DOC 12 Cheat sheet for dementia carers when first diagnosed 21 March 2019
I have resubmitted this document to the Royal Commission for Aged Care and to the Royal Commission for Mental Health 11 August 2019
July 2019 I have sent this link, as well as My Carers Tips and an Ideal Carers World to the Australian Medical Association who suggested I write to the Royal Australian College of General Practitioners to ensure every GP has access to this information. The President kindly replied " We are currently updating our aged care guidelines. The guidelines will include advice to GPs about the importance of support for family and carers and will direct GPs to resources like Dementia Australia."
I sent the spreadsheet below to the Royal Australian College of General Practitioners on the 19th September 2019 you may find useful for your aged care guidelines website for all GP’s.
This is a work in progress, updated 26 September 2019, as I keep learning of new invaluable information
I found the journey of being a full time carer to my mum, so incredibly hard, as it is so difficult to navigate the bureaucratic system for assistance. That alone is a full time job. This has taken me 6 years to collect all this information.
I wrote this carers cheat sheet to empower all carers so they can access the assistance they need NOW rather than taking years to find out what is available, which is what happens now.
So all carers are able to provide the best care to their loved one who has dementia.
The global dementia pandemic is like climate change affecting everyone on the planet.
Why, because 1 in 3 will be diagnosed. 1 in 10 become carers, destroy carers health and financial security and the governments are forcing most carers onto welfare for the next 30 years in their old age with ill health, after all our sacrifices.
For many the costs to put their loved one into an aged care facility, is just too expensive . Did you know 70% are cared for at home by loved ones.
The anguish and despair I read on all the Facebook dementia carers groups I have joined around the world, breaks my heart. Sadly this is the reality of every carer.
Unless someone speaks out nothing will change and I’m determined to protect our futures.
Every General Practitioner - Doctor (GP) in Australia should hand this information to every carer when their loved one is first diagnosed with dementia
For those in other locations around Australia and the World, you will have similar services provided in your location, that you can look up online and access.
My dream is for every location around the world to have a cheat sheet for their services including links and if they don't have these services, create them.
2013 my beloved mum was diagnosed with dementia it has taken me all this time to find out all this information.
Other carers have provided some invaluable suggestions which I have included in this cheat sheet.
Most GP's have little knowledge about the dementia journey for carers
After the Mini Mental of 30 questions with your GP and they have a decline in their memory capacity you will be referred for diagnosis with a Geriatrician
You will need to see your solicitor / lawyer to organise a Power of Attorney and Guardianship
They give you way too much information and this is what you need
When first diagnosed for dementia
Key phone numbers
Dementia Australia - phone number 1800 699 799
My Aged Care - phone number 1800 200 422
If diagnosed with dementia under 65 years of age apply for NDIS 1800 800 110
Carers can call Carer Gateway relevant to their needs and linking to organisations that can provide assistance 1800 422 737
https://www.carergateway.gov.au/
Dementia Alliance International
is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . We seek to represent, support, and educate others living with the disease, and the wider dementia community. We are an organization that strives to provide a unified voice of strength, advocacy and support for our rights, individual autonomy and improved quality of life.
We provide online support groups and other activities for our members, free of charge in number of different time zones.
https://www.dementiaallianceinternational.org/
2019 Award Winner: Best Caregiver Website,
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7 Steps for Hiring a Caregiver for In-Home Help
Why a Daily Routine Is Important for Seniors: 3 Top Benefits
Reminiscence Therapy for Dementia: 4 Ways to Bring Joy and Comfort
Activities for Alzheimer’s & Dementia
Join Dementia Carers Facebook Groups
You will find these wonderful groups a huge support on your journey as a carer, where you can learn from their experiences, vent your frustrations, ask questions and for advice, they share their knowledge.
