Older Books

`The book is easy to read and written in a format suitable for those new to this area of work...
I would consider it a useful book for music therapy students and those working in residential
and day care settings with its range of examples, checklists and guidance.`

Social Care and Neurodisabilitythe book provides compelling arguments as to why and how carers might use music-making to improve the day-to-day lives of those for whom they are caring...The book maps out a means of enriching the live s of people with dementia and those of their carers and is recommended for carers
who have avoided using music because they do not feel qualified.'
Australian Journal of Ageing

The world can be isolated and lonely for people with dementia, and music has become key in bringing people togethe.
Robin Rio's CONNECTING THROUGH MUSIC WITH PEOPLE WITH DEMENTIA: A GUIDE FOR CAREGIVERS shows
how simple sounds and movement can engage such people, promote relaxation and enjoyment, and break down barriers.

After reviewing these connections, caregivers are given a series of music exercises to follow.
A fine pick for any library covering dementia care.'
The Midwest Book Review

Rio is a great enthusiast and shows how we can and do connect through music of all sorts - rhythms and movements, sounds and songs. Encourage your staff to sing with the residents; we've all got music in us.'
Standards for Practice

This comprehensive book is easy to read and guides an inexperienced reader through the process of introducing
and using music with people with dementia.'
COTSS PLD Newsletter

Early Psychosocial Interventions in Dementia: Evidence-Based Practice
Edited by Esme Moniz-Cook and Jill Manthorpe

This is an outstanding book and becomes available at just the right time. The National Dementia Strategy has encouraged extra interest in dementia and particularly in encouraging people to come forward for assessment with the expectation that they will be helped.

Currently available medicines have a little to offer - but only a little - The question is whether people skills and service strategies are of value to individuals and their families. The 16 chapters, with 36 authors from ten European countries, provide mature and well balanced, evidenced answers. They are illustrated with case stories.

It is important to tailor therapies and supportive measures to the particular needs of individuals and families - for some there is little need for much from the professional services, for others their experience and difficulties can be much improved by timely and appropriate interventions: timely is not always ‘as early as possible' - interventions too soon may perversely induce lower mood. Wow - this is very grown up - and grounded in international experience, laced with the discipline of evaluative research.

There is sensible consideration of the sharing of diagnosis - It is important to be sure what is being conveyed and why - labelling per se has nothing to commend it. Explanations - and iterative updating - are more helpful. There are chapters outlining the theory, practice and outcomes of rehabilitation, stimulation, computerised methods, psychotherapy, art therapy and reminiscence when working with individuals and groups to support and improve cognition.

Approaches to support for carers as individuals or in groups by information sharing and emotional strengthening are described - It's no use just running a course and standing back - people need you to be there always - being available and flexible - soaking up some of the sadness and frustration, celebrating the fun and the triumphs. From this presence, more is learned and can be reflected to others. We all gain and progress this way.

This is a wonderful book and available at just the right time. Every Memory Service should have several copies to use as a framework reminding us what can be done - and what must be done. Teams can use them for shared study and planning. We can then add our own wisdom to the existing chapters and perhaps write a few more through the exercise of reflective audit and operational research.

Commissioners and managers of services should make themselves aware of what can be done and ensure that their community is properly provided for in the breadth of approach and sufficiency of staff, facilities and skills to meet predictable needs.

Reviewed by Professor David Jolley
Dementia UK West Midlands

Enriched Care Planning for People with Dementia
by Hazel May, Paul Edwards and Dawn Brooker

This is perhaps the first publication with Dawn Brooker in her new role as Director of the Association for Dementia Studies at Worcester University - an exciting venture in which we wish her every success. The work comes from her time with the Bradford Dementia Group and carries a recommendation in the foreword from Murna Downs who edits the Good Practice Guide Series.

I felt less than comfortable in digesting ‘in the field' three times over within the first seven lines of the introduction, but this proved to be a false concern - the style opens up and covers a good deal of ground with elegance and enthusiasm. The opening chapters review something of the background to current approaches to therapy and care of people with dementia, moving quickly into the practicalities of preparing profiles of individuals so that activities can be constructed from a well-informed baseline.

Templates for Life Story, Life Style and Future Wishes, Personality, Health, Capacity for Doing, Cognitive ability and Life at the Moment are described and explored. They are supported by example sheets of how materials can be collected for each dimension individually and collated in summary form to aid planning and monitoring of progress.
Chapter nine is brief, but outlines how the materials can be used to produce an Enriched Care Plan and refers to the acronym principles of communication: SMART (Specific, Meaningful, Agreed, Realistic, Time-based) and philosophy: VIPS (Valuing, Individualised, Perspectives, Social).

