1.2 Changes in emotions, relationships and affections

The process of aging, and specifically its beginnings, is usually accompanied by emotional and affective changes that will affect the behavior and/or personality of the individual. These changes are manifested more clearly in people with learning disabilities who are in this process due to the adaptation difficulties they present, as well as the lack of coping resources and preparation for assuming them.

Relevant modifications in the aging process at an emotional, relational and affective level in people with learning disabilities.

To finish making an approximation to the modifications that occur in the aging process, it is worth highlighting two types of important changes that have been observed in occupational centers where people with learning disabilities attend and that are at the beginning of said process.

The most significant changes in relation to the area of personality and health that can be observed in people with intellectual disabilities:

Area of personality and emotional health:

• Loss of autonomy in walking
• Loss of stability/balance
• Fatigue and/or drowsiness
• Emotional and/or behavioral alterations -lability, apathy, irritability
• Mood swings, withdrawal, inhibition, aggressiveness
• Exaggeration of personal characteristics
• Tendency to isolation
• Lack of communicative intention

Aging and learning disability – Emotional changes

Aging must be understood as a process that encompasses multiple facets (bio-psycho-social), perfectly distinguishable from each other. Although, as a whole they constitute an indivisible whole. Therefore, in older people with learning disabilities, the interaction between these biological, psychological and social aspects is the most important factor for optimal functioning or not at all levels; for adaptation or maladjustment and is what will determine the quality of life of people with learning disabilities who age. For this reason, we have to ask ourselves: What are the needs of these people in their aging process that will be affected by the physical, psychological and social changes associated with advancing age, and how will the necessary support be provided?

Knowing the characteristics of this “senior age” is the fundamental starting point to achieve improvement in their quality of life and to ensure quality in support and services. This must also entail a continuous evaluation that is an integral part of their planning, in order to allow improvement decisions to be made during their implementation and reformulate action plans and strategies (Fetterman, 1996).

Also, the recognition of the logical aging process in relatives (especially parents), the change of activities to promote personal autonomy, and the knowledge of the needs of relatives with someone affected by learning disability, are important elements of analysis that must be taken into account. In recent years, health and cognitive development programs have been developed for people with learning disabilities, but it is a path that is still beginning. It will be necessary to bear in mind the fragility of these people in the face of cognitive deterioration and their emotional problems; and above all that fragility and dignity are two sides of the same coin.

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 organisations that support you, or welcome you as a residential resource, and the society itself, and feeling like an active citizen. 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 other ancestors. 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. The environment that surrounds him is what makes him stronger or weaker, the one that serves as support and encouragement or leaves him to his own devices subject to his 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, when the 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 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 and Services of support (Help at home, in community participation, etc.)

The elderly with learning disabilities may have significantly higher rates of psychiatric illness, mainly due to the appearance of dementia, paranoia, etc…; as well as psychic disorders: memory loss associated with age, 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 age, tend to be calmer, more patient, more accepting, and 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 lability, some irritability and certain adaptive and relationship disorders are reflected.

As a whole, the fact that the elderly with learning disability is exposed to, at least, the same type of medical problems (excluding mental ones) as the rest of the population is pointed out. There are pathological pictures whose prevalence seems to be higher, such as sensory or others depending on the specific attributes 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 symptoms are attended to.

We will have to be very careful to detect early indicators in the sense of the aforementioned 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 keep in mind that no matter what mental age or skill level they have reached, they still have the benefit of living and learning.

Some tools for assessment and diagnosis of cognitive impairment

The evaluation and diagnosis of cognitive impairment in older people with learning disabilities are always a complex task. Professionals and families must make regular observations of cognitive and behavioral aspects and their possible changes. If in the general population there is a great inter-individual diversity of the variables that influence the different capacities throughout life and determine the state in old age, in the case of people with learning disabilities the diversity in character is even greater.

It is especially difficult to make an accurate diagnosis of mental health problems in people with learning disabilities precisely because of the “overshadowing” effect of the disability itself (Reiss et al., 1982), and even more so in old age.

Until now, cognitive tests have been used to a large extent, which are not very suitable for this type of population, since they usually have a high linguistic content and this can prove challenging for those with learning disabilities. It is very important to achieve greater diagnostic precision in the initial phase of the aging process, as well as prevention and/or intervention in accordance with the needs of people. Diagnosis becomes even more difficult as these people get older.

We know that the group of people with learning disabilities is complex and very diverse. Their support needs and their intensity will vary depending on the different disabilities, their degree and the person who suffers from it. Therefore, we cannot understand the aging process of these people as a unitary process or speak of a specific way of aging for a certain group or type of disability. The aging process is, as in the rest of the population, highly variable and individual differences, the way in which each person has experienced the stages prior to old age and the level of quality of life achieved, as well as socio-type factors -political, cultural, health, etc., will be the keys to define this process. Fine-tuned assessment and treatment of people with learning disabilities is not always a simple task.

