RICERCA ITALIANA     

Ageing and quality of life. Developing an integrated model of intervention for people with mental disability or behavioural deficits.

Università degli Studi di Udine

Abstract

The research project, on which the three Research Units (RU) collaborate, is based on the situation created by the very considerable extension of life expectancy in people with mental disabilities. The situation is certainly positive and uplifting, but has many drawbacks which have to be considered. It is exciting because it opens a new scenario for people affected by mental retardation: the possibility of prolonged life and, thus, of durable personal and social contacts. This perspective is in sharp contrast with the negative prognosis that were made a few years ago. The source of concern is related to the fact that we are not yet equipped to cope with problems related to age of impaired people. There are no shared and tested protocols to assess the first signs of decay in various abilities. There are no proposals for integrated actions involving various professional figures.
Considering these observations, the goals of our research are:
1. developing a computerized evaluation system which allows to investigate the cognitive decay and lifestyles of elderly people with mental disabilities or behavioral problems caused by other cause. Particular attention will be devoted, for the lifestyles, to dietary habits;
2. outlining an integrated model of intervention among various professional figures; the integrated activities can be planned and monitored using the tool created for patient evaluation. The ultimate goal is to guarantee satisfactory levels of >>>

Principal Investigator

Lucio Cottini Università degli Studi di UDINE

Research Objectives

The extension of life expectancy - concerning both people without disabilities (who nevertheless have problems of adaptation) and people with disabilities - represent a new and harder challenge for those who work in healthcare, education and rehabilitation. Ageing is often accompanied by more or less marked forms of motioning, cognitive, relational co-deterioration, with a consequent loss of the skills necessary for daily life and adaptation to the environment. These conditions are furthermore complicated by inadequate lifestyles, particularly with regard to inappropriate dietary habits and sedentary life. The results of this situation raise a series of questions that invest primarily the operational plan:

1. Which areas of decay have prior consideration for a possible educational-rehabilitative intervention? Is it advisable to focus the attention only on the health situation, as was often the case in the past, or is it better to broaden the horizon to other skill areas, which considered most relevant for an autonomous and emotionally satisfying life?
2. Which criteria have to be considered in order to assess the degree of decay? Is it recommendable to base on regulatory assessments, such as those represented by standardized tests? Or to adopt a wider, more friendly approach consisting, for example, of rating scales forms filled in by family and operators? Or is it useful to base on self-report measures aimed to highlight the subjective issues related >>>

First Results

The expected results concern basically two areas:
1. on the one hand we want to implement and test a computerized evaluation system that could allow to investigate the cognitive decay and lifestyles of elderly people with mental disabilities or behavioural problems determined by other causes;
2. secondly we want to define a model of integrated intervention among various professionals, which can be planned and monitored using the same computerized tool.

For the first area, in addition to the design and implementation of the protocol, we will pilot a test to identify the critical variables that characterize the process of ageing of people with mental disabilities, comparing them to ‘normal’ people (equivalent for age) and with individuals subject to typical aging.
For the second area, we will define lines of action, especially educational ones, which can be implemented in the contexts in which individuals with disabilities spend their time (family and social institutions, rehabilitative institutions or hospitals), in order to preserve and, as far as possible, improve the quality of life of people. We believe that such action lines could be applied also to elderly people. All kind of assistance, such as evaluation, will be planned and monitored through a specific software, that can store all the information on people and allow early identification of their specific needs.
The main feature of the software is that it will be ‘open’, in >>>

Timescale

24 months

National and international background

The increase in life expectancy of the general population has also involved individuals with mental disabilities and other diseases, due largely to advances in medical and social fields (Ferris and Bramston, 1994).

Table 1, which summarizes the work of Baird and Sadovnick (1995) concerning people with Down syndrome, eloquently illustrates this process. In Italy, the epidemiological data confirm the international literature: there are approximately 49,000 persons affected by Down syndrome, of which about 10,500 under the age of 14 years, 13,000 of age between 15 and 24 years; 19,000 between 25 and 44 years and 5,000 aged over 44 years. It is interesting and significant to note that the number of people with Down syndrome aged over 25 years is higher than those who are children or young. It is furthermore remarkable to note that this phenomenon has never happened in past.



Table 1. The increase in life expectancy among people with mental retardation



The impact that the increase of age determines on the cognitive processes of people with mental disabilities have been investigated by a number of papers. This contributions have taken into account, in particular, people with Down syndrome, seen as subject to the risk of premature aging and of some forms of dementia. For our goals it is useful to focus on the studies that highlight the processes of deterioration related to age.
In this context >>>