August 26, 2016

“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is to enable well-being.”


listen to the CDs or read the book

“A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.”

 
― Atul Gawande,     Being Mortal: Medicine and What Matters in the End 

   

Hope for the caregiver : encouraging words to strengthen your spirit


book review by Imelda Gilmore, a carer and advocate for Alzheimer’s Australia NSW


What an extraordinary little book! Even as I started reading it, I found almost every page had at least one quotation from someone or somewhere that I wanted to write down. It's written simply and contains so much common sense, yet there are amazingly profound statements that will change your view of your caregiving role forever. The chapters are very short: even if you only have 10 minutes to read with a cup of coffee or before you're going to sleep, in those 10 minutes you'll have enough food for thought for the next 24 hours. Its hard not to list any quotes - I couldn't choose the best ones because there are just too many that qualify, from people as diverse as Will Rogers, the Bible, McDonalds, Victor Hugo, Charles M Schultz, Mother Teresa  ...  

 
The author has cared for his wife for almost three decades, since he was 22 years old. He has a delightful sense of humour.
 
And another quote "And when you get the choice to sit it out or dance, I Hope You Dance." Mark D. Sanders / Tia Sillers.
 
 
 
From Michael J Fox: "I am careful not to confuse excellence with perfection. Excellence I can reach for; perfection is God's business."

“Tomorrow hopes we learned something from yesterday” - John Wayne.

 
The chapter on laughter (Laugh When You Can) is wonderful. "Laughter is a good way to jog internally without having to go outdoors" - Norman Cousins. 

 
I challenge anyone to read this book and not laugh or plan to do something differently or just feel really good about themselves as a carer. Best of all, you'll hear some thoughts about the God who cares deeply for you, the caregiver. 
 

Forgetiquette What to do when someone you love begins to forget. Having a loved one with memory loss is no laughing matter, but a little humour can help. With her sage advice and trademark irreverence, Joan Sauers helps to relieve the frustration of dealing with dementia sufferers while offering practical advice that will help you help them. Above all she reminds you that, though it may feel like the loneliest job in the world, you are not alone, a very quick and helpful read!


This book has proved very popular with carers who need a bit of a smile to deal with life as a carer  & a simple quote to ponder on ...
*These and other similar resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

 

 

 

 

August 25, 2016

Living well with dementia

 
* 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 nsw.library@alzheimers.org.au

Living well with dementia
 

While there is an existing body of research looking into the quality of life and wellbeing of people caring for someone with dementia, there are few resources voicing the thoughts, views, and opinions of people with dementia and their carers in terms of living well with a diagnosis of dementia. The research identified issues with the predominant model of assessing quality of life. By adopting the seven domains of wellbeing of Allen Power1, the research sought to understand perspectives on wellbeing as described by people with dementia. Power’s seven domains of wellbeing are:
 
 
  1. Identity
  2. Meaning
  3. Connectedness
  4. Growth
  5. Security
  6. Autonomy
  7. Joy
also to help live well with dementia

Dementia and nutrition in the home


Our research found a high level of concern about the nutrition needs of people with dementia living at home, with 85% of service providers who responded to our survey indicating that this is a concern for them. Nutrition risk and malnutrition in people with dementia is not identified early though and many participants suggested that these issues should be addressed by health professionals before a crisis point is reached. People living alone with dementia are particularly vulnerable and require monitoring to ensure risk of malnutrition is mitigated.
 "Because eating is such an ‘every day’ occurrence its importance is being overlooked, but if you are living with dementia it’s often the ‘every day’ things that matter most. Poor nutrition can lead to much worse outcomes in people with dementia who may, as a result of malnutrition, enter residential care earlier and require longer and more frequent hospital stays."



The benefits of physical activity and exercise for people living with dementia

 
While people with dementia and their carers have reported several benefits of remaining physically active, it is often difficult to do so.
Declining confidence in their abilities, inappropriately designed residential aged care facilities or risk averse cultures are some of the many barriers people with dementia face.
The paper urges health and aged care providers and governments to act to ensure people with dementia are able to remain physically active as regular exercise and physical activity can help improve things like coordination, balance, functional ability, cognition and create a better sense of wellbeing.
Recommendations in the discussion paper include the Federal Government funding a series of pilot exercise programs in residential aged care and community aged care; mandate private health insurance rebates for gym memberships and exercise physiologist sessions for people with dementia and their carers; and that the Federal and State Governments encourage the delivery of exercise programs for people with dementia by offering funding incentives to aged care providers.
There are also recommendations for aged care providers to put in place exercise programs to improve the social and emotional wellbeing of people with dementia and that they ensure their environments enable mobility and freedom of movement.
 
