Copy
View this email in your browser

May 2022

Contents

Aducanumab (Aduhelm)

Professor Henry Brodaty provides an update on the latest, controversial anti-dementia drug

Aducanumab, made by Biogen and sold as Aduhelm, is one of several antibodies being developed to attack the amyloid protein. In June 2021, the US Food and Drug administration (FDA) gave accelerated approval to aducanumab on the basis of its benefit on an intermediate outcome, mainly the reduction of amyloid in the brains of people with Alzheimer’s disease.

Great controversy followed. The FDA expert advisory committee almost unanimously rejected approval being given. Major hospitals in the US decided not to prescribe aducanumab. The FDA ordered an internal review of their approval process. The European Medicine Agency ruled against giving approval.

In March 2022 an independent analysis by Ross et al. published found there was no cost benefit from using this medication. On 7th April 2022, the US Centers for Medicare and Medicaid Services (CMS) confirmed that it will not approve subsidisation for medications targeting surrogate endpoints; they will only cover anti-amyloid antibody treatments in the context of clinical trials with strict conditions.

This has occurred against a background of the side effects and costs of aducanumab. The most notable side effects are brain oedema and microhaemorrhages which affected about 30% of trial participants. These generally were mild and resolved without ceasing the medication but not always.

Aducanumab is not cheap. It is given by monthly intravenous infusions for a year with the cost initially set at AUD$6000 per treatment or $AUD$72,000 for the first year. The adverse publicity and controversy led Biogen to halve the cost.

Finally, after all this activity, Biogen published on March 18, 2022 results of it two pivotal trials. In one of the studies, those on the higher dose of aducanumab did achieve significant benefits but not those on lower dose. In the other study no significant benefits were reported.

Aducanumab is one of several antibody studies underway. Both gantenerumab (Roche) and lecanemab (Biogen/Eisai) are expected to have Phase 3 data this year, with donanemab (Lilly) not far behind.

What to make of all this?

First, it is encouraging that big Pharma is investing heavily in finding a disease modifying treatment.

Secondly, despite the uncertainty of how beneficial aducanumab is, there is a strong signal of positive changes in the brain.

Questions remain about what is the best dose, to balance benefit over side effects, and which is the optimal antibody from those under development. It may be that more than one drug for Alzheimer’s will be required; combination therapy is common in many other diseases such as cancer, heart failure and Crohn’s disease.

Meanwhile, people with dementia can do a lot to maintain their quality of life. Check these articles on the Forward with Dementia website: 

Pet therapy

Pet therapy has grown in popularity since the 1990s and some of the known benefits for older people include:

  • Improved joint movement and motor skills
  • Improved independent or assisted movement
  • Increased self-esteem
  • Improved verbal communication and interactions with others
  • Decreased depression, isolation and loneliness
  • Reduced anxiety.

Types of pet therapy can range from occasional interactions between an individual or group with a pet and pet trainer (Animal Assisted Activities), through to daily reliance on a pet, such as the use of a highly trained assistance dog.

Animal Assisted Therapy is delivered by qualified professionals (including allied health workers) to either individuals or groups. Animals are incorporated into the assessment and/or treatment process. Goals are identified for each individual involved and the process is documented and evaluated. For more information on Animal Assisted Therapy and to find a provider in your area, visit Animal Therapies Australia.

Animal Assisted Activities include therapeutic animal visits by a trained handler to people in hospitals and aged care facilities to alleviate stress, improve wellbeing, provide a distraction for pain management and to provide therapeutic relief. For more information on therapy dog visits and other therapy activities, see The Delta Society (Australia wide)

Assistance Animals (often dogs) are trained to perform one or more tasks to help their handler better access public life and manage their health condition (including physical, cognitive and emotional conditions). People with dementia living at home can consider applying for a trained assistance dog (see for example Phil Hazel’s experience below). Assistance or service dogs are trained to complete a range of helpful tasks to enable you to continue to be independent for as long as possible. For more information on Assistance Dogs, read Phil Hazel's experience below and visit Assistance Dogs Australia.

Phil’s experience with his assistance dog, Sarah

Phil Hazel was in his mid-50s when he received his dementia diagnosis (read Phil’s diagnosis story on the Forward with Dementia website).

About 12 months after the diagnosis, his psychiatrist suggested he look into an assistance or service dog. After completion of their training, service dogs are allowed anywhere except zoos, court and operating theatres. Phil’s golden Labrador, Sarah, has even stayed in hospital with him.

It cost $43,000 over two years to train Sarah. It was a very stringent training regime with exams every three months, in the lead to the public access test to become licenced. Phil has had Sarah since she was 8 weeks old. At the start, a trainer came three times a week, at a cost of $120 an hour, to train the handler and the dog. The public assess test is gruelling, but Sarah passed first time. She must complete the final exams every two years now to keep up her licence.

Labradors are mainly used as assistance dogs as they have high acceptance rates among the public. Phil has noticed some fear of dogs among groups. He adjusts if he notices this, and tries to reduce other people’s anxiety, for example, by waiting and taking another lift.

