Nearly 50 million people worldwide suffer from dementia. According to current forecasts, by the year 2050, this figure will have tripled.
The identity of the person with dementia
Flavia Caretta[1]
Introduction
Nearly 50 million people worldwide suffer from dementia. According to current forecasts, by the year 2050, this figure will have tripled.[2] Dementia represents one of the most arduous challenges of medicine, due to the burden of care it involves and also because of its consequential economic costs.
It is also a challenge under the ethical aspect of respecting and recognizing the value of a person who is in a compromised state of health.
In fact, a vision of dementia is often shared as a pathology that cancels the perception of one's own life and leads one to live in an eternal present, without a past, and without a future.
Certainly, the progressive deterioration of the brain and the resulting functional impairment determine substantial changes in the patient's personality.[3]
Family members suffer as they carry on the difficult emotional bonding, which has become a real sense of loss. Dementia not only involves disability and dependence on the part of the sick person, but it also causes profound negative effects on the family and on the operators.
In fact, parallel to the progressive impairment of memory functions, a situation of spatial disorientation occurs - the patient no longer recognizes the environment in which he or she is in – he or she may also have temporal disorientation; and the phenomena of "misidentification" (e.g., exchange their family members for other people or even for strangers).
This generates in the patient, right from the start of the disease, serious psychological suffering: from anxiety for the future connected to the fear of dependence and the loss of autonomy and decision-making capacity to existential disorientation due to the progressive difficulty of "recognizing" oneself and to "recognize".
Whenever faced with the patient's difficulty in communicating, a caregiver often attributes this automatically to the disintegration of logical procedures, reinforcing the belief that a person with dementia is unable to express not only needs, hardships, desires, but also feelings and emotions.
Therefore, it follows that the demented- especially in the advanced phase of the illness - is considered like a "nonperson", an "empty shell", with respect to which no possibility of interaction exists anymore.
Personal identity and dementia
Personal identity is, therefore, a peculiar problem in Alzheimer's disease. In the absence of shared knowledge and understanding, there is a risk of having the person experience more acutely depersonalization, loss of independence, social and political rights.
Several questions arise:
- What is known about the identity of dementia patients?
- What skills are absent and what skills are intact?
- Do people with advanced dementia still have desires and wishes?
- Does the absence of emotional attitudes mean that they are incapable of feeling emotions?
- Is there still some kind of interrelationship?
Personal identity is a complex concept.[4] In order to determine the interrelationships between biological changes, personality factors, and psychological aspects, it is necessary to do an evaluation from a subjective point of view, in addition to the traditional assessment methods. In fact, the degree of impairment presents a wide range of individual variability, independent of the severity of the disease.[5]
Difficulties in communication become more evident as the disease progresses: the person is increasingly unable to express his needs, language disorders are present as well as sensory deficits.
Considering the different communication channels, it is known that the verbal aspect least represents communication, whereas components linked to the body and to the tones of voice predominates instead. The two linguistic forms: verbal and bodily, are inseparably linked to each other. However, it may happen that the combination of the two languages does not coincide in a harmonious relationship, indeed sometimes one may deny the other.
To be effective in communication an important strategy is to make the different communication levels congruent. This is fundamental for creating and maintaining true inter-professional relationships of acceptance and mutual respect and is also the main tool to sustain a person with cognitive difficulties over time.
The absence of verbal relationships does not necessarily affect the quality of the accompaniment.
In fact, the term "reversible deterioration" should be kept in mind. It is an expression that indicates the percentage of disability not directly related to neurofunctional damage, but rather to the interaction between patient and environment.
If it is not yet possible today to radically alter neurological damage, it is possible, however, to modify the relational context so as to reduce the suffering of the sick person and, in part, even the deterioration of their functional deficits.
The improvement of the living environment, understood above all as a relational "climate" - although it probably will not affect the biological duration of the disease – would certainly prolong and improve the quality of life of patients and families. Therefore, it should be considered as one of the few truly therapeutic results obtainable to date.
