March 25, 2017

how do carers keep caring for their loved ones living with dementia


from the article in  Journal of Dementia Care - Vol 25 No 2 March/April 2017
Spouse carers: the importance of motivation

it was found that 
Family carers are a crucial resource in the care and support of people with dementia, but their motivations for caring can make the difference between success and failure. William Tai discusses his study of support workers’ views on the way motivations can change and undermine carers’ health


Key points

Importance of carers’ motivations plays an important role

The experience of caring for a spouse or loved one with dementia is unique 
      
There has been little research exploring the motivations for family  care giving in the advanced stages of dementia

Support workers interviewed for this study suggested that family carers start out with ‘intrinsic ’ motivations – such as ‘I care because I love my spouse’ and then move to a more ‘extrinsic’ view  eg ‘I care because I don’t want to be judged by others’  

Extrinsic motivations may take over from intrinsic motivations due to the cumulative impact of the condition

The dominating presence of the extrinsic motivations may hinder the prospect of continued caring by family and also due to poorer carer health as an impact of the role

Anticipating and targeting motivations, emphasising and reinforcing any intrinsic ones and through talk based modalities may have a role in the help we offer spouses

these are some resources that carers have found helpful in their journey as a dementia carer.

 
 
When someone you know has dementia : practical advice for families and caregivers
 
Providing practical information and support for people living with, or caring for someone with, dementia. 

It also provides insight into what is happening when a person has dementia as well as describing what dementia is, how you can deal with it, and what you can do to keep dementia at bay. 

Unlike the many other books that look at this condition purely from the perspective of caregivers, this guide, by one of the world's leading experts, provides insight into what it feels like to have dementia while giving attention to the needs of caregivers and families. 

Packed with practical tips for providing what people with Alzheimer's disease or other forms of dementia want and need, this book will go a long way toward helping them stay well and happy as long as possible. 
 














Confidence to care : a resource for family caregivers providing
 Alzheimer's disease or other dementias care at home

... is the essential handbook for the family caregiver offering practical insights to understanding, managing and preventing the behavioral symptoms associated with dementia and Alzheimer's disease.

 Touching, personal stories combined with practical and easy-to-access tips and techniques drawn from decades of caregiving experience by internationally-recognized experts will help the family caregiver confidently deal with the most common issues associated with dementia. 'Confidence to Care' includes chapters offering caregiving strategies and recommends other resources for the family caregiver.














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 dementia.



One day at a time : sharing life with dementia
by Dorothy Webb

Care partners are the essential ingredient in the life of a person diagnosed with dementia. 

They enter this role unexpectedly, untrained and totally unprepared for their own mixture of emotions.

Dorothy shares her insights into learning how to cope, live and laugh as a carer of a person with dementia in order to help family, friends and the community to realise the emotional trauma of the early years as a carer.


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!
















Mindfulness for carers:
 how to manage the demands of caregiving while finding a place for yourself


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.











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.











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.


 Guided mindfulness meditation

 







Now with this four-part home training course, Jon Kabat-Zinn offers listeners the definitive mindfulness meditation practice on CD. We are not trying to actively achieve a state of deep relaxation—or any other state for that matter—while practicing mindfulness, he teaches. But interestingly, by opening to an awareness of how things actually are in the present moment, we often taste very deep states of relaxation and well-being of both body and mind.














The Mindful way workbook : an 8-week program to free yourself from depression and emotional distress
by John Teasdale, Mark Williams, and Zindel Segal


Mindfulness-based cognitive therapy (MBCT),  has been tested and proven effective in clinical trials throughout the world. You can get the benefits of MBCT any time, any place, by working through this carefully constructed book. The expert authors introduce specific mindfulness practices to try each week, plus reflection questions, tools for keeping track of progress, and helpful comments from others going through the program. Guided meditations are provided on the accompanying MP3 CD and are also available as audio downloads. 

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?


This report from Harvard Medical School that explains why sleep often eludes us as adults. You’ll read about those habits and conditions that rob us of peaceful slumber. And most importantly, you’ll learn what you can do to again enjoy the satisfaction of a restful night’s sleep.

