Dementia Care Guide

Where can I get help?

There are many networks that are an excellent resource for people living with dementia and offer help and support to their families and carers.

Not only do they provide a wealth of information about the disease, they are also there to guide and support you through your journey and connect you with many organisations that are dedicated to making life with dementia as easy as possible.

Sunshine Coast Dementia Network

The Sunshine Coast Dementia Network (SCDN), is the leading local network for those living with dementia and their carers . This service is the local gateway to information, services, and support.

Events

Dementia Information Day – a networking event with speakers and social interaction.

Held Bi - monthly 10am – 12pm

Nambour, Central Sunshine Coast and Hinterland Catch-Up Cuppas – a social morning tea for people with dementia and their carers.

Held at Caloundra RSL, Nambour RSL and The Orangery Maleny.

Dementia Conference– held annually during seniors month at Mooloolaba Tafe

Ecumenical Services – held to support those wishing to share spirituality.

Contact: Lorrae & Vince O Rouke

Phone 0418 298 183 www.scdementia.com.au

Sunshine Coast Dementia Alliance

Provides help and support to those living or caring for someone with dementia. They run free monthly Vitality Cafes, Barefoot Bowls and organize special events and speakers.

Phone 0488 680 265 www.sunshinecoastdementiaalliance.com.au

OZ CARE DEMENTIA ADVISORY SUPPORT SERVICE (SUNSHINE COAST)

This service offers information and support to people with dementia and their families throughout Queensland. They provide a free service to help clients understand dementia and navigating aged care system. (65 and over)

Phone 1800 692 273

Understanding Dementia

ALZHEIMER’S QUEENSLAND

(for all kinds of dementia not only Alzheimer’s disease)

Offer a range of state-wide support and services including residential facilities, respite care, and in-home support, nursing and allied health services, education and training for family carers and staff. Telephone Support Group for carers. Dementia Matters newsletter. Library. Advice Line 24/7 Day. (never closes)

In-home care services offered on the Sunshine Coast.

Phone 1800 639 331 www.alzheimersonline.org

Dementia Australia

A unified national peak body for people of all ages, living with all forms of dementia, their families and carers. Family carer counselling and education sessions. Help line. Comprehensive fact sheets in many languages other than English. Young Onset Dementia (people diagnosed 65 yrs and under) advisor on Sunshine Coast.

Phone 1800 100 500 www.dementia.org.au

Dementia Australia has developed resources to assist all Australians to get a better understanding of what they can do to contribute to a dementia-friendly nation.

For more information visit www.dementiafriendly.org.au

DEMENTIA SUPPORT AUSTRALIA (DSA) LED BY HAMMOND CARE

Dementia Behaviour Management Advisory Service (DBMAS) & Severe Behaviour Response Teams (SBRT), BPSD Guide app. Provides 24/7 national support particularly on Behavioural and psychological symptoms of dementia

Phone 1800 699 799 www.dementia.com.au

GRACEFULLY AGEING

Run by Vickie Doolan. Her team offers a range of education programs.

Dementia Live Experience offers a real life experience of what it might be like to live with dementia.

Compassionate Touch Workshop

Simple touch techniques combined with compassionate presence to help relieve pain and anxiety. It reduces the need for medication and helps you make connection with your loved one.

Dementia Communication Workshop

For carers to successfully communicate with their loved one who is experiencing dementia.

Ageless Grace Brain Health Exercise

Seated exercise program that incorporates brain stimulation and movement.

For more information contact Vickie Doolan

Phone 0409 526 982 www.ageucate.com.au

DEMENTIA AUSTRALIA LIBRARY

People living with dementia can access an extensive Dementia Australia Library by completing an online registration form. Library resources are mailed free of charge to registrants and must be returned within four weeks of borrowing via post at the registrant’s expense. To register, contact Phone 1800 180 023 www.dementia-australia.org

Dementia Carer Workshops may be accessed in -person via dedicated groups , or via phone or videoconference. Workshops equip people with a wealth of information regarding the impact of dementia on lifestyle, functional ability, and behaviour and supporting strategies and techniques to help improve independence and maintain quality of life.