The research conducted by Tom Kitwood,[6] a British psychogerontologist, considered among the first to have tackled dementia starting from the person and not from the degenerative pathology, dates back to the early 1990s. With the term "malignant social psychology" he described the different types of devaluing and stigmatizing interactions in caring relationships, which can undermine the psychological aspects or even the profound identity of people. Although often unintentional, these interactions are however very common, even if they cause profound damage in the context of care, especially with people who have difficulty in following verbal contents, since they elaborate such messages at non-verbal levels, which greatly condition their quality of life due to the negativity of the atmosphere that surrounds them. The influence of personality relationships has also been studied later by other experts. In particular, it was highlighted that there are episodes that reveal self-awareness, especially in the presence of "involving" relationships with family members and professional operators even in people with advanced dementia.[7] Conversely, task-centered relationships, with difficulty in the care relationship, increase psycho-behavioral disorders that occur in 80-90% of patients with dementia. These non-cognitive symptoms are of various types: hallucinations, psychomotor agitation, verbal and physical aggression, alterations of the sleep-wake rhythm, etc. These symptoms represent the "non-verbal" manifestation of an underlying discomfort.
It should be remembered that personality is not influenced only in a one-way sense. The same people with dementia are active agents in the care process, gaining a certain degree of awareness and thus allowing them to achieve reciprocity.
The person with limited cognitive abilities may still be able to express choices and preferences consistent with his reference values. It must be considered that therapeutic and relational needs are also expressed through gestures, posture, facial expressions, volume and tone of voice, and behavioral disorders. It is necessary for the caregiver to adapt communication to the functional level of the assisted person in order to understand them.
Can the body be a form of communication when verbal and emotional relationships become difficult?
Care relationships are imbued with corporeality; therefore special attention must be paid to body expressions.
When cognitive abilities are lost in a person with dementia, it does not mean that the body knowledge developed during life is also lost.
The past speaks in the face, in the gesture, in the way of sitting, eating, in the gait, in the word, in the voice. The body also lives on memories. Above all, it is habits, which are nothing more than forms of preservation of the past.
Therefore, there is the possibility of knowing and interpreting the preferences of persons with advanced stage dementia by means of bodily communications. Moreover, non-pharmacological therapies are generally based on these beliefs.[8]
Personality as a social status
In order to avoid a negative climate of the care environment, it is important to consider that personality is a "status" given to a human being by others in the context of certain relationships and social rules, which requires recognition, respect and trust, and that it is not just exclusively related to the cognitive function. The personality could be defined as "socially constructed interactions with the environment".
However, as an indispensable prerequisite for a treatment that is really centred on the person, rather than on the illness, it is necessary to shift one’s gaze from the deficit to the person. Don't look at dementia, but at the person who has dementia, one different from the other with regards to the evolution of the disease, the symptoms, the behaviours, and their own autobiographical history.
Therefore, it is necessary for formal and informal caregivers of people with dementia to acquire an educational strategy that promotes learning and the development of communication skills. [9]
A study based on the training of specific communication skills strategies showed not only an improvement in the quality of life and well-being of patients, resulting in increased positive interactions but also a positive impact on the caregivers themselves.[10]
Spiritual aspects and dementia
There is a growing interest in recent times in spirituality in the field of medicine. In an article published in the Lancet way back in 1997, it states that "spirituality is the forgotten factor in medicine and it is hoped that it will be included in the curriculum of medical studies".[11]
Currently, attention is being paid to the spiritual dimension as an integral part of high quality of assistance,[12] so much so that it is proposed to consider spirituality as one of the patient's "vital signs", which must be constantly evaluated and cared for. [13]
If personal identity includes emotional, behavioural, cognitive and value aspects, in these are also included the spiritual ones.
What relationship could be assumed between identity loss, spirituality and dementia? Can spiritual identity be threatened by the dementia process? It has been observed that, while cognitive abilities decline, the possibility of experiencing feelings and emotions remains.
