Work with Elderly Persons with Acquired Deafblindness in Denmark

Workshop presentation given at the world conference on deafblindness, Lisbon, Portugal, July 1999 by Kirsten Jansbøl, Information Center for Acquired Deafblindness

In this workshop I will tell you about the work done by the Information Center for Acquired Deafblindness with regard to elderly people with age-related deafblindness, and I will give you some practical examples of our work, share with you some of the considerations we have had and describe some of the strategies we have utilised in awareness-raising about elderly with acquired deafblindness.

The general aim of The Information Center for Acquired Deafblindness is to collect, adapt and develop knowledge about acquired deafblindness, and as the most important part of the work to publish this knowledge in order to maintain a high standard in local authority schemes to assist people who have a serious impairment to their sight and hearing.

When we started our work a little more than five years ago, we knew very little about elderly people with acquired deafblindness, because we as the rest of the Danish society were simply not really aware of their existence.

As an Information Center for Acquired Deafblindness we decided to put a great deal of work into

• getting to know the numbers of the elderly with age-related deafblindness
• getting to know their needs
• as the most important part finding ways of making awareness of the elderly with acquired deafblindness

How many elderly with acquired deafblindness are there?

One of our first tasks was to conduct a demographic survey concerning 10% of the Danish population. Here we found, that approximately 900 elderly persons in Denmark should suffer from age-related acquired deafblindness. That means, that there should be 130 elderly deafblind in every 100.000 elderly over the age of 67. These findings have later been confirmed in a Norwegian survey, and now we think, that there are at least 130 elderly with acquired deafblindness in every 100.000 over the age of 67. But back in the autumn of 1995 when we got the result from the survey, we were very astonished, because we and the deafblind consultants knew of very few. The deafblind consultants are - by the way - the ones who are in direct contact with the acquired deafblind.

Why was it so, and why are we not aware of elderly with severe hearing and vision loss?

I think, that we as human beings tend to think, that with age the senses weaken, and that's natural. And then we don't think any further, and that is the main reason why we don't think in terms of rehabilitation and technical aids in relation to elderly with acquired deafblindness, as we do in relation to younger people with acquired deafblindness.

The elderly deafblind persons themselves do not regard them as deafblind, but as seeing and hearing persons, who now don't see and hear well anymore.

So both the individual elderly deafblind person and his or hers surroundings, such as family and professionals, do not perceive the elderly person as "deafblind". In general, we tend to regard a deafblind as being like Helen Keller, that is totally deaf and totally blind. Yet this condition applies to only a very small proportion of person with deafblindness.

So the code-word to recognition of the elderly with a severe dual sensory loss is awareness-raising.

But before I will tell you about our work with awareness-raising, I want to comment on two things:

One is:

Who are the elderly persons with acquired deafblindness?

I will not attempt a discussion of definition, but just note the following:

The category "elderly deafblind" consist of a minimum of two groups. One is the very small group of those who have been deafblind since youth or early adulthood and now have become old. Then there is the much larger group of those of interest to us here, elderly persons with age-related deafblindness. Here we often encounter, at least in Denmark, the problem that for those in contact with deafblind elderly it is difficult to see whether the degeneration of function in the elderly person is a result of a more general ageing process, or whether we can speak of an impairment beyond ageing or not linked with ageing in itself.

And here we must argue that if a functional impairment becomes so serious that the earlier lifestyle can no longer be maintained in relation to communication, receiving information and independent mobility due to a combined hearing and vision impairment, then we are speaking of deafblindness - also in elderly people.

Two is:

What are their needs?

Before we - as an Information Center - could start awareness-raising, we had to know, what kind of needs the elderly with acquired deafblindness had, and we had to know if this needs could be met within the frame of the Danish Social Law.

We made a qualitative survey of 30 elderly persons with acquired deafblindness and their needs. We found that very many of their needs could be met within the Danish legislation. Because many of them were not compensated optimal in relation to their vision- and/or hearing loss. Rather much could be done to ease their daily life.

When the survey contacted the municipalities, in which the elderly were living, to ask for the optimal help, the municipalities were not unwilling to give the necessary help. They had in fact the will, but were in lack of knowledge.

