1.3 Emotional well-being

One of the priority action strategies in terms of Emotional Well-being, indicated by the World Health Organization, refers to improving knowledge and our sensitivity towards those stressors related to the general aging process that can exert a negative influence (from the point of view of emotional well-being) in older people with LD, as well as improving the detection and evaluation of mental health conditions such as depression, anxiety or dementia in those with LD who they grow old.

According to the World Health Organization (WHO), emotional well-being is defined as “a state of mind in which a person is aware of their own abilities, can cope with the normal pressures of life, work productively and contribute to the community” (Wellbeing, 2020).

Emotional well-being, as its name suggests, is closely linked to emotions that are defined as follows:

“Emotions are mechanisms that help us react quickly to the events that take place in our day to day. They are automatic impulses for us to act according to the environment and their mission is that we manage to adapt to everything that happens to us” (Well-being, 2020).

The expression of emotions in people is closely linked to the functionality of language. Focusing on people with learning disabilities, many of them have problems communicating, which generates significant limitations for them to express or perceive their own emotions and those of other people.

In this line, following the Guide “Good Practices in the care of people with intellectual disabilities” prepared by the Center for Documentation and Studies SIIS (2012), the studies indicate that people with learning disabilities:

• They have some difficulty adapting to very intense emotions, which tend to generate confusion in these people.
• They have difficulty perceiving, recognizing and understanding the emotions that others convey through their facial expressions.
• They have some difficulty when it comes to perceiving their own emotions.
• For other people, it is difficult to detect the emotions of people with learning disabilities, due to the latter’s difficulty in expressing what they are feeling.

To facilitate the detection of problems in the emotional well-being of people with mild or moderate learning disabilities, it is possible to resort to the use of some instruments such as self-reports, in which the person themselves reports their own emotions.

On the other hand, in people with severe, profound and multiple learning disabilities it is more complicated to detect their emotions, however, certain behaviors may indicate changes in their emotional well-being, such as changes in appetite, in expression facial, self-harm, isolation, crying…etc. In these cases, observation seems to be the most appropriate methodological procedure to address the study of emotions in people with moderate or severe learning disabilities.

The emotional well-being of people with learning disabilities in their aging process should serve as a guide for how to face and plan this final stage of their life in a satisfactory manner. We know that aspects such as the magnitude of individual reactions to stressful situations can accelerate the aging process due to the negative effects on cognitive abilities, self-esteem and self-perception of competence, normally due to the repetition of negative experiences and sometimes to poor social support.

According to Berzosa (2013), aging is an individual process, but aging well includes a social component, since it also involves the family with which you live, the organizations that support you, or welcome you as a residential resource, and the society itself.

To do this, to age well, it will be necessary to prepare the person over time with skills and abilities that allow them to face aging as actively as possible. In this sense, intervention programs have a crucial role. To a certain extent, for any of us, our aging process will be conditioned, not only by our way of life, but also by the quality and lifestyles of our parents and others.

Psychological changes characteristics of the aging process

As people get older, certain difficulties are accentuated that will vary greatly depending on the living conditions they have had. Individuality is the determining principle that encompasses the life of every person, and not least when it comes to a person with learning disabilities. But that individuality does not live isolated, but is under the permanent influence of its environment.

And that environment that surrounds them is what makes them stronger or weaker, the one that serves as support and encouragement or leaves them to their own devices subject to their limitations and weaknesses. The main psychological indicators typical of the process of getting older in the general population serve as a reference to identify the different cognitive, behavioral and emotional changes of people with learning disabilities. People with learning disabilities who age have a double condition: advanced age, together with the biological processes associated with it, and a limitation not only in cognitive and emotional aspects, but also in adaptive behavior inherent to the disability.

Adaptive Behavior thus becomes the central aspect of current definitions (HH.SS, verbal and non-verbal communication, skills related to the expression of emotions, social and community integration, etc…) which, therefore, by reaching old age requires more significant and in many cases practically permanent support for each of the aspects of autonomy. The current services for the elderly in Spain, in general, aspire to be defined according to a Functional Support Model whose objective is to achieve the inclusion of this group in the different contexts of life in which they carry out their daily activities both of daily life (AVD) as instrumental (IADL) (Helps at home, in community participation, etc.).

