What’s in a book?
I have just read: ‘What you really want to know about life with dementia’. It is a recent publication from Dementia UK, authored/edited by Karen Harrison Denning, Hilda Hayo and Christine Reddall, and it is quite wonderful.
The real authors are the 19 family and friends who have shared brief stories of dementia as experienced by people they know, love and have cared for. They are drawn from contacts and networks known to the editors: so this is not a representative population sample, but one assembled to illustrate the range, nature and depths of experience which is seen across the spectrum of living with dementia. It works well and is an interesting alternative to a text-book.
Every story receives a fairly extensive commentary from one or more experts in the field, and one or more Admiral Nurses speaks to the issues and practicalities which they might bring to the situations described.
I can see this becoming a resource for clinicians and professional carers. It may be useful for those who are responsible for allocating funds to services. This is certainly a hope expressed by Keith Oliver in his foreword – but the aim should be to have an influence across the board, rather than restricted to Admiral Nursing itself.
For ordinary people, living with dementia or caring for someone with dementia, or simply interested and wanting to be informed?
There is rich material, marvellous and erudite observations, especially from Julian Hughes, John Keady, Jill Manthorpe, Rachel Thompson and Graham Stokes. To have these words to hand, to be returned to and contemplated over and again, will be a comfort and source of strength. But first, people will search the stories for themes and details which they recognise from their own journeys. These will probably span a number of the personal accounts – and maybe none will match exactly what you are looking for. That is OK – You put together your own collage, illuminated by the words of experience and wisdom.
A book has life – but in dealing with the changing scenes of days and months and years with dementia, people gain from journeying with others - other– people with dementia, other carers, other experts, others who we know for reasons not linked to this.
The presence of everyday friends to see us through and accept what comes, even though it is unexpected, even though it is not fair or reasonable – This will be the way