To register for workshops, contact Phone 1800 180 023 www.dementia-australia.org

WICKING DEMENTIA RESEARCH AND EDUCATION CENTRE

Runs a range of short online courses on dementia. Topics include Preventing Dementia, Understanding Dementia. Register online www.mooc.utas.edu.au

DEMENTIA TRAINING AUSTRALIA

Provides free online courses. www.dta.com.au

DEMENTIA RETREAT

Retreat based on the Sunshine Coast is run by Carers Outlook. It is open to carers and those living with dementia. The retreat provides education and friendship. For more information contact Lorrae & Vince O’Rourke

50 Savilles Rd, Highworth, 4560 Phone 07 5476 0642

Phone 0418 298 183

Carer Support

CARER GATEWAY / WELLWAYS

A national platform to help carers looking after someone with disability, mental illness, dementia, a long-term health condition, an illness that will cause their death, or an alcohol or drug problem, or someone who is frail because they are old.

Carer Gateway provides practical information and advice, helps you to get the services and support you need, provides free counselling services over the phone, provides free coaching to help you in your role, lets you connect with other carers through a community forum

Phone 1800 422 737

Carers Queensland

Sunshine Coast Services provides support to carers living on the Sunshine Coast. They provide a range of services including counselling, culturally and linguistic diverse program, disability services, information and advisory services, No Interest Loan Schemes, Support/ Therapy Groups and a Young Carer program. Carers Queensland also offers support to those under 65 with dementia to access support via the National Disability Scheme.

Level 1, 43 Plaza Parade, Maroochydore QLD 4558

Phone 07 3900 8100

Carers Outlook

A private home where carers and sometimes carees (by negotiation) come for respite. They are cared for by Vince and Lorrae O’Rourke in the rural hills of Nambour. They give presentations on dementia and also on the caring role for all members of the community, carers and staff.

For more information contact Lorrae & Vince O’Rourke

50 Savilles Rd, Nambour, 4560

Phone 07 5476 0642

Phone 0418 298 183 www.scdementia.com.au

DIVERSICARE

In-home services focusing on clients with culturally and linguistically diverse backgrounds. Caring for the needs of diverse clients with dementia www.diversicare.com.au

Phone 1300 348 377

Phone 07 5491 9655

RESPITE SUPPORT

What is respite support?

Respite’ or ‘respite care’ is when someone else takes care of the person you care for, so that you can have a break. A break can give you time to do everyday activities or just to relax, deal with stress and look after yourself.

OVERNIGHT RESPITE

Carers can access overnight respite either through their Home Care Package, privately or via the Commonwealth Home Support Program and Carers Gateway.

RANGE CARE

Have a dedicated overnight respite facility in Flaxton. This facility is not secure and is therefore only suitable for low-level dementia care.

Phone 07 5445 7044 www.rangecare.com.au

CENTRE BASED DAY RESPITE

Centre-based respite is respite offered during the day. It provides an opportunity for clients to talk, interact with other people and participate in activities. These programs usually take place at a day centre, club or residential setting. To be eligible it is important to register with My Aged Care. Some centres may provide respite support on a fee for service basis.

Organizations that provide day respite include:

BLUE CARE DAY RESPITE CENTRES

Coolum and Dicky Beach

Phone 1300 258 322 www.bluecare.org.au

MAROOCHYDORE COMMUNITY CENTRE

Day respite for clients including people with dementia.

Phone 1800 786 227 www.suncare.org.au

RANGE CARE

Have a dedicated centre based day respite facility in Flaxton and Nambour.

Phone 07 5445 7044 www.rangecare.com.au

GLASSHOUSE COUNTRY CARE

Operate a day respite centre at Beerwah.

