Dementia and Related Disorders Conference 2021

The Sunshine Coast Dementia Network is proud to announce its Conference programme which provides a wealth of knowledge and experience. The key note speakers are:

Dr Lavinia Codd, is the Advancement Manager, Queensland Brain Institute, The University of Queensland.

Dr Codd will give an overview of the types of Dementia highlighting the various research approaches and some of the current findings of the different labs that make up the Clem Jones Centre for Ageing Dementia Research at the Qld Brain Institute.

David Muir, AM (Member of the Order of Australia), Chair of Clem Jones Group will present an overview on the Clem Jones Foundation’s support for dementia research and for voluntary assisted dying legislation.

He will provide attendees an update on the Qld Government Legislation on Assisted Dying.

Vincent O’Rourke, Author of the book, “I Wish I Were a Leper” titled due to his wife’s wish to be a leper as in Jesus’s time, He may have healed her.

Vince was the carer of his first wife, Margaret who was diagnosed with young onset dementia of the Alzheimer’s type. His presentation will give reflections of his caring role and its challenges.

Staff from Carer organisations will discuss specific support in counselling, group work, financial support, advocacy and respite.

Carers Gateway – Wellways – Jacqueline Murray

Carers Queensland – Tim Greenwood 

Vascular Dementia is one form that is considered preventable. Dietary Considerations in Dementia and Related Disorders is important as well when a person is diagnosed with dementia or vascular health issues such as heart disease, stroke or diabetes. Health professionals in diet and diabetes will inform attendees of how to lessen the risk of dementia and also improve health and quality of life.

Speakers from Plena Healthcare – Maddie Cornwall, Dietician and Diabetes educator – Kerry Roach, Sunshine Coast Hospital and Health Service are experienced in these areas of advising patients on their dietary and physical needs.

For seniors, it is best to prepare and plan for Aged Care (65 and over). Peta Simpson, Manager, New Staff Home Care Support will speak from her lived experience of caring for her father who had Parkinson’s disease and professional operation of services on the process of gaining in-home care support from My Aged Care.

Tanya Dave, Gerontologist and Director IAgeWell is a well known entrepreneur and community worker who organises the IAgeWell over 50’s Lifestyle Expo, (October 13th, 2021) and its magazine. Tanya will support attendees on how to choose a nursing home / Residential Aged Care Facility which can be a most difficult decision for a carer or Enduring Power of Attorney will have to make.

Bruce Baynes, Aged Care Adviser, Sage Care Advice will discuss information you will need to know to plan finances for aged care.

Young people (under 65 Years of age) can be diagnosed with dementia and also may develop some symptoms after a stroke or brain trauma. Rebecca Russell, NDIS Team Leader, Ongoing Support & Enquiries Team, NDIS LAC PITC Program will give an overview of services. Wellways has a Young Carers program Officer, Kelly de Visser who works with carers from 8 years of age who are carers for parents and siblings. Kelly will explain how she supports these young family members who have undertaken responsibilities of caring.

At lunch time Katrina Thurgar from the OzCare Dementia Advisory Support Service will have a Q & A booth for individuals to gain guidance.

The focus on the afternoon sessions will be recreational and social activities for people with dementia and related disorders with speakers from Leah Sullivan, We Doo Care on Lifestyle and Wellbeing activities and services and Vicki Doolan, Gracefully Ageing on Brain Movement for Health. Vicki will ensure participants will become active in their seats.

Jody Barclay works for Synapse, Australian Brain Injury Organisation as an Information Consultant in Ageing. Jody will discuss brain health and changes which result in behaviour changes. Synapse is donating free hard copies and digital copies of its resource, ABI (Acquired Brain Injury) The Facts to attendees.

When planning services and to maintain a quality of life, it is important to be aware of financial considerations. These speakers will support attendees on what financial resources they can tap into.

Carers Gateway – Wellways – Jacqueline Murray

Carers Queensland – Carer Pathway – Andrea Cooper, Business Development Officer will discuss the Pathway programme to support young carers to return to study or work.

Garden Financial Services – Gavin Williams, Financial Advisor and Director

Due to the changes in the brain like memory loss of the person with the medical condition, there can be changes in relationships. Some individuals and families need support to accept and work through these changes. There could be abuse and neglect of both parties. Conflict can arise when financial and Enduring Power of Attorney aspects are decided.

Relationships Australia (Qld) – Ben O’Rourke, Senior Relationship Support Service Coordinator will discuss these issues and about their services.

