Key messages for professionals, policy makers, commissioners and carers are highlighted in a report released today (1) of the First National Conference on Dementia and Sight Loss.
The report, by the Dementia and Sight Loss Interest Group (DaSLIG), a coalition of leading charities, (2) summarises the presentations and discussions delivered at the recent National Conference in London. Organised by DaSLIG and sponsored by ARUP, the conference brought together over 70 delegates – sight loss and dementia specialists as well as representatives from bodies including the Department of Health, NHS and Social Care Institute for Excellence.
“This conference was a milestone in the bid to improve the lives of people living with both dementia and sight loss,” said Sarah Buchanan, Research and Development Manager, Thomas Pocklington Trust. “It was the first major debate on this issue and it delivered crucial information and practical solutions for improving care. The report should be essential reading for all those involved in the care and support of people with dementia.”
Of the estimated 750,000 people in the UK living with dementia, at least 100,000 will also have serious sight loss yet, in 2010, a review of existing dementia policy, practice and literature, summarised for the conference by Dr. Declan McKeefry (3), (Bradford University School of Optometry and Vision Science), concluded that all three displayed a “fundamental lack of sensitivity to sight loss.”
He highlighted three main types of sight loss associated with dementia. A specific eye condition might occur at the same time as dementia; some forms of dementia affect vision, including perception of colour, depth and detail; and, thirdly, normal ageing of the eyes plays an important role since most people with dementia are over the age of 75.
Despite this, his research showed that few people with dementia appear to have access to regular eye tests.
“Ocular health screening is important in people with dementia, yet there’s a reticence to refer them,” he said.
At the conference, Fazilet Hadi, Group Director Inclusive Society, RNIB, spelled out the realities of living with dementia and sight loss. The emotional impact on people’s identity, confidence and self worth are underestimated and a lot of people are not getting the services they need.
“Having both dementia and sight loss is qualitatively different than having one or the other. But when dementia is the main condition sight loss can be forgotten,” she said.
Dr. Graham Stokes, Director of Dementia Care for BUPA, had seen many cases of dementia related sight loss. He called it “not seeing with true knowledge”. In a moving account he described a man whose dementia and sight loss led to terror at his own reflection. Too often carers were insensitive to this kind of fear and alarm. He classified this as “malign care” and urged carers to “move beyond quality of care to quality of life.” He listed practical examples for improving care in care homes. For example: how to deliver “high intensity engagement” to people with dementia. Even 90 seconds of interaction can give long-lasting feelings of wellbeing:
“The positive feeling exists far longer than the memory of the interaction,” he said. “Carers, you do have time to give people one-to-one attention.”
The National Dementia Strategy was setting a pathway for change, said Professor Sube Banerjee, leading specialist in dementia and co-leader on development of the national strategy.
“At the moment we spend a lot of money – late – on things that aren’t of good quality,” he said.
He cited “waiting too long and not focussing on prevention” as major failings. Late diagnosis was resulting in “harm, crisis and cost,” he said, with only 30% of people with dementia ever diagnosed. Now, early diagnosis and intervention “including the diagnosis of important co-morbidities such as sight loss” is a key aim of the National Dementia Strategy.
The huge cost of dementia care – £17 billion a year in the UK – would be a powerful driver of change:
“Doing dementia care well will cost less than doing it badly. Doing it well becomes the solution rather than the problem.”
Andrew Chidgey, Head of Policy and Public Affairs at the Alzheimer’s Society, said the scene was set for achieving change.
“There is a willingness of people to talk more freely about members of their family who have dementia. With this increased awareness and willingness to act there is an opportunity now to do far more on dementia linked to sight loss.”
Other speakers highlighted in the report include:
Professor David Croisdale-Appleby OBE (Skills for Care) on how qualifications available from January 2011 will improve the knowledge, understanding and status of social care staff.
Penny Redwood (freelance trainer) on how to recognise concurrent sight loss and dementia.
Pam Turpin, (ARUP) giving a room-by-room account of making a home dementia and sight loss friendly.
Source: Thomas Pocklington Trust