Thanks to the advancement of medicine and the quality of life, people with disabilities have managed to increase their longevity in recent decades (Díaz, 2015). Generally, their caregivers are responsible for providing them with care and affection, creating a very special relationship between them. However, this also implies that people with disabilities must face various losses related to the new life expectancy, and even that they may outlive their parents. According to Díaz (2015), in this situation, it becomes necessary to analyze the keys to mourning for people with intellectual disabilities.
General Characteristics
Grief in children is often hidden, causing fear in caregivers to address the topic of death with them, fearing it may traumatize or terrify them (Díaz Seoane, n.d.). This situation worsens when dealing with grief in children with intellectual disabilities, as they are generally treated as children throughout their adult lives. Additionally, individuals with intellectual disabilities are often undervalued by the adults around them, based on the limited level of knowledge and understanding some of them may reach. Despite efforts to shield these individuals from suffering, pain is present, and they not only perceive the loss but also experience associated problems (Díaz Seoane, n.d.). According to Hernández et al. (2014), it would be better for them to express their grief for the deceased in the company of others, understanding what has happened and receiving the maximum possible and necessary support.
According to recent research, up to 50% of individuals with intellectual disabilities have expressed sadness, discomfort, depression, or sudden behavioral and emotional problems after losing a loved one in the previous six months (Díaz Seoane, n.d.). Previously, it was believed that individuals with intellectual disabilities lacked the ability to cope with grief and associated emotions, and their difficulties in understanding death led their surroundings to avoid anything related to grief. However, according to Díaz Seoane (n.d.), it is now known that it is not necessary to understand the concept of death to experience the emotions associated with grief. Therefore, a shift in perception about the experiences of individuals with intellectual disabilities on this subject is necessary.
The effort often made to conceal death not only affects individuals with intellectual disabilities, isolating them from reality, but also caregivers due to the attitude of concealment they must maintain (Díaz Seoane, n.d.). According to Díaz Seoane (n.d.), the family plays a role in ensuring that the person with intellectual disabilities is the main agent of their life, making decisions and choices about the quality of life freely and without undue external influences or interferences.
The role of the family can be both a facilitator and an obstacle, depending on whether it creates or prevents situations of grief, illness, death of family members, among others (Díaz Seoane, n.d.). It is important to consider that the family has several important responsibilities, including facilitating growth, even the associated suffering, to promote emotional development. It is not about deceiving or hiding situations of illness and death from them but preparing and supporting them based on their abilities. It is essential to inform them about the future and the possibilities they may have, such as who they want to live with, what they desire, etc. Planning for their future, both in legal and dependency terms, promotes the creation of broad relationships so that they have a circle beyond the family. According to Díaz Seoane (n.d.), it is crucial to try to establish goals and objectives with them, help them in decision - making and problem - solving, thus promoting their autonomy.
Regarding grief, it is advisable to allow them to decide whether they want to see the deceased, attend and participate in rituals, express their own feelings, decide whether to go to the cemetery, etc. (Díaz Seoane, n.d.). Díaz Seoane (n.d.) mentions that, to address grief in individuals with intellectual disabilities, it is ideal to provide them with specific coping strategies related to grief, have close grief support resources, offer strategies that contribute to an improvement in the quality of life for individuals with intellectual disabilities, and involve other family members in understanding and addressing grief.
There are various recommendations for entities and individuals interacting with individuals with intellectual disabilities (Díaz Seoane, n.d.). Firstly, it is essential to understand important aspects of the family, such as their culture, customs, and religion, to consider them in situations of loss. Additionally, collaborating with parents to ensure the well - being of the individual with intellectual disabilities after death is crucial, which may involve providing housing and funds, as well as appointing guardians. It is crucial to address the topic of death according to the intellectual development of each individual and provide support during grief, always respecting customs and beliefs. According to Díaz Seoane (n.d.), it is also important to respect the privacy of individuals with intellectual disabilities and provide a space for emotions, accepting them as they come, and empathizing with emotions and feelings.
Each person is unique, and therefore, each grief is also unique. Although there are common aspects, it is necessary to consider the individuality of people (Díaz Seoane, n.d.). When dealing with individuals with intellectual disabilities, it is necessary to balance childlike explanations with those provided to adults. On one hand, efforts should be made to make them understand the irreversibility of death, universality, causes, and interruption of vital functions. On the other hand, according to Díaz Seoane (n.d.), assistance should be provided in accepting the reality of the loss, managing associated emotions, assuming new roles or responsibilities, and learning to live in a world where the deceased is not present.
Dimensions to Address
Emotional Well - Being
Well - being refers to the feelings, emotions, evaluations, and reflections about the quality of life (Díaz Seoane, n.d.). It is crucial to consider that one should not lie about death. This rule applies not only to individuals with intellectual disabilities but to all human beings. According to Díaz Seoane (n.d.), if the truth is concealed, it not only fails to protect the person but also creates mistrust and delays the normal grieving processes.
