This is an unusual and special book. It was written by an Anglican Priest for whom understanding and communicating about dementia has become a passion, and it shows. Dementia is for many people an unattractive subject difficult to become enthusiastic about, but the author makes a compelling argument for greater understanding, compassion, and less therapeutic nihilism in our approach to this common and devastating illness.
The book is aimed at carers and sufferers who are brave enough to seek to know more about the progression of the illness and options for care but, in passing, the author makes the point that GPs often display poor understanding of these issues and inconsistent responses to them.
The book is especially recommended to ministers and lay workers from Christian congregations who are interested in the pastoral care of dementia sufferers, and support for their carers, especially if the sufferers are known and valued members of their fellowship. However, the author very skilfully discusses the different but overlapping concepts of spirituality and religiosity, and makes the vital point that a truly holistic approach to all care requires not only consideration of the physical, emotional and social contexts and domains - but also the spiritual - in every patient with any illness. This is especially important in mental illness where the sufferer often has major problems in finding or retaining a sense of identity and self-worth.
The first half of the book is an extremely comprehensive and well- researched account of the epidemiology and natural history of dementia, and its effect on carers. The exhaustive references and bibliography would dwarf many doctoral theses. Most importantly, he gives great prominence to the views of sufferers, who in the past were often thought incapable of contributing much of value once they began their slide into the abyss of cognitive impairment. On the contrary, he puts great value on their comments and insights, showing that even thought-disordered "rambling" may be a poetry which resonates with deep feelings desperate for expression. He includes some wonderful examples.
The second half of the book is concerned with advocacy for the dignity of PEOPLE with dementia, rather than people with DEMENTIA. He offers sensible and practical advice.
I think this book could be taken as a model for excellence in our approaches to other illnesses, where preservation of self-worth is critical. I am thinking particularly of depressive illness. Here at least the sufferer usually has a return ticket to reverse the journey into the dark pit. The dementia sufferer has a one-way ticket, and is already grieving for his lost persona and function. At least we can proclaim the value of his deeper being (or soul) which the author sees as being more accessible once the trappings of adult sophistication have been shed. People with dementia exhibiting child-like behaviour should nevertheless not be treated like children (other than to cherish and welcome them). Dignity is all.
I was touched by his recommendation of reading Psalm 139 to satisfy our need to know we are all uniquely known and loved. The book takes its title from another Psalm (137), where the exiles in Babylon need encouragement to sing their song of worship in a Strange Land, a metaphor for the alien world of many dementia sufferers.
Finally, he seems to imply that believers should be encouraged to cherish the memory of their loved-ones as they were before illness diminished them, whilst accepting present reality, and anticipating a glorious reunion with them, restored to wholeness and fullness, in the next life. And he writes:
Yes, there is the good news that they (dementia sufferers) are loved and accepted by God in ways that we may never understand nor be able to express. This love is not dependent upon their memory, upon their goodness, upon their moral rectitude or upon their believing or their unbelieving. It is a gift, sheer grace, and is wholly and utterly unconditional. It is a love that will never let them go and which will accompany them through the ravages of their illness and through the mystery of death. It is a love that has been there, often unrecognised, from the very beginning, and it will remain with them until the very end.
A difficult book, but well worth a little contemplation by doctors and their colleagues.