The elderly with learning disabilities may have significantly higher rates of psychiatric illness, mainly due to the onset of dementia, paranoia, etc…, as well as psychic disorders: age-related memory loss, neurotic rituals; emotional disorders: loneliness, depression, drowsiness, irritability, emotional lability, insecurity and anguish; behavioral disorders: apathy, lower motivation, aggressiveness, boredom and disinterest; others: isolation, reduction of friendships, loss of the ability to acquire new skills, loss of family support, need for more support to carry out all activities of daily life, etc… On the other hand, people with learning disabilities, as they get older, they tend to be calmer, more patient, more accepting, make more thoughtful decisions. But they may be less flexible to changes, or to learning new things.

At a cognitive level, we know that the aging process usually affects mainly memory, language, visuospatial skills, executive functions and praxis. In relation to behavioral changes, it seems that apathy and inactivity, as well as decreased levels of attention, interest and motivation for things, decreased initiative and speed of information processing, are usually frequent. With regard to emotional changes, mood swings and emotional ability, some irritability and certain adaptive and relationship disorders are reflected.

As a whole, the authors point to the fact that the elderly with Learning Disability are exposed to, at least, the same type of medical problems (excluding mental ones) as the rest of the population. There are pathological pictures whose prevalence seems to be higher, such as sensory or others depending on the specific cause of their learning disability. And all this may have its repercussions on certain psychological aspects. Also enormously important is the fact that elderly people with even slight disabilities do not spontaneously present complaints that draw attention to their pathological process; and thus tolerate significant sensory disturbances, chest pain, dyspnea, dyspepsia, or urination-related problems, or express symptoms entirely atypically: by increased irritability, inactivity, loss of appetite, sleep problems. Sometimes, the pictures reach a severity that is difficult to detect if only what is considered the characteristic symptomatology is attended to.

We will have to be very careful to detect early indicators in the sense of the peculiarities. Therefore, new questions arise, and new forms of support, evaluation and intervention are unavoidably required to comprehensively meet the demands of older people with disabilities in this new stage of their lives and those of their families and professionals in charge. Let us always bear in mind that regardless of their mental age or the level of skills they have reached, they continue to enjoy the benefit of living and learning.

The percentage of people with a dual diagnosis (Learning Disability and mental illness) range between 30-35% (National Association of Dual Diagnosis, NADD), with depression and anxiety being the most frequent mental health problems during adulthood. Stress has been identified as one of the factors that contributes to the greatest extent to the presence of psychological disorders in the group of people with LD.

Some priority lines of action in this dimension are:

1. promoting strategies to deal with the stress derived from the changes associated with the aging process;
2. training of professionals in dual diagnosis and gerontology.
3. attend to all those environmental situations that could exert a positive impact on the adaptive abilities of people with learning disability who age or could lead to the reduction of behavioral problems or stressful situations that could trigger alterations at a psychological level;
4. development of strategies that favor the understanding of grief and provide the person with LD with strategies to deal with it.

Emotional Well-Being can be defined based on aspects such as satisfaction (being satisfied, happy and content), self-concept (being comfortable with one’s own body, feeling valuable), or the absence of stress (have a safe, stable and predictable environment). Despite the stereotypes that still exist regarding the aging process and even taking into account the changes associated with age, old age can be a positive and satisfying stage in which you can continue learning from an emotional point of view.

In the group of adult people with learning disabilities, life satisfaction has been related to community environments, regular or supported employment, and social support, among others. Therefore, emotional wellbeing should not be understood in isolation but rather in constant interaction with the rest of the dimensions that make up the quality of life construct.

However, and as it happens in the general population, the emotional well-being of people with learning disabilities in the aging process can be affected by all those factors or vital situations that can precipitate the appearance of a mental or behavioral health problem (depression after the loss of a loved one).

Although this section will focus specifically on psychological aspects of the aging process of people with learning disabilities and those events that could affect their emotional well-being (grieving processes), we must not forget that the interaction of these factors with others of a biological or social nature is what, ultimately, will determine the quality of life of people with learning disabilities who age.

In this way, factors such as a healthy lifestyle and diet, access to valued activities, health and well-being in the home environment, the appropriate emotional response to the separation or death of parents, among others, can minimize the stress that otherwise it could lead to behavioral or psychological changes.

In this sense, one of the goals established by the World Health Organization in relation to active aging is to improve knowledge and our sensitivity towards those stress-generating factors related to the general aging process that can exert a negative influence from the point of view of from the point of view of emotional well-being, as well as to improve the detection and evaluation of those aspects of mental health such as depression, anxiety or dementia in those people with learning disabilities who age.