Phone 07 5494 6948 www.ghcare.org.au

Modified Equipment

LifeTec Queensland is a social enterprise that provides dedicated assistive technology (AT) services with team including Occupational Therapists and Physiotherapists

Phone 1300 543 383 www.lifetec.org.au

Dementia Care Products

www.leef.com.au www.dementiashop.com.au www.unforgettable.org www.best-alzheimers-products.com www.alzstore.com www.dailycaring.com www.aidacare.com.au

Research Centres

UNIVERSITY OF THE SUNSHINE COAST MIND AND NEUROSCIENCE – THOMPSON INSTITUTE

Ground Floor, 12 Innovation Parkway Birtinya, QLD, 4575 Phone 07 5430 1191 www.usc.edu.au/sunshine-coastmind-neuroscience-thompsoninstitute/

The Queensland Brain Institute QBI Building, 79 The University of Queensland St Lucia QLD 4072

Phone 07 3346 6300

Website https://qbi.uq.edu.au

Books To Read

I WISH I WERE A LEPER

BY VINCE O’ROURKE

“I Wish I Were A Leper” is a book by Vince O’Rourke based on diary and journal entries which accurately record the journey he and his wife, Margaret O’Rourke, took with Alzheimer’s disease. Because of its early onset, the disease rapidly adversely affected Margaret’s quality of life. When asked why she would ever wish to be a leper, Margaret’s faith filled response was, “If I were a leper He could heal me”. This is a story that grabs the reader’s attention from the outset. It is a record of unconditional love, pain and suffering, hope and despair, anger and elation, as well as of a personal conflict of faith, and belief in a God of love and compassion. It speaks clearly to all who care for those suffering long term terminal diseases. Book can be purchased from Sunshine Coast Dementia Network.

Facebook Support Groups

Dementia Downunder

Dementia Downunder is a support and information group for anyone in Australia with a family member, friend, resident or patient with dementia. You may be a carer, nurse, dementia trainer or even a doctor - everyone is welcome to join this online community.

www.facebook.com/groups/ dementiadownunder/

Dementia Carers Australia

For those who are caring for or closely connected with a loved one who has dementia and dealing with the life changing implications of that situation. This is a forum for people to vent, ask questions and find information.

www.facebook.com/groups/

DementiaCarersAustralia/

Lorrae & Vince O’Rourke

50 Savilles Rd

Highworth, 4560

Phone 07 5476 0642

Phone 0418 298 183

Books To Read

Christine Bryden was diagnosed with dementia in 1995 and has written the following books.

WHO WILL I BE WHEN I DIE? DANCING WITH DEMENTIA BEFORE I FORGET NOTHING ABOUT US, WITHOUT US

Advocating for dementia for over 20 years, Christine Bryden has been instrumental in ensuring that people with dementia are included in discussions about the conditions and how to manage and think about it.

This collection of her hard-hitting and inspiring insider presentations demands ‘nothing about us, without us!’ and promotes self-advocacy and self-reflection. Provocative and insightful, the pieces included in the book address issues that demand attention, and will change the way dementia is perceived, and the lives of people with dementia and their families.

christine@christinebryden.com

A family Guide for caring for people who have Alzheimer’s disease and other dementias and memory loss.

By Nancy L Mace and Peter V Robins

The 36-Hour Day has been an essential resource for families who love and care for people with Alzheimer’s disease or another form of dementia. The book will help family members and caregivers address challenges and simultaneously cope with their own emotions and needs. Features useful takeaway are

MIND YOUR BRAIN – THE

By Kailas Roberts

To

Dr Kailas Roberts is a consultant psychiatrist and psychogeriatrician with over ten years’ experience in the field of old-age psychiatry. He runs a busy private practice caring for people with cognitive difficulties, and advises on management of the behavioural and psychological difficulties that often accompany dementia. He lives in Brisbane, and Mind Your Brain: The Essential Australian Guide to Dementia is his first book.

https://www.sunshinecoastdementiaalliance.com.au