Feelings associated with loss are one of the first aspects to address, so it is necessary to be attentive to emotions such as sadness, fear, frustration, anger, loneliness, fatigue, and apathy (Díaz Seoane, n.d.). Additionally, it is important to convey that these emotions and feelings are common after the death of a loved one and that this emotional expression should not be interrupted. Comforting mourners by trying to distract them from their pain is not helpful, so expressions like "don't cry," "don't be sad," "you have to be strong," or "you have to be brave" should be avoided. According to Díaz Seoane (n.d.), a good option may be to create a memory box or album for the grieving person to reminisce about certain situations when desired.
Material Well - Being
The goal is to assure the grieving person that their future will be in a supportive environment where others will be available to provide protection if necessary (Díaz Seoane, n.d.). It is equally important to ensure that the person's daily routines and activities will not be disrupted. Routines, including schedules, hygiene habits, nutrition, and activity, are of vital importance and should be maintained, especially after the death of one of the primary caregivers. In short, according to Díaz Seoane (n.d.), it is essential that the basic needs of the person are met, and they are informed of their socio - economic situation according to their level of understanding.
It is beneficial to help individuals with intellectual disabilities select material mementos of the deceased person they wish to keep or gradually dispose of other objects that belonged to that person (Díaz Seoane, n.d.). At this point, in line with Díaz Seoane (n.d.), mourners can be recommended to revisit places they used to visit with the person who is no longer there or expose themselves to memories, family, and activities that may have become particularly painful after the death due to the associated emotional burden.
Physical Well - Being
After the death of a loved one, it is common for a person with intellectual disabilities to show symptoms of anxiety, so it is necessary to pay attention to associated bodily sensations, such as a feeling of suffocation, chest pain, general discomfort, insomnia, and fatigue (Díaz Seoane, n.d.). In this context, it is crucial for the mourner to resume their daily routine and normalize their everyday habits of sleep, nutrition, and personal care. Therefore, rules and customs should be maintained whenever possible. These norms often provide stability in a world that seems to be crumbling. It should not be forgotten that the person should gradually resume those enjoyable activities they participated in before the death. Finally, Díaz Seoane (n.d.) mentions that if the person is undergoing pharmacological treatment, it is of utmost importance not to stop taking the medication.
Personal Development
A crucial aspect is the gradual incorporation of the concept of death into the learning of individuals with intellectual disabilities (Díaz Seoane, n.d.). Ideally, they should not face this issue for the first time when a death occurs but rather have the concept integrated into everyday aspects of learning from early childhood. Situations like the death of pets, neighbors, distant relatives, historical figures, movies, among others, can be utilized for this purpose. Díaz Seoane (n.d.) refers that if a loss can be foreseen, such as due to a prolonged illness, it is advisable to involve the person in the process (hospital visits, communication of the illness) so that they understand that aging or getting sick are parts of life and can integrate it into their knowledge.
It is highly useful to assist the mourner in constructing a new identity apart from the deceased (Díaz Seoane, n.d.). Initially, it is challenging for them to adapt to a world where the deceased is not present, so they should be helped by keeping in mind that although there is a before and after the death, many things change, and it is difficult to return to being the same as before the loss. According to Díaz Seoane (n.d.), it should not be overlooked that, at times, this new construction, initially perceived as threatening, can become an opportunity for autonomy, personal growth, expanding social contacts, taking on other responsibilities, and much more.
Inclusion
It is important to include individuals with disabilities in the farewell rituals specific to their culture (Díaz Seoane, n.d.). It is not mandatory for them to attend funerals or similar activities, so if the mourner can decide whether they want to attend or not, it is crucial to ask and allow them to make a decision freely. However, if they cannot make a decision, the primary recommendation is to involve them as much as possible. Their mere presence contributes to their understanding of the process. If they decide to attend, it is necessary to explain to them in advance the details of what they will see and hear, as well as the reason for the rituals and the reactions of people. If this is not done, the impact can be significant, as there are many misconceptions about what a corpse, a coffin, etc., look like. Therefore, according to Díaz Seoane (n.d.), they should always be accompanied by someone very close to them with whom they feel safe, or they can see the corpse and have a moment alone with it.
If they do not wish to participate in any ritual or see the corpse, it is crucial that they do not feel guilty under any circumstances (Díaz Seoane, n.d.). It is also advisable to anticipate important dates such as holidays, birthdays, and celebrations, and clarify how they will be affected or which customs will be maintained and which will not. Likewise, it is indispensable to ask the mourner how they want to spend those holidays and what things they want to keep. It is beneficial to promote outdoor activities and acquaint them with different leisure activities they can participate in and enjoy. At this point, according to Díaz Seoane (n.d.), it is crucial that the primary care physician of the person with intellectual disabilities is informed of everything and helps them take care of their basic health needs.