Care About Website 1300 713 407
Our team will clearly explain how different Government subsidies work and how to access the support you need. We'll take the time to understand what your health, lifestyle and cultural preferences are. The providers we recommend have been carefully evaluated so that you know the choice you make is one you can trust
DEMENTIA is a group of symptoms common to over 50 disorders. Alzheimer's disease is the most common type of dementia. Learn about the 10 most common types of
https://www.alzheimersweekly.com/2013/07/10-types-of-dementia.html?spref=fb&m=1
Register for free training on dementia, the various stages and what to expect, to help you understand the various stages of dementia
https://health.dementia.org.au/
iSupport is an online training programme to support caregivers of people living with dementia by the World Health Organisation
https://www.isupportfordementia.org/en
Watch on Youtube Tepee Snow which has videos on dementia that will assist you
https://www.youtube.com/playlist?list=PLqMTqkHkJstYY3MkjuGXKjMXo_mAUubSS
Read the Book 36 Hour Day by Nancy Mace
How do you tell children about dementia, this link may assist you, it also has a link to recommended books for children
https://www.youngdementiauk.org/telling-children
Ensure you join a local carers support group
https://www.dementia.org.au/services/carer-support-groups
There are carers support groups that are run after hours, which will be invaluable as you start your journey of being a dementia carer. You will not feel like Robinson Crusoe, you can vent, learn from others and make friends with other carers. Unless you have lived it, no one undertands
Organise for them to go out with your local seniors community group who will have outings and activities, essential for their well being and gives you a break
https://www.dementia.org.au/services/programs
What is Ageless Play?
“Old People’s Home for 4 Year Olds”,aimed at raising awareness of the benefits of intergenerational care programs and play for all ages.
Ageless Play seeks to bring together the generations through a range of playgroup programs, supporting communities and nurturing relationships through play.Playgroup State and Territory Organisations have partnered with ABC TV + iview and are delighted to be taking part in a campaign for a new series,
https://www.agelessplay.com.au/
Register for ACAT assessment by phoning MY Aged Care 1800 200 422
You can organise for another ACAT assessment after 12 months, as your loved one will decline and you can access more services to assist you.
Dementia ID bracelet order through Dementia Australia - ring 1800 699 799
Clean out their home, if they accumulated many things over many years
Walk in shower with shower chair
Simplify their clothes
Clock that tells the time, date, day of the week and month, essential for every carer to stop the endless repetitive questions
Install disabled shower rails they become unsteady on their feet
Companion Card Cardholder Application Form
This allows you to take your loved one out to the movies, theatre, ballet, museums. Your ticket will be free, as your loved one, would find it difficult to do these things on their own.
When they are first diagnosed, this is useful, however as they decline, it is just way too hard to take them to a movie. They will ask incessant questions and will not be able to follow the story.
All 16 pages MUST BE printed and send to Companion Card Program. Applications with missing pages will not be processed.
The Companion Cardholder Application form is available in the following format for you to download and print.
Please do not change any settings when printing this form.
https://www.companioncard.gov.au/cardholders_apply.htm
Cardholder Application Form (PDF, 134 kb, 16 pages)
Taxi Subsidy
Here is the link to apply
Taxi Transport Subsidy Scheme (TTSS) Application Form – PDF
Dementia Cafes - worldwide
Where you can meet other carers and their loved ones for some social interaction
https://www.memorycafedirectory.com/
Disabled parking card – Invaluable as they gradually become less mobile, they will need a walking stick, walker and wheelchair, Print off the form, take it your GP to sign and then take the form with your loved one to Services NSW who will organise the card for you
At Westfield you can access additional two hours free parking, you need to see their concierge to register your number plate with your disabled parking card.
https://www.rms.nsw.gov.au/documents/about/forms/45061469-mps-individual-temp-permits.pdf
Carers allowance - when you give up your career, register with Centrelink for your carers allowance - $63.50 per week. This is means tested, you are not eligible if your income is over $250,000 pa, not age tested.
https://www.humanservices.gov.au/individuals/services/centrelink/carer-allowance/claiming
Carers Receiving Carer Payment are automatically eligible for a Pensioner Concession Card, which gives them access to cheaper prescription medicines through the Pharmaceutical Benefits scheme and medical services funded by the Government. This card also gives carers access to concessions provided by the State and territory and local governments
I have written to both Federal Ministers for Aged Care and Centrelink, that this should be automatic, rather than having to apply for it
https://www.humanservices.gov.au/individuals/subjects/payments-carers
Petition for a National Carers Card
https://www.change.org/Nationalcarerscard
Incontinence allowance - register for this $10 a week paid every 6 months, print out this form and take it to your GP to complete and then post it off
https://www.bladderbowel.gov.au/assets/doc/caps/CAPSApplicationForm.pdf
They become like toddlers, throw tantrums, crave sugar and become fussy eaters
Dementia Australia has created Dementia Friends to help others understand dementia. Encourage your friends and local community to sign up to create community awareness. There are similar links around the world.