 
An introduction to yoga : improve your strength, balance, flexibility, and well-being
Yoga may be the antidote for what ails you. And we’re not just talking about a single problem like back pain or insomnia. According to research, up to 90% of all doctor visits can be attributed to stress-related complaints. In our always-plugged-in, stressed-out lives, yoga provides the respite to make you feel better—not just physically, but mentally and emotionally, too.
 It is arguably the one tool that we have that simultaneously improves strength, balance, and flexibility, while helping to dial back negative selftalk and ruminations as well as stress from deadlines, financial issues, relationship struggles, and other problems.
 No pill has the power to improve so many areas of your life at once. Imagine what could happen if you used yoga like you use your toothbrush—for routine self-care, on a daily basis. In contrast to the daily pressures and demands of modern life, yoga gives you an opportunity to step back and simply be present in the moment—and science is discovering a myriad of benefits to doing that. Here are some of the demonstrated ways that yoga can help you:
 Improved health. Yoga works on multiple systems of the body at once, so its effects are widespread. Among other things, it can reduce your risk of heart disease and boost your immunity, while easing back pain and helping to conquer stress eating.
Greater well-being. Several studies show that the more frequently you practice yoga, the more you experience positive emotions, along with greater satisfaction in life, joy, energy, improved quality of life, and an enhanced sense of well-being.
Savings in health care costs. According to a 2015 Harvard study in the journal PLOS One, when researchers compared medical costs for 4,400 people before and after relaxation training, which included meditation and yoga, they found that people used 43% fewer medical services and reaped estimated savings ranging from $640 to $25,500 per person each year. And yoga is easier to do than you might think. Photographs of advanced yogic practices may intimidate you, with their gravity- defying postures and pretzel-like contortions. However, basic yoga is accessible to almost everyone and can even be done in a chair. In fact, the more physical limitations you have, the more important it may be for you to try yoga, with its many benefits. 

Stretching : 35 stretches to improve flexibility and reduce pain
Stretching is an excellent thing you can do for your health. These simple, yet effective moves can help you limber up for sports, improve your balance and prevent falls, increase your flexibility, and even help relieve arthritis, back, and knee pain.

Whether you’re an armchair athlete or a sports enthusiast, this Special Health Report from the experts at Harvard Medical School will show you to create effective stretching routines that meet your needs and ability.

Inside the Stretching Special Health Report, you'll find color photos and instructions for how to do 35 stretches, including:
•10 moves to improve flexibility and ease tight muscles
•9 stretches that help ease aching backs
•8 ways to loosen up stiff, sore knees
•The best stretches to improve posture and ease neck and shoulder pain
•Tips to help you customize any routine to make it easier or more challenging
•5 stretches that target key leg and upper body muscles vital for walking, running, and reaching




Improving sleep : a guide to a good night's rest

Do you have trouble falling asleep? Trouble staying asleep?
Remember when you could fall asleep as soon as your head hit the pillow and not wake up until the alarm went off?

  Do you or your spouse snore? There are hundreds of devices marketed as aids to stop snoring. But do any work? The report will sort them out and will brief you on new procedures that are restoring quiet to the bedroom. Have you ever been screened for sleep apnea? The report gives you a six-question test that will help you determine if you need to be tested for this life-threatening condition.

Walking for health : why this simple form of activity could be your best health insurance Harvard Medical school...
In this report:
*Health benefits of walking
*Walking technique and safety tips *Finding the right shoes
*5 types of walking workouts
*Warm-ups and post-walk stretches *Walking for weight loss
*How to stay motivated over the long term
Mindfulness for carers : how to manage the demands of caregiving while finding a place for yourself by Dr Cheryl Rezek
This book shows how simple mindfulness techniques can help caregivers to manage the stress, anxiety, depression and burnout that too often accompanies the care of people with physical, psychological or emotional needs. The enjoyable mindfulness exercises will help caregivers to regain control and maintain a positive outlook.
 

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 nsw.library@alzheimers.org.au
 
 
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.

August 10, 2016

It's always about the food!



 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.       

 
Bon appetit! : the joy of dining in long-term care

Focusing on principles of resident autonomy and person-centered care, this program provides opportunities for social interaction, activity programming, functional improvements, and sensory pleasures. Special attention is devoted to identifying the needs of people with dementia. Critical assessment tools and a complete training itinerary are among the invaluable aids you’ll find. Best of all, 72 ready-to-use recipes provide tasty, nutritious, and manageable alternatives to traditional institutional foods.
 