The whole ties things together very neatly and the book will be treasured by those who use it. Let us hope that this will be many, for these pages will help people turn good intentions into good practices.For the most part, this and similar texts are aimed at helping improve care of people who are living in groups within residential settings. Yet the message, whilst quite properly addressing therapy for individuals as individuals, does little to consider how the resulting plans can be woven together to achieve a good and sustained programme for the changing group and within the constraints of realistic funding and staffing. Perhaps this is dealt with elsewhere in the series.

Current insights have been developed out of the work of previous generations of dedicated workers in association with families and patients; for this we are grateful.
More will be learned in future years and we shall see statements of the art 2009 as important steps on the climb toward enlightened care.

Reviewed by Professor David Jolley
Dementia UK West Midlands

Person-Centred Counselling for People with Dementia
by Danuta Lipinska

Danuta Lipinska is a nurse who has become a counsellor and has experience of practice with older people and people with dementia in the USA and UK. Her work spans residential care and support of people still living at home.
She presents a short, deeply personal, account of the understandings she has gained together with practical hints to encourage and support others who seek to help people with dementia through professional one-to-one relationships.

There are helpful references to the few leaders in the field: Brian Thorpe (who provides a foreword), John Killick (who offers an appreciation), Carl Rogers and Tom Kitson. But perhaps the most apposite quotation comes from Stephen Post (1):

‘(I) reject the notion: ‘I think therefore I am' and replace it with the less arrogant notion: ‘I feel and relate, and therefore I am.'

For this informs the whole of Danuta's approach. Hers is a closer, deeper encounter with each individual than that most commonly associated with Kitwood's Person-Centred algorithm, which is strangely most applied to persons en masse in residential settings. She rehearses a dismissal of measurement, but reflects that many individuals and their carers report benefits from six, six-weekly one hour sessions.

Referrals inevitably come from others - often other professionals - but she is at pains to avoid becoming overly informed (prejudiced) by their communication to her, requiring primarily a vision of ‘Self' (sic throughout) from the person with dementia. I am not sure how much feedback is provided to the referrer, though Danuta acknowledges their importance in living alongside the individual and their own needs for understanding and support. There is particular reference (p 72) to Admiral Nurses.

She ascribes the counsellor role to ‘stand in the gaps' which the individual with dementia encounters - helping their exploration and perhaps achieving explanation and resolution out of bewilderment. A nice analogy and a cogent argument for providing a therapeutic, detached (affect neutral), professional empathy to complement, and hopefully relieve, the 36 hour day intensity of relating with close family members.

Chapter 6 spells out a systematic multi-dimensional approach to describing an individual. Within this she swipes (unreasonably I'd say) at mental health services, but gives welcome recognition to the struggles for survivorship from good lives as well as from hard lives and (perhaps unknowingly) contributes to the discussion of the virtue (or not) of ‘diagnosis':
‘the message seems to be that all the damage will happen in one fell swoop, like switching off a light, and now suddenly the person and all they have been and are and might be, no longer exists.'

Chapter 7 includes illustrations that confirm that the person continues to exist spiritually, emotionally and indeed cognitively even into the depths of dementia and will work with their counsellor to achieve not hope (which is a capricious desire) but peace and well-being.

Consideration of Kitwood's centrality of love together with spirituality, transcendence and other mystical and faith-based concepts dominate the final chapter.

This is a worthwhile read and certainly succeeds in making the point that people with dementia are people and should be respected as such - This for their benefit and ours. There may be a role for specialist personal counsellors within mainstream services. In addition the counselling approach and techniques described here can and should be adopted by professionals as a core component of their therapeutic armoury.

Reviewed by Professor David Jolley
Dementia UK West Midlands

(1) Post S. (2006) Respectare. Chapter 14 (p223-234) in J.C.Hughes et al (eds) Dementia: mind, meaning and the person. Oxford University Press

Rights, Risks and Restraint-free Care of Older People
edited by Rhidian Hughes

I am afraid I have made heavy weather of this book. It has taken me 3 months rather than 3 weeks to get through its seventeen chapters. Part of this has been because of distractions to other things - but there has not been a strong draw to follow chapter to chapter. That is not to say it is a bad book. It certainly has much to commend it but it comes to me as rather earnest - approaching righteous - in repeating its message in support of freedom.

The thirty contributors come from the UK (11), USA (9), Germany, Norway, Australia, Canada, Belgium and Ireland. Their professional backgrounds include nursing (13) and Medicine (4), psychology, pharmacy, academia and management. Thus it provides an international and multi-disciplinary review and resource.
Contributions are organised helpfully into three unequal sections:
·

Patterns and trends in restraint: addresses physical and medicinal restraints and the issue of covert use of chemicals.

