Aging with a Disability - Conclusions after a Visit to the USA

Abstract
Introduction 
Main Conclusions 
Propositions for Future Work

Fundamental Principles and General Conditions
Main Structure
European Resource Center for Aging with Disability
Europe, Norway, USA
Proposal of a course of action

About the authors
Litterature
Other publications
 

 

A short version of a Norwegian report from a visit to the USA aimed at learning more about the work within the field of the aging disabled population.

The improvements of modern medicine coupled with an enhanced standard of living, sees the emergence of a new group within the «elderly» part of the population: People who have spent all, or greater parts, of their life living with a disability. The fact that they now for the first time in history, can expect to live approximately as long as the rest of the population, leaves the western society with problems we have not been prepared for. Individuals that have been living 30 - 50 years with a disability, now experience new turns in their health conditions - new constellations of problems through the combinations of the problems connected with their disability and those that come with «normal aging» - that neither they, nor the health care providers have been taught to handle.

Some research has been undertaken in the last years as it became clear that this is going to be a major challenge in the future. Among other things the emerging of «secondary conditions» have been shown in several diagnosis (F.ex. Spinal Cord Injury, Polio, Rheumatoid Arthritis, Cerebral Palsy). Common secondary conditions for these disability groups are: lower bone-mineral density/osteoporosis, cardiovascular problems, glucose-intolerance/diabetes, wear and tear, fatigue, weakness, and depression.

Attention must be brought to «over-use»/»over-load» syndromes: A disabled person uses more energy performing certain tasks than a non-disabled person. Some work on maximum energy level all the time, just like a sports-athlete running a marathon. In time, this will result in decreasing capacity.

Lately research shows a slight turn from a primary medical focus towards an understanding based on changes in function, as it becomes clear that the problems of aging with a disability are affecting different life spheres of the individual: biological, environmental, psychological and sociological.

It is important to see the problems of the disabled population more in relation to the problems of the elderly in the future. With age the chance of getting some sort of disability increases, while disabled persons often face the problems of «early aging». The groups have important common issues, and would both profit by pooling knowledge and experience.

We think it is important to focus on the theme of «Aging with a disability» at an international level. in the future. We therefore suggest establishing a Resource Center with an international perspective, based on three interconnecting pillars: Information, Research, and Action, to function as a base of knowledge.

The main goal of the center will be to stimulate research, support projects, and to entertain a broad activity concerning dissemination of information, education and training. The center should be based on a high degree of consumer participation, and should employ, and give project tasks to, consumers who have relevant knowledge within the respective fields.

With the new communication technology available, the center could operate in a network of interested researchers and professionals from all over the world.
 

Introduction

This report is based on the preliminary project on Aging with Disability supported by The Royal Norwegian Department of Health and Social Affairs. The project was a follow up of the work of the Council of Europe Committee on Integration of People with Disabilities⁽¹⁾, and

started in the summer of 1997. It ended with the presentation of a report for the resource-group that had been assembled for the project, together with representatives from the department, in December 1997.⁽²⁾ The report stated among other things that most of the research and work that was being done on the topic, was conducted in the USA. There is also a Center specialized in the field: Rehabilitation Research and Training Center On Aging With Disability.(RRTC), situated at Rancho Los Amigos Medical Center, in Los Angeles.
 

In February of 1998 RRTC arranged the conference «Living with a Disability: Exploring the Aging Process» in San Diego, where the latest information on the topic was to be presented.

The Royal Norwegian Department of Health and Social Affairs granted money for a report from the conference and a visit to RRTC.

The trip was undertaken in 12 days, and included a visit to Washington DC and NIDRR (National Institute on Disability and Rehabilitation Research) at the Department of Education, to learn more about the general political approaches on the topic.

During these days several of the themes mentioned in the preliminary report were illuminated, and we were able to bring back much new knowledge and literature on the topic, in addition to proposals for research and actions that can be undertaken in Norway. Also ideas around an international project on Aging with Disability emerged.

The following are the main conclusions and proposals made in the Norwegian Report.

Main Conclusions

· Aging with Disability is an important topic in the USA, and will continue to be stressed in the years to come, as the aging population increases.

· Research has shown secondary conditions, specifically in diagnosis as Spinal Cord Injury, Polio, Rheumatoid Arthritis, Cerebral Palsy and, to a certain extent, Stroke. Hypothesis that most disabilities have their «post-syndromes», are evolving. Therefore more research on a variety of diagnosis should be undertaken, as well as cross-disability studies, on these effects.

