• Talking senses 30 January 2017 | View comments

  • 30th January 2017 | By David Jolley

    This week I met with Annie who is a researcher within the SENSE cog project which is being conducted with nearly £7m Euro European funding in Cyprus, France, Greece, Norway, Holland, Germany and the UK (Manchester]www.micra.manchester.ac.uk/research/projects-and-groups/sense-cog-project/

    http://cordis.europa.eu/project/rcn/200473_en.html

    We are used to seeing dementia existing along with other pathologies, often several at a time and each pathology contributing its own limitations and challenges but also magnifying difficulties by their interactions. Not being able to see, not being able to hear, or lacking full hearing and sight together is challenging and the more so when cognition begins to decline and a progressive dementia takes hold. This project is designed to discover more about the distribution of these multiple disadvantages across European countries, the special needs which arise from them and ways to help.

    We meet individuals who have been deaf for many years or registered blind for most of their lives. They and their families are likely to belong to groups which know about the difficulties and uniqueness of life lacking a dimension of perception and the communication associated with it. This may be strength which will sustain them.

    More commonly, loss of hearing or loss of sight comes with advancing years so that neither the individual nor their family are used to it. Never the less such losses are so common in late life that their coming may not be entirely a surprise.

    Loss of cognition undermines competence and confidence. This is magnified by the removal of another limb which might provide compensatory reassurance. So it is that these combination losses release symptoms of anxiety, depression and sensitivity, even paranoia. Getting close to reduce the destructive arousal is key to all we try to do.

    Work with families and with others who are known and trusted and can speak the language is the trusted plank of successful interventions.    

    The study protocol talks of screening. This suggests we should be looking for instances of these comorbidities ahead of their presentation to routine services. I am not sure there will be great enthusiasm for this. Iliffe and Manthorpe’s series of articles in the Journal of Dementia Care has raised the question whether ‘screening’ for dementia is a good use of resources. Indeed Alistair Burns would agree with them but is in favour of enhanced case finding. That seems to be a wise position. It is one I am comfortable with and would be right for the comorbidity exercise.

    There is much emphasis too, in the outline of the project, on a search for adapted tools to facilitate assessments, ‘the development of a composite e-screen for sensory, cognitive and mental functioning’ and ‘a clinical trial of a newly developed ‘sensory support’ intervention’. I am not quite sure what any of that will look like, so there is much to be learned by dinosaurs like me.

    In my experience the most powerful tool in understanding and diagnosis is a competent history taken from the patient and from others. This, combined with the use of established short measures of cognition, interpreted to take account sensory difficulties, and supplemented where indicated by additional investigations, will give answers. It also serves to establish a relationship between the clinician and the patient and family, and sets the scene for realistic interventions and plans for the future.

    We talked about the similarities and differences between life changed by a sensory deficit such as blindness and life changing with dementia. John Hull’s ‘Touching the Rock’ is my source for knowing about blindness from the inside. I do not have a similar resource for hearing loss from the inside, but will be grateful for any pointers. Robert Davis’s ‘My Journey into Alzheimer’s Disease’ remains the written account which I share with others and which is closest to my own perceptions after fifty years of living alongside the condition. Tony Husband’s ‘Take Care Son’ and the film ‘Iris’ are moving and informative and also come close.

    Best help for individuals and families experiencing the multidimensional challenges of cognitive loss and sensory deficits, almost certainly complicated further by other concurrent pathologies, will come from the application of best practice by specialist services translated and provided within primary care. Primary care because this is where the individual and family are known and where all the components and changes will be understood, interpreted and life allowed to continue with most natural support and least restrictions. Which brings us back, as often, to the Gnosall model www.gnosallsurgery.co.uk/clinics-and-services.aspx?t=5

    So we look forward to learning more from this ambitious study of an important phenomenon.

     

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