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 quality of life for impaired people.
In order to achieve these goals, the project is divided into five work packages (WP) covering the main areas of interest. Each WP is coordinated by one of three research units and is made up of several specific tasks, which may include the intervention of other RU besides the coordinator one.

The work packages are identified as follows:
WP 1 selection of the tools for the evaluation (assessment system) of the first signals of decay associated with elderly age;
WP 2 adaptation of the tools to the needs of elder people with mental disabilities or behavioural problems caused by other factors;
WP 3 preparation of the software for the management of the functional assessment protocol;
WP 4 test of the model on samples of elderly people with mental disabilities and behavioural problems determined by other causes or by typical ageing;
WP 5 – writing guide-lines for the interventions, whose goal is to preserve (or to improve) the quality of life, and pilot testing of the model. This model will be tested on samples of individuals with mental retardation and typical ageing.

The results of the project could produce advancement of knowledge in this area and the delineation of shared integrated assessment and intervention models. Important outcomes could also be produced at application level, with the delineation of a working methodology applicable in social, health, recreational and rehabilitative services for elderly people with mental disabilities or behavioural problems determined by other causes. This methodology can be generalized and applied to services for the elderly in typical aging. <<<

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 to ageing and loss of functionality?
3. Which actions have to be undertaken for priority intervention in a process of containment of decay? Is it right to limit to pharmacological therapy? Isn’t it worth to evaluate and educate people to healthier lifestyles, particularly for dietary habits, inactive lifestyle and management of leisure? Rehabilitative interventions have to be adapted to elderly people. It would be recommendable to promote care, educational and recreational services aimed at senior citizens. But, as a matter of fact, how could we effectively combine these dimensions?

The last observation raises a fundamental question, which is at the base of the research project we are proposing. Ageing in people with problems of various kinds and disabilities can not be considered only in a purely medical perspective. Indeed, compromised organic functions affect also the level of the social inclusion of a person, his/her chances of independent living and, finally, his/her psychological well-being. These difficulties, in turn, may further complicate the physical aspects: just to make a few examples, we can imagine the effects on the preservation of motion due to the reduction of outside activities or pathological modification of the diet always due to the narrowing of functional autonomy.
The problem is often complicated because many professionals (doctors, psychologists, educators, nurses, assistants, etc.) are unable to find a common language and a conceptual framework to place these various issues related to ageing.
This research project wants to front all these problems, taking as reference a unifying framework represented by the concept of Quality of Life (QoL).

Specifically, the project include two macro-areas of intervention:
1. development of a computerized evaluation system that could allow to investigate on cognitive decay and lifestyles of elderly people with mental disabilities or behavioural problems determined by other causes. The tool must be flexible and adaptable, in order to include multidisciplinary assessment tools and be open to further developments;
2. creation of an integrated model of intervention concerning different areas that can be organized and monitored using the same tool. This intervention, with prominent focus on health education, will be finalized on the following goals, which are central to the prospect of improving the quality of life:
- preserve the skills necessary for an autonomous life, such as the ability to move in the community, use public transport, use telephone or money, etc.. ;
- limit the deterioration of some cognitive prerequisites, such as spatial orientation or working memory, which are the base of these functional abilities;
- promote healthier lifestyles, mainly related to diet;
- promote self-determination, so that the individuals can provide personal meaning for the events in their lives.
- preserve an acceptable level of self-efficacy involving the elderly person in meaningful activities, with which he can experience success. <<<

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 order to allow at any time additional assessment tools and intervention models that the different figures of professionals involved with elderly people can develop.

The results we aim to achieve with the research can lead to advancements in the field of interest, because, as already pointed out, there is currently a gap: no model is available for a uniform, flexible and modular intervention, that can produce the evaluation of the decay associated to ageing in people with mental disabilities and can help coordinate the actions of various professionals, directed to improve the quality of life. The main areas of application of the results of this research project will be those of social services, recreation, welfare and rehabilitation for people of elderly age with mental disabilities and behavioural problems determined by other cause. This application can be generalized to a large part also to services for the elderly in typical aging. <<<

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, the research (for a recent review of studies see McCallion and McCarron, 2004; Walsh, 2005; Cottini, 2006) has substantially emphasized a decline linked to the increase of age among people with mental disabilities, even if this is not absolute and is not equally distributed among all functions. In addition to the risks for physical and sensory functions, deterioration can affect the following skills:
- the speed of response;
- long and short term memory;
- the linguistic capabilities;
- the process of operational control;
- the adaptive capacity, i.e. the possibility to live adequately in the social environment, preserving adequate lifestyles (especially dietary habits and motion).

