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

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
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

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

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

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

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.

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

Dementia – The international journal of social research and practice,

... full text articles are available to members of AANSW - if you would like to reserve them please email the Library on

Table of Contents

July 2016; 15 (4)

Top of Form


The experience of self and threats to sense of self among relatives caring for people with Alzheimer’s disease

Dementia July 2016 15: 467-480,

Abstract This study explored how the relatives of people with Alzheimer’s disease expressed Self 2 and Self 3 according to HarrĂ©’s social constructionist theory of selfhood. Having a relative with Alzheimer’s disease affects one’s life. In this study, we concentrated on how close relatives of people with Alzheimer’s disease experienced their sense of self. This study was descriptive and qualitative. Interviews were conducted with 20 relatives of 10 people with Alzheimer’s disease from 2009 to 2011. The data were analysed according to HarrĂ©’s social constructionist theory of selfhood including Selves 2 and 3. Participants reported that Alzheimer’s disease challenged their personal attributes, relations and positioning. Understanding how Alzheimer’s disease affects the sense of self among close relatives is important, as this knowledge is pivotal for supporting these relatives who are often informal caregivers in ways that enable a fulfilling and meaningful life.


Creating a duet: The Couples Life Story Approach in the United States and Japan

Dementia July 2016 15: 481-493,


There is a global need for interventions that help couples who are dealing with dementia. This paper describes the way in which interventionists from the United States and Japan participated in the development of an intervention for dyads in which one person is experiencing memory loss. The 5-week intervention, the Couples Life Story Approach, helps dyads to reminisce about their life together as a couple, to work on their patterns of communication, and to develop a Life Story Book. Based on an analysis of cases conducted in the United States (n = 20 couples) and Japan (n = 9 couples), this paper highlights the cross-fertilization process that has occurred as interventionists from the two countries have shared their experiences with one another. Using case illustrations, the discussion focuses on the clinical themes that have emerged for couples in the United States and Japan


The relationship between apathy and participation in therapeutic activities in nursing home residents with dementia: Evidence for an association and directions for further research

Dementia July 2016 15: 494-509,


Apathy is one of the most frequent and early symptoms of dementia. Because apathy is characterised by lack of initiative and motivation, it leads to considerable burden being placed on carers to ensure that the person living with dementia has a reasonable quality of life. The aim of this study was to investigate the relationship between apathy and participation in therapeutic activities for older people with dementia living in nursing homes. Ninety residents were recruited into the study, and apathy was measured by nursing home staff using the Apathy Evaluation Scale Clinician version. Staff also compiled data on each resident’s involvement in therapeutic activities. Among this sample, the mean age was 84.8 years, and mean length of stay in the nursing home was 1.8 years. The mean apathy score was 50.4, indicating that on average the residents had a moderate level of apathy. Overall, residents participated in six activities per week and those residents who were involved in the most activities had the lowest levels of apathy. This paper provides evidence that residents involved in therapeutic activities have lower levels of apathy. Further research should be conducted on the direction of causality, whether apathy levels can be changed through participation in therapeutic activities, the relationship between dementia severity and modifiability of apathy, and the intensity of therapeutic activities required to maintain functioning.


Information and care: A relational approach

Dementia July 2016 15: 510-525,


This article explores how the provision of information about dementia impacts on carers and the caring relationships in which they are involved. Narrative interviews were undertaken with 25 carers who had undertaken the Alzheimer’s Society – run Carer Information and Support Programme in one of seven sites across London and the South East. Thematic analysis identified two major themes relating to the impact of information on carer and caring relationships (‘understanding and care’ and ‘emotional impact of information’), and another theme relating to the context within which the information was provided and shared (‘relational practices in information-giving and receiving’). Findings suggest that while information, particularly in the form of new knowledge about how dementia progresses, helps to improve understanding and increase confidence, competence and a sense of security and achievement in caring practices, it can also confound and complicate caring practices in ways that reflect and reinforce previously difficult relationships. Providing information in the context of carers’ support was important for most participants but others were less able to benefit from this, especially where they felt unrecognised or where the timing of information felt inappropriate to their needs. Our analysis complements and extends previous scholarship emphasising the relational nature of care by showing how information can both enhance and complicate care relationships, depending on both specific care contexts and on how carers experience the context of information provision.