You learn not only what triggers insomnia but also how new techniques and therapies are helping men and women get to sleep more quickly — without the use of medications. You’ll read about the benefits of “strategic naps.” You’ll discover how to make your sleep surroundings more conducive to rest. And you’ll be told about seven things you should do — and not do — before going to bed.

 The Mayo Clinic handbook for happiness : a 4-step plan for resilient living


Discover 4 simple steps to live a resilient, joy-filled life.
The Mayo Clinic Handbook is like a treasure map that leads you step-by-step along a clearly marked path to an incalculable reward. Your reward is not a diamond mine, not a pirate’s booty, but something far more valuable — a lifetime of joy and contentment.

... offers a straightforward plan anyone can implement across 10 weeks.
four-step self-help process is a joy to undertake and offers you wonderful rewards:
•In Step One, you’ll learn how to better regulate what you think and perceive. This step is actually so enjoyable, it to "adding chocolate powder to your glass of milk."

•Step Two is truly powerful. It will “enhance your inner strength by making you emotionally resilient and happier."

•Step Three produces results that users say range from “momentary calm” to “ecstatic bliss."

•Step Four is designed to “help you decrease your stress and increase the energy available to you each day."


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.

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


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

March 24, 2017

Journal of Dementia Care - Vol 25 No 2 March/April 2017

Full text articles and books are available to members of Alzheimer’s Australia NSW by emailing NSW.Library@alzheimers.org.au

Editorial Comment
‘Slow care’ an ambition worth fighting for – it takes time to deliver good care and that is the main  commodity that healthcare professionals don’t have. Like the slow food movement the slow care movement advocates a swing to activities such as life story work- as it involves active listening, promotes well-being and connectivity …

email nsw.library@alzheimers.org.au to borrow resources
 bfn Michelle 

It started with a sea-shell : life story work and people with dementia
 
Dementia Services Development Centre (University of Stirling)
Establishes the importance of life story work for people with dementia; argues that everyone can get involved and offers practical ideas and a charter of good practice.
Contents: 1. Life story: a view from the literature -- 2. The experience of doing life story work -- 3. Good practice in doing life story work and compiling life story books -- 4. Getting life story work to happen.
 
Page 5




Life Story Work with People with Dementia : Ordinary Lives, Extraordinary People

Introducing life story work, a way for people with dementia to connect with their relatives, carers and the professionals working with them. This evidence-based book explains the many benefits of life story work, with practical guidance for introducing it in a variety of settings. The authors show how life story work can empower people with dementia to inform care practitioners and family members what care and support they may need now and in the future, by taking into account their past and their future wishes and aspirations. The book includes practical information on how to get started, ethical considerations such as consent and confidentiality, and considers issues of diversity and how to address them. The voices of practitioners, researchers and family carers sit alongside those of people living with dementia to present a wide-range of perspectives on life story 

The handbook of structured life review


Clear and concise, The Handbook of Structured Life Review synthesizes 30 years of research and practice using the Structured Life Review process. Structured Life Review is a one-on-one therapeutic technique that guides people in reflecting on their lives from early childhood to the present. This approach allows individuals to learn from past experiences, settle unresolved issues, and ultimately achieve a state of life acceptance. Participants benefit from increased life satisfaction, reduced depression, and the opportunity for reconciliation, acceptance, and serenity. Following this user-friendly handbook, Structured Life Review sessions can be easily led by professionals and non-professionals alike: social workers, counselors, activity staff, or even volunteers. The book thoroughly explains the role of the Therapeutic Listener and describes useful counseling and communication techniques. Step-by-step goals, instructions, and sample dialogue for eight separate sessions provide a blueprint for conducting life reviews. Handy appendices include assessment tools and a Life Review Form with recommended questions for each session. Structured Life Review is appropriate for people of all ages, including older adults in senior centers, assisted living facilities, skilled nursing centers, and home settings. The approach is especially beneficial for individuals experiencing stress, undergoing major change, or coping with grief or a traumatic event. Additionally, Structured Life Review not only fulfils current requirements for meaningful activities but meets the criteria for short-term therapy covered by Medicare and other insurance providers.

