Person-centred dementia care: helping carers provide the best support possible

As I learn more about dementia I am awe-struck by the love and commitment that shines through the everyday challenges faced by both carers and people with dementia. It takes grace and courage to navigate the labyrinthine paths of dementia, with unexpected rays of warmth and sunshine, prolonged patches of shade and the odd storm.  The devastation that reverberates for the person with dementia, their family and their friends is not to be understated. Keeping the person, not the diagnosis, on the centre stage is diabolically difficult.

The collection we have for you today weaves a picture of the challenges, the triumphs and the love intertwined in person-centred dementia care.

Book: I’m Still Here, J. Zeisel

Im_Still_hereJohn Zeisel is an innovator in the nonpharmacological treatment of Alzheimer’s. He argues that to maintain a quality life, it is essential to recognise which parts of the brain remain intact throughout the course of the disease. He shows how it’s possible to connect with those living with Alzheimer’s by engaging with abilities that don’t diminish over time, such as understanding music, art, facial expressions, touch and the deep need we all have to care for others. In this book John Zeisel outlines his groundbreaking approach and demonstrates how we can offer people with dementia a better quality of life and a connection to others and the world.

Journal: The Journal of Dementia Care, Vol. 21, No. 4, July/August 2013

jdc214The Journal of Dementia Care is a multidisciplinary, bi-monthly journal aimed at all professionals working with people with dementia. It recognises that professional carers working with people with dementia have their own special demands which deserve a specialist publication.

Here’s the contents page from the latest edition, take a look and if you’re interested in any of the articles, check the bottom of the post.

Unlocking diagnosis, p. 12, Jeremy Hughes, chief executive of the Alzheimer’s Society, writes in response to Martin Brunet’s recent article in JDC, and argues that case finding will open the door to treatment and support. A response from Martin Brunet follows.

Creative spaces: a growing project, p. 13, Wendy Brewin enthuses about the many benefits arising from a project which began to develop a new garden in a care home – but grew into something so much more.

Developing a CST service in Norfolk, p. 15, Sarah Purdy and Gemma Ridel describe efforts to develop a consistent provision of Cognitive Stimulation Therapy programmes across one NHS Trust.

A bright future for innovative day support, p. 16, Angela Downing tells the inspiring story of the work involved in developing innovative day activities in Cornwall.

Tom’s Clubs: time together, p. 18, Kayleigh Orr, Julia Botsford and Kaye Efstathiou explain how this joint service for people with dementia and carers has developed.

Improving environments: new tools for the job, p. 20, Abigial Masterson, Sarah Waller and Maxine Grisley explain how a new set of tools to improve care environments has been developed, tested and put to good use.

Good prescribing in dementia: a brief guide, p. 23, Daniel Harwood explains how certain medications prescrived for older people are especially likely to cause troubling side effects for people with dementia.

Religious communities: what can they offer? p. 26, Peter Kevern and Mandy Walker report on the results of a small study which explored the role that the Anglican church community can play in supporting people with dementia.

Eden: how to bring meaning and freedom back into life, p. 29, Care staff tell Rachael Doeg what the Eden Alternative means to them, and UK co-ordinator Jane Burgess explains more.

Counselling in dementia: eliciting memories, p. 32, Mike Fox explains how counsellors can play an important role in helping people with dementia to remember their past.

Short reports, p. 34

  1. Attachment styles and attachment needs in people with dementia and family carers
  2. Predictive validity of the ACE-R and RBANs for the diagnosis of dementia

How do I access these articles?

Journal: The Australian Journal of Dementia Care, Vol 2 No 3, June/July 2013

AJDC_coverThe Australian Journal of Dementia Care is a multidisciplinary journal for all professional staff working with people with dementia, in hospitals, nursing and residential care homes, day units and the community. The journal is committed to improving the quality of care provided for people with dementia, by keeping readers abreast of news and views, research, developments, practice and training issues.

Again, I’ve included the contents page for your review.

Summit highlights needs of younger people with dementia, p. 9, Alzheimer’s Australia CEO Glenn Rees reports on the outcome of the Younger Onset Dementia Summit and what younger people identified as priority areas for action

Photo boards create picture of life, p. 10, An easy-to-make biographical tool to share stories of people with dementia, by Paula Bain

Alive to new possibilities, p.12, Tim Lloyd-Yeates from Alive! in the UK explains how to make best use of iPad technology when facilitating reminiscence sessions with people with dementia

Dementia as a roller-coaster, p.14, In the second of a series of books that have influenced his understanding of dementia, John Killick explains the impact of Christine Bryden’s book Who will I be when I die?

