August 02, 2016

Looking for books for your bookclub -read the books and related papers written by Alzheimer’s Australia NSW to help inform the book club discussion

These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on

The things we keep
(Topic:  younger onset dementia; assisted living facility  )
:The Things We Keep is the new novel by Sally Hepworth, bestselling author of The Secrets of Midwives. I think Hepworth is going to cement herself as a must read author for contemporary tales that are a little different and very thought provoking.
"Anna Forster, in the early stages of Alzheimer's disease at only thirty-eight years old, knows that her family is doing what they believe to be best when they take her to Rosalind House, an assisted living facility. She also knows there's just one other resident her age, Luke. What she does not expect is the love that blossoms between her and Luke even as she resists her new life at Rosalind House. As her disease steals more and more of her memory, Anna fights to hold on to what she knows, including her relationship with Luke. When Eve Bennett is suddenly thrust into the role of single mother she finds herself putting her culinary training to use at Rosalind house. When she meets Anna and Luke she is moved by the bond the pair has forged. But when a tragic incident leads Anna's and Luke's families to separate them, Eve finds herself questioning what she is willing to risk to help them.

Quality dementia care : understanding younger onset dementia
Purpose of this booklet: The Alzheimer’s Australia Quality Dementia Care Series provides complex information in an accessible form for use by people living with dementia, families, carers and health professionals. Understanding Younger Onset Dementia is a practice- and evidence-based booklet summarising the neuropathology and characteristics of the different dementias occurring in younger adults under 65 years of age. This booklet provides information of assistance to health professionals and others on the different types of dementia diagnosed in younger people and explains many of the characteristics of the associated changes that occur with younger onset dementias. The content has been partly determined by workshop presentations by the staff at the Neuropsychiatry Unit of the Royal Melbourne Hospital to people with younger onset dementia, families, carers and professionals and the work of Dr Adrienne Withall.

The woman next door
(Topics: Retirement, Ageing, living alone with dementia)
Over the years, the residents of Emerald Street have become more than just neighbours, they have built lasting friendships over a drink and chat on their back verandas. Now a new chapter begins with the children having left home. Helen and Dennis have moved from their high maintenance family property to an apartment by the river with all the mod cons. For Joyce and Mac, the empty nest has Joyce craving a new challenge, while Mac fancies retirement on the south coast. Meanwhile, Polly embarks on a surprising long-distance relationship. But she worries about her friend next door. Stella's erratic behaviour is starting to resemble something much more serious than endearing eccentricity..Meanwhile, Polly embarks on a surprising long-distance relationship. But she worries about her friend next door. Stella's erratic behaviour is starting to resemble something much more serious than endearing eccentricity...With her trademark warmth and wisdom, Liz Byrski involves us in the lives and loves of Emerald Street, and reminds us what it is to be truly neighbourly.

Living alone with dementia : discussion paper 7
This paper has been developed and written by the Policy and Information Unit, Alzheimer’s Australia NSW, authors Kylie Sait and Brendan Moore
The growing number of people living alone, coupled with the increasing number of people with dementia, suggests that the number of people with dementia who live alone is set to rise. Yet there is often an underlying assumption in dementia and aged care policy of the presence and support of a co-resident carer which is reflected in the design and delivery of services. Supporting people with dementia who live alone will become increasingly important requiring social policy and service delivery changes.
People with dementia, when well supported, can continue to live at home alone. However, they can be at heightened risk of economic insecurity, loneliness and depression and have an increased need for community-based or residential aged care. The importance of timely diagnosis and early intervention for all people with dementia, and particularly for those who live alone, cannot be overstated. The earlier community care services are accessed and supports are put in place, the better chance a person with dementia has to live at home in a safe and familiar environment.
People living alone with dementia are particularly vulnerable and it is critical that aged, community and health services are well equipped to support them to maintain their independence in their own home for as long as is possible to avoid premature entry to residential aged care.
This discussion paper aims to inform the Australian and NSW Governments, policy makers and service providers about people with dementia who live alone and to provide recommendations to better support this cohort. The paper will also be of value to people living alone with dementia, their non-resident carers, and their families and friends.
Alzheimer’s Australia NSW is committed to continuing to advocate for people living alone with dementia. We will ensure that the services and programs we deliver reach people living alone with dementia and make a difference to their lives. We will continue to provide counselling, education and support services that address the needs of people living alone with dementia.

Most difficult decision: dementia and the move into residential aged care : Discussion paper 5 October 2012
Alzheimer's Australia NSW
Policy, Research and Information Unit, Alzheimer’s Australia NSW
The Hon. John Watkins, the CEO of Alzheimer’s Australia NSW, said the discussion paper, The Most Difficult Decision: Dementia and the Move into Residential Aged Care, by Alzheimer’s Australia NSW, identified the profound impact moving into residential care can have on people with dementia, their families and carers. “Many tell us that even if they find a great facility for their loved one, the decision to make the move and then the days leading up to the change are some of the most difficult days of their lives,” Mr Watkins said. “One carer told us that moving his mother into care and taking her away from her home and her cats was the most traumatic and saddest event he had ever had to cope with in his life, while another said coping with the change after 63 years of marriage had not been easy. “But what we have found is that when it is managed the right way, it can be much smoother and a much less stressful experience than expected and can help alleviate some of that grief and guilt that is so often associated with this time. “Indeed, many who said they had had a good experience said it was precisely because of good communication with staff at the facility, because they had time to plan for the event and when the person had stayed in the facility beforehand for respite care.” The discussion paper contains several recommendations to help make the transition easier, including that the Australian Government fund a network of key workers to support the carer and person with dementia and that standardised application and information forms are developed. “While many people with dementia and their families and carers would like to stay in their own home for as long as possible, there comes a time for a lot of people when there is a need for the sorts of care that residential aged care facilities provide,” Mr Watkins said. “What the research has found is that communication in this process is key – that includes the person with dementia and their families and carers planning ahead for the possibility of the need to move into a residential aged care facility, as well as with staff in the care facility at the time of the move to help ease the transition.”

Green vanilla tea
(topics: younger onset dementia; changed behaviours; caring for a partner with younger onset dementia)
When Marie Williams' husband Dominic started buying banana Paddle Pops by the boxful it was out of character for a man who was fit and health conscious. Dominic, Marie and their two sons had migrated to Australia to have a life where they shared more family time -- when gradually Dominic's behaviour became more and more unpredictable. It took nearly four years before there was a diagnosis of early onset dementia coupled with motor neurone disease. Marie began to write, as she says, as a refuge from the chaos and as a way to make sense of her changing world. Her book, Green Vanilla Tea, has just been named winner of the Finch Memoir Prize.

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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