Who are Dementia Friends?
The people in our community who want to make a positive difference in the lives of people living with dementia.
Why become a Dementia Friend?
Every 3 seconds someone in the world develops dementia.
Knowing how to help and understand the challenges they face you can make people living with dementia, feel accepted and safe.
How do I start?
Create a Dementia Friends account below, there you can listen to people with dementia share their stories and be guided through 3 videos (5 minutes each) designed to increase your understanding of dementia and its impacts.
https://www.dementiafriendly.org.au/user/register
22 November 2019 I wrote to the MD of the Australian Cruise Line Association and requested they ensure all their cruise line members are aware of Dementia Australia Friends of Dementia.
The MD replied "We will certainly mention this to our cruise lines in our upcoming committee meetings, and share the link"
My response "Many thanks for your kind reply. That would be wonderful, this will help all carers who look after their loved ones with dementia who travel on cruises. Creating this much needed awareness will be an enormous assistance for everyone."
Hatzolah is a free service to the Eastern Suburbs community of Sydney
When Seconds Count, Hatzolah Saves Lives phone 02 9371 2222
If your loved one has fallen and you cannot pick them up off the floor, they will come in a few minutes and assist you pick them up, rather than calling an ambulance.
Hatzolah's primary goal is to provide a lifesaving bridge of medical care during the first critical moments of a medical emergency, whilst catering to the unique needs of the Jewish Community, as well as assisting all faiths in the local community.
Our responders are extensively trained and equipped to deal with any medical emergency, and responders regularly attend patients with issues ranging from chest pain, bleeding, full arrest, household accidents, asthma and road trauma.
Hatzolah responders are on stand-by 24 hours a day, 7 days a week, 365 days a year, including Shabbos and Yomtov.
Mable - Redefining support for disability and aged care in Australia. One connection at a time.
Mable is an easy and safe online platform. Connect with people in your community and choose the support workers who share your interests and suit your needs best.
Carers Exhaustion
Commonwealth Respite and Carelink Centre 1800 052 222
https://www.carersnsw.org.au/advice/services-supports/respite-carer-support
In the beginning we all have a very short fuse and are so angry because of all the stupid things they do and the endless repetitive questions. Drives every carer crazy and we all feel like such horrible people when we get angry and upset with them. Luckily as they have no short term memory, they forget, but we do not and we all feel so guilty and ashamed.
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Once you have an ACAT assessment and are in the My Aged Care system. You can access respite care, without a homecare package. Usually respite care is for 4 weeks, rarely less
Respite care 63 days per annum, essential for your well being, you access this through My Aged Care phone number 1800 200 422 and they will give you a code which will provide government subsidised respite care.
Answering their endless repetitive questions requires patience and is exhausting
Learn to live one day at a time worrying about yesterday and tomoz destroys today.
If you cannot access any assistance and are in dire need of help
Uniting is the biggest Aged Care Provider in Australia and is part of the Uniting Church.
Ask your GP to contact your local Uniting Group who have the Geriatric Flying Squad. The squad includes a nurse, Doctor, Physiotherapist
Who will come out and assist you with equipment, nurses for dressing of bed sores, show you how to look after them at home
This is a government subsidized service and is free of charge
No Hospice access in Australia for dementia
We should have access to palliative care in a hospice, when our loved ones are dying, when they are not in an aged care facility and we have sacrificed everything taking care of them at home.
Is Dementia Hereditary ?
No - it can be hereditary but not everyone is destined for dementia.
Over 80 years of age, one in three will be diagnosed with dementia.
