one hand many commentators have questioned the clinical significance of such a small reduction. They are reserving judgement until they see the data.

On the other hand, the companies and those supporting the amyloid hypothesis for Alzheimer’s were excited as this is the first drug to demonstrate a benefit on a primary outcome in a randomised controlled trial for early Alzheimer’s disease.

Side effects occurred. The incidence of the brain swelling or oedema known as ARIA-E and microhaemorrhages was 12.5 percent, about one-third of that seen with Biogen’s approved anti-amyloid antibody aducanumab (also known as Aduhelm) which was approved controversially by the Food and Drug Administration in the United States (US) in June 2021.

Where to from here?

More results may be released at a conference in early December in the US. It is likely that the companies will make application to the FDA in the US, a process which will take some time. The outcome will depend on the details of the data. However, based on the accelerated approval awarded for aducanumab, the FDA may well give approval.

Other considerations are costs, not yet discussed, and administration. In the trial the drug was administered intravenously by intravenous infusion every two weeks. It is not clear for how long the drug will need to be given.

In Australia, the Therapeutic Goods Administration (TGA) is more cautious and FDA approval for lecanemab does not mean TGA will follow. Whether the US or Australia approves subsidised medication is even less certain. For now, watch this space.

In other news...

On 14th November 2022, Roche and Genentech announced negative top-line results for their anti-amyloid antibody, gantenerumab. The drug failed to slow cognitive decline on the CDR-SB. More results for lecanemab and gantenerumab are set to be released at a major conference in early December.

NOTE: Since this article was written, an article was published in the New England Journal of Medicine with more detailed results of the Phase 3 trial of Lecanemab.

New research promoting timely dementia diagnosis

The Promoting Timely Diagnosis of Dementia project commenced 1 October 2022,  and is funded by the Australian Government’s Medical Research Future Fund.

The project is led by the University of Sydney’s Professor Lee-Fay Low who is working with several of the co-designers and researchers from the Forward with Dementia team, as well as new collaborators.

The project aims to increase public knowledge about the benefits of dementia diagnosis and treatments and services, decrease stigma, and increase motivations and triggers to get help. The project also aims to increase skills in dementia detection and management in primary care.

The team comprises researchers from six Australian universities who will work alongside people living with dementia, carers, general practitioners, practice nurses and practice managers as well as primary healthcare networks.

The interventions will be tested in in Western Sydney, Western Victoria and Adelaide. The team will compare the public health campaign and a primary care practice change program implemented individually or jointly.

Participate for your chance to win a voucher

Researchers from the new Timely Diagnosis Research Project need to speak to people from Adelaide and Greater Sydney:
  • who are worried about their memory or that they may be getting dementia; OR
  • who are worried that someone they care for might have dementia; OR
  • who have recently been diagnosed with dementia, or care for someone recently diagnosed.

Take part in university research (interview or focus group) about the benefits and barriers to seeking a dementia diagnosis. Participate online or face-to-face (Adelaide or Sydney-based university campuses).

For more information, contact Annica Barcenilla-Wong phone 02 9036 4024 or email: annica.barcenilla@sydney.edu.au.

Sleep and dementia

Sleep problems are common among people living with dementia and their care partners.

As people get older, they experience changes to their sleep patterns such as needing less sleep, going to bed earlier, waking earlier, taking longer to fall asleep, and experiencing poorer sleep.

People with dementia sometimes experience problems with their sleep including not being able to get to sleep or stay asleep at night, and sometimes feel very sleepy during the day.

Strategies for sleeping better include:

  • Go to bed and wake up at the same times each day
  • Prioritise sleep
  • Take shorter naps in the early afternoon
  • Follow a routine for going to bed, including 30 minutes to wind down
  • Have a comfortable mattress and pillow(s)
  • Consider thermo-regulated bedding that keeps you at the right temperature
  • Don’t drink right before you go to bed, to reduce the need to go to the bathroom
  • Avoid caffeine drinks from mid-afternoon and consider trying non-caffeinated teas or decaffeinated coffee
  • Avoid use of computers or other sources of blue light before going to bed
  • Exercise during the day
  • Getting outside in the morning sun can help improve sleep at night.
For more information on the Forward with Dementia website read: 4.4 Rest well and the recent blog post on the Monash University research project to improve sleep and wellbeing.

For more information on external sites, visit the Sleep Health Foundation website.

SPICE: post-diagnostic support in the ACT

There is growing recognition of the need for post-diagnostic support for people with dementia and carers that meets their individual needs, mobility and personal preferences, while also providing opportunity for social engagement and peer support.

The Sustainable Personalised Interventions for Cognition, Care, and Engagement (SPICE) program is a new multi-component intervention which aims to address this need in the Australian Capital Territory (ACT).

SPICE is an intensive 12-week program for people with dementia and carers that combines multiple evidence-based components. The SPICE program promotes quality of life and physical and functional capacity among participants, as well as a toolkit of strategies and resources for the future.

The program includes:

  • Physical activity for both people with dementia and carers tailored to their abilities
  • Cognitive stimulation therapy – a semi-structured discussion and activity program
  • Comprehensive nutritional assessment
  • A carer education, mindfulness, and capacity building program
  • Care of People with dementia in their Environments (COPE) program

The SPICE program is primarily delivered twice per week by Canberra Health Services allied health professionals at the University of Canberra Hospital, but also includes ten home visits from an occupational therapist and three appointments with a dietitian.

People living in the ACT with a mild or moderate dementia diagnosis and their primary carer may be eligible to participate in the SPICE program. The program is free and participants will receive a $100 gift voucher to help offset travel expenses.

Download the SPICE Program Flyer and/or contact Nathan via email nathan.dcunha@canberra.edu.au or phone 02 6206 8585 for more information.

Pictured above are three of the clinicians delivering the SPICE program: Julie Bishop, Michelle Bennett, Rosalie Brennan.

*The SPICE program is supported by the Dementia Australia Research Foundation Hazel Hawke Research Grant in Dementia Care.

Other post-diagnostic support programs

Forward with Dementia has showcased a range of new or existing post-diagnostic support programs offered in Australia. This information is vital for people newly diagnosed with dementia and their carers. Previous website posts include:

Wishing all our subscribers a very happy new year in 2023 🎉🎉🎉
We will be back with more news in February 2023

Forward with Dementia information

Read About Us or email forwardwithdementia@unsw.edu.au or leave a message on Tel: (02) 9065 7307. 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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Centre for Healthy Brain Ageing (CHeBA)
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