· Common secondary conditions for the disability groups mentioned above are:

Þ Fatigue

Þ Weakness

Þ Wear and Tear

Þ Lower bone-mineral density/Osteoporosis⁽³⁾

Þ Cardiovascular problems

Þ Glucose-intolerance/diabetes

Þ Depressions

· Depression is a serious problem. A disabled person has a 2-3 times greater chance of getting psychological problems than the average person. Worries for the future come for them in addition to the disability and the problems of everyday life. Research in the USA show that few get any help at all for their depression, and fewer adequate help.

· It can be useful to separate «co-morbidities» from «secondary conditions». There must be more research done on both.

· Attention must be brought to «over-use» and «over-load» syndromes as well:

A disabled person spends more energy performing a task than a non-disabled person. Some works on maximum energy level all the time, just like a sports-athlete running a marathon.⁽⁴⁾ In time, this will result in decreasing capacity. More physical training is not recommended in these cases, but rather a period with rest and life-style changes necessary to cope with the changes in function.

· There is still a need to map and analyze the problems that disabled persons encounter with age. This is especially the case for the groups with sensory impairments, with rare diagnosis, with degenerative conditions, invisible conditions and with chronic psychiatric problems. There is also a clear need to focus more on the problems of the groups with developmental problems.

· More research is needed on the cause of secondary conditions, as well as on what can prevent them.

· Family-members or other close providers play an important role in the life of the individual disabled. In the future, their health and well-being must be taken into account, as well.

· Research shows a slight turn from a primary medical focus towards an understanding based on changes in function. Factors such as «Life Satisfaction» is seen as playing an important role, for instance the possibility of continuing «valued actions»⁽⁵⁾.

· It is important to se the problems of the disabled population more in relation to the problems of the elderly in the future. The older people get, the greater the chance of getting some sort of disability. Disabled persons often encounter age related problems at a far earlier stage in life. The groups have important common issues, and the possibility of pooling useful knowledge and experience, is present.

· With regard to information, it is important to view knowledge and skills as separate entities. Information might give a person knowledge, but knowledge on a topic does not necessarily imply having the skills to make this knowledge useful. The informative part must therefore have a great specter of methodology, and a broad target group, and must incorporate practical training

Many of our conclusions about the problems that come with aging with a disability made in the preliminary project in 1997⁽⁶⁾, were confirmed and strengthened during the visit to the USA. This held especially true for the ideas around the «BEPS-Variables» and the complicated interplay existing between them.⁽⁷⁾

The trip also confirmed the importance of focusing on the topic «Aging with a Disability» on an international level in the future. We will therefore allow the enclosure of the following propositions:
 

Propositions for Future Work

Fundamental Principles and General Conditions

In the report from the preliminary project in 1997, the following was emphasized regarding fundamental principles and general conditions for future research and action:

· Conscious and systematic co-ordination of the work, to eliminate fragmentation.

· Future research and actions must have an interdisciplinary orientation.

· Consumer participation must be a main premise.

· There must be a close connection between research results and the dissemination of these to the actual target groups. This will demand the organizing of a particular system where research and information is connected.

· Research must be combined with practical approaches.

· Research and actions undertaken must have international foundation and perspective.

The above principles were confirmed by our experience from the USA.
 

Main Structure

Future projects on the topic should be based on three interconnecting pillars:

· Information

· Research

· Action

The pillars in this triangle must be strongly interconnected and co-ordinated. Each pillar will thus have a stimulating and developing effect on the others.
 

European Resource Center for Aging with Disability

We suggest that a resource center on Aging with Disability will be established, and that this center will be based on the main structure and fundamental principles mentioned above. The center should have an international perspective, and, if possible, a profile as a European Resource Center for Aging with Disability.⁽⁸⁾ The center should function as a base of knowledge. It should have a fixed address and a small staff consisting of people with experience from research, information work and professional work.

The main goal will be to stimulate research, support projects, and to entertain a broad activity concerning dissemination of information, education and training.
 
The Center should operate in a network of interested researchers and professionals from all over Europe. It should have an over-view of existing research on the topic, and run a data-base for this purpose. It should publish articles in professional journals, scientific and other relevant periodicals, included those of the consumers organizations. The center should develop its own programs for information and education, directed towards consumers, students and professionals. It should exchange experience and material with other relevant institutions and projects on an international level. We would suggest a close collaboration with RRTC to learn from their experience of establishing and running a similar organization.