At times carers and people with dementia and related disorders need support to advocate about services they are receiving or need legal advice.

Aged and Disability Advocacy Australia – Debbie Smulders, Advocate – Sunshine Coast will discuss some possible issues and how ADA can help to advocate for your rights and betterment of services.

Wellways, Carers Outlook and TAFE Mooloolaba have given support to the Conference to enable its operation by the Dementia Network’s volunteers.

Register per the event flyer: trybooking for staff to pay $30

Register per registration form via website events for people with dementia or related disorder and their carers and family members or seniors.

Contact: Lorrae for further information

on carersoutlook@gmail.com

or 0418 298 183

Trade tables for organisations and service providers are available.


The Value of social interactions

A quality of life

Human beings need social interaction with others to stimulate thought, discussion, problem-solving, share stories and experiences and simply to have laughter and a sense of freedom by escaping “my world”.

The Dementia “Catch-Up Cuppas” are an avenue for people with dementia and their family members to engage with others who have the similar world, the dementia world. Many express a feeling of isolation and loneliness as their world becomes smaller, as often the person with dementia may lose conversational skills and family and friends do not visit as regularly. This impacts socially on both the person with dementia and the family carer.

The Caloundra, Maleny and Nambour Catch-Up Cuppas operated by volunteers who facilitate the groups have become an outlet for socializing, There was laughter about memory loss stories and sometimes a few tears as the group is a safe space for this freedom of expression where open support and friendship is given.

Maleny group member, Claire said “it was just so good to be out”. Caloundra’s Brenda was tired but found the energy to attend with her husband. Her world has opened up more as she has a wheelchair for him which makes it easier to transport him. Brenda reflected how her hubby took her around the world in their yacht so she can take him around in his wheelchair.

Whereas others have gained support with information on services that help such as Wellways via Carers Gateway for family carers, continence support, possible GP’s and more. Another carer at the Nambour group was able to support a fellow carer and their person with dementia with referrals for religious support.

Clare, a member of the Nambour group, is 60 and was very successful with a PhD but started to have visual difficulties. At 55 she was was diagnosed with Posterior Cortical Atrophy (PCA). Clare shared her daily activity of making paper collages which is her way of being creative but also a way of expressing her thoughts and feelings, She cannot type or write very well due to brain atrophy. A carer who works part-time wants to buy some of Clare’s collages to use as wall artwork.

The males join together to discuss their past occupations, travel and where they have lived. Two shared a love of sailing and met for lunch with their wives. Interesting lives enfold of living in South Africa, England and New Zealand. One has worked in advertising and another as a hospital theatre orderly.

Couples can have an outing together as well. It was lovely to hear some couples reflect and share their journey.

When carers place a loved one diagnosed with dementia or another medical condition into a nursing home (residential aged care facility) some carers may feel lonely and a sense of guilt. When their loved ones die there can be an overwhelming sense of the physical loss. Socializing to support the “post-carer” is vital for them to regain connections to create a sense of meaning. Darryl and Cal were able to gain understanding from those in the group who have walked the same walk. Post-carers are welcomed in the groups.

The value of past is under-valued, as Margaret spoke of her time of managing country pubs and hotels. She wasn’t a person with a medical condition, but a person who in conversation was with each word, regaining her identity as a business woman and her dignity. She was valued.

The spirit within a person shines in a caring supportive environment. Commitment of love shines in care and sharing.

The stereotype (misunderstanding) of people with dementia creates stigma. Stigma can be shown in many ways including avoidance, rushed appointments, loss of identity, lack of communication and even lead to financial abuse.

The staff at the new Catch – Up Cuppa at Caloundra RSL was exceptionally supportive and Heather the manger of The Orangery Maleny is considerate of the group’s needs. RSL Nambour has been supportive in giving us a quiet area and turning off the TV above our table which makes it easier to converse. The outings without intention are breaking down barriers.

Networking is a social process of accepting that each person and organisation has a value in contributing and sharing to make the “dementia world” a better place.

Clare says it best with her collage which she made for the group.


Dementia Catch-up Cuppa

Good times are shared over a cuppa.

The social gathering of people with dementia and family carers enjoyed a social catch-up at the Nambour RSL on 10th September, 2020.

Ken, a family care said, “it was lovely”. We enjoyed some laughter and shared some feelings of loss. The group members had some interesting stories form world travels from England and South Africa. Kath had been a professional singer and her hubby is now in a residential care facility.

