It's Never Too Late

Talking Sense - Volume 45, No 4, Winter 99

The needs of older people with dual-sensory-impairments are often ignored or neglected. The challenges they face are enormous, but much can be done if the will - and the funds - are there.

As more and more people live longer, the numbers of those with both hearing and sight loss grows. Indeed, it is estimated that 75% of deafblind people are over the age of 75 and that 85% of people over the age of 85 have combined sight and hearing difficulties.

Most will have had both hearing and sight when younger. When one sense deteriorates, the other may compensate to some extent - for example, people with impaired hearing may be able to make more use of their sight. Imagine, then, how it feels if, having lipread for years, you suddenly can no longer see someone's lips or body language.

Losing one sense is bad enough, but losing two can be far more disabling and, coupled with other problems such as poor mobility, cause profound difficulties. Without appropriate help, many people may feel very isolated and lost.

How do you talk to your family or other people if you can't see or hear them properly? How can you cook, clean, shop, go out, travel on public transport or get information? How do you fill your days if you can't read, watch television or listen to the radio? How do you even know if someone is at your front door? If you can't recognise a voice or face it makes you terribly vulnerable.

Isolation

Rita Cooper, a Sense deafblind development officer, says, "A central problem for older people with dual sensory impairments is isolation and not fitting in anywhere. Many older people are isolated anyway but this makes them even more so. Those who are hard of hearing and go to a Deaf club may find this becomes impossible when they start to lose their sight, while visually impaired people who lose hearing find their communication drastically curtailed. They can't just pick up the phone, and following a conversation becomes hard, if not impossible. "

Sometimes elderly people are encouraged to use day centres but, says Sense Regional Adviser Philippa May, "These are often dire for people with dual sensory loss because activities are centred on being able to hear, see, and interact with other people. There is always noise and chattering but poor hearing cuts you off from being able to concentrate hard enough to converse with people. "

Isolation also affects those in residential homes because most staff lack understanding of the effects of dual sensory loss and have no training in deafblind sign language or communication skills. "It's not lack of will," says Philippa May, "but often the staff are simply too busy - cleaning ten rooms or more on a shift."

So while physical needs may be met - either in a Home or at home - others, which are equally important, are neglected. "People find it easier to look at physical care: they bustle about the kitchen, make things clean and tidy; but what the person might really need is someone just to sit down with them for a few minutes."

Another difficulty for older people with dual sensory impairment is accessing health services. For example, one deafblind man with diabetes who had a false leg was unable to communicate to hospital staff his leg didn't fit and so was confined to the house. Only when a Sense worker facilitated communication was he given a leg that fitted properly and was able to become mobile again.

Isolation, communication difficulties, loss of independence and poor mobility can profoundly affect emotional life. Hardly surprisingly, some people become depressed, withdrawn, frustrated or angry.

An ostrich policy

There's another problem, too. Says Liz Duncan, Sense specialist on older people,

"Most older people with dual sensory impairment face challenges because of lack of recognition. It's a historical, somewhat ageist, attitude based on the view that loss of sight and hearing are a normal acceptable part of ageing. There's an almost institutional reluctance to address the needs of this group.

"The consequence is that they suffer a woeful lack of provision and are denied access to specialist input that could support them. Whereas in reality this group of people do need services and very often minimal input can have maximum input on their lives"

For example, advice about installing good lighting or gentle specialised intervention to develop a communication system over a period of time can make a huge difference. Early action can open doors as others close. But all too often nothing is done until things reach crisis point. The problem is also compounded by low expectations - it may be assumed for example that older people won't be able to cope with a microwave, a new loop system or be able to learn sign language. Sometimes older people themselves - and/or their families have low expectations and don't perceive themselves as being most in need.

What is Sense doing?

Sense is working to raise awareness of the needs of older people with dual sensory impairments and developing services around the country to meet these needs. These services include communicator-guides, volunteer guide-helps, specially trained home care workers, training for workers in the field, and specialist residential and respite provision.

We are also working with Age Concern to develop home-based practical services that support older deafblind people in the community and seeking partners to create Healthy Living Centre projects. These will support the overall health of older deafblind people through sight and hearing screening, social opportunities and other services.

Residential services

We now have three specialist residential homes for older people with sensory loss - in Coventry, Malvern and Preston. Boston Lodge in Coventry has a specially designed environment for deafblind people including suitable aids and equipment. Staff are trained in deafblind awareness and communication techniques, and activities are designed for people with sensory impairments (see page 16).

Plans are also underway for a supported living project in Coventry for older people with acquired dual sensory loss. Within an adapted environment this will offer rehabilitation and training so people can learn to cope with deteriorating sight and hearing and develop their confidence and skills.

Resource centre

We run Coventry Society for the Blind Resource Centre which offers a one-stop equipment service for hearing and vision, social groups, courses in braille and computers and a hospital information service. A volunteer guide-help service supporting older deafblind people in Warwickshire is coordinated from the Centre.

Promoting awareness

Regional advisers, marketing managers, deafblind development officers and other Sense staff are all involved in increasing the profile of acquired deafblindness and combating ignorance and ageism. Older people are often seen merely in terms of their age, not their disability, and frequently those with dual sensory loss are unidentified.

Deafblind development officers in London, the West and elsewhere are working hard to get local and health authorities to identify need, make existing services more accessible to deafblind people, and develop new, low-cost provision to enable them to become active citizens and stay in their own homes if desired.