Sensory towels give mealtimes a lift, p.15, Jo Bozin explains how a simple award-winning aromatherapy program has improved the mealtime experience for residents and staff in one Melbourne facility

Strategies to improve the hospital journey, p.16, Geriatrician Clair Langford describes the complexities and challenges of providing hospital care for people with dementia and some of the strategies that can be used to reduce the length of hospital stays, improve the patient journey and, in some cases, avoid admission altogether

Bringing dementia design to acute hospital planning, p.20, Leanne Morton and Carol Callaghan report on the experience of bringing the principles of environmental design for people with dementia to the planning of an acute public hospital in NSW

Home alone with dementia, p.22, Living alone with dementia is not impossible, but carries with it the need for specialised services to support a potentially vulnerable but fiercely independent community. James Baldwin, Kylie Sait and Brendan Moore explain

‘Once you start writing, you remember more’, p.25, Liz Young, Jo Howard and Kate Keetch enthuse about ‘life writing’ work with people with dementia

The use of doll therapy to help improve well-being, p.25, Leah Bisiani and Jocelyn Angus discuss the role of doll therapy in working with people with dementia, and how it can be incorporated into a person’s present reality with dignity and respect

How to achieve effective, intuitive communication, p.31, Trevor Mumby outlines the ways in which we commonly miscommunicate, and shows effective communication methods for working with people with dementia

Sexualities and dementia: resources for professionals, p.34, Based on national and international literature and research by Dr Cindy Jones form Griffith University’s Centre for Health Practice Innovation, the Sexualities and Dementia – Education Resource for Health Professionals guide in the first of it’s kind in Australia.

The view from here: creating momentum for positive change, p.36, Kate Nayton, Elaine Fielding and Elizabeth Beattie describe how they developed a successful program to educate hospital staff about dementia care.

Research news section, p. 38, Includes articles on Montessori-based intervention for people with dementia. Italian-Australians’ experience of dementia caregiving. Carer beliefs about day centres and respite programs. Humour therapy found to reduce agitation in nursing homes. Psychological interventions for carers of people with dementia: a systematic review of quantitative and qualitative evidence.

How do I access these articles?

Book: Alzheimer’s: A Love Story, V. Ulman

I’m reading this book at the moment and it is an utterly truthful personal account of a daughter and sometimes-carer’s experience with Alzheimer’s.  When the last of Vivienne Ulman’s four children left home, she and her husband were poised to enjoy their freedom. Then, her mother’s Alzheimer’s intervened.

alzheimersLoveStoryIn Alzheimer’s: A Love Story, Ulman records with tender lyricism and searing honesty the progress of her mother’s Alzheimer’s, her own grief over the gradual loss of her beloved mother, and the way in which her parents’ enduring love for each other sustained them.

Into this she weaves an account of her family’s history, in particular her father’s rise from farm boy to confidant of prime ministers – achievements made possible by the loving strength of the woman by his side. In a reversal of roles, he amply returned this support.

This inspiring Australian story is a tale for the sandwich generation, squeezed on one side by concern for their children and on the other by anxiety about their parents. It is about illness, grief, and hardship, but it is also about love, determination, and joy.

Book: Connecting Through Music with People with Dementia: A Guide for Caregivers, R. Rio

ConnectingThruMusicFor people with dementia, the world can become a lonely and isolated place. Music has long been a vital instrument in transcending cognitive issues; bringing people together, and allowing a person to live in the moment. This user-friendly book demonstrates how even simple sounds and movements can engage people with dementia, promoting relaxation and enjoyment. All that’s needed to succeed is a love of music, and a desire to gain greater communication and more meaningful interaction with people with dementia. Even those who have lost many social and intellectual capabilities will still enjoy connecting with others through voice and rhythm, and be able to involve themselves in musical dialogue. Suitable for students or entry level professionals in music therapy, nursing, therapeutic recreation and care-related fields, Connecting Through Music with People with Dementia will also appeal to volunteers and family members caring for a person with dementia.

Website: Alzheimer’s Australia Vic Services

Alzheimer’s Australia Vic has a range of services which can be really useful for carers seeking for new ways to connect with a person with dementia.  As well as our National Dementia Helpline, we offer Counselling and Support, Telephone Outreach Programs, Support Groups, Living with Memory Loss Programs, Services for People with Younger Onset Dementia, Memory Lane Cafe’s, Multicultural Services, Education and Training for Families and Carers, Dementia Behavior Management Advisory Service. Check out the webpage for more information on each service.

Book: The 36-hour Day, N. L. Mace and P. V. Rabins

36hrdayThe 36-hour day is the definitive guide for people caring for someone with dementia. The new and updated edition of this best-selling book features thoroughly revised information on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

Remember Me, Mrs V?: Caring for my wife: her Alzheimer’s and others’ stories, T. Valenta

MrsVBigA moving memoir of a husband caring for his wife, Marie, who was diagnosed with Alzheimer’s disease at age 54. Tom describes his struggle of looking after his wife, arranging professional and voluntary in-home support and continuing to work. Ultimately he is forced to seek permanent residential care for Marie. There are thirteen cameos of other carers and how they dealt with a family member who was stricken with Alzheimer’s or other form of dementia. This book will be of great assistance to all men and women caring for a loved one.

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