 
Low fat meals in minutes
Catering to modern lifestyles, these recipes involve a minimum of fuss to prepare and are low in fat, salt and sugar. Contents include stir-fries, barbecue marinades made in minutes, almost-vegetarian dishes, pastas and risottos, snacks, party foods, brunches and lunches.



Healthy food fast : ways to get more fruit and vegies into your day




Carers' recipe book : quick and easy meals
This recipe book was formulated for carers who, in their caring role, do not have much time to prepare quick and easy, healthy meals. Compiled by the staff of Great Lakes Neighbour Aid and Great Lakes Centre-Based Respite Service, the recipes have been donated by carers in the Great Lakes Shire and staff of Forster Home Flexi Care.

4 ingredients. 2. : [over 400 fast, fabulous & flavoursome recipes using 4 or fewer ingredients]
4 Ingredients 2 has over 400 new recipes all using the 4 Ingredients way of cooking; all recipes have 4 or fewer ingredients; all can be measured in terms of cup, teaspoon and tablespoon; the methodology is explained on average using 4 sentences and; all recipes use ingredients mostly found in your pantry or fridge already! 4 Ingredients was the biggest selling non-fiction book in the Australian market in 2007.
 
 
 
Dementia and nutrition in the home
Malnutrition in people with dementia a critical issue Malnutrition in people with dementia living at home is a critical issue which can have significant impacts on the person’s health and the course of the disease, yet it is given worryingly little attention and current aged care reforms could make the situation worse, new research has found.The discussion paper, Dementia and Nutrition in the Home, released today by Alzheimer’s Australia NSW, has called on the Federal Government to urgently address the issue of dementia and malnutrition, while also funding information resources on nutrition for consumers and community-based aged care and support workers.
Alzheimer’s Australia NSW CEO The Hon. John Watkins AM said proper nutrition was a basic human right, however it was being overlooked in people with dementia living at home.
"Every person with dementia will have difficulty with nutrition at some point," Mr Watkins said...

"Because eating is such an ‘every day’ occurrence its importance is being overlooked, but if you are living with dementia it’s often the ‘every day’ things that matter most. Poor nutrition can lead to much worse outcomes in people with dementia who may, as a result of malnutrition, enter residential care earlier and require longer and more frequent hospital stays."

 
* if you would like to reserve a copy - please email the Library at nsw.library@alzheimers.org.au

August 09, 2016

Happiness & Its Causes -

Depression,  mindfulness and happiness







Sane new world

Ruby Wax - comedian, writer and mental health campaigner - shows us how our minds can jeopardize our sanity. With her own periods of depression and now a Masters from Oxford in Mindfulness-based Cognitive Therapy to draw from, she explains how our busy, chattering, self-critical thoughts drive us to anxiety and stress. If we are to break the cycle, we need to understand how our brains work, rewire our thinking and find calm in a frenetic world. Helping you become the master, not the slave, of your mind, here is the manual to saner living.


A mindfulness guide for the frazzled

Five hundred years ago no-one died of stress: we have invented this concept and now we let it rule us. Using hilarious personal anecdotes from her experiences in 'celebrity land' as well as insightful tales from her own battle with depression, Ruby Wax introduces a scientific solution to modern problems: mindfulness. Outrageously witty, smart and accessible, Ruby Wax shows ordinary people how and why to change for good. With practical exercises to incorporate into your daily life, and a step-by-step six-week course based on her studies at Oxford University, A Mindfulness Guide for the Frazzled is the only guide you need for a happier, calmer life.



This is how [available in book or CD]
by Augusten Burroughs
This book explores how to survive the "un-survivable" and will challenge your notion of self-help books.
Quotes form the book include
• “Bad news should be followed with soup. Then a nap.”
• “No matter your spiritual beliefs, if you hold any, the answer is the same: sometimes, why is not knowable. If you open the refrigerator door and a tub of Kozy Shack tapioca pudding tumbles out and splats open onto the floor, you clean it. You don’t stand there and question why it happened, how it was possible. Why doesn’t matter now.”
• “All of us are richer and more fascinating and more complex than we can ever know.”
• “The most valuable moments and experiences that life has to offer are found only along its most treacherous paths.”
• “No matter how huge your loss, as long as you remain engaged with your life, the best days of your life may still be ahead of you. Don't misunderstand me: the pain of your loss will remain with you for the rest of your life. But great joy will be there right beside it. Deep sorrow and deep joy can exist within you, side by side. At every moment, and it's not confusing. And it's not a conflict.”
• “Fairness is not among the laws of the universe. This means, if someone runs over your foot in a car and they don't stop , that's just too bad and it totally sucks and you better bust your ass to get yourself to the hospital right now so they can save the foot.”