COMMUNI-CARE: Assessment tool for reactions and behaviours of patients with dementia in a multisensory stimulation environment

Dementia July 2016 15: 526-538, Abstract

Background The ‘Snoezelen’ is an approach based on stimulation and sensory stimulation proposals, giving priority to the notion of caretaking. The aim of this paper is to present the creation and validation of the COMMUNI-CARE scale. This is a new tool that allows for an evaluation of the psycho-emotional well-being that the patient with dementia shows in a ‘Snoezelen’ multisensory stimulation environment.

Methods In total 429 evaluations in 143 multisensory stimulation interventions were made using the COMMUNI-CARE scale, in 16 patients between 53 and 85 years of age, diagnosed with moderate to severe dementia. The goal was to evaluate the psycho-emotional well-being the patients present.

Results The tool’s internal consistency showed a Crombach alpha of 0.90. The concurrent validity between the COMMUNI-CARE scale and the Clinical Global Impression (CGI) was of r = −0.961. The Kappa index used to determine the reliability between evaluators was of K = 0.87.

Conclusions The COMMUNI-CARE scale fulfills the basic principles of classic psychometrics of construct, and criterion validity and reliability. It does so while showing a clear idea, through its five subscales (anxiety, communication, pleasure, adaptation to the surroundings and affection), of the degree of well-being that the patient with dementia shows during such interventions. This scale embodies, through psychometrics, a very subjective human experience with a tool unavailable to date.

Coffee, Cake & Culture: Evaluation of an art for health programme for older people in the community

Dementia July 2016 15: 539-559,


Arts for health initiatives and networks are being developed in a number of countries and an international literature is emerging on the evidence of their benefits to people's health, wellbeing and quality of life. Engagement in cultural and creative arts by older people can increase their morale and self-confidence and provides opportunities for social connection. Museums and galleries are increasingly required to justify their expenditure, reach and impact and some are working in partnership with local councils, hospitals, schools and communities to improve access to their collections. There is a body of literature emerging that describes such initiatives but empirical evidence of their benefits is less developed. This article reports an evaluation of an art for health initiative – Coffee, Cake & Culture organised and delivered by Whitworth Art Gallery and Manchester Museum in 2012 for older people living in a care home and a supported living facility. The study has identified the benefits and impacts of the arts for health programme and its feasibility for older people, with or without diagnosed memory loss – dementia, living in a care home or supported living facility and their care staff. The findings demonstrate there were benefits to the older people and their care staff in terms of wellbeing, social engagement, learning, social inclusion and creativity. These benefits were immediate and continued in the short term on their return home. The majority of older people and care staff had not previously been to the art gallery or museum and the programme encouraged creative arts and cultural appreciation which promoted social inclusion, wellbeing and quality of life. The programme is feasible and important lessons were identified for future planning. Further research involving partnerships of researchers, arts for health curators, artists, care staff, older people and their families is warranted.


“We’re all thrown in the same boat … ”: A qualitative analysis of peer support in dementia care

Dementia July 2016 15: 560-577,


Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

Crucial dimensions constituting dignity experience in persons living with dementia

Dementia July 2016 15: 578-595,


Dignity is seen as an essential need, fundamental right, and inherent quality of each human being. There is however, a need for increased knowledge on crucial dimensions constituting dignity experience in persons living with dementia. This study explored personal dimensions of life which persons with dementia perceived crucial for experiencing dignity in their daily lives. Based on the findings of eight empirical sub-dimensions, three main dimensions crucial for constituting dignity experience, were identified through hermeneutical interpretation: A historical dignity-dimension, acknowledging one’s own life-projects and life-history; an intrapersonal dignity-dimension, recognizing one’s own human worth, and living according to internal values; and an interpersonal dignity-dimension, experiencing being part of a caring and confirming communion. Knowledge of dignity preservation should be a crucial foundation for future dementia care.