It should be emphasized that these pathological conditions associated to the increase of age could be prevented (or at least limited) through special integrated interventions. Thus the importance of stimulation of cognitive and motion skills, the preservation of a network of stable relations, the self-determination in choosing the foods. In this research project we will focus specifically on these issues.

Many researches stress the need to refer to assessment tools specifically developed for analyzing any early decay process and the importance of providing various kinds of interventions, which invest both the medical and the educational level (with particular reference to the need to preserve good standards of independence, to stimulate the cognitive functions, to promote healthier lifestyles for both diet and motion habits). It is furthermore important to support the family and to take care of the living conditions (Strydom and Hassiotis, 2003; Silverman, Schupf and Zigman, 2004; Sturmey, Tsouris and Patti, 2003; Cottini, 2003; Braunschweig et al. , 2004; Heller and Rimmer, 2004, Cottini and Lani, 2005). The reference is essentially to the concept of quality of life (QoL), that may represent a valuable framework for the interpretation of the various contributions on aging and the plan for multidimensional interventions.

The QoL could represent the goal of any intervention (medical, psychological, etc.). It represents also the parameter to verify the effectiveness and efficiency of various educational, therapeutic and rehabilitative actions. The approach to the concept of QoL which is adopted in this research is the so called ‘functional subjective’ one (Rosen, 1995; Velde, 1997; Fern, 1997, Faithful, 2004), which is characterized by two main guidelines:
- first of all there is the subjective vision of QoL; this means that the same objective indicators (such as the possibility of working in a protected laboratory in the presence of an organic disease) are considered according to the personal meaning ascribed to them by the person;
- secondly, the importance attributed to an objective indicator is weighed according to the possession of skills necessary for the management of this indicator.

This approach has major consequences for the assessment of the person with problems. The focus of any intervention, in fact, must apply directly to the evaluation of the preserved skills and of the affected one, in order to satisfy the personal expectations in various areas of life: social, business, emotional, etc.. (Storey, 1997).
Promoting QoL means enforcing the skills necessary to put realistic goals in one’s life project, in order to develop and preserve a positive image of him/herself and coherent with his/her aspirations.



Bibliografia essenziale di riferimento

? Baird, P., &amp; Sadovnick, A. (1995). Life expectancy in Down syndrome. Lancet, 2, 1354-1356.
? Braunschweig C.L., Gomez S., Sheean P. , Tomey K.M., Rimmer J., Heller T. (2004). Nutritional Status and Risk Factors for Chronic Disease in Urban-Dwelling Adults With Down Syndrome, American Journal on Mental Retardation, 109, 2, 186–193.
? Cottini L. (2003). Bambini, adulti, anziani e ritardo mentale. Brescia:Vannini.
? Cottini, L., &amp; Lani, B. (2005). Progettazione, conduzione e monitoraggio di interventi educativi e riabilitativi. American Journal of Mental Retardation (Edizione italiana), 4, 495-500.
? Fedeli D. (2004). La Qualità della Vita nelle persone con disabilità. Problemi metodologici e prospettive di ricerca. Disabilità evolutive, 17.
? Felce D. (1997). Defining and applying the concept of quality of life. Journal of Intellectual Disability Research, 41, 126-135.
? Ferris C. &amp; Bramston P. (1994). Quality of life in the elderly: a contribution to its understanding. Australian Journal on Ageing, 13, 120-123.
? Heller T., Rimmer J.H. (2004). Attitudinal and Psychosocial Outcomes of a Fitness and Health Education Program on Adults With Down Syndrome, American Journal on Mental Retardation, 109, 2, 175-185.
? McCallion, P., &amp; McCarron, M. (2004). Ageing and intellectual disabilities: a review of recent literature.Current Opinion in Psychiatry, 17 (5), 349-352.
? Rosen M. (1995). Subjective measure of quality of life. Mental Retardation, 33, 31-34.
? Silverman, W., Schupf, N., &amp; Zigman, W.B. (2004). Dementia assessment at a single point in time. American Journal on Mental Retardation, 109, 111-125.
? Strydom, A, &amp; Hassiotis, A. (2003). Diagnostic instruments for dementia in older people with intellectual disability in clinical practice. Aging and Mental Health, 7, 434-437.
? Sturmey, P., Tsouris, J.A., &amp; Patti, P. (2003). The psychometric properties of the Multi-dimensional Observation Scale for Elderly Subjects in middle aged and older populations of people with mental retardation. Internal Journal of Geriatric Psychiatry, 18, 131-134.
? Velde B.P. (1997). Quality of life through personally meaningful activity. In R.I. Brown (Ed.). Quality of life for people with disabilities. Cheltenham: Stanley Thornes.
? Walsh, P.N. (2005). Ageing and health issues in intellectual disabilities. Current Opinion in Psychiatry, 18 (5), 502-506. <<<