Let me sum up our knowledge on this stage:

We knew the estimated number of elderly people with acquired deafblindness, we knew that there were many more than we had thought, we knew of their needs, we knew that some of their needs could be met within the law, and we knew that the municipalities in general were willing to meet the needs of the elderly, but we also knew, that the municipalities were not aware of the elderly with acquired deafblindness.

So our main-task would be awareness-raising.

Awareness-raising and strategic considerations

Awareness-raising about elderly with acquired deafblindness should take place, where the elderly live. In Denmark most of the elderly live in their own homes, and if necessary with help from the municipal home care service. A very important target group would therefore be the professionals in the municipal home caregiving units.

The professional group with the most frequent contact with elderly deafblind living in their own homes are the home helpers. Therefore we thought that they should be key persons in awareness-raising about elderly deafblind persons.

But how do you call attention to such a small group as the elderly deafblind?

Here I will give you some of our considerations.

• Denmark has a population of five million persons
• Of these 700.000 are over 67 years old.
• Among the 700.000 elderly there are about 2500 with a combined hearing and vision problem.
• Of these, about 900 are deafblind. How do we create awareness about 900 persons out of 700.000?

How do we conduct an information campaign about 900 out of 700.000? The answer is probably that you don't!

The goal for the information to home helpers would be, first to sharpen their awareness about elderly having a serious degree of combined hearing and vision impairment, second to give them a basic knowledge and some guidelines in their contact the elderly deafblind, so that the elderly could obtain more satisfactory benefits from the home helpers.

But good advice on contact with elderly with a combined hearing and vision impairment is also good advice on contact with elderly with a visual impairment and elderly with a hearing impairment.

And among the 700.000 elderly there are approximately 50.000 visually impaired and additional 350.000 hearing impaired.

Therefore, we thought that if we joined forces with the Information Center for Visual Impairment Information Centre and the Information Centre on Hearing and Deafness, then the target group for the awareness- and information campaign would cover both visually impaired and hearing impaired, and that means half of Denmark's elderly, that is about 50% of all elderly instead of just 0.128%.

We thought that this would mean that the leadership of the municipal home care services would become so interested in this information that they would feel more willing to give the home helpers time to acquaint themselves with the information, which is necessary for the home helpers in order to acquire the basic knowledge about dealing with elderly with acquired deafblindness.

These strategic considerations lead to the booklet "When Vision and Hearing Fail", which was published in 55.000 copies, which is a high number under Danish conditions. The booklet was sent out to all directors of social services in Denmark's 277 municipalities by the National Association of Municipalities, which unites all the municipalities in Denmark, with an appeal that it be distributed to all personnel working in the municipal home care services, numbering about 50.000.

"When Vision and Hearing Fail" has clearly created awareness, including awareness about the specific group of elderly persons with acquired deafblindness. But much more is needed before increased awareness - in the form of information - can produce changes in behaviour and thinking, which is certainly the goal with the increased awareness.

There must also be some kind of education or training, in e.g. the job situation.

We have therefore put together a packet of materials which we sent out to all the municipal home caregiving units. The packet has three objectives:

1. To enable the municipality to be aware of and identify those elderly who have acquired deafblindness
2. To create awareness among municipal staff about the situation of elderly with acquired deafblindness
3. To suggest possibilities for action

The awareness-raising material demands a time investment by the municipality of just one hour for the staff members.

And here we find yet another strategic consideration. If we succeed in creating a heightened awareness about the elderly deafblind and their situation, we must think in terms of better resource utilisation on behalf of the systems which offer services to the elderly with acquired deafblindness. For example, we could have made a program for home helpers which took three hours, and thereby given them even more knowledge. But the chances are very small that the municipalities would have set aside three hours for all their home helpers in order to learn about this small group of elderly with acquired deafblindness.

We have a Danish proverb which says, "The best must not become the enemy of the good." For example, if we had only pursued the goal of a three-hour course for home helpers, which is unachievable, we would have failed in obtaining even the one hour information meeting. Then we would have allowed the best solution to become the enemy of good a solution.