Measuring hope among families impacted by cognitive impairment

Dementia July 2016 15: 596-608,


The current exploratory investigation aims to establish the reliability and validity of a hope measure, the Herth Hope Index, among families impacted by early cognitive impairment (N = 96). Exploratory factor analysis was used to examine the dimensionality of the measure. Bivariate analyses were used to examine construct validity. The sample had moderately high hope scores. A two-factor structure emerged from the factor analysis, explaining 51.44% of the variance. Both factors exhibited strong internal consistency (Cronbach’s alphas ranged from .83 to .86). Satisfaction with social support was positively associated with hope, supporting convergent validity. Neurocognitive status, illness insight, and depression were not associated with hope, indicating discriminant validity. Families impacted by cognitive impairment may maintain hope in the face of a potentially progressive illness, regardless of cognitive status. The Herth Hope Index can be utilized as a reliable and valid measure of hope by practitioners providing support to families impacted by cognitive impairment.


The emotional well-being of young people having a parent with younger onset dementia

Dementia July 2016 15: 609-628,


Younger onset dementia (YOD) not only affects the person with the diagnosis but the whole family, which often includes young people. A limited body of research on this group of young people indicates that they experience varying degrees of emotional trauma. We explored the lived experiences of young people having a parent with YOD from the perspective of the social model of disability. Data were available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 8 and 24 years. Thematic analysis identified four main themes: the emotional toll of caring, keeping the family together, grief and loss and psychological distress. The social model of disability theory provides a helpful framework for these families who experience significant emotional distress, demonstrating that the disability is often socially constructed by a society, which marginalizes and excludes them. A ‘whole family’ approach is proposed, where the needs of young people and their parents are respected and responded to age appropriately.


Measuring cultural justifications for caregiving in African American and White caregivers

Dementia July 2016 15: 629-645,


Objectives This report will elucidate the psychometric properties of the Cultural Justifications for Caregiving Scale (CJCS) and evaluate the differences in cultural values and demographic variables among a group of African American and White caregivers. The CJCS measures the cultural reasons for and expectations about providing care to an older relative.

Methods CJCS data were collected from 202 adults caring for an older relative with memory loss. The factor structure of the CJCS was analyzed for reliability and its correlation with other measures pertaining to the caregiving experience.

Results Exploratory factor analyses suggested two underlying factors relating to Duty and Reciprocity with high levels of reliability. The two factors showed different correlational patterns with other measures associated with the caregiving experience (CG demographics and well-being).

Discussion Findings provide further evidence that the CJCS is a reliable measure for use with African American and White caregivers. Moreover, cultural motivations to provide care may differ for ethnically diverse CGs based on religious backgrounds and beliefs about family expectations surrounding the care of loved ones. The application of the CJCS is also discussed.


Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers

Dementia July 2016 15: 646-662,


Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants’ experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD.


o    Richard Fleming,

o    Belinda Goodenough,

o    Lee-Fay Low,

o    Lynn Chenoweth,

o    and Henry Brodaty

The relationship between the quality of the built environment and the quality of life of people with dementia in residential care

Dementia July 2016 15: 663-680,


While there is considerable evidence on the impact of specific design features on problems associated with dementia, the link between the quality of the built environment and quality of life of people with dementia is largely unexplored. This study explored the environmental and personal characteristics that are associated with quality of life in people with dementia living in residential aged care. Data were obtained from 275 residents of 35 aged care homes and analysed using linear regression. The quality of the built environment was significantly associated with the quality of life of the resident measured by global self-report. Environmental ratings were not associated with proxy or detailed self-report ratings. Higher quality of life is associated with buildings that facilitate engagement with a variety of activities both inside and outside, are familiar, provide a variety of private and community spaces and the amenities and opportunities to take part in domestic activities.


The provision of assistive technology products and services for people with dementia in the United Kingdom

Dementia July 2016 15: 681-701,


In this review we explore the provision of assistive technology products and services currently available for people with dementia within the United Kingdom. A scoping review of assistive technology products and services currently available highlighted 171 products or product types and 331 services. In addition, we assimilated data on the amount and quality of information provided by assistive technology services alongside assistive technology costs. We identify a range of products available across three areas: assistive technology used ‘by’, ‘with’ and ‘on’ people with dementia. Assistive technology provision is dominated by ‘telecare’ provided by local authorities, with services being subject to major variations in pricing and information provision; few currently used available resources for assistive technology in dementia. We argue that greater attention should be paid to information provision about assistive technology services across an increasingly mixed economy of dementia care providers, including primary care, local authorities, private companies and local/national assistive technology resources.


Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services

Dementia July 2016 15: 702-720,


A case study comprised of formal interviews, formal observations and informal discussions investigated the motivations and experiences accessing dementia care health and social care services for a Muslim, Pakistani male with dementia. Motivations derived from ‘desperation’ and an inability to access support from family or religious community. Experiences of accessing services were mostly negative. Dementia services were ill-informed about how to support persons with young onset dementia, with pre-existing mental health conditions, from an ethnic minority. Education and training to remove barriers to all dementia care services is required for persons with dementia, their families and within dementia services and religious communities.


What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings

Dementia July 2016 15: 721-742,



This paper reviews recent literature on the experiences, attitudes and needs of caring for someone with dementia in Black and minority ethnic communities in the United Kingdom. Eight articles, which investigated carer experiences from Black and minority ethnic communities when caring for someone with dementia, were critically appraised. All eight studies used a qualitative methodology. The review identified several themes and issues across the qualitative studies. These included memory loss being viewed as a normal process of ageing, care being perceived as an extension of an existing responsibility, a poor understanding of what support services provide, the influence of migration, the impact of stigma and increased female responsibility. Methodological limitations of the research literature studies are also highlighted and clinically relevant implications are discussed, alongside recommendations for future research in this area.

Exploring staff perceptions on the role of physical environment in dementia care setting

Dementia July 2016 15: 743-755,


This study explored staff perceptions of the role of physical environment in dementia care facilities in affecting resident’s behaviors and staff care practice. We conducted focus groups with staff (n = 15) in two purposely selected care facilities in Vancouver, Canada. Focus group participants included nurses, care aides, recreation staff, administrative staff, and family. Data analysis revealed two themes: (a) a supportive physical environment contributes positively to both quality of staff care interaction and residents’ quality of life and (b) an unsupportive physical environment contributes negatively to residents’ quality of life and thereby makes the work of staff more challenging. The staff participants collectively viewed that comfort, familiarity, and an organized space were important therapeutic resources for supporting the well-being of residents. Certain behaviors of residents were influenced by poor environmental factors, including stimulation overload, safety risks, wayfinding challenge, and rushed care. This study demonstrates the complex interrelationships among the dementia care setting’s physical environment, staff experiences, and residents’ quality of life.


Transition from the spouse dementia caregiver role: A change for the better?

Dementia July 2016 15: 756-773,


One in 15 Australians over 65 experience dementia, and are commonly supported by spouses. Evidence demonstrates declining wellbeing for these caregivers as their role continues. There are indications of improvement once caregivers transition out of the role (recovery) but alternate suggestions that caregiving stress may be too damaging to be appeased (wear and tear). It seems plausible that reason for transition (care recipient’s move into residential care or death) will affect caregivers’ outcomes. A synthetic cohort method compared caregivers’ stress and wellbeing prior to, and one and two years post-transition. There was evidence of wear and tear for physical wellbeing but recovery for psychological wellbeing over time; with little difference based on reason for transition. Caregiver outcomes seem to be a function of the action rather than the reason for transition, but factors such as age must be considered when designing methods to support post-transition wellbeing.


Dementia and well-being: A conceptual framework based on Tom Kitwood’s model of needs

Dementia July 2016 15: 774-788,


The topic of well-being is becoming increasingly significant as a key outcome measure in dementia care. Previous work on personhood of individuals with dementia suggests that their subjective well-being can be described in terms of comfort, inclusion, identity, occupation and attachment. The study aimed to examine Tom Kitwood’s model of psychological needs and well-being in dementia based on the self-report of individuals with moderate or severe dementia and to differentiate and elaborate this model in the light of the empirical qualitative data. Nineteen inhabitants of a special long-term care unit were interviewed using a semi-structured interview. Data were analysed using content analysis. Thirty components within Kitwood’s model have been identified. A conceptual framework of subjective well-being in dementia was developed based on a theoretical background. The study was able to find indications that Kitwood’s model has empirical relevance. Nevertheless, it requires to be extended by the domain agency. Furthermore, the study suggests that individuals with dementia are important informants of their subjective well-being.