Writing life histories : a guide for use in caring environments
by Robin Dynes
Writing Life Histories is a practical handbook which gives clear guidance on how to put together life histories in supportive or residential settings. It provides: Step-by-step guidance. Ideas for different types of life histories. Activities, strategies and material for prompting memories. Helpful tools and writing tips. Suggestions for support and forming partnerships with other local services. Ideas for involving the person s family and friends. Discussion on ethical issues to be considered. The benefits of engaging a group or an individual in life history activities include an aid to memory; creative stimulation; a personalised identity when in a residential home; promotion of interaction and co-operation with others; continuity with previous life experience thus combating loss of identity as well as an excellent opportunity to pass on knowledge and experience to others. For staff knowing about past experiences will promote an understanding of behaviour, needs and outlook on life resulting in more personalised care. Staff have references for conversation with cognitive impaired individuals and knowledge about life accomplishments which promotes respect for individuals.


Changed priorities for a new dementia strategy

Key points :
·         promising cures are often reported in the media but their consistent failure does not make big news headlines
·         social support offers more benefit than medical treatments do
·         current state of knowledge suggests that prevention/risk reduction will yield the most benefit
·         placing dementia on  a war footing metaphor may be the wrong metaphor
·         person-centred approaches to people living with dementia and their carers are also helpful to people with other complex  problems such as frailty


Positive spin : the benefits cycling brings

Cycling is fun and taps into procedural memory which can remain remarkably unaffected in people with cognitive impairments – benefits include inclusivity and validation …p14


Smart technology to monitor health and wellbeing

They may be in homes or around necks – they can yield round the clock information
..p 18

Immersive learning leads to being inspired and energised

Looks at a pilot program in five hospitals - - 3 different learning sets included … p 20

Life story work in dementia care – a new road map

Uses the 5 Ps -  principles – purpose - process - product – PERSON.
P 22

What is the truth? Dilemmas when 2 realities meet
Should we always tell the truth to people with dementia – by graham Stokes …
Looks at a continuum




Ill-being
truth




Well-being

Truth-telling causes unnecessary distress


Truth-telling creates happiness or necessary negative emotions

Untruths cause unnecessary distress

Untruth create
Happiness
Lie
Need to take a flexible, tailored approach – person first, strategy second

*two reports email nsw.library@alzheimers.org.au to borrow resources
 bfn Michelle 




The vital importance of oral health in demenita care
Poor oral health I soften associated with dementia – but skilled professional interventions can break the link.
Dementia and the mouth – the range, speed and co-ordination of mouth and tongue  movements lead to problems
Practical tools – eg brushing teeth twice a day…

email nsw.library@alzheimers.org.au to borrow resources
 bfn Michelle 


Dental Rescue: A Guide for Carers of the Elderly 

is an educational dental drama that will amuse, motivate and educate. An ideal tool for orientating professional and non-professional carers in oral health practices, it will develop skills in dental hygiene and denture care; identify how to prevent dental problems occurring; teach management strategies for residents with challenging behaviours; address occupational health and safety issues; and give an appreciation of how oral health affects well being. Dental Rescue: A Guide for Carers of the Elderly is captioned for deaf and hard of hearing audiences.  

Key learning goals include developing skills in dental hygiene and denture care; identifying how to prevent dental probelms occuring; managing challenging behaviours; appreciating how oral health affects wellbeing and addressing occupational health and safety issues.