And another thing! : Maxine on life, love and losers
Don't worry, be crabby! : Maxine's guide to life


Life is short ... wear your party pants : ten simple truths that lead to an amazing life
Loretta LaRoche has helped millions of people find ways to lighten up and overcome stress. Now, in Life Is Short—Wear Your Party Pants, she gives you the tools you need to not only reduce feelings of tension, but also to bring joy, passion, and gusto into your life. Her techniques are a brilliant blend of old-world common sense and the most contemporary research in brain chemistry, psychology, and mind-body studies. Loretta gives you dozens of proven techniques for recognizing the ten simple truths that will lead you to an intense, happy, successful life: resilience, living in the moment, optimism, acceptance, humor, creativity, moderation, responsibility, meaning, and connection.

Untouchable [DVD]
Untouchable is both heartbreaking and, at times, very funny. The two men discover that they both have disadvantages in life – one a physical disability, the other socioeconomic. The film confronts the emotional and physical implications of paralysis, and the way that society makes disabled people invisible or "untouchable".





A funny thing happened on the way to the nursing home: a different handbook for carers of dementia patients

This short, funny and sad book is a series of snapshots rather than a handbook as such. It describes, with a mixture of humour and pathos, some of the experiences of caring for a spouse with dementia, and in so doing imparts practical and useful advice. It is one person's view of how to manage an increasingly common problem, and explains why a sense of humour, and indeed a sense of the ridiculous, are very necessary attributes for surviving the caring process.
 The author's methods of managing his wife's difficult behaviour are excellent examples of lateral quick thinking. Dealing with an imagined visit from a duchess at 2 am, or the urgent need to plant a tree in the middle of the dining room floor, requires a good imagination and fast footwork - it contains some useful ideas for dealing with some of the more difficult behaviours associated with the dementing process.




Laughter is the greatest stress buster in the world. As you laugh along with a studio audience, you'll discover for yourself the energising and relaxing benefits of laughter. You'll learn where to find and use humour to develop a more playful disposition, boost your sense of humour and share with others the gift of laughter. The DVD is filled with funny stories, practical ideas and props to bring more humour into your life. Watch Stress and Humour for a 'fun break' at home and at work for meetings, training sessions and team building.
 
These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

Teepa Snow DVDs



Instead of blaming the PWLD and the disease and then “drugging them up” as Snow says in the video, we need to learn how to:
1) prevent crises from happening in the first place
2) de-escalate them if and when they occur despite our best efforts
Here are 10 techniques anybody can use to calm a crisis in which a PLWD becomes distressed and/or aggressive ...
  1. Remove the threat
  2. Create space
  3. Get on her/his side
  4. Get at or below eye level
  5. Use Hand Under Hand™
  6. Breathe in sync
  7. Calm your voice
  8. Relax your body
  9. Attend to her/his needs
  10. Be willing to go where he/she is
  if you would like to reserve these DVDs  please email the Library
   
DVDs include;
  1. The art of caregiving
  2. Challenging Behaviors in Dementia Care: Recognizing & Meeting Unmet Needs
  3. Filling the day with meaning : facilitated by Teepa Snow
  4. In-home dementia care: tips & techniques
  5. It's all in your approach
  6. The Journey of Dementia
  7. Lewy body dementia : what everyone needs to know
  8. Progression of dementia : seeing gems - not just
  9. Understanding Frontotemporal Dementias
 
 

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 nsw.library@alzheimers.org.au
 
 

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.
 

August 01, 2016

a gentle look at dementia on DVDs

and driving ...
Set in Atlanta in the 1950's, a textile factory owner insists on hiring an ever-patient chauffeur for his aging head-strong mother. The Jewish woman and her African American driver eventually build a relationship over many years.

On Golden Pond [DVD]
This classic film from 1981 stars Katherine Hepburn, Henry Fonda and Jane Fonda, it shows the conflicts between three generations as the Thayers, a crotchety old professor and his wife, spend their summer together on a lake in New England. The couple agrees to mind their estranged daughter's boyfriend's child, while the daughter and her boyfriend go on a trip. The boy bonds with the old man in a way his daughter never did. Shows the terrors and graces of aging.