To be with others who share the journey of dementia and caring is very special.

We looked for the purple rose set up at the tables reserved for us.

If you are interested in attending the next one. It will be on November 12th, 2020. 10.15 am. Please register

Chrissy 0412 726 777 or Lorrae 0418 298 183

Thank you RSL.

Meryl, Ian and Lorrae. Look for the purple rose to find us.
Meryl and Ian. Congratulations on 52 years of marriage. Love is a commitment.
Carol, Ken and Vince shared stories of South Africa.

Keynote Speaker: Conference 2020


Keynote Speaker: Dr Kayla Stefanidis
Postdoctoral research fellow.
Healthy Brain Ageing clinic at the Thompson Institute
 
SCDN Conference 2020: Under the Dementia Umbrella
 
What is good for the heart is also good for the brain:
Understand the link between cardiovascular disease and dementia risk.
 
 
Dr Kayla Stefanidis is a Postdoctoral Research Fellow within the new Health Brain Ageing Clinic at the Thompson Institute.  She is part of a team studying how to reduce the risk of dementia using lifestyle interventions such as diet, exercise, sleep, mindfulness and social connection.
Dr Stefanidis completed her PhD in September, 2019 at USC.  Her research focuses on the link between cardiovascular disease and dementia, and more specifically, the relationship between the brain blood flow and cognitive function in aging and cardiovascular disease, using non-invasive brain imaging techniques.


Dementia Month 2020

Dementia Month 2020

Dementia Conference 2020: Under the Umbrella

Monday, 21st September. 10 am – 3 pm

at Mooloolaba TAFE, Sunshine Coast, Qld, Australia.

Alzheimer’s disease is the major form of dementia but there are others including Vascular dementia, Lew Body dementia, Fronto-temporal dementia and Huntington’s disease. There are other medical conditions which may present some dementia symptoms. Some people diagnosed with Parkinson’s, Multiple Sclerosis, Down Syndrome, Stroke, Epilepsy, Brain injury, Brain cancer, Alcohol or Drug Toxicity may develop dementia.

This conference is to be inclusive for the medical conditions Under the Umbrella of Dementia. Speakers will give information on Dementia, Communication, Driving, legal issues, changes in relationships, the caring role and grief.

Organisations like Wellways, Down Syndrome will have have a display table. Tables of information on dementia and related disorders will be a showcase for participants to add to their resource library.

Participants, people with dementia and related disorders, family carers, staff and interested persons will be able to network and gain contacts and support.

We thank the many speakers and helpers to make this an avenue of growth and support.

We are very grateful to Mooloolaba TAFE for this venue which is maintained for Coronavirus restrictions. We thank Peta Simpson, New Staff Solutions and Todd Redman, MGA Insurance Brokers for financial support.

Bromilow Community Care has provided a tracking device, Peace of Mind Pendants as a raffle/door prize. It sends emergency alerts that works anywhere there is mobile coverage. Other groups like Candice Care and Estia Health have donated gifts for lucky door prizes.

As this is a Network of Volunteers, with no government funding, we gratefully accept donations.

Please contact Lorrae on 0418 298 183 for more information or see the attached flyer in the events page.

Relationships change. A husband becomes a carer when his wife is diagnosed with dementia.

Catch-up Cuppa

is an event for people with dementia and related disorders and carers to come together and have a chat. The need for understanding can be developed with others who are experiencing the similar journey in life. Many people can become isolated but not in this gathering.

The volunteer facilitators, Vince and Lorrae have been family carers. Lorrae and Chrissy have been facilitators of Support Groups in a professional capacity.

Where and when: RSL Nambour. Thursday, 10th Sept, 10 – 12 noon. See flyer in events section.


Dementia Month 2018

Dementia Month 2018

Sunshine Coast Dementia Network Activities: see calendar of events

Dementia Information Day : BE ACTIVE

26th Sept 2018

Ecumenical Service

27th Sept 2018

September is Dementia Month and around the globe, there is a dementia world that many live and work in:

People diagnosed with dementia

Family carers, relatives and friends.

Industry of health, caring, and advocacy services operate to work with people diagnosed with dementia: Drs, Specialists, in-home care, respite and nursing home staff, counsellors, allied health, financial planners, lawyers, advocates.

Researchers work hard at trying to find a cure for the many associated types or causes of dementia particularly Alzheimer’s disease.