We have made similar considerations in connection with other activities, including the one, I will mention now.

As a project in two counties, we have brought the hearing rehabilitation unit, the vision rehabilitation unit and the regional deafblind consultant together to offer a course on the elderly with hearing and/or vision problems directed to key personnel in the municipalities’ home care services. The course is of six hours duration and is both awareness-raising and action-oriented.

Behind this project – beside thinking in resource-conscious terms on behalf of the system – lay other strategic considerations in connection with awareness-raising for the small group of elderly people with acquired deafblindness. Denmark’s six deafblind consultants and the two staff members at the Information Center for Acquired Deafblindness cannot handle the work effort needed to create effective awareness about elderly persons with acquired deafblindness in all of Denmark’s 277 municipalities.

More actors are needed!

In Denmark, as in many other countries, there is a visual impairment unit and a hard of hearing unit of some kind at the regional/county level. These rehabilitation systems must be made more active in awareness raising work about elderly deafblind, for example, in the form of the six-hour training course mentioned before. Only by getting more actors into the field can the awareness raising work obtain the necessary effect.

A very great additional advantage of this project is that the two advisory systems for people who are, respectively, hearing and vision impaired become aware that they have clients who have a double impairment, and whom they must take into consideration if they are to provide these persons competent advice in connection with e.g. technical aids. Co-ordination of the regional hearing and vision efforts is necessary in order for the elderly to obtain adequate treatment.

As another result of the project in the two counties, we have made 1) a booklet called 1 + 1 = 3, guidelines in contact with elderly with a dual sensory loss for staff in the municipal home care services. (1 + 1 = 3 means, that one sensory loss plus another sensory loss is not just a double sensory loss, but is something more than the double). The booklet contains of articles about: good communication with elderly with acquired deafblindness, technical aids for the deafblind, the medical cause of age-related deafblindness etc. 2) As the most important we have made a complete planning package for a one-day seminar, which contains

• A letter to the head of the municipal home care services with notification about the one day course and a registration form, together with guidelines about the practical aspects of the course.
• Outlines for the following presentations at the course:
  • vision and age-related visual problems and technical visual aids
  • hearing and age-related hearing problems and technical aids for hearing
  • the combination of age-related hearing and visual problems and technical aids and other support possibilities.
• Teaching material for the presenters, such as overhead sheets, audio tape and video.
• Suggestions for additional material for the course participants (including the booklet "1+1=3", that I mentioned before).

This planning package has this summer been sent out to all counties rehabilitation system for people with hearing impairment and for people with vision impairment. Now we have to - together with the deafblind consultants - to make the follow-up by a personal contact to each county in order to get them to manage - at least once a year - a course on the elderly with hearing and/or vision problems directed to key personnel in the municipalities` home care services.

Has this, relatively comprehensive, awareness-raising effort in Denmark had any effect?

This is, of course, very difficult to measure, for much so-called "soft data" enters into any such measurement or assessment. But a more tangible goal could be the number of elderly deafblind who are referred to the countrywide deafblind consultant system.

When the Information Center for Acquired Deafblindness began its awareness raising activities about three years ago, the deafblindness consultants had knowledge of 176 persons with acquired deafblindness (both elderly and younger). Today they are in contact with 3o6 persons, and the number of referrals of deafblind persons to the consultants is constantly increasing and primarily elderly. It is an increase of more than 70% in three years.

And let me add, in the two counties where we have had the project running there has been a tremendous increase in the number of elderly with acquired deafblindness been identified. When we started the projects the deafblind consultants knew of two elderly, to day they know of 50 in the two counties.

One can therefore conclude that awareness-raising work results in more elderly with acquired deafblindness becoming identified and thereby obtain the possibility to utilise the national facilities available for people with a serious degree of combined hearing and vision impairment.

We in Denmark are lucky, that we have an Information Center for Acquired Deafblindness, that has time and recourses to do research on deafblindness. I know that this isn't the situation in most countries, but I think and I hope that you will be able to gain something from our experiences.

Thank you for listening!