Trends in referred patient profiles in a memory clinic over 20 years

Dementia July 2016 15: 789-797,


The increasing numbers of people with dementia in the UK, as well as the associated costs have led to an effort to improve dementia services for the benefit of patients, caregivers and the taxpayer. These efforts have frequently emphasised the importance of early diagnosis in dementia care. We sought to test the hypotheses that the mean cognitive score of new referrals to a secondary care memory assessment service increased while mean age decreased over a period of 20 years. We retrospectively analysed the data of 1476 patients. The passage of time was associated with a significant increase in mean cognitive scores, while there was no association between time and age after controlling for other factors. We suggest that memory services need to be designed to meet the needs of less cognitively impaired patients. In practice this means that using simple screening tests is not sufficient in this group of patients


Use of photovoice with people with younger onset dementia

Dementia July 2016 15: 798-813,


Photography is a tool that has been used in research for many years. It allows people to create a record of an event, capture a complex phenomenon or to tell a story with pictures. Because it does not rely on language, it can be used with vulnerable populations who might not normally be included in research. This paper discusses the use of photography as one component of the evaluation strategy for a project that provided an opportunity for people with younger onset dementia to return to the workplace one day per week. Participants in the workplace project used photography to create a record of their experience of returning to the workplace. Based on the nature of the participant’s comments, photographs were grouped into four broad areas: impact of dementia, impact on family, the work experience and new friends. Issues related to the use of photography with people who have dementia are explored based on the experiences gained during this project.


Coping with cognitive impairment and dementia: Rural caregivers’ perspectives

Dementia July 2016 15: 814-831,


Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role.


Measuring the quality of life and well-being of people with dementia: A review of observational measures

Dementia July 2016 15: 832-857,


The dynamic nature of psychosocial interventions implies that trying to measure their effects using standardised clinical trial measures may not capture their full effects. Rich and valuable data during the sessions may be missed by using standard quality of life questionnaires. This paper compares observational measures in the context of recording the well-being of a person with dementia during and outside of a visual arts intervention. A literature search was conducted using systematic principles of searching, screening and retrieval to identify peer-reviewed English language evaluations of research projects using observational measures with people with dementia. Psychometric properties, strengths and weaknesses of 11 observational tools are reviewed in order to identify the most appropriate one for evaluating a visual art intervention for people with dementia. This review supports the Greater Cincinnati Chapter Well-Being Observation Tool as an appropriate measure to evaluate a visual art programme for people with dementia. The results of this review will help researchers plan projects to show the full range of effects for people with dementia for taking part in art sessions.


Care homes and the Mental Capacity Act 2005: Changes in understanding and practice over time

Dementia July 2016 15: 858-871,


The Mental Capacity Act 2005 provides the legal framework in England and Wales for the making of decisions in respect of people who have never had or have lost decision-making capacity. As part of a 5-year research program investigating the implementation and adoption of the Mental Capacity Act in dementia practice, we interviewed staff working in different care homes at two time points (32 staff at Time 1 in 2008 and 27 staff at Time 2 in 2012) in South East England. At baseline Time 1, daily practice seemed to resonate with Mental Capacity Act principles of respecting decisions and trying to act in a person’s best interests. This paper reports Time 2 findings. We found that few care home staff interviewed specifically reported finding the Mental Capacity Act helpful in crystallizing the legal basis of their work. Most continued to offer illustrations of day-to-day practice in which they paid attention to individual choices, took account of the wishes of residents’ families, and tried to act in residents’ best interests but referred major decisions to their seniors. This study highlights the potential of referring to specific day-to-day practice in care homes when offering training or scrutinizing practice in dementia care more generally so that the work is set in its legal as well as moral framework. Care home staff in this study reported that advanced planning and pre-specifying preferences were more common among new care home residents, especially those with dementia, indicating that greater understanding of these is required by staff.


Together but apart: Caring for a spouse with dementia resident in a care facility

Dementia July 2016 15: 872-890,



This longitudinal, exploratory study was designed to better understand the lived experience of spousal caregivers age 60 and older providing care to partners with Alzheimer’s disease and related dementias resident in a care facility. Twenty eight spousal caregivers were interviewed up to three times over a period of 2 years, and long-term care facility staff from four locations across British Columbia (BC), Canada participated in four focus groups. Thematic analysis of interview and focus group transcripts revealed a central, unifying theme ‘together but apart’. The results identify key targets for policy makers and service providers to support positive health and well-being outcomes for spousal caregivers providing care to their partners diagnosed with Alzheimer’s disease and related dementia and living in care facilities.


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