Many researchers and educators work hard to find strategies and ways to support the person with dementia.

Family carer organisations support the family carer on this journey of caring for the loved one with dementia.

There are many positives in this dementia journey:

the meeting of people who care

the hope that one day discovery will see a cure for dementia syndromes

Here are some facts and figures.

https://www.alz.co.uk/

Facts:

  • Dementia is a term used to describe different brain disorders that affect memory, thinking, behaviour and emotion.
  • Early symptoms of dementia can include memory loss, difficultly performing familiar tasks, problems with language and changes in personality. View the early symptoms.
  • There is currently no cure for dementia, but a range of support is available for people with dementia and their carers.
  • Dementia knows no social, economic, or ethnic boundaries.
  • Alzheimer’s disease is the most common cause of dementia. Other causes include vascular disease, dementia with Lewy bodies and fronto-temporal dementia.
  • There are currently estimated to be over 46 million people worldwide living with dementia. The number of people affected is set to rise to over 131 million by 2050.
  • There is one new case of dementia worldwide every three seconds.
  • The worldwide costs of dementia are estimated at US$818 billion. As a result, if dementia care were a country, it would be the world’s 18th largest economy. If it were a company, it would be the world’s largest by annual revenue exceeding Apple (US $742 billion) and Google (US $368 billion).

Dementia is often hidden away, not spoken about, or ignored at a time when the person living with dementia and their family carers are most in need of support within their families, friendship groups and communities.

The social stigma is the consequence of a lack of knowledge about dementia and it can have numerous long- and short-term effects, including:

  • Dehumanisation of the person with dementia
  • Strain within families and friendships
  • A lack of sufficient care for people with dementia and their carers
  • A lower rate of diagnosis of dementia
  • Delayed diagnosis and support

The stigmatisation of dementia is a global problem and it is clear that the less we talk about dementia, the more the stigma will grow. This World Alzheimer’s Month we encourage you to find out more and play your part in reducing the stigma and improving the lives of people with dementia and their carers in your community.

 

https://www.dementia.org.au/   1800 100 500

Dementia Australia Stats:

  • Dementia is the second leading cause of death of Australians.
  • Dementia is the leading cause of death among Australian females.
  • Dementia is the third leading cause of death among Australian males.
  • Three in 10 people over the age of 85 and almost one in 10 people over 65 have dementia [2]
  • Currently an estimated 250 people are joining the population with dementia each day. The number of new cases of dementia will increase to 318 people per day by 2025 and more than 650 people by 2056[2]

 

https://www.alz.org/abam/overview.asp#goPurple

https://www.alz.org/abam/overview.asp#takeAction      https://shop.alz.org/Search.aspx

 


Webchat feature on the National Dementia Helpline

Alzheimer’s Australia’s National Dementia Helpline has recently expanded to offer a webchat function – which means people can now get in touch with a Helpline ‘Dementia Advisor’ and have a typed online conversation. For some people this may be just what they are after. The webchat service operates Monday to Friday from 9 am to 5 pm EST. You can access the Webchat here .


Relationships and dementia

This Alzheimer’s Australia NSW discussion paper explores how dementia affects relationships, in particular looking at role and identity, emotional and physical intimacy, grief and loss and positive impacts. The paper’s findings are based on a survey which drew responses from nearly 200 people (mainly family carers), and the report includes lots of quotes from people with dementia and family carers. The report’s authors say there is a need to improve access to range of key supports, including respite, counselling and support groups. To download the report, click here.


Ensuring a smooth journey

A new guide to Brisbane Airport’s International Terminal for people living with dementia and their travel companions is just out. The 35-page guide covers topics such as preparing for your journey, getting to the airport, checking in and flying out, and flying in to Brisbane. The guide comes at the end of a 2-year project with QUT’s Dementia Centre for Research Collaboration to improve facilities for people with dementia at the airport. As a result of this work, Alzheimer’s Australia now says this is Australia’s most dementia-friendly airport. To access the guide, click here.


Dementia-friendly communities

Alzheimer’s Australia has revamped its website dedicated to dementia-friendly communities (go to www.dementiafriendly.org.au), and within it now has a new resource hub also related to dementia-friendly communities. This is a good place to check in to find out what’s happening with any and all dementia-friendly communities projects throughout Australia. It is also the place where you will be able to sign up to become a ‘dementia friend’: first, just complete a simple module online.