For example, for those who during their previous lives frequented the church, offering the possibility of participating in religious rites could constitute a reminiscence therapy, a multisensory approach, and could favour a sense of belonging in the person. Therefore, it can be said that spirituality and religion are categories that do not cease, and that they deserve to be cultivated with respect for the person. The balance of spiritual needs should therefore not be considered optional, but an important strategy in a comprehensive care plan.
Conclusions
Personality is the product of relationships with others and can be improved or worsened based on how it is valued or depersonalized.[14] Trying to understand the complexity and quality of these relationships adds further insights into the lives of people with dementia.
Pathology cannot destroy - it can perhaps opacify - the psychological and spiritual components that characterize a human person.
People with dementia think, communicate, remember, understand and express feelings and self-awareness, they convey an interpretation of life and a personal narrative story.[15]
This requires respect for the person’s subjective experiences, perceptions and inner world.
By guaranteeing freedom of verbal and non-verbal expressions, recognition of desires, reappropriation, even if it is just temporary and illusory, of significant experiences of the past, one discovers how important it is to respect and favour the continuity of each person’s identity.[16]
[1] CEPSAG -Centro di Ricerca per la Promozione e lo Sviluppo dell’Assistenza Geriatrica - Facoltà di Medicina e Chirurgia “Agostino Gemelli” - Università Cattolica del Sacro Cuore, Roma
[2] The Lancet Commission. Dementia prevention, intervention, and care. www.thelancet.com Published online July 20, 2017 http://dx.doi.org/10.1016/S0140-6736(17)31363-6
[3] Ref. Comitato Nazionale Bioetica, Le demenze e la malattia di Alzheimer: considerazioni etiche. 2014
[4] Howorth P, Saper J.,The dimensions of insight in people with dementia. Aging Ment Health 2003;7(2):113-22.
[5] De Vanna M., Carlino D., Aguglia E. Conceptual and Interpretative Aspects of Insight in Alzheimer’s Disease. Journal Psychopathology 2005;11(1)
[6] Ref. Kitwood T., Psichoterapy and Dementia, 1990
[7] Smebye & Kirkevold, The influence of relationships on personhood in dementia care: a qualitative, hermeneutic study. BMC Nursing 2013;12:29
[8] ref. Dekkers W.J.M., The human body, in H.A.M.J. Have & Gordijn B. (eds), Bioethics in a European Perspective, 2001.
[9] Kim S.K., Park M., Effectiveness of person-centered care on people with dementia: a systematic review and
meta-analysis. Clinical Interventions in Aging 2017:12 381–397
[10] Eggenberger E. Communication skills training in dementia: a systematic review of effectiveness, training content, and didactic methods in different care settings. Psychogeriatrics 2013;25(3):345-58
[11] Firshein J., Spirituality in medicine gains support in the USA. «Lancet» 1997;349:1300.
[12] Sulmasy D.P., Spiritual issues in the care of dying patients: "it's okay between me and God". Journal of American Medical Association 2006;296(11):1385-92.
[13] Sulmasy D.P., Spiritual issues in the care of dying patients: "it's okay between me and God". Journal of American Medical Association 2006;296(11):1385-92.
[14] Chenoweth, L., King, M.T., Jeon, Y.H., Brodaty, H., Stein-Parbury, J., Norman, R., Haas, M., & Luscombe, G. (2009). Caring for aged dementia care resident study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: A cluster randomized trial. Lancet Neurology, 8, 317-325.
[15] Cristini C. (2012), Coscienza di sé ed espressione creativa nella demenza, in Cristini C., Cipolli C., Porro A., Cesa-Bianchi M. (a cura di), Comunicare con l’anziano, Franco Angeli, Milano 2012: 189-215 2012
[16] Gori G., Demenza: malattia delle perdite, ma anche della persistenza di spazi mentali significativi. Psicogeriatria 201;1:21-26
