The vast majority of people with a dual sensory impairment are over 65. Yet even the professionals often don’t seem to be interested in them. Sarah Butler found out how the land lies when you’re over 65 and sensory impaired.

It’s a long walk to the day care centre, but Rose Arthur, in her eighties and with glaucoma and age-related hearing loss, makes her way there on foot. Rose is a determined woman, a keen scrabble player, who reads some of the paper every day, and is a lively conversationalist. But the centre is a lifeline for her. She lost two stones in weight before she came here, because she found it so hard to eat at home.

In the last few years Rose’s husband has died. Her vision and hearing deteriorated, and she has become much frailer. She has had to move into sheltered accommodation. Many friends have died, and others have moved away into care homes.

Rose’s experience of old age is not unusual. Even by 60, almost a quarter of people have both a visual and a hearing impairment. They may not all be classified as deafblind, and few would label themselves as such, but they are none the less the largest group of dual sensory impaired people in the UK by far.

With such a statistic, you might expect a serious level of provision for older dual impaired people. Not at all! Sensory services for older people exist only at a very basic level in most areas, and the non-specialists working with them know little or nothing about their needs. It’s a sad fact that few professionals realise how prevalent sight and hearing loss are in older people. Worse, many don’t even see the need for sensory services for older people,  unbelievably they still argue that since older people have so many other things wrong with them, there’s surely not much point in talking about their sight or hearing?

George

George attends the same day care centre as Rose. When he arrived staff realised that he had very poor vision, and were told that he was partially sighted as a result of a detached retina, and that nothing could be done. He needed a great deal of support, as his mobility was limited by his poor vision. Staff had to hold his hand when he wanted to write a cheque. His GP refused to refer him to the specialist.

Staff persisted with George’s GP on his behalf, and eventually persuaded him to refer George to the local hospital, with the result that George was prescribed glasses. With these new glasses, George has regained much of his mobility, and not only can he now write cheques unaided but he can also read.

Liz Duncan of Sense describes a recent visit to an ENT consultant with an older deafblind woman. The consultant appeared uninterested and did not introduce himself. He did not look up from the audiogram on his desk, so lip-reading was impossible Neither Liz nor her companion could make him understand that it was the combination of her hearing loss with glaucoma that now made it harder for her to hear. He refused to refer her for aids.

Now this might not be an unusual experience for a deafblind person of any age. But the difference is that this woman’s experience was predictable, simply because of her age.

What is special about sensory loss in older age?

People who lose their sight and hearing in older age have much in common with younger people. They too are frustrated by things like poor signage, blocked pavements, and thoughtless professionals. But some things are different.

A younger person who loses their sight or hearing is likely to remain otherwise fit and healthy. But an older person may well develop other impairments at the same time, heart disease, or arthritis, for example. The combined effects of their impairments may make it extremely hard for an older person to remain mobile and independent. For significant numbers of older people, losing their vision is the impairment that forces them to move into residential care.

The RNIB found that almost 20 per cent of visually impaired people over 75 hadn’t left heir home, even to go into the garden, in the previous week. Seven per cent had been completely housebound for a year. (Vale and Smyth, 2003)

While younger people may be able to make physical adaptations to their environment, and to invest in equipment to make their lives easier, far fewer older people have this option. Many live in poor housing, or in care homes which are unlikely to be designed with sensory impairment in mind, despite catering for precisely the part of the population most likely to be sensory impaired. Much of life in a care home, or in a day care centre, is communal, but few have loops, or make listening equipment available. Even fewer use contrast and lighting to help people with poor vision to see better. And staff will mostly be ignorant of how they can make life easier.

Case story

In one care home a woman who wore two hearing aids described how hard she found living there because there were so many dead zones where loops were not fitted, she could never take part in conversations in corridors or the lift, for example. Another described her frustration at staff’s insistence on always giving out information in the dining room where there was always so much background noise that she could understand nothing. In another home, residents described their excitement when a crack developed in a corridor wall; at last they had a way of locating themselves.

Many older people live below the poverty line, and cannot afford any equipment or changes to their environment. Until recently, people over 65 were in many parts of the country assessed according to lower criteria than younger people, and were less likely to receive help from social services. This meant that older people did not benefit from equipment or services that would have been available to them if they had been impaired when younger. In April this year, Fair Access to Care (FACS) was introduced, which should mean that all adults are assessed according to the same framework, no matter how old they are. It is too soon to say whether practice has yet caught up with the new policy. 

A person living in a care home will receive almost no help from social services,  the fees an individual pays to a care home are supposed to cover any extra equipment or provision they need. In practice, the fees barely cover the most basic costs of the home, so no extra equipment or support is provided unless the individual pays for it themselves.

Older people wherever they live are also less likely to be offered rehabilitation than younger people; care managers often assume that a care package is more appropriate simply because of someone’s age.

Emotionally, older people can find it hard to adapt to sensory impairment, despite society’s expectation that they will just take it in their stride. The majority have lived their whole lives in the hearing and seeing world. Losing their sight or hearing may mean to them that the infirmity of old age is finally beginning, and that from now on their bodies will fail them more and more often. They may fear the effects of their increasing deafness and blindness, and the loss of friendships and independence, and a long-established way of life.