My mum had dementia and I’m not interested in getting a test to see if I have the gene for dementia. Why worry about it for the next 20 years, I refuse to, as worrying ruins today.
Mum did everything right and she still got it.
Just like athletes who are fit and healthy and get cancer.
Life is a box of chocolates so make the most of every day
I have also sent this information to the Royal College of British General Practitioners as well as the The American College of Physicians, suggesting they prepare a similar cheat sheet to help every carer when their loved one is first diagnosed with dementia.
American College of Physicians via email
This is their response, If you want things to change in America, write to your local Congressman and make it happen! Ask for a reply and follow up with phone call. Only by asking for their help and the services you need and want, will you make it happen.
Dementia like Climate Change is affecting everyone.
How can you help ?
Write to your local member of Parliament / Congress and ask for their help, perhaps copy these links, to create community awareness, ask for a reply and follow up with phone call.
If everyone sends one email, things will change around the world. It will force them to listen and take action. People power is what we need.
Sure politicians and public servants are experts at fobbing us off. I collect their responses to file 13, going nowhere. But I never give up.
?Of course there are a number who are very proactive, provide enormous assistance and support.
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Together we can change the world.
How can I have any credibility without telling the facts?
Where did I get the fire in my belly to fight for all carers around the world because I have been thru hell by our unjust government legislation and policies in Australia.
The first part is my story and how I found the Herculean courage to be so brave.
So many said to me, when mum got her wings, "you don’t need to fight anymore for carers." I said "no, things must change and I’m determined to help protect all carers."
The second part is the strategies that all our governments should implement because I have lived it and want to protect all of you.
Including employment, taxation, respite care, care expenses, superannuation, national carers card, higher carers allowance, carers app, support services for children who are carers, legal support
An Ideal Carers World to support and protect all carers. With employment and other strategies to protect all our futures from the global dementia pandemic
My carers tips for a loved one with dementia. From Diagnosis to when they get their wings. I made sure we laughed every single day. Dressed mum up every Friday in My Hawaiian shirts and silly hats
I am determined we all work together so we have consistent, just, fair legal and tax rules for every Australian and carer so there is not a huge welfare bill for the next 30 years after all our endless sacrifices, to support carers in their old age
https://www.dhirubhai.net/pulse/revenue-nsw-ministerial-response-you-only-make-me-mastellone-m-com/
I contacted the following organisations 10 August 2019 and sent them this link
United Nations via email and on Facebook
Commonwealth nations via email
African nations via email
ASEAN nations via email and Facebook
South American nations via email
Royal college of GPs UK via email and Facebook
Royal Australian College of GPs via email and Facebook
World health organisation via email and Facebook
I wrote to WHO in August 2019 and they updated their dementia facts in September 2019
https://www.who.int/features/factfiles/dementia/en/
Fact 5: Carers of people with dementia experience high strain
Caring for a person with dementia is overwhelming for carers. The stresses include physical, emotional and economic pressures. Carers require support from the health, social, financial and legal systems.
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Thursday 7 November 2019
Keyboard warrior strikes again! I wrote to the following
Princess Mary of Denmark
PM Boris Johnson
Uk Health Minister
American Secretary of Health
And sent them my speech in Rome at the global dementia conference 15.10.19 on YouTube, plus my articles - carers cheat sheet, an ideal carers world and my carers tips for looking after a loved one with dementia. It won’t happen overnight but it will happen.
26 November 2019 I wrote to the United Nations Human Rights High Commission as well as the World Health Organisation re our Global Dementia Humanitarian Crisis
https://m.seniorsnews.com.au/news/carers-small-voice-to-be-heard-in-big-dementia-wor/3835136/
Huge Honour and am determined we change the world for all carers.
At first I declined as I’m drowning in so much debt. Not from extravagant living but from sacrificing everything to take care of my mum for 6 years and unjust NSW land tax.
It was much too important to miss ?? a once in a lifetime opportunity, that I would regret for the rest of my days, if I did not attend. Qantas does not fly to Rome, so could not use my FF points, have booked and paid for my flights. Confirmed with my family in Rome and Florence I stayed with them.
