New research released today reveals that specialists dealing with dementia are failing to recognise the increased confusion and distress caused by sight loss. Attending to sensory needs reduces disorientation and helplessness and makes disruptive behaviour less likely. Yet, despite this, the role of sight loss in dementia is being neglected.
Mental health professionals are failing to recognise the importance of sight loss in dementia, says the research funded by the sight-loss charity, Thomas Pocklington Trust (1). While other specialist care and support professionals feel ill-equipped to deal with the two problems combined. As a result, the stress and exhaustion caused to informal carers, mainly family members, is of an “extreme intensity.”
“The combination of dementia and sight loss creates a profound sense of disorientation and provokes a great deal of distress, yet the role of sight loss in dementia is not being addressed,” says Joanna Murray, an author of the report.
The investigation (2), by researchers at the Institute of Psychiatry, King’s College London, is the first to look at the experience of the two conditions combined. Fifty-two in-depth interviews were conducted with people with dementia and sight loss, family carers and care professionals. Both mental health and sensory-loss professionals identified shortcomings that prevented those with dementia and sight loss from getting the care they need.
- Mental health professionals acknowledged that staff in dementia services might lack the time and expertise to provide the response that sight loss demands.
- Sight loss professionals had tried but failed to find training that would help them deal with dementia. Much of the difficulty, they said, stemmed from the false expectation that sight loss could be dealt with in isolation.
- Dementia care staff said they worked holistically to meet multiple needs - but few felt that visual impairment would have a significant effect on the way they worked with clients.
- Sensory rehabilitation professionals said the co-existence of sight loss and dementia was common and growing, yet they have no guidelines for working with people with dementia. They criticised GPs, ophthalmologists, and mental health professionals for failing to share information about dementia, which could put clients at risk.
- In general there was little evidence of communication between mental health and sensory impairment teams. Assessments were undertaken independently and information was rarely shared.
Interviews with people with dementia and sight loss revealed a vicious circle where sight loss – which often causes disorientation, impaired learning, depression and social isolation – increases the confusion associated with dementia and, if left untreated, can lead to distress and aggressive behaviour. People with sight loss lacked visual clues to anchor them to the here and now – getting the time from a clock, the date from a newspaper, for example. They were highly vulnerable to loneliness, felt a severe loss of identity, and having experienced the loss of their sight found it difficult to cope with the onset of dementia.
“The implications of memory loss and sight loss are difficult to disentangle but this research shows their combined effects can be severe. There is a vital need not only to explore the experiences and needs of people who have both conditions, but to ensure that care professionals have the training and understanding to provide the best quality care,” says Joanna Murray.
The research calls for a series of changes to address the problem including: greater coordination between mental health and sensory impairment teams, together with joint training; extra respite resources such as more one-to-one support; more information to be shared by vision rehabilitation workers, mental health professionals and GPs and more day centre services capable of meeting both sight-related and dementia-related needs.
Editor’s Notes:
1. Thomas Pocklington Trust is a charity which aims to improve the quality of life of people with sight loss. It is a leading provider of housing, care and support services for people with sight loss in the UK, and is a major research and development body.
2. Thomas Pocklington Trust Occasional Paper No 16, “The experiences and needs of people with dementia and serious visual impairment: a qualitative study” by Vanessa Lawrence, Joanna Murray, Dr. Dominic ffytche and Professor Sube Banerjee, King’s College London.
3. Dementia is one of the most common and serious disorders of later life, affecting 5% of people over 65. More than 12% of people over 75 have sight loss. Evidence suggests higher rates of sight loss among older people with dementia, yet there is a striking absence of formal research within this population.
4. Detection and diagnosis of sight loss is more difficult in the presence of dementia. Conversely, visual impairment may mask the early clinical signs of cognitive impairment such as misplacing things and getting lost. The combination of both complicates the management of the situation but low vision rehabilitation services have no guidelines on how best to work with people who have dementia.