Younger onset dementia and the benefits of employment
Carers/FamiliesResearch
Loss of a job can bring loss of purpose and self-esteem in its wake. Jacqueline Chang and colleagues found that work-based interventions can have important benefits for people with young onset dementia and argue it should be the strategy of choice for services

Vol 25 No 2 Page 30

·         Includes a systematic review
·         The impact on Personhood
·         Employment based interventions –includes different types of interventions
  
Spouse carers: the importance of motivation
Family carers are a crucial resource in the care and support of people with dementia, but their motivations for caring can make the difference between success and failure. William Tai discusses his study of support workers’ views on the way motivations can change and undermine carers’ health
Key points
·         Importance of carers’ motivations plays an important role
·         Informal family carers save vast amounts of  government money
·         The experience of caring for a spouse or loved one with dementia is unique
·         There has been little research exploring the motivations for family  care giving in the advanced stages of dementia
·         Support workers interviewed for this study suggested that family carers start out with ‘intrinsic ’ motivations – such as ‘I care because I love my spouse’ and then move to a more ‘extrinsic’ view  eg ‘I care because I don’t want to be judged by others’
·         Extrinsic motivations may take over from intrinsic motivations due to the cumulative impact of the condition
·         The dominating presence of the extrinsic motivations may hinder the prospect of continued caring by family and also due to poorer carer health as an impact of the role
·         Anticipating and targeting motivations, emphasising and reinforcing any intrinsic ones and through talk based modalities may have a role in the help we offer spouses


March 18, 2017

New DVDs in the library dealing with difficult older people

email nsw.library@alzheimers.org.au to borrow resources
tgif Michelle 




Last cab to Darwin

Rex is a loner, and when he's told he doesn't have long to live, he embarks on an epic drive through the Australian outback from Broken Hill to Darwin to die on his own terms; but his journey reveals to him that before you can end your life, you have to live it, and to live it, you've got to share it.


The lady in the van
At the complicated heart of The Lady in the Van lies a great mystery. How could anyone, no matter how saintly, allow a homeless woman to spend 15 years living in a battered and unsanitary old van parked in his suburban London driveway, surrounded by a smelly cordon of plastic bags?

Miss Shepherd  is not a woman to reward kindly impulses and conspicuous acts of charity. She is cantankerous, bossy, manipulative, dirty enough to be a health hazard, and more than a bit mad. Nonetheless, she's canny enough to guess Bennett is the Camden Town resident most likely to put up with her. Admittedly, it's occupation by increment. For a long time, she parks in the street in front of his house. But it's a risky existence and Bennett is sometimes to forced to step in and protect her from passing hooligans. Then the council orders she move on and, addicted by now to the verbal duels that make up their daily dealings, he lets her slide into the driveway.
in the film there is Bennett the writer, anchored to his desk, and Bennett the doer, who lives through the experiences his counterpart will write about. And they continually argue – about Bennett the doer's timidity, the smallness of his life and his guilt over his mother.

Now her dementia is forcing him to admit her to a nursing home and somehow her fate is linked in his mind to that of Miss Shepherd.


Amour 
This film by Michael Haneke explores death, ageing and the fear of loss. Anne and George (Emmanuelle Riva and Jean-Louis Trintignant) are a couple in their 80s who are enjoying their retirement, but that changes when, after an operation following a stroke, Anne is left wheelchair-bound and paralysed. Although she expresses her wish to die, even going so far as to make an attempt at taking her own life, George tries to remind her of the beauty and worth of life itself and the love that they share for each other. The feature won the Golden Globe for Best Foreign Language Film and received BAFTAs for Best Film Not in the English Language and Best Leading Actress (Riva).

Driving Miss Daisy
In 1948, Mrs. Daisy, a 72-year-old wealthy, white, Jewish, widowed, retired school teacher, lives alone.
When Miss Daisy wrecks her car, her son, Boolie, hires Hoke Colburn, an African American chauffeur. Miss Daisy at first refuses to let anyone else drive her, but gradually gives in.
As Miss Daisy and Hoke spend time together, she gains appreciation for his many skills. After the house keeper   dies in 1962, rather than hire a new maid, Miss Daisy decides to care for her own house and have Hoke do the cooking and the driving.
The film explores racism against black people, which affects Hoke at that time. The film also touches on anti-semitism in the South. After her synagogue is bombed, Miss Daisy realizes that she is also a victim of prejudice (religious). But American society is undergoing radical changes, and Miss Daisy attends a dinner at which Dr. Martin Luther King gives a speech. …
Hoke arrives at the house one morning in 1971 to find Miss Daisy agitated and showing signs of dementia. Hoke calms her down. Boolie arranges for Miss Daisy to enter a retirement home. In 1973, Hoke, now 85, retires. Boolie and Hoke drive to the retirement home to visit Miss Daisy, now 97. As Hoke feeds her pumpkin pie, the image fades, with a car driving away in the distance.