The center should be based on a high degree of consumer participation, and should employ and give project tasks to consumers who have relevant knowledge within the respective fields.
 

1. Information

The concept of «Information» is here used in a broad sense, containing everything form dissemination of knowledge towards consumers, researchers, health care personnel and other persons in the providing system, ⁽⁹⁾, to conferences based on dialog between the different groups, exchange of experience and brain-storming where all three target groups are represented.
 

The USA signalled possible fields of co-operation as:

· Research and other articles on relevant topics

· Exchange of experience regarding information programs and pedagogical methodology.

· Co-operation regarding development of information material and educational programs

Þ Written material to be translated into different languages

Þ Videos being dubbed or sub-texted
 

· Co-ordinated use of Websites on the Internet

· Development and up-dating of databases.
 

2. Research

The research undertaken at the center must be of interdisciplinary character within the fields of medicine, psychology, ergonomics, physiotherapy, sociology and other relevant social studies. Topics could be:

· Further systematization of research and knowledge existing in the different counties involved in the center

· Establishment of new project on a national and international scale, based on already existing knowledge and experience.

· Co-operative projects on an international level

Þ Focus on different topics relevant to the different partner countries

Þ Comparative research
 

USA expressed an interest in collaboration on several fields of research:

· Further research on early aging and the immunity system

· Decline in bone structure as a symptom of early aging in different diagnosis groups

· Cross-diagnosis, comparative studies of cardiovascular problems

· Comparative studies⁽¹⁰⁾ of the consequences of secondary conditions.

· More research in general on the causes of secondary conditions.

· Comparative studies regarding the hypothesis that most disability groups get some kind of «post-syndrome».

· Consequences of preventative measures

· Different health care systems and their impact regarding the «over-load» syndrome. (F.ex. concerning employment, equal rights, symptoms of stress etc.)

· Comparative studies of different health care systems regarding culture, attitudes and use of resources.
 

3. Actions

The need for practical measures is great. First as «Action Research Programs», where the effects of the measures are being evaluated, and where the measures are being improved accordingly, as the project evolves and new knowledge emerges. The action part of the system has not been discussed in detail, however some examples of possible practical measures can be mentioned:

· The testing of energy conserving measures⁽¹¹⁾

· Prevention and treatment of depression⁽¹²⁾

· Psychological help to handle the new situations brought about by the secondary conditions.

· Counseling of family and other relevant persons in the providing system

· The development of a meaningful leisure time
 
 

Within all these fields both local action and international practical measures of co-operation can be conceived.
 

Europe, Norway, USA

The Council of Europe Committee on Integration of People with Disabilities concluded that Aging with a disability was a theme the European countries should start to focus on, and recommended international co-operation within the field.⁽¹³⁾

This proposal of a European Resource Center is an attempt to define in concrete terms how this co-operation can function, and how the single countries can be stimulated into developing research and action programs within the field.
 

It seems to us, that when it comes to the systematization of research and information regarding disabilities and the problems of aging, that USA are somewhat ahead of the European community. The wish to collaborate on the topic was expressed, not only at the RRTC, but also in the Department of Education in Washington DC. The Royal Norwegian Department of Health and Social Affairs has with this project followed the recommendations of the Council of Europe.This seems like a good opportunity to suggest common practical measures between USA, Norway and other interested countries in Europe.
 

Proposal of a course of action

· The start of a project with the title «Resource Center for Aging with a Disability in Europe» - shortened to «RADE». The goal and organization of the project should be based on the main principles and structures described above.

· The project starts out being co-ordinated from Norway, with broad international participation on the board and in the different project-groups.

· A concrete program for the development of the three main pillars of the project: Information, Research and Action, will be drawn up by three project groups under a joint co-ordination:

· An Information Group

· A Research Group co-ordinated through The Norwegian Research Council.

· An Action Group responsible for the practical projects
 

The groups must communicate closely. Joint projects, such as arranging conferences, can be considered.
 

We consider it important that the interval between planning and actual establishment of the center should be as short as possible.
 

Starting the project with the Information group

We suggest starting the work with the initiation of the Information Group, as this will have a connecting function in relation to the other groups in the project. It is also of great importance that existing material on the topic be made accessible to a broader audience of researchers, health care providers and consumers.

