September 05, 2016

Resources for support groups - multiple copies available

* multiple copies of these resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on
Family and friends matter : how to stay connected to a person living with dementia
 Family and friends matter. They help us navigate life’s ups and downs. They accept us as we are. What can we do to maintain this special bond when a family member or friend is living with dementia? How do we stay connected in ways that are meaningful, and what interests can we continue to enjoy together? These are some of the important questions this booklet aims to address. We hope the information and suggestions in this guide help you stay connected, as you discover different and meaningful ways to be with a person living with dementia.
Ambiguous loss and grief in dementia a resource for individuals and families

This resource is meant primarily to help you, as a caregiver, gain a better understanding of how loss and grief can affect you and the person with dementia. It provides valuable information as well to help people with dementia deal with their own losses and grief, and live as well as possible with the disease.
In addition, you will find useful strategies and tips to help you cope with the multiple losses and grief, and stay connected to the person with dementia while remaining healthy and resilient through the progression of the disease. Loss and grief are among the most significant and challenging issues you will face as a caregiver when supporting a person with dementia.
As a caregiver, you may grieve the loss of your dreams and plans for the future, the loss of a confidant and partner, the loss of shared roles and responsibilities, and the progressive losses in the life of the person with dementia.
Fortunately, understanding loss and grief can help to ease the effects of the disease.

Human rights of people living with dementia : from rhetoric to reality
 We think this is a good tool to enable national Alzheimer Societies to use these approaches in their relationships people with people living with dementia, within their own organisation and in their own country, as well as with governments, professional organisations and above all with the media and the general public, most of this booklet focuses on ways in which  to promote the well-being and quality of life of people living with dementia.

We know from experience that it will take time and a re-evaluation of values and priorities at all levels to make it possible for people with dementia to benefit from this resolution. But after years of advocating for the rights for people with dementia and their significant others, we are now on our way.

Creating Dementia-Friendly Communities: A Toolkit for Local Government
People living with dementia often report that a diagnosis is life-changing, not only because of the day to day symptoms they experience but because of changes in the way that people perceive or treat them. This has implications for the way that they, their families and carers participate and interact with their own local communities.

Clinical practice guidelines and principles of care for people with dementia : recommendationsPlain English summary
... The impact of dementia on carers is significant and caring for a person with
dementia may lead to poor health, depression and social isolation

• The symptoms of dementia should be investigated the first time they are reported and not dismissed
as a ‘normal part of ageing’.

• Steps should be taken to prevent, recognise and manage common behavioural and psychological
symptoms of dementia such as depression and agitation. In most cases, training the carer(s) and family to provide care, forming specific strategies to address behaviours that are most upsetting, making small changes to the living environment and finding interesting and enjoyable activities for the person to do should be tried first. Medication to manage these symptoms should usually only be offered after these other strategies have been given an adequate trial. Due to the increased risk of serious adverse events, people with mild-to-moderate behavioural and psychological symptoms of dementia should not usually be prescribed antipsychotic medications.

• Doctors, nurses, allied health and care workers should receive training in dementia care. They should be trained in how to communicate clearly with the person with dementia, their carer(s) and family and to provide person-centred care.

• The person with dementia should be encouraged to exercise, eat well, keep doing as much for
themselves as possible and stay socially connected in their local community. Staff and carer(s) should
be taught how to encourage independence.

• Medical practitioners should consider medication (acetylcholinesterase inhibitors or memantine) to
assist in the management of the cognitive symptoms of dementia.
• Carer(s) and family should be supported to care for the person with dementia. They should be offered education and training to enable them to develop skills in managing the symptoms of dementia and be offered respite when needed. Carer(s) and family should be given information about
coping strategies to maintain their own wellbeing and be supported to maintain their overall health
and fitness.

Letting go without giving up : continuing to care for the person with dementia
by Jenny Henderson and Maureen Thom

The idea for Letting go without giving up grew from concerns expressed by carers who felt they were no longer allowed to have a role in caring for the person they had looked after at home after the person entered long-stay care. This booklet is aimed at carers who want to continue their involvement in the lives of the people they have cared for, even if they are no longer responsible for their day-to-day physical care needs.

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