Nebraska
*this is a great example of caring for parents that weren't great parents and also demonstrates great communication !
(see the book Taking care of parents who didn't take care of you : making peace with aging parents)
This is a story about hope. Hope for a different future, hope to improve the relationship between a father and son, hope to right old wrongs, hope that life can get better rather than harder.
Although it would have been simple to paint many of the characters as people worthy of pity and derision, instead you are shown that everyone is complex, simple, nice, nasty. 
Nebraska excels in that it shows us different perspectives of each family member’s experience of Woody’s possible or probable dementia and leaves us to draw our own conclusions. The humour is dark, but there are frequent moments of undeniable levity. It’s cheeky and unapologetic. And it feels real. Which makes it special.
Watch this if:
• You like stories about complicated, imperfect people and their relationships
• You’d like to see a different story about dementia – maybe.
Don’t watch this if:
• You don’t like swearing
• You prefer your stories a little less up close and personal.

 
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.



Iris - Based on the book Elegy for Iris by John Bayley, this movie tells the true story of English novelist Iris Murdoch's descent into Alzheimer's disease and the unconditional love of Bayley, her partner of 40 years. Jim Broadbent won an Academy Award and a Golden Globe for Best Supporting Actor for his portrayal of Bayley in his later years; Judi Dench and Kate Winslet received both Academy Award and Golden Globe nominations for Best Actress and Best Supporting Actress, respectively, for their portrayal of Murdoch in her older and younger years.
 


The Savages 
- Jon and Wendy Savage are two siblings who have spent their adult years trying to recover from their abusive father, Lenny. Suddenly, a call comes in that Lenny's girlfriend has died and he cannot care for himself. Lenny suffers from dementia and her family dumps Lenny on his children. Despite the fact Jon and Wendy have not spoken to Lenny for twenty years and he is even more loathsome than ever, the Savage siblings feel obliged to take care of him. Now together, brother and sister must come to terms with the new and painful responsibilities with their father. The siblings are forced to face the struggle with their own personal demons.


Age Old Friends - John Cooper is in a retirement home. There are strict rules for the residents, but he refuses to fall into passivity. He flirts constantly with Nurse Wilson and spends time with his best buddy Michael Aylott, who's slowly drifting into dementia. The movie portrays the fight for independence and dignity in old age.


Getting on. Series 1 and 2

"A pitch-black hospital comedy emerging from the more of the mundanity, bureaucracy and absurdity of health care with warmth, wit and laughter"
Ward B4 is a backwater of an NHS hospital – a depository for dying and discombobulated geriatric women.

The program shows in a humorous way the difficulties in putting the patient first, it looks at issues such as aged care, homelessness and clients who do not speak English.

Kim Wilde, played by Jo Brand, is a return-to-work nurse who must adapt to the difficulties the modern NHS throws at her, with C. diff, form-filling, and political correctness. 

She is the staff member most empathetic to the concerns of patients and their families, which often brings her into conflict her colleagues, who are more concerned with sticking to the rules. 

Dr Pippa Moore, played by Vicki Pepperdine, is the "tough but fair" Care of The Elderly Consultant. She is uptight, self-centered, and lacking in "people skills", often being discourteous to her colleagues, her medical students, and even the patients. She, however, remains oblivious to the offence she causes, believing that people are impressed by her professionalism.









About Schmidt [DVD]
Warren Schmidt is about the taste the not-so-sweet slice of life. When he retired, he and his wife, Helen, had big plans - but an unexpected twist changes everything. Now, all of Schmidt's attention is focused on his daughter's upcoming wedding to a loser waterbed salesman. From meeting the groom's hippie parents to sponsoring a Tanzanian foster child, Schmidt embarks on a search for answers, only to discover that life is full of trick questions.


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