We also suggest that the information activity should be connected to the work of the existing Information department at RRTC in the USA. The RRTC has a data base of approximately 400 research articles with about 50 abstracts. Most of these articles originate in the US. They would like to co-operate on updating the base with relevant material from Europe and other parts of the world. We therefore suggest that representatives from USA be invited to partake in the project. It can also be useful to draw upon the experience of RRTC in establishing and running such a project.
 

International conference and project-seminar on «Aging with a Disability»

To get the project off to a «flying start», we suggest that Norway shoulder the responsibility of arranging a similar international conference on the topic of aging with a disability, as the one held in San Diego in February 1998. We suggest that this be held over 2 days in the summer of 1999, with about 150 participants.
 

We further suggest that the conference be followed by a project-seminar of a smaller scale, lasting 2-3 days, with not more than 30 participants. Here interested consumers, researchers and health care providers of all levels in the system can discuss the project and give their opinions on tasks and organization.
 

Both the conference and the seminar will make it possible for new contacts to be made, as well as the initiation of new networks.
 

The material from the conference and seminar should be systematized and used in the further work with the project.
 

About the authors

Terje Binder comes from Norway, and is a Sociologist since 1972, specializing in deviance and sociology of organizations.

After some years with various research work on different health institutions in Norway , leading a Community Mental Health Program for drug abusers and as a Planning Consultant for Hordaland County and for one of the biggest newspapers in Norway, he started his career as a private consultant. Since 1990 he has had his own consultant company, «Terje Binder AS».

Janicke Kilian (also a Sociologist) joined the company in 1994. She has a broad international background and work experience.

Today the company has its main basis in Bergen, but with projects all over Norway. The company work in a co-operation network with research institutes and other consultants.

80% of the last years' projects have been centered around the health and social service sector, such as: Research and Action programs for disability organizations, hospitals, municipalities and counties, counseling and leading team development projects for rehabilitation programs. As well as creating Training Programs for leaders and other personnel in Social and Health Service, and Information Programs for disability organizations.

The consultants have also specialized in the so-called small disability groups: those with a rear diagnosis.

All projects are based on consumer participation, and several separate projects on this subject has been accomplished: How to make it possible for disabled persons to participate more in the decision process, both on the individual, institutional and systemic level.

The main part of the projects has been financed by the Norwegian Government, mostly through The Royal Norwegian Department of Health and Social Affairs, which administers The Government's Plan of Action for the Disabled.
 

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Other publications:

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Westside Story. The Newsletter of Westside Regional Center. Issue 1/July 1996.
 
 

1.

 See Council of Europe Committee on Integration of People with Disabilities: «Framework for the Qualitative and Quantitative Analysis of Data on the Aging of People with Disabilities», 1997

2.

 A short version of the report has been translated into English: Terje Binder and Janicke Kilian: «Aging with a Disability. A short version of a report..», January 1998.

3.

 See a.o. Takanashi et al. i Developemental Medicine and Child Neurology, December 1995 vol.37, nr. 12. MacKith Press London: «Estimating bonechange in patient with severe disabilities.» and Henderson, R.C. and Greene, W.: «Bone-Mineral Density in Children and Adolescents Who Have Spastic Cerebral Palsy» in The journal for Bone and Joint Surgery, vol. 77-A, no.11. Nov.1995.

4.

 According to Dr. Laura Mosqueda at the RRTC

5.

 Valued actions can be activities with family and/or friends, leisure-time activities, hobbies, a meaningful job, etc.

6.

 See Terje Binder AS: «Aging with a Disability - a short introduction to a report...», January 1998

7.

Ibid. The BEPS-Variables deal with Biological/organic, Environmental, Psychological and Socio-relational factors that influence the aging process: (Biological/organic, Environmental, Psychological and Socio-relational)

8.

 We suggest teh name «RADE - Resource Center for Aging with a Disability in Europe»

9.

 In some cases students later to work in the relevant fields, are an important target group

10.

 The comparative studies should - as far as possible - be based on the same methodology

11.

 In Norway Sunnaas Hospital has a program on this topic for some post-polio patients.

12.

 This was specially emphasized by the RRTC as an important, but neglected, topic

13.

 See Council of Europe Committee on Integration of People with Disabilities: «Framework for the Qualitative and Quantitative Analysis of Data on the Aging of People with Disabilities», 1997

14.

 This is a list of material obtained during the visit to the USA
 

jik@pacbell.net