A distinctive ageing: Age and people with intellectual disabilities

People with intellectual disabilities have seen their life expectancy increase in recent years to match that of the general population. The aging of each person will depend on the events experienced throughout their lives, their illnesses, and the psychosocial aspects of their environment. In spite of this, in the case of people with intellectual disabilities, there is evidence of a peculiar way of aging, with significant changes with respect to the general population that affect the age of onset of the first symptoms of aging, and physical, emotional, and health status changes. This article performs a systematic review of the literature to demonstrate the peculiarities of aging in people with intellectual disabilities, concluding on the need to know these changes to adequately guide professional care and thus improve their quality of life.

Introduction

Studies show that there is no single way to age. Each person ages differently depending on their state of health and vulnerability to diseases, and also because of the more or less healthy habits they have followed in their lives [1].

In the case of people with Intellectual Disabilities (IDPs), this individual nature of aging is shared by most authors who in recent years have addressed this phenomenon [2,3], being as variable as it happens in the rest of the population, and will depend on how the stages prior to old age have been lived [4]. There is an agreement, however, in pointing out aspects that can be very generalizable to all IDPs, with respect to the age of onset, some physical and behavioral changes, and especially with respect to the influence of situations that occur in the life of the person with disabilities throughout their life cycle, this variability being higher the older the IDP [5].

Methods

This study is based on a systematic review of the scientific literature, as well as manuals and results of studies related to the aging of people with intellectual disabilities. In order to contrast the results obtained in this review, these have been subjected to expert judgment, which has allowed us to reach a consensus on the information provided.

Results

All research highlights the idea that aging or deterioration occurs prematurely among this group of people, being also a reason for the additional need for professional support [6]. There is some consensus in bringing forward to 45 years the moment in which IDPs begin to develop signs of a functional decline that indicates premature aging [2,4,5,7-9], present two symptoms of aging that are perceived in the rest of the population between 65 and 70 years [5].

With regard to the causes of aging, the Seneca Report [8], concludes as the causes of this premature aging are the lack of prevention and health monitoring programs throughout their lives, which is added reduced access to health services and low quality of social and health care received, that have caused the deficits of the IDPs to increase over the years. This issue is shared by Berjano and García [5], who also add the lack of specialization of health professionals; communication difficulties; and the inability of many IDPs to explain the symptoms and their ailments, which cause many diseases to be left without an accurate diagnosis and adequate treatment. The IDPs”is less aware of its own aging than the general population”, according to Rafanell [3], so they will ask for help later if it does, and if there is no correct system of supervision and monitoring of its health, it will not be possible to act immediately before the first symptoms of aging. Moreover, sometimes the expression of symptoms is done in an atypical way, through, for example, irritability, inactivity, or sleep problems [8,10].

In short, as IDPs age, they face a double situation of vulnerability. On the one hand, advanced age, or rather deterioration produced at younger ages, with associated biological processes. On the other, they face their own limitation in cognitive and emotional aspects and in the adaptive behaviors that define intellectual disability. The importance of support in activities of daily living and instrumental activities must be reinforced, trying to maintain as much as possible autonomy of each person [4].

Although diseases affect IDPs equally with respect to the general population, it is true that IDPs will present a set of changes that Berjano and García [5] classify into physical changes; changes at the cognitive level; at the social level; and at the emotional level.

At the cognitive level, IDPs are slower in the reaction process to certain stimuli and alterations in memory from the age of 45, which added a decrease in sensory and perceptual functions, which increases risk situations before, for example, the handling of machinery and a decrease in the ability to solve problems [11].

As for the emotional and social levels, the study of Berjano y Garcia [5] published by Plena Inclusión, indicates that there can be a loss of self-esteem, difficulty in adapting to changes, and an increase in fear of new situations, related to housing or the modification of leisure habits, interpersonal relationships and the loss of their reference persons.

