May 01, 2017

for carers -

by Alzheimer's Australia 

Caring for someone with dementia: the economic, social, and health impacts of caring and evidence based supports for carers

There are approximately 200,000 Australians providing unpaid care to a person with dementia. 

These carers are often the spouse or child of the person and provide wide-ranging support, including helping the person with dementia with activities of daily living, personal care, and managing behavioural and psychological symptoms of dementia, as well as making difficult decisions about treatment options, use of services, finances, and long-term care. 

Some carers have work, children and other family commitments to cope with as well. Providing this type of intensive support can have substantial impacts on the wellbeing of the carer. 

Many carers experience negative effects on their emotional, psychological and physical health, social activities and support networks, ability to work and finances. Influencing factors include carer age, co-residency, previous health, personality, coping style, the severity and type of dementia, and the availability of social support. 

There are a range of supports and services available for carers in Australia including information, education and training, psychosocial therapies, case management approaches, social support groups, respite care, and multi-component programs that combine these. Research to date suggests that structured multi-component and individualised psychoeducational1 and psychosocial interventions2 led by qualified professionals tend to show the most positive improvements in carer outcomes.

 However, even with the supports currently available, many carers find difficulty in accessing the supports they need when and where they need them. If we are to achieve an aged care system that supports people to live in the community for as long as possible, then carers are an essential part of the equation. 

Most people with dementia rely on informal carers to supplement formal care; as often the hours available even at the highest level of home care package are simply not sufficient to support a person with dementia to stay at home. In order to provide people with choice over where they receive care, there is a need for not only a good system of home care but also a comprehensive, evidenced-based approach to supporting informal carers. 

Dementia and your legal rights

topics include 
 Mental capacity and decision-making 
 What does capacity to make decisions really mean? 
 If I no longer have capacity can I still be involved in decision making?
 Who decides when I no longer have capacity to make my own decisions?
  Can I appoint someone to make decisions for me when I am no longer able to make my own? 
 Substitute decision-makers according to State or Territory 
What kinds of decisions can the substitute decision-maker make on my behalf? 
 Who has the legal right to make decisions for me if I have not appointed someone? 7 --  What is the difference between supported decision-making and substitute decision-making? Names of State/Territory Boards/Tribunals
Your legal rights and decision-making with regard to your finances
Should I consider appointing someone to manage my finances?
w should I choose an Attorney for financial matters? 10 --  How can I be sure the Attorney will act in my best interests? 
Can I change my Power of Attorney arrangements? 
Your legal rights and decision-making in regard to health care and --  personal decisions --  
Should I consider appointing someone to make personal and health care decisions on my behalf? 
How should I choose an Enduring Guardian? 
 Who has the legal right to make health care decisions for me if I have not appointed someone?  Who will be responsible for making decisions for me if I live alone?
What is an Advance Care Directive and is this something I should consider? 
Advance health decision-making instruments by State/Territory
 Do I have the right to consent to, or refuse, medical treatment? 
List of agencies that receive health care complaints
 Is my GP or specialist obliged to tell me that I have dementia?
 What are my rights in relation to physical or chemical restraint in my home, or in a residential aged
 care facility?
Your legal rights and responsibilities in relation other matters
Criminal Responsibility 

Australian books 

Diagnosed with Alzheimer’s or another dementia
Kate Swaffer & Lee-Fay Low

This book explains the stages and symptoms of dementia, how it affects the brain, and how it affects the person and their families. It is a comprehensive guide to understanding and living with dementia - what to expect, what services may be required, how to cope with day to day challenges, etc. It describes current treatments and ongoing medical research, and will include first hand experience from people diagnosed with dementia, and will talk about what it is like living with Dementia.

Living with Dementia : A practical guide for families and personal carers 
Editors: E Chang and A Johnson

Living with Dementia: A practical guide for families and personal carers

...provides a sensitive, direct and highly accessible account of the complexities and challenges that a diagnosis of dementia presents. Written by aged care experts including academics, nurses, medical practitioners and family advocates, Living with Dementia offers evidence-based research, supported by clear chapter outcomes, key terms and real-world vignettes. Practical strategies are integrated throughout to support caregivers, paid and unpaid, in the home environment and in residential care settings.

The book offers advice on how to manage everyday activities such as feeding, toileting, personal hygiene and grooming, and coping with challenging behaviour. In recognising the needs of the whole person, mental stimulation and spirituality are also addressed. An introduction to commonly used medications, complementary therapies and effective communication strategies are provided, as well as information about caring for the dying, and most importantly, looking after you – the carer.

Understanding Alzheimer's & other dementiasBrian Draper
One of the most authoritative guides available on Alzheimer's and Dementia. 

Set to be one of our leading health problems because of an aging population, an increasing number of people will be faced with caring for a friend or family member with dementia. 

In this clear and simple guide for carers and families, Professor Brian Draper – one of Australia’s leading Alzheimer’s and dementia experts – demystifies the condition. 

Looking at its symptoms, treatment and management, this guide will help increase your understanding of why dementia occurs, the current treatments and how it may be managed both by professionals and those at home. 

Filled with practical advice on therapies and drug treatments, Understanding Alzheimer’s & Other Dementias is an invaluable tool for carers or those worried about their own symptoms or those of a loved one. 

The Author: Brian Draper is a Conjoint Professor in the School of Psychiatry at the University of New South Wales and since 1992, he has been the Assistant Director of the Academic Department for Old Age Psychiatry at Prince of Wales and Prince Henry Hospitals, Sydney.

In Live and Laugh with Dementia 
Dr Low shows us how we can tailor activities to suit the needs and abilities of dementia patients who are unable to initiate activities themselves, and help them to:
- Maintain their relationships with others
- Maintain their self-identity
- Slow the decline of mental function by providing physical and mental stimulation
- Stave off boredom
- Experience happiness and pleasure.
Hopeful and inspiring, Live and Laugh with Dementia supports people to improve their relationship with the person with dementia.
Ideal for both family and professional carers, not only does it contain suggestions for activities and how to tailor them, but it also covers a host of ideas that will empower family and friends to re-engage with those living with dementia, allowing them to build new relationships, spread the load
of care and add richness to their lives as well as meaning to their own.
This invaluable book also contains tips for people with mild dementia in order to empower them to stay active and keep control of their lives as much as possible. 

 It's all about the food not the fork!
Everyone enjoys the fun and convenience of snacks and other easy to eat food.
But for some people these meals in a mouthful are a life-changer—especially if they can be eaten with your hands and are good for you as well. That’s where new cookbook It’s all about the food not the fork! 107 easy to eat meals in a mouthful comes in—no cutlery required!

Don't give me eggs that bounce : 118 cracking recipes for people with Alzheimer's

Don’t give me eggs that bounce is not your average cookbook.
It's all about how to make mealtimes a pleasurable, social and safe experience in the context of dementia, ageing, swallowing difficulties and texture-modified diets.
Carers are especially supported with time saving techniques, easy options and a special chapter on caring for the carer, along with lists of support organisations and resources.       

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