Sarah must be the happiest dog in Sydney! She gets excited when she sees her jacket, as it signals work mode! Sarah has very high skill levels, and accompanies Phil everywhere, in taxis, on walks, and on planes where she has a window seat and won’t move.

They took two flights together before Sarah graduated. First when Sarah was 9 months. She barked a couple of times as she was stressed but did not move. On their second flight, Phil took her with him when he went to the toilet and put her in the down position. But she went into business class, so he had to explain she was still in training!

When Phil first got Sarah he was not on the NDIS. He now hopes to get another pup in a couple of years and anticipates the NDIS will pay. Sarah gives Phil the confidence to do things on his own. She comforts and cuddles him when he feels uneasy, apprehensive or disorientated.

To learn more about Phil and his experience with assistance dogs, you can also watch this Dementia Alliance International webinar.

Top tips on navigating the system

Finding supports after a dementia diagnosis

Last month we held the webinar: Navigating the system, finding supports after diagnosis with with Prof Henry Brodaty, Bill Yeates, Dr Stephanie Daly, Dr Andrea Lees, and Sue Tolhurst, and now we have compiled some of the Top Tips from the discussion, including key quotes from our panelists:

Bill Yeates: Dementia Advocate

Make a life plan and be positive

"There is hope and a lot of it has to come from within you. You have to understand and accept the diagnosis. As soon as you can do that, you can start moving on with your life.”

I didn’t process my diagnosis at all well. For the first time in my life, I felt completely helpless and scared. I didn’t know what the future would hold for me and my family.

In the end, from my own research, I created a personalised plan to get my life back in order. Besides the many changes I made in terms of my lifestyle and the introduction of non-pharmaceutical interventions, the key component that flows through everything I now do on a daily basis is positivity.

Positivity for me, is more than just a mindset or a feeling. It’s basically a way of life where you simply believe in yourself. You’ve accepted the diagnosis, you understand the limitations of it, and now everything you do moves towards having a better life.

"You might think you are, but you’re not alone. Your family and friends are very important too. It’s not hopeless.”

Dr Stephanie Daly, General Practitioner and GP Educator

Visit your general practitioner (GP) and get a plan

When you’re first diagnosed, there are so many things your GP can do, but it’s hard to talk about all of them in the first appointment. So go back to your GP and ask for a chronic disease management plan.

These plans allow for visits up to four times a year (every three months) where you meet with the practice nurse (for about 40 minutes) and the GP (for about 20 minutes) to manage your condition.

This gives your GP time to look holistically at your health and consider the best way to manage symptoms and structure supports such allied health practitioners.

GP management plans are useful for conditions such as dementia but you may have one that incorporates all your chronic diseases as the single plan covers all of these conditions.

As part of your plan, you get five subsidised visits to allied health practitioners each year. If you are experiencing trauma and distress your GP can also arrange a mental health plan with subsidised visits to a psychologist or counsellor.

Dr Andrea Lees, Geriatrician

See your specialist and talk to Dementia Australia

In our clinic, after the diagnosis is made, we ask permission to make a referral to Dementia Australia. Dementia Australia follow-up by contacting the person within the next two weeks and provide ongoing support and professional counselling. Dementia Australia also provide a range of education sessions, such as the Living with Dementia program, or sessions about how to access support via My Aged Care.

We also recommend newly diagnosed people:

  • Visit their GP for a chronic disease management plan, and Mental Health plan if they need emotional support.
  • Get in touch with Dementia Support Australia if the person is a little bit more advanced on their journey and having behavioral and psychological symptoms.
  • Talk about treatment options to maintain and improve cognition as well as medications available that geriatricians and neurologists can prescribe.
  • Consider plans and long-term decisions that may be needed about driving, finance, accommodation, etc.

"I like the [Forward with Dementia] checklist of [suggested] questions people can ask their healthcare professional. There are a lot of questions so it’s important to pick what's most important to you at that particular time.”

Sue Tolhurst, Social Worker and
Dementia Advisor

Get to know your local services and supports

"For people who are comfortable with the Internet, Forward with Dementia is a really great option for looking at strategies to help with those early stages, when you get your diagnosis and planning for the future. I think it’s a great website.”

When first diagnosed some people get too little information and some people get too much. We need to find out what the person who is diagnosed sees as most important and consider that many people may not be able to access the Internet for information.

Try to find out what’s available locally in your area:

  • There may be a local dementia advisor or key worker who can link you in with local services and supports.
  • See if there are Dementia Australia programs in your area.
  • Go along to your local dementia cafe or support group meeting to connect with other people in a similar situation.

This will help you to feel more comfortable talking about your diagnosis, and you can learn from other people’s experiences.

"You have to learn to live with dementia and there is still a lot of joy to be found in the world. Focus on fun, good times and the things that you’re still able to do and enjoy.”

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 surveyhttps://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.
Please click here if you would like to order resources for your clinic.

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.

Twitter
Facebook
Website
YouTube
LinkedIn
Copyright © 2022 Cognisance. All rights reserved.

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

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.