 
Still mine
 This is an intimate portrait of Frank, a man in his late eighties who finds himself caring for his wife of 61 years. Whilst no formal diagnosis is ever made, it is apparent that Irene has dementia and requires more support to continue to live at home. Facing the realities of their changing circumstances, Frank decides to build a dwelling more suitable than their long-term family home and is thrust into the contemporary world of permits, plans, building codes and the consequences of not complying with these restrictions.
Whilst taking on more tasks within the home, to compensate for Irene’s changing abilities, Frank also contends with the concerns of his seven children and their preference to have Irene, or possibly both Frank and Irene, getting professional care or support. Still Mine is ultimately a story about a relationship between husband and wife and their staunch determination to remain together and care for one another. At times, this means other family members are excluded and disregarded. Yet no one doubts their devotion to one another. It is a story of empowerment and acceptance in very stressful circumstances. Whilst their situation bends them, it does not break them and Still Mine is, among other things, a story of triumph.
Untouchable [DVD]
Untouchable is both heartbreaking and, at times, very funny. The two men discover that they both have disadvantages in life – one a physical disability, the other socioeconomic. The film confronts the emotional and physical implications of paralysis, and the way that society makes disabled people invisible or "untouchable".



 
fireflyFirefly dreams,
A Japanese sub-titled film about a troubled teenage girl who forges an unlikely friendship with an older person with dementia, becoming her carer and companion. This coming of age story focuses on 17 year old Naomi, sent to spend the summer holidays with her aunt in a small Japanese village whilst her parents navigate their separation and increasing inability to cope with Naomi’s behaviour. Initially, Naomi is stifled by the slower pace and physical demands of working with her aunt’s family in the hotel they run. She misses the city and is frustrated by her cousin, Yumi. Naomi goes to visit Mrs Koide, whom she knows from her childhood and at first is baffled by the inconsistencies in her elderly relative’s behaviour. As the summer passes, Naomi grows closer to Mrs Koide and her aunt’s family and whilst sometimes puzzled by Mrs Koide’s abrupt changes of topic, she tolerates and supports Mrs Koide’s needs.
Dementia is not overtly referred to in this film and the carer role that Naomi occupies is quite lightweight – focused on companionship rather than the day-to-day requirements of caring. The representation of dementia in this film focuses on some fairly mild forgetfulness, the person with dementia revisiting and re-enacting key past life experiences and some hospitalisation scenes.
In this film, the person with dementia dies and the implication is that her death was directly linked to dementia
These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au
 
 

keep calm and be mindful ... listen to one of these CDs

These recordings have been designed  for use in conjunction with 'The Happiness Trap'. However, they are useful in their own right, or in conjunction with any other book or course that is based on mindfulness skills. Track 1: is a simple 4-minute introduction to the concept of mindfulness.
Track 2:  Mindfulness of the Breath, is a 22-minute exercise, which teaches the fundamental skills of mindfulness. A bell rings halfway through, so you can do an 11-minute version if you’re very busy.
Track 3: Mindfulness of Emotions, is a 16-minute exercise designed to be used whenever you feel in the grip of strong feelings, such as anger, fear, guilt, anxiety, depression etc.
Track 4: ‘Leaves On A Stream’, is a 12-minute exercise to help you develop the skill of letting your thoughts come and go, without getting caught up in them.
Track 5: ‘The Observing Self’ is a 15 minute exercise that helps you connect with a 'place inside you' from which you can safely observe and make room for even the most painful thoughts and feelings.

This CD has been designed to add to, and develop further, the mindfulness skills learned in Volume 1.
The regular practice of mindfulness will reduce stress, enhance self-awareness, increase life satisfaction, and improve your ability to handle painful thoughts and feelings effectively.
There are 5 tracks on the CD, plus an 8-page booklet about mindfulness.
What's On The Volume 2 Cd?