When it comes to evaluating cognitive impairment, for example, on the one hand, tests validated for the general population are being used and they may not be sensitive when it comes to differentiating cognitive impairment associated with learningdisability, for example, the Wechsler scales.

Problems may arise when it comes to determining what the person feels, if they have problems expressing their feelings or understanding the demands made on them, etc… Therefore, it is advisable to use at least one standardised measure adapted to the population with intellectual disability that allows us to obtain a neuropsychological baseline, a starting point from which to carry out repeated measurements that are later compared over time and allow us to evaluate the magnitude of the change or cognitive deterioration in the person with learning disability.

From the point of view of cognitive and behavioural evaluation, it will be necessary to apply the use of certain psychological evaluation scales that have been progressively adapted and perfected for their application in people with learning disabilities.

Ageing and learning disability: recommendations

A first general recommendation will be that, given that people with learning disabilities will outlive their parents, it is essential to start an individual planning process in advance in the family environment that designates another person to ensure compliance with the wishes of the person with Learning Disability when they get older, which may well be to continue living in their community environment and not enter a residential center.

On the other hand, we must be clear, both professionals and families, a series of recommendations that promote better aging. As in any type of action framed in the field of disability, all actions must take place within the framework of Quality of Life, attending to all the needs of people:

• Make an effort to preserve their skills, especially those that affect their own dignity (eating, personal hygiene), rather than teaching them new ones.
• Minimize changes in environment and daily routine.
• Simplify routines and reduce choice to minimise anxiety and frustration.
• Have patience, redirect and make verbal instructions simple, so that it is noted that all attention is directed to support.
• Maintain your awareness as much as possible, bringing up memories and talking about past experiences.
• Help them to maintain orientation based on announcing the events that are going to happen during the day, reminding him of the date they lives, the places, naming the people around.
• Do not force them to be in reality, but do not follow their delusional thinking either.
• Give them security every day, even when they does not answer us.
• Try to understand words and symbols used for communication.
• Be patient and do not try to make them come to our land but on the contrary: we go to theirs.
• Give the food and liquids necessary for nutrition and hydration.
• Consult the doctor when it is seen that a medication is no longer useful; but assume responsibility when it is necessary to give them some medication.
• Reduce the risks of accidents that may arise during personal hygiene (slip floor, shaving), anticipating them and adopting measures.
• Send affection and protection with a calm voice, make physical contacts to give them security, or to praise them.
• Provide a familiar, safe environment, with supervision to avoid confusion and insecurity.
• Maintain the current level of independence based on increased supervision by staff and their rapid and effective response to needs.
• Modify the individual’s schedule, or plan ahead for activities of daily living and supervision needs, when necessary.
• Track and note changes in episodes of confusion, disorientation, memory lapses, to be better prepared if they recur.
• Continue to assess your mobility, safety, and daily living needs.
• Inform the staff, relatives and caregivers about the changes and strategies foreseen in the care plans.
• Try to identify the factors that cause inappropriate or dangerous behavior, and try to reduce the probability of their recurrence.

Aging and quality of life

The concept of “Quality of Life” of people with disabilities has been gaining importance in recent years. It has become a central theme of productions, both professional and scientific.

Yes, it should be remembered that the quality of the aging of a person in general, and of a person with learning disability in particular, depends largely on the quality that they have had throughout their life, the degree to which their life has had a project and it has been followed with constancy. The more you have owned, the more you will retain or the longer it will take to lose it. And this serves to get them to continue carrying out some activities, in personal grooming, in maintaining communication, etc.

We have to keep in mind that no matter what mental age or skill level they have reached, they still have the benefit of living and learning. It is stimulating to continue learning throughout life, as well as to enjoy the leisure of social aspects, fun, etc… This will make you feel much happier now and your self-esteem will be higher. Without self-esteem there is no authentic life: desire to live, enjoyment, desire to excel. But it is impossible for you to instill them with self-esteem if you do not first have respect for them. If you do not consider them capable of improving, of advancing, of becoming an autonomous person, of developing capacities. When the expectations that are held, on the contrary, are negative, this is transmitted through gestures, words, attitudes.

Finally, when life puts an older person with a learning disability by our side and in our charge. We have to respond in a committed way. They are a family member, a patient, a neighbor… We must respond to that call with a truly vocational spirit, in the highest sense of the term. In a committed way to help that person, regardless of their age, develop and come to live following the lines of action that knowledge provides us.

With patient, active, constant enthusiasm. We will have moments of decline, and setbacks. Only our good personal and professional action will be able to change and improve, little by little, the care and effective support that this person requires. Let us respond as our elders deserve and ask us. We will have to provide you with the necessary support so that you can enjoy the highest possible Quality of Life. We have to be very clear.

There is a growing need and interest in how these people age and what measures we have to put into practice to support them in this process.