Health and Social aspects: provides a informative accounts of the practicalities and impact of changes toward reduced use of restraint in US services. There is a very specific chapter on the use of mittens and similar devices when patients in receipt of enteral feeding are at risk of pulling the tubes away.
Shena Wylie's chapter on drugs in Care Homes will be widely referred to in support of the recent paper requiring a reduction in the use of antipsychotic medicines in English Care Homes www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303.

Jim Ellis's account of the potential of companionship as a therapeutic alternative provides a refreshing and positive pointer to what can be offered instead of the drugs. Finally there are explorations of responsibilities within the frameworks of Health and Safety and Human Rights.

Many practitioners will turn to these for guidance as they seek to remain safe themselves as they attempt to retain humanity within their caring whilst ever aware of potentially critical scrutiny and legal challenge.

Issues and innovations: is a pick-and-mix within which ethics, de-escalation techniques, approaches to wander-walking and falls provide a selection of flavours. How do you help carers, professionals and lay, to modify their behaviours toward freedom? There are accounts of educational and training programmes and pointers to the evidence base which may be persuasive and that lovely quote: 'Don't just do something, stand there'

The 'Afterword' from Barbara Pointon is wise and brief, cutting directly to the crux and providing insights via humble self criticisms which stand strong and impressive in their own right (or write as John Lennon once said). She is a compass point in need of no further reference. A useful resource for the bench library.

Reviewed by Professor David Jolley
Dementia UK West Midlands

Touching the Rock: An experience of blindness
by John M. Hull

This is not a new book, nor is it about dementia. I am offering comments on it because it has only recently become known to me and I feel it has messages which are helpful and relevant to us in our efforts to understand the experience of the disablements produced by dementia and how best to help a person thus altered and impaired.

John Hull writes as someone who was born with normal vision and developed sight difficulties and eventually blindness as a young adult. Professionally he became a successful academic theologian.
In many ways his account of sinking into blindness and living with blindness bring back to me Robert Davis' account of his ‘Journey into Alzheimer's Disease'.

From the introduction he shares some of the questions which will occupy him.
How will the children discover his blindness and what will they make of it?
What will happen to dreams?

Dreams emerge as a great comfort and they are terribly important to him.
He asserts that blind people differ - one from another - just as much as sighted people do.
So there are learning points already in a quest for understanding life with an incompletely functioning nervous system, be this from single-channel sensory loss or the multi-axial impairment of dementia.

He explains how loss of the dimension of seeing reduces the span of his comprehension of the world around him. Wind has taken the place of the sun (p16) and thunder provides a roof over all. That white stick is not a coloured walking support but an antenna: reaching, feeling and touching for cues to the layout (p 14-15). Rain is a beautiful gift, filling space with meaningful sounds (p 29- and 131).

Wind provides clues of shapes and relationships (p117-118). Touch brings the most intimate of understanding: ‘the art of gazing with my hands' (p 174). Tastes and scents can also provide pleasure, though he complains that without the added stimulation of visual excitement and arousal, even food and sexual experiences are dulled.
As time passes and accommodation to blindness matures, he muses on the prospect that it might even be conceived a gift - a terrible gift (2005-207 and 215).

Redefined - ‘I am not blind (a negative construct relating to the normality of having sight) but rather ‘a whole body seer': A quite different and entirely positive representation.

Memory is truncated by loss of vision: faces of people known before its coming are preserved and appear in dreams; the faces of new acquaintances remain blanks in dreams and imagination.
The very concept of comprehension is linked by word-usage to sight: ‘I see' means ‘I understand'.
Time and space are reduced: activities cannot be rushed but need to be planned and conducted systematically. The permanence of space beyond reach is lost for it is evidenced only by sounds reflected and needing actions of one sort and another.‘When there is rest, everything else passes out of existence. To do is to be.' (p 81-82)

The cumulative loss of control associated with what he terms ‘inescapable blindness' is most obvious in the social demands of personal and public life. Kind and sympathetic people may treat the blind as children (105) or to be talked about rather than engaged with (112). Even a meal with his elder daughter becomes a nightmare as the waiter negotiates the menu through her - and they all three comply (167-168) to his inner fury.
Lost is the confidence of a shared world (131), even a sure grasp of what the self looks like (144):
‘Separated from my own shadow as in the cartoons'

Approaches, which give coordinates, are good; people asking questions or leaving uncertainties are annoying, and humiliating (158 and 169). ‘Hold me and tell me who you are!' said Robert Davis

Hull's discussion of walking is illuminating and stands careful comparison with that of Davis in dementia. For John Hull it is a source of pleasure and pride to walk and navigate his self, using whole-body seeing strategies. When in difficulty he wants advice as to where he is first - and from that he can construct his own map and make progress. Sighted people tend to want to relate to where you are going - for the blind person that's assuming too much. I need to know where I am before I can think of the next move (145).