Why don’t we support older sensory impaired people?

Since it is clear that many older people have sensory impairments, and may need support to maintain their health and independence, why don’t social and health care professionals look after their needs better?

It is easy for professionals to blame under-resourcing. But while neither the health nor the social services is flush with cash, they do have resources, which time and time again are allocated to other, higher priority areas, such as children’s services, or cancer care,  areas which are targeted by government.

The failure to invest in services for sensory impaired older people must either be due to policy-makers’ ignorance of the scale of sensory impairment in older people, which is well documented, or to a calculated decision not to make older people a priority.

John Crossland, of Croydon Social Services points out that the very structure of social services makes it hard to provide well for older sensory impaired people. In almost all areas of the country, specialist adult disability services work with people until they are 65. At this point teams specialising in older people take over. Unfortunately, despite lip-service to joined up thinking in social services departments, it is clear that rarely do specialist sensory and older people teams work effectively together. Even more rarely do the members of older people teams have any knowledge of sensory impairments, despite the high prevalence of such impairments in the people they work with.

There are some signs that more local authorities are taking sensory work seriously as a result of the National Service Framework and Section 7, though they still have a long way to go. Health Authorities seem to lagging behind, and anecdotal evidence suggests that most of the impetus for most new joint social and health care initiatives comes from social services departments.

Even where services do have funding and are working together, they may still struggle to provide good care, simply because they cannot recruit staff. Both sensory work and work with older people have a low status within health and social services. Says Chris Cogdell, a social services district manager ‘The problem is that there aren’t enough people, not that the people who are there aren’t committed.’

Ageism lies beneath all of these failures to provide good sensory care for older people. Graham Willetts of RNIB is blunt. He says that: ‘ageism, however covert and subtle, is embedded in the funding and delivery of health and social care, and specialist sight and hearing services are among the worst examples.’

What is the answer to this? We need to continue to campaign for policies which focus attention on older people. We must demand that all staff in all hospitals, clinics, social services and care work receive sensory training. And we need to be angry when people like George are refused help just because they are old.

Main causes of sensory impairment in older people

The majority of older people who are dual sensory impaired acquire their sight and hearing impairments late in life, though some have been impaired for many years. People who are deaf or blind from a young age may become dual impaired in older age, as the impairments common in older age begin to affect them.

More than half of over-60 year-olds are deaf of hard of hearing (RNID 2000). Most lose their hearing through presbyacusis, also known as age-related hearing loss.

One in twelve people are visually impaired by the time they are 60, by 75, this rises to one in six. (Vale and Smyth, 2003). There are four main causes of visual impairment in older age: macular degeneration, cataract, glaucoma, and diabetic retinopathy, and many people develop more than one condition.

Training

Few people who work with older sensory impaired people have any training in sensory impairment, although staff in residential and day care should have a level 2 NVQ in Care, which includes a sensory impairment component. Health care professionals have rarely received any training in sensory impairment, although many older people regularly visit clinics and hospitals and often struggle because of their impairments.

The following story illustrates clearly how a little understanding can make all the difference:

Mrs Davidson lived in a care home. She had a visual impairment and dementia. Staff were finding it hard to work with her, and called in a rehabilitation worker specialising in sensory impairment. He watched as staff fed her, and listened to them talk about how dependent she was. By the time he had left, she was able to feed herself again. Magic? Hardly: he had simply put a black place mat under her plate and set up good lighting above her so that she could see what she was eating.

It shouldn’t have needed a specialist to come up with the solution to Mrs Davidson’s problem. If the staff in her care home had been trained in sensory impairment, they would have been able to help her themselves.

Sensory training can transform the care that older people receive. The most common is awareness training, which is designed to create a better understanding of sensory impairments at a basic level. Ideally, all staff who has any contact with older people should receive this training as a matter of course.

To find out more about training, contact:

The Department of Health, which publishes guidelines and lists of trainers, some of which are available on its website: www.dh.gov.uk/PublicationsAndStatistics.
Department of Health, PO Box 777, London SE1 6XH | Tel: 08701 555455 | Fax: 01623 724 524

The Council for the Advancement of Communication with Deaf People (CACDP), which has just set up new NVQs specifically covering deafblindness.
CACDP, Block 4, University Science Park, Stockton Road, Durham, DH1 3UZ | Web: www.cacdp.org.uk
Tel: 0191 383 1155 | Textphone: 0191 383 7915 | Fax: 0191 383 7914 | Email: durham@cacdp.org.uk,

RNIB, which runs courses for staff working with deafblind older people.
Helpline: 0845 766 9999 | Email: richard.lucas@rnib.org.uk

Sarah Butler is the author of Hearing and sight loss: a handbook for professional carers, published by Age Concern England in November 2004 at £14.99. To obtain a copy, contact Age Concern Books contact:
Tel: 0870 44 22 120 | Web: www.ageconcern.org.uk/shop

RNID (2000) General statistics on hearing, London, RNID.
Vale D and Smyth C (2003), Changing the way we think about blindness, London, RNIB.

© SJ Butler