The Derbyshire Project - where Sense collaborated with Derbyshire County Council and others - specifically focussed on older people with acquired dual sensory loss, working with a number of individuals to show gaps in services and unmet need.

As a result of the two-year project a number of actions are being taken to fill gaps and resolve problems in areas such as training, low cost specialist services and opportunities for older deafblind people. Similar projects are now underway in South Gloucestershire and Walsall for deafblind people of all ages across the region.

Training

Trainingis important both for workers in the community and residential homes. Sense offers training in awareness, communication techniques and other strategies required for supporting people with acquired deafblindness to a wide range of professionals - from home care staff to GPs.

We are also trying to get the inclusion of sensory impairment standards into contracts and inspection criteria for residential homes and home care services, so providers of services take these into account. In addition, we try to influence policy development.

The human touch

Individual support to older people with acquired dual sensory loss is offered by Sense in the form of communicator-guides, volunteer guide-helps and one-to-one workers. Many service users say these are a "lifeline" - helping combat isolation and enabling them to stay in their chosen setting.

Communicator guides (funded by local authorities), visit people once or twice a week and enable them to carry out tasks they might otherwise find difficult or impossible. Checking sensory aids and equipment, reading correspondence, making sure food hasn't gone bad, accompanying service users outside in the fresh air, on hospital visits, shopping, offering human contact or enabling older people to socialise are all part of a communicator guide's day to day work.

Volunteer guide helps also spend time with people in their own homes, supported living setting or residential homes. Sense trains many volunteers and they can make an enormous difference, particularly when people are isolated and have difficulties communicating.

One-to-one support is sometimes offered where there is a strong need. For example Lisa Cutts does outreach work for Sense visiting a lady in her 70s who has dual sensory impairment. Lisa, who has learnt sign language, says " She was very withdrawn, lonely, unhappy and somewhat untrusting, but gradually we've built up a relationship. I am one of the few people who can communicate with her, through a combination of deafblind manual and hand over hand.

"When I go now she is waiting and knows it's me by touching my hand. We talk, I plait her hair, give her a hand massage, and I encourage her independence - she hadn't fed herself for a long time."

It seems that persuading people to say it's worth funding services for older people with dual sensory impairment is half the battle. As Sarah Greaves the Derbyshire Project worker says " The main obstacle is getting the will and commitment to do anything. But it's an important issue about quality of life. And it's never too late. "

It's very hard to communicate

Florence Knights is 94 years old and has dual sensory impairment. She lives alone and Isaac Lean, a communicator guide, visits her weekly

"I lost my hearing 12 years ago, quite suddenly. I used to be able to hear a pin drop - then nothing. I've been blind in one eye since I was a baby, but recently the other got bad too. Now everything is a continual mist and I only see vague shapes.

"It's very hard to communicate - people don't appreciate the fact that you are deaf and blind. I have a hearing aid but it's not that good. The hospital have more or less given up. They asked me "Can you lipread?" I replied I probably could if I could see the lips!

"Now I can't read, write, sew, watch TV. But you have to make the most of life. I'm alright with my own company though I do get lonely sometimes. I try to find little things to do - but even tasks like washing stockings are difficult now.

"I have help at home - someone does my washing, cleaning, shopping and I also get meals on wheels. They haven’t time to sit down and talk to you, but at least it's someone coming into the place.

"Isaac comes once a week. He is very kind: he fixes things, phones the hospital if it's needed, and takes me to the park where we sit and chat. I like going there and also to the shops because it's a change. I hadn't been in a shop for years. "

Partners suffer too

"Partners can also have a very raw deal," says Philippa May. "I am working with a couple now: Mick, who is 92, has been virtually blind since childhood and worked as a basket maker all his life but he and Renee always had an active life - they toured Europe on a scooter in the '50s with Mick riding pillion.

"Recently, though, he has lost most of his hearing and this has dramatically changed things. They both feel isolated because communication between them is so difficult and Renee misses their former life. She worries if she goes out and leaves him and feels very frustrated.

"A social worker asked if I knew of a day centre for Mick, but he wouldn’t have been able to participate. So I found a volunteer who now visits him every week. He does things Renee might not be able to, such as taking Mick out to the moors where he can smell the sea.

"At the moment Mick is in respite accommodation for a fortnight to give Renee a longer break. It's very hard for couples when one partner has dual sensory impairment and can have devastating effects on a relationship. So often people look forward to retirement, only to find their dreams disappear. "

Key points

• More and more people are living longer and experiencing an increasing degree of sensory loss.
• Older deafblind people suffer from isolation, lack of independence, communication and mobility difficulties.
• They are often unidentified and their needs unrecognised. Most social services see a person in terms of their age, not disability.
• There may be stereotypical assumptions about what older deafblind people can achieve. New communication techniques and technical aids are often not made available to them.

Sense is developing specialist provision to meet the needs of this group including...

• communicator guides, guide helps, trained home carers, one-to-one support
• awareness-raising
• training for key staff working with older people
• specialist residential and respite provision
• services, rehabilitation and support which will enable older deafblind people to continue to live independently
• assistance to statutory authorities to make services more appropriate and accessible
• development of a specialised assessment process
• creation of peer groups for older people with dual sensory impairment.

By Francesca Wolf

With thanks to Rita Cooper, Lisa Cutts, Liz Duncan, Sarah Greaves, Jane Harding, Florence Knights, Isaac Lean, Philippa May, Mick and Renee.