Similarly well-intentioned attempts to help by warning of hazards - or a number of people offering alternative suggestions at the same time - are catastrophic and counterproductive.
Walking with someone is a pleasure - but take my arm and I am immediately disabled and dependent upon you from hereon - a faster journey, enlivened by discussion, but not one where I, as a blind person, can take responsibility for myself.
‘
Walk with me' said Robert Davis when advising on how to help him overcome frustration and confusion. ‘Walk with me rather than try to help me with words.'
For John Hull too, walking and walking with people is blessed. But for him walking over and again in a familiar place is what brings peace. Novelty so beloved of the sighted is a headache without the assurance of personal vision.

The disciplined world of professional life and the organisation of his study provided calm and relief from the unregulated demands of social and family life. Parties and celebrations are difficult to join: Too much noise, too many unknowns, and so much awareness of being different.

On these occasions he might retreat to his study - or to bed. He describes the toxic effects of the overstimulation and the responses of his brain and body, which simply cut out, shut down and escape to sleep and dreams. For dreams remain visual, coloured and can contain a vigour and vitality beyond his waking competence. He wakes refreshed in spirit

Correcting some misunderstandings:
He rails at the pity expressed that he cannot experience the (visual) prettiness of a church - For he has taken pleasure (beyond others) in the beauty of its bells (194).

And the metaphor of pathways:
‘My blindness is the result of thousands of tiny accidental happenings. These were not a ‘path' and I was not being led along it toward blindness. Looking back I can see the chain of events, and it looks a bit like a path, but any trackless waste is laid out with paths once it has been crossed. When you look ahead there is no path but only an almost infinite number of possibilities.'He talks of providence and coins the term ‘retrovidence' (paths conceived in retrospect).

Like Robert Davis who journeyed into Alzheimer's disease, John Hull speaks of his as a journey into blindness:
‘This is why I go on journeying, not through, but into.' (Final line - 218)

There is so much more here. It is hard to do justice to such a testament.
Oliver Sachs in his introduction puts it thus: ‘it has no clear beginning, middle or end; it lacks literary pretension; it eschews the narrative form itself - and is to my mind, a masterpiece.'

Aye to that: I am glad to have found it albeit belatedly and grateful for the pointers it provides to understanding and helping with other journeys.

Reference: Robert Davis (1989) My journey into Alzheimer's Disease. Tyndale House publishers. Illinois

Reviewed by Professor David Jolley
Dementia UK West Midlands

Understanding Alzheimer's Disease and Other Dementias
by Dr. Nori Graham and Dr. James Warner

Published in conjunction with The British Medical Association
This pocket-sized book is one of a series of medical books and can be bought from local pharmacies or purchased online at www.familydoctor.co.uk for £4.75.

Chapters in the book include What is dementia, Symptoms of dementia and Treatments for dementia. The descriptions are very informative, easy to read and understand, and include images, which help to make it very clear.

There are further chapters on getting help, tips for people with dementia and for their carers, future prospects and questions and answers. There is a lot of very helpful information, although I found the chapter on Getting Help rather optimistic. The information on benefits available were not quite accurate, for instance a carer cannot claim attendance allowance unless they have needs themselves, it is the person with dementia who may be entitled to attendance allowance.

I feel readers will find the chapter on Future Prospects and the description of how the brain works fascinating. There is also a comprehensive chapter on Useful Information, which includes organisations such as Dementia UK.

I would recommend this book as it is concise and contains a great deal of information.

Madeline Armstrong
Admiral Nurse
Dementia UK

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Older Books

Information and Advice

Books released in 2009 or before

Book Reviews

Connecting through Music with People with Dementia by Robin Rio

Early Psychosocial Interventions in Dementia: Evidence-Based PracticeEdited by Esme Moniz-Cook and Jill Manthorpe

Enriched Care Planning for People with Dementiaby Hazel May, Paul Edwards and Dawn Brooker

Person-Centred Counselling for People with Dementiaby Danuta Lipinska

Rights, Risks and Restraint-free Care of Older Peopleedited by Rhidian Hughes

Touching the Rock: An experience of blindnessby John M. Hull

Understanding Alzheimer's Disease and Other Dementiasby Dr. Nori Graham and Dr. James Warner

Connecting through Music with People with Dementia
by Robin Rio

Early Psychosocial Interventions in Dementia: Evidence-Based Practice
Edited by Esme Moniz-Cook and Jill Manthorpe

Enriched Care Planning for People with Dementia
by Hazel May, Paul Edwards and Dawn Brooker

Person-Centred Counselling for People with Dementia
by Danuta Lipinska

Rights, Risks and Restraint-free Care of Older People
edited by Rhidian Hughes

Touching the Rock: An experience of blindness
by John M. Hull

Understanding Alzheimer's Disease and Other Dementias
by Dr. Nori Graham and Dr. James Warner