Needs and psychological aspects of people with learning disability who age

Mental health

People with Learning Disability as they age can experience a wide range of mental health problems, including anxiety disorders, mood disorders, schizophrenia, personality disorders, or related to substance abuse, among others

The figures vary from one study to another, but they all agree in affirming high rates of mental health problems in this group. Some authors have pointed out that the percentage of adults with Learning Disability with some psychological disorder is 2 to 4 times higher than in the case of younger people with Intellectual Disability and the general population, while others date this prevalence at 30-40 % depending on the diagnostic systems used.

Despite this last aspect, most professionals tend to assume that the percentage of people with a dual diagnosis (learning disability and mental illness) ranges between 30-35%.

Among the most frequent mental health problems are depression and anxiety. On the other hand, in people with Learning Disability, the presence of behavioral problems is the most frequent reason for consulting mental health services. However, as Salvador-Carulla and Novell (2003) point out, although there is no direct relationship between behavioral changes and mental health problems, it is still difficult for us to discern the former from the latter.

Some behavior problems can be increased by the presence of a mental health problem, while those decrease during adulthood and old age. However, they can be increased if there is an associated dementia process.

Some authors suggest that the high prevalence of psychiatric disorders in older people with Learning Disability is the result of the combination of three types of factors:

1. a) those that affect the entire population in general
2. b) those that affect the elderly in particular
3. c) those that affect people with learning

Furthermore, we cannot forget that behavioral changes and mental health problems are the result of an interaction between numerous factors and mechanisms: biological, psychological and social. Some disorders may be triggered by biological or biochemical factors (e.g., psychosis), while others may be precipitated by stressful situations or learned helplessness (e.g., depression).

The American Association of Dual Diagnosis (NADD) points out stress as one of the factors that contributes to the greatest extent to the presence of psychological disorders in the group of people with learning disabilities. People with Learning Disability, throughout their life cycle, have to face numerous situations that can contribute to increasing their stress levels, such as social exclusion, stigmatization or lack of social support. This, together with the difficulty in implementing adequate coping strategies, difficulties in communication, the possible absence of a social support network, and the higher prevalence of alterations of the Central Nervous System, increases the risk of mental illness in people with Learning Disability.

As Thorpe et al. (2000) point out, the individual response to adverse reactions or stressors that could trigger, for example, mood disorders such as anxiety or depression, can be negatively affected by limitations in intellectual functioning or deficits: cognitive impairments, low self-esteem, or poor social support. Institutionalization and increased consumption of psychotropic drugs have also been related to a greater presence of behavioral and psychiatric disorders. The psychosocial stressors that people with Learning Disability may experience (transition, personal loss or rejection, etc.) often precipitate a deterioration in their emotional or behavioral well-being and can lead to significant impairment in their functioning. Eliminating or reducing the presence of this type of stressor in the individual’s environment is usually the first action to be carried out in the intervention aimed at reducing behavioral problems.

People with a dual diagnosis (mental illness and Learning Disability) often face more obstacles in accessing mental health services than their peers with Intellectual Disability without dual diagnosis.

These barriers include the person’s limited ability to communicate their symptoms and the need to rely on information provided by third parties, inappropriate use of psychiatric medication, the existing fragmentation between social services and health services. (Reiss, 1993) and the scarcity of professionals (direct care staff, nurses, general practitioners, psychiatrists, psychologists, social workers) duly trained in working with people who have both learning disabilities and psychological difficulties in the last years of his life.

In the specific case of people with Learning Disability in the aging process, research has revealed the existence of high rates of problems related to mental health, derived in part from the scarcity of strategies to deal with stress derived from the changes associated with the aging process place the prevalence of mental health problems during the aging process at around 10%, although some conditions see their presence increase with age, as is the case of dementia (especially in those with Down syndrome).

Mental health problems in aging people with Learning Disability can have a very negative impact both cognitively and emotionally. Unfortunately, although the diagnosis of mental illness is already complex in the group of people with Learning Disability in general, attributing the symptoms of mental illness to intellectual disability can be even more difficult in people with Learning Disability who age. The diagnosis is made difficult in turn by the erroneous association of the symptoms of psychological disorders with the changes associated with the aging process. Finally, family members or support persons may have problems when it comes to identifying symptoms associated with mental illness, making it even more difficult to detect this type of pathology.