• Read all about it 22 February 2016 | View comments

  • 22nd February 2016 | By David Jolley

    February 17th was a red letter day for Dementia Pathfinders with the publication of Pippa Kelly’s article on page 38 of Society in the Guardian. It tells a positive tale of learning and training to improve the lives of people who develop dementia when they are young.

    The full report of Pathfinder’s work which lies behind this is an impressive review which considers the experiences and needs of families and individuals from onset, through life with the condition, to dying, death and beyond http://www.youngdementiauk.org/sites/default/files/approaching_an_unthinkable_future_lr.pdf

    There is no doubt that individuals who develop dementia in their 50s or even earlier, have very special needs and require bespoke responses from those providing care and therapy. These are outlined and considered in some detail. It is a great thing that the work of Pathfinders has been showcased in this way and encouragement given that young people with dementia can expect better care and wider respect and recognition.

    The principles of care and understanding championed here are applicable across the age bands, gender, faith and social class, with or without multiple co-morbidities. I hope these principles can be applied in local groups drawing together families of people with dementia and similar conditions all around the country.

    Straying around the page, we were drawn to the stresses experience by professionals in their efforts to help people – stresses intrinsic to work with people who are unwell and disadvantaged, but made more difficult by lack of resources and service/management structures that do not always fit the needs and lack flexibility. Coaching, mentoring, supervision, knowledge transfer – all these are mentioned as approaches to the healing of the healers.

    Candace Imison holds out for the positive advantages which might come from digitalised data/the paperless world.

    I am not convinced. I see colleagues required to spend hours ‘feeding the beast’ of computerised records, studying on line to feed another beast of appraisal (sitting alone with a computer terminal). Who cares or who knows that what is really important is person to person contact: patient/carer/profession and other professionals. Nothing is as effective as continuity of a therapeutic or collaborative relationship between individuals who know each other – You cannot produce this by cobbling together bites of information across the ether.

    The reverse page (37): Dawn Foster gives the lie to the headlines of the week that more people are in work than for a decade: 47,728 households were removed from their homes by bailiffs during 2015 – the highest number since records began in 2000.

    Peter Beresford writes that remodelling of services to make them relevant and affordable will require involvement of people who need the services. Well fancy that! A conclusion which chimes sweetly with Pathfinders and Pippa Kelly’s article.

    But page 37 is dominated by an etching of ‘The Grim Reaper’: Stewart Dakers, who is older than I am, reflects on the impotent anger with which faithless devotees of modern culture address death. Surely this is not allowed! There must be a mistake!

    There is no mistake. This is life.

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