The physical changes are, perhaps, the most coincident with those of the aging population without disabilities, although they occur much earlier: hearing loss; respiratory complications; weight gain, possibly due to the absence of healthy eating habits and the appearance of musculoskeletal disorders, among others [12].

For Rafanell [3], there are two expressions of aging in IDPs: geriatric syndromes and cognitive problems. The first is typical of old age, such as falls, or affective problems, with the peculiarity in this case of their high frequency, which is the cause of high morbidity and mortality and produces a significant deterioration in the quality of life.

Regarding cognitive problems, the author distinguishes three typologies: normal aging without cognitive impairment; aging with mild cognitive impairment, which will be difficult to diagnose in IDPs; and pathological aging with dementia. Executive functions will fail and the quality of occupation and work tasks will decrease. The feeling of frustration and irritability will increase. There is less tolerance for improvisation and a marked preference for routine. In addition, irritability and apathy increase and there is a tendency to withdraw. Irritable, susceptible, and rebellious characters will increase, so we must try not to diagnose behavioral disorders where there is aging, and take into account the early indicators of dementia such as memory impairment; affective disorders; difficulty finding oneself; and occurrence of epileptic seizures, which IDPs are more at risk of developing, between 11% - 14% above 50 years and 20% after 65 [3].

Knowing these changes and detecting them properly attributing them to their aging process, despite having an early age, is key to ensuring proper care for people with intellectual disabilities. Professionals and families should know and identify that what is happening to the IDP is not, at least, a behavioral problem, but simply that it is aging and probably requires a different and more appropriate intervention model.

The authors declare that this article complies with ethical standards and, in particular, with the provisions of the Declaration of Helsinki for research involving human subjects and other applicable regulations.

1. Verdugo MA, Gómez LE, Arias B. Assessment of quality of life in older people: the fumat scale. La Escala Fumat. Kadmos. 2009; 96.
2. Aguado A, Alcedo MA, Rozada C, González M, Real S, Fontanil Y. Calidad de vida y necesidades percibidas de las personas con discapacidad intelectual en proceso de envejecimiento en Castilla y León: avance de resultados. En M.A., Verdugo, (Coord.), Aplicación del paradigma de Calidad de Vida. 2010; 117-137.
3. Rafanell A. Aging and intellectual disability. 2017; 71-77.
4. Del Barrio JA, Sánchez A, González-Santos J. Retos del envejecimiento de las personas con discapacidad intelectual. INFAD Revista de Psicología. 2016; 1: 47-56.
5. Berjano E, García E. Discapacidad intelectual y envejecimiento: un problema social del S. XXI. Colección FEAPS. 2010.
6. Elorriaga E, Restrepo W, Bayarri V, Fillat Y. Envejecimiento y deterioro de las personas con discapacidad intelectual en el ámbito ocupacional y de empleo en Bizkaia. Zerbitzuan. 2012; 119-135.
7. Aguado A, Alcedo MA. Necesidades percibidas en el proceso de envejecimiento de las personas con discapacidad. Psicotherma. 2004; 16(2): 261-269.
8. Novell R, Nadal M, Smilges A, Pascual J, Pujol J. Informe Séneca. Envejecimiento y Discapacidad Intelectual en Cataluña 2000-2008. Federación Catalana Pro-personas con discapacidad Intelectual. http://www.dincat.cat/fichero-21051_21051.
9. Verdugo MA, Rodríguez A, Sánchez MC. Families and people with intellectual disabilities in the aging process. The double dependency. 2019; 192.
10. Flórez J, García B, Fernández Olaria R. Down syndrome: Neurobiology, neuropsychology, mental health. Bases for intervention in learning, behavior and mental well-being. Madrid: CEPE Ibero-American Foundation Down21. 2015.
11. Vicente MJ. Últimos avances en el estudio del envejecimiento de las personas con discapacidad intelectual. Jornadas de envejecimiento FEAPS. Pamplona, noviembre de 2005.
12. Otamendi N, Navas P. Quality of life of people with intellectual disabilities in the aging process in housing environments. 2018; (6), 2, 27-47.