Track 1: Introduction  - a 2 minute recap of mindfulness skills, and the purpose of developing them.
Track 2: Mindfulness of the body - 33 minutes. This is a challenging exercise, in which you slowly, deliberately, mindfully scan your body from head to toe, over a period of 33 minutes. A bell rings halfway through, so you can do a shorter version. This is excellent for people with chronic pain, chronic illness, insomnia, stress, anxiety etc.
Track 3: Mindfulness of sounds. This is a 12 minute exercise involving mindfulness of sounds in your environment; an excellent practice for grounding and centering yourself.
Track 4: Labelling thoughts and feelings. This is a 13 minute exercise where every thought and feeling that 'shows up' is observed with curiosity, simply labelled, and allowed to come and go of its own accord. The technique of labelling can be used to accentuate any other mindfulness skill.
Track 5: Open Awareness. This 13 minute exercise is arguably the hardest mindfulness skill to master. However, it pays huge dividends with ongoing practice.

also by Russ Harris


The reality slap : finding peace and fulfilment when life hurts by Harris, Russ
The “reality slap” is a rude awakening that creates a gap between what you have and what you want. It could be an unwanted divorce, the death of a loved one, or a serious medical diagnosis. It may be as simple as recurring feelings of failure or disappointment that life isn’t going according to plan. The bigger the gap, the harder it is to bridge it-but it is possible. The Reality Slap offers real-life stories and simple exercises to help readers stop depending on things outside of themselves for validation and well-being and instead work on finding peace and fulfilment within.
and


The happiness trap : how to stop struggling and start living
by Russ Harris
Every life is touched by disappointment and difficulty. Ironically, it is our fear of negative experiences that keeps us trapped in cycles of unhappiness. Based on the insights and techniques of a new form of psychotherapy called Acceptance and Commitment Therapy (ACT), Harris offers key principles and techniques for escaping the “happiness trap” to create a full, rich, and meaningful life.
Harris shows how mindfulness and acceptance can help us to overcome common emotional problems. He presents the six key techniques of ACT that have been proven effective in helping individuals to: handle painful feelings more effectively escape the grip of self-defeating habits, including addiction rise above fears, doubts, and insecurities create a richer and more meaningful life.

Mindfulness is easier than you think and has been shown to reduce stress ...

 









Mindfulness : an eight-week plan for finding peace in a frantic world
From one of the leading thinkers on Mindfulness-Based Cognitive Therapy, a pioneering set of simple practices to dissolve anxiety, stress, exhaustion, and unhappiness.In "Mindfulness," Oxford professor Mark Williams and award-winning journalist Dr. Danny Penman reveal the secrets to living a happier and less anxious, stressful and exhausting life. Based on the techniques of Mindfulness-Based Cognitive Therapy, the unique program developed by Williams and his colleagues, the book offers simple and straightforward forms of mindfulness meditation that can be done by anyone--and it can take just 10-20 minutes a day for the full benefits to be revealed.
 Opening the door of your heartDuring his wanderings and work over the last 30 years as a Buddhist monk, Ajahn Brahm has gathered many poignant, funny and profound stories. While traditional Buddhist philosophy is at the heart of this collection, these thoughtful stories are written like playful parables, which are used to launch into a deeper exploration of subjects such as mindfulness, suffering, forgiveness, hope, wisdom and unconditional love. Told with wit and good humour, they reveal moments of compassion in the lives of ordinary people and the timeless wisdom of the Buddha's teachings.
book review: I can't praise this book highly enough. Firstly, let me say I have no interest in pursuing Buddhism (or any other religion), and I am also not the type to be found in the "self-help" section. But this book is a thing of absolute beauty. On the two occasions I've read through it - firstly whilst going through a messy breakup in 2008, and again recently whilst confronted with a different flavour of awful - different stories have jumped out at me and helped me find peace. Reading it really is like having a calm, endlessly patient and understanding friend in the room, and I never say this, but I actually would recommend this to everyone. Yes, everyone!

Mindfulness for beginners
On Mindfulness for Beginners, this internationally known scientist, bestselling author, and teacher who brought mindfulness meditation into the mainstream of medicine and society gives you immediate access to a practice that can potentially add years to your life, and will certainly enhance the quality of your moments and your years.

Course objectives:
  • Apply an understanding of the concept of mindfulness
  • Utilize simple guided meditations led by Kabat-Zinn
  • List the ethical and attitudinal foundations necessary to cultivating mindfulness
  • Assess how we can choose where to focus our awareness
  • Plan to use mindfulness to help us develop compassion and insight into our true nature

 Perhaps no other person has done more to bring mindfulness meditation into the contemporary landscape of America than Jon Kabat-Zinn. Through a number of research studies, and through Kabat-Zinn's pioneering work at the University of Massachusetts Medical School where he is founder of its world-renowned Stress Reduction Clinic, mindfulness is finally being recognized as a highly effective tool for dealing with stress, chronic pain, and other illnesses.

These and other similar resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

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