Interpersonal Relationships
Interpersonal relationships encompass aspects such as intimacy, affection, family, interactions, friends, and support (Díaz Seoane, n.d.). The perceived level of support plays a fundamental role in these processes, as it contributes to stress reduction. This factor is important to consider, given that prolonged grief can, at times, isolate the mourner from many social relationships (Díaz Seoane, n.d.). The presence of a companion often facilitates adaptation to life without the loved one and the expansion of social relationships (Díaz, 2015). After a loss, it is crucial to listen to individuals with intellectual disabilities, providing them with the time they need in a welcoming and familiar environment and allowing free emotional expression (Díaz Seoane, n.d.). According to Díaz Seoane (n.d.), special attention will be given to anniversaries, promoting their commemoration, especially the first anniversary of the death.
It is important to remember that the family is the best support during these times, being a period when families come together and unite (Díaz Seoane, n.d.). It is essential to assist them in maintaining contact with their loved ones and friends, carefully attending to their individual needs, as they may seek companionship at times while preferring solitude at others. Family members and friends who can, should dedicate time—speaking is not necessary, but some sincere gesture of affection is beneficial. According to Díaz Seoane (n.d.), physical contact has great power, but it can also become cold and routine, so it should be given when sincere.
Self - Determination
Self - determination encompasses all aspects related to guiding the person towards autonomy and assisting them in making changes or choices in that direction, such as setting goals, making decisions, and having personal control (Díaz Seoane, n.d.). One of the goals should be for individuals with intellectual disabilities to learn to live in society and navigate it appropriately. It is essential to reflect with them on actions to take after the death of a reference family member, such as will registration, appointing a guardian if necessary, and registering as job seekers. This is closely linked to acquiring skills to perform daily tasks such as shopping, cooking, cleaning the house, making their bed. Therefore, according to Díaz Seoane (n.d.), it is beneficial to teach them these tasks, initially with supervision and gradually allowing them to do them independently.
It is important to promote self - esteem and self - concept, ensuring that it remains solid after the death (Díaz Seoane, n.d.). It is necessary to communicate the truth about the death of the loved one to them. In case of questions for which there is no answer, they will be informed that the information is not available. Additionally, they will be helped to make decisions, especially in the stressful context of loss, where it may be difficult for them to decide whether they want to attend the funeral, burial, funeral home, or hospital. It will be assessed whether they need support to implement these decisions and if they are able to communicate them to the rest of the family or the people involved. In this area, it is crucial for the person with intellectual disabilities to understand their own emotions and feelings, be able to clarify their thoughts, and act coherently with them, understand their rights, and assert them. According to Díaz Seoane (n.d.), they must know that their opinion is important and will be valued.
How to Communicate a Death?
Early communication of the news is crucial, selecting an appropriate setting and using simple and sincere words, with direct terms such as "death" and "deceased," avoiding euphemisms (Díaz Seoane, n.d.). The person responsible for explaining the situation should be someone close to the grieving individual, capable of discussing feelings and emotions, while also providing the silent support that the person with intellectual disabilities may need. It is important to explain how the death occurred, the causes thereof, using expressions like "was very, very ill" or "suffered a serious injury" in the case of an accident. In accordance with Díaz Seoane (n.d.), the reason for the death should not be concealed, as they will eventually find out, and it is preferable for them to learn through the primary caregiver, avoiding clichés in explanations.
If the person uses alternative communication systems, it is beneficial to use their same system or even have visual support or aids for that moment (Díaz Seoane, n.d.). The cognitive age of the grieving individual should be considered to tailor the language used to it, ensuring they understand as much information as possible, as well as the repercussions the loss will have on their life. Finally, the incident should be reported to institutions that are regularly involved in the person's daily activities, such as their school, occupational center, leisure center, educators, healthcare personnel, among others. In line with Díaz Seoane (n.d.), it is crucial for these institutions to be aware of the death and its implications for the grieving individual's life, so they can assist in both emotional expression and the daily adaptations they may need.
References
Díaz, P. (2015, febrero 19). El Duelo en las Personas con Discapacidad Intelectual. Fundación Mario Losantos del Campo. https://www.fundacionmlc.org/duelo-y-discapacidad/
Díaz Seoane, P. (s. f.). Hablemos de Duelo: Manual Practico para Abordar la Muerte con Niños y Adolescentes. Fundación Mario Losantos del Campo. Recuperado 2 de marzo de 2024, de https://www.fundacionmlc.org/wp-content/uploads/2018/12/guia-duelo-infantil-fmlc.pdf
Hernández, A., Panzano, A., Romeo, J., & Ledesma, V. (2014). Guía Práctica de Duelo Para Personas con Discapacidad Intelectual. Fundación Aragonesa Tutelar. http://www.cop.es/uploads/PDF/GUIA-PRACTICA-DE-DUELO-PARA-PERSONAS-CON-DISCAPACIDAD-INTELECTUAL.pdf
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