After my speech in Rome 15.10.19 all the attendees said to me “You will speak at the United Nations in New York, you have so much passion and determination. What an inspirational speech.”
Which is my dream, to protect all carers around the globe, change the world and gain global media attention on my carer strategies
Plus they want me to attend and speak at another conference to be held in June 2020 in Barcelona. I will attend Barcelona even if I have to sleep in a tent as I have no family in Spain.
https://frontiersmeetings.com/conferences/dementia
I want to inspire others at the conferences, so together we can change the world for all carers and protect all our futures.
Love to prove the naysayers wrong, when they say, “that’s impossible, things will never change”.
14-15th October 2019 Dementia Conference Rome
There are attendees/ speakers from all over the globe, Egypt, Nigeria, Germany, China, India, UK, Italy, Thailand and 2, including me from Australia, Singapore, New Zealand, USA.
All their speeches were fascinating and how each of them is researching dementia across the globe at various universities.
They all had various research methods, scientific studies and methodology. Some are professors, molecular biochemical and biochemists. Some are doing stem cell research, genetic structures, molecular research, looking at sleep deprivation and the deterioration of the brain, learning another language and how this can improve the cognitive function of the brain, the connection between diabetes and dementia.
Some use mice or flies for their research.
One spoke of how important sleep is and how lack of sleep and sleep apnea this affects the brain.
Another how insulin affects the brain. With dementia, the brain does not absorb sugar even though they crave it and want to eat it all the time.
Another was studying how the molecules are liquid and then harden and cannot be removed.
Another the structure of molecules and how they change. So they all used control groups and experiment groups to measure their findings and determine the decline or improvements.
Another discovered that using nasal spray with particular molecules can help the brain recover.
Each one, has a unique perspective of how to solve the elusive answer to the puzzle of dementia and working hard to find a treatment / cure.
I had no idea how many across the globe are searching for the answers. It gives me hope so much amazing research is being done and they are having positive results in their findings but sadly it is still a long way off.
They all agree treating the symptoms is not the answer. To find how and why the cells work and destroy the brain is the answer but it is a long way away
They all had graphs and charts and scientific formulations, magnified cells in various stages of research.
I feel so honoured to be amongst such distinguished professors in their field.
And then there is me, Mine of course is nothing like theirs
I said to them we cannot wait for a cure, because so many carers lives are being destroyed as carers are taken for granted, forgotten and ignored. And I’m determined to change this and one day I will speak at the United Nations in New York.
Why is it most caring is done by women, like child rearing and housework which is always taken for granted. Yet without all our hardwork the world could not function.
Am all ready to fire off my ballistic missiles of truth and my hope this is the start of more opportunities and to create awareness, understanding, compassion and protect all carers who make endless sacrifices taking care of their loved ones at home.
My speech in Rome 15.10 19 on YouTube
https://www.youtube.com/watch?v=1FrXlQg0V40
Next year have been invited to speak at 3 more global Dementia Conferences. I want to speak twice at all the conferences as I also want to talk about what it means to be a full time carer, as no one understands, unless they have lived it.
London - March 2020
Montreal April 2020
Barcelona June 2020
This goes completely against my grain, taken courage to set this up. Happy to fund raise for others and I have raised a lot of money over the years for charities and good causes but not for me.
Please assist me to speak at 3 more global dementia conferences in London, Montreal and Barcelona next year. Like climate change, dementia is affecting everyone. My mission is to ensure all carers are respected, supported and protected globally with my carer strategies for every government to implement and to protect all our futures. Unfortunately I cannot afford to self fund to attend after sacrificing everything to take care of my beloved mum who had dementia, even $5 or $10 would be wonderful. Thank you for your support
https://www.gofundme.com/manage/to-speak-re-carers-3-global-dementia-conferences
Chief Operating Officer l Gerontologist I RN I Co Founder Community Home Australia l Human Rights - Dementia | Board Member I Speaker | Founder Open the Doors 2030 Alliance l #OTD2030
5 年Look at the amount of work you have put into this! Deanna - you are a